So, I’m not sure how long I’ve had pernicious anemia, but my weird symptoms started in January. I wasn’t tested for b12 deficiency until June! I was diagnosed with fibromyalgia by a rheumatologist (no blood test, told me tight muscles and insomnia were fibromyalgia), a neurologist didn’t know what I had (and didn’t do a blood test), and my family doctor thought I was anxious and a hypochondriac.
I am writing about it because I researched my symptoms obsessively for months and never came across a detailed description of what I was feeling. I always came across those overly vague and generalized pages that didn’t sound like what I was going through. No one mentions the veins, but they were one of my first signs!
Note: autoimmune diseases and thyroid disease put us at increased risk for B12 deficiency! If you feel tingly or “different” it might be worth it to ask your doctor to test your levels. 300-400 is borderline and you should start supplementing. Under 300 will cause symptoms and you should be treated immediately. If you’ve lost blood or had surgery, make sure you’re tested for B12 and anemia right away, symptoms or no symptoms. I also now think I have adrenal insufficiency! Too much cortisol (from stress) causes vasoconstriction, which can lead to numbness. Too little cortisol (adrenal insufficiency) causes widespread vasodialtion!
When my family doctor finally tested my levels, my B12 level was 115, I was severely anemic with extremely low ferritin, and hypocalcemic. After 2 weeks of supplementation, these were my blood results (green numbers are better than the red ones):
- Calcium: 2.15 up from 2.08 (2.15-2.60)
- B12: 215 up from 115 PMOL/L after B12 injection (>200, although most recommend over 400)
- Anemic (low iron),
- hemoglobin: 113 down from 117 G/L (115-165)
- hematocrit: 0.33 down from 0.38 L/L (0.37-0.47) &
- RBC count: 3.46 down from 3.7 (3,8-5.8)
- Ferritin: 13 up from 10 (11-145 UG/L)
- MCH: 32.6 up from 31.6 (27-32) (macrocytic)
- Low Albumin 34 down from 36.0 G/l (35-50)
- Low Creatine: 52 up from 46 UMOL/L (60-115)
- High ESR (inflammation): 20 down from 34 MM/H (0-12)
My main symptoms were numbness and tingling. However, some of my own weirder symptoms included:
- I actually think the weird sleep patterns were my first sign. I would wake up every night at 3am. Eventually I wouldn’t be able to nap despite extreme fatigue and would wake up a thousand times at night. Currently, I get hot flashes and sweating at night – I’ve always been cold at night so this is totally new.
- Tinnitus: I would read before bed and would often notice ringing in my ears
- Mild incontinence. Sudden urges to pee with mild “leaking”, even before the tingling started.
- Suddenly, I had right-sided numbness and tingling and muscle spasms. First my right thigh, then my right jaw, with tight spots on my right neck, left trapezius, and right side of my middle back. I wasn’t in much pain at first. It was mostly numbness
- Bright blue, tender, swollen veins throughout body, especially chest, thighs, hands and feet. This was one of my first signs that started around the same time as the numbness. Perhaps related to elevated homocysteine levels caused by low B12. (Big, blue, tender veins)
- Diarrhea that came and went in bouts (of weeks or months). The first two months of symptoms I had watery stools every day.
- Complex/silent/hemiplegic migraines – a wave of numbness in my face, thigh, or stomach for 15 minutes to 2 hours. During this time the area would be very heat/cold sensitive. After it was over I would have a wave of chills and severe headache and fatigue.
- I would often crash at 7pm at night. I never really slept soundly, but would lay in a comatose-like state. At night I would wake up a million times and never felt comfortable.
- I had achy hips and sciatica-like symptoms. At one point I had “heavy leg syndrome”. A massage of my numb thigh made my whole leg ache for 2 days. I shoveled the driveway and got severe sciatica symptoms – pain down my right leg and it felt like the circulation was poor.
- Finally, I had numbness and tingling on both sides of my body (after 2 months of mostly right-sided symptoms). My upper arms and hip/thigh regions were the worst. At times it felt like I had ties around my shoulders cutting off circulation in my upper arms, although my lower arms and hands were fine! It also felt like tight bands of muscle or nerves running down my upper arm. My hips and legs were often tingly. Again, it almost felt like circulation problems and I kept researching “vein inflammation” (mostly because my veins were big, blue and tender from the outset)
- During this time I also had severe photosensitivity, with wavy peripheral vision. Sometimes I would close my eyes and still see the waves. I still need to wear sunglasses even on overcast days. My eyes were very bloodshot. Driving at night-time, I noticed that street lights and car lights looked like flares (almost like when you have too much chlorine in your eyes from swimming).
- My feet are always tender in the morning and it takes a while for them to feel normal. They can feel swollen, burning, or just tender.
- My symptoms are worse at rest. The second I stop moving, everything seizes up. Night time is the worst. Tingling, restless legs, crawling sensations down my arms and legs. Fatigue. Heart palpitations.
- Edema: The areas where I had severe nerve inflammation would be mildly swollen. My upper arms were a little jiggly, like they were full of water. My legs would feel weird to bend because they were swollen and it really brought out the cellulite in my upper thighs. I also noticed it in my right jaw, where I often got severe pain and tightness. I have read this could be caused by iron-deficiency anemia, which often occurs with B12 deficiency.
- I got floaters in my vision
- L’hermitte’s sign: an electrical zap feeling, like you’ve been electrocuted (which is supposedly really rare, but my mom gets it too)
- Muscle fatigue. Maybe it’s the nerve inflammation or the anemia, but my arms would tire blow-drying my hair and stairs were difficult to climb (easily fatigued, not really weak).
- Severe heart palpitations and sudden weakness/light-headedness for apparently no reason. Sometimes it was so severe I felt I could hardly breath despite laying down.
- My mom has also had balance issues and vertigo, as well as brain fog (forgot her own phone number once and couldn’t remember how to get home from work on another occasion)
- Dry mouth: My lips were peeling and I often felt like my mouth was dehydrated
- Course, dry hair that started to fall out.
- Tight calves. I also had muscle cramps in my calves at night. I became hypocalcemic, which I’m sure contributed to this!
- Heartburn and acid reflux. This started of mildly and got worse.
- Weird muscle spasms in my sleep that would wake me up. They wouldn’t be the really painful calf cramps, these were more spastic.
- As my B12 came into the 200 levels, my numbness and tingling moved from my core (upper arms, spine, hips) down to the lower half of of my arms and hands, and my calves and feet, which hadn’t really been affected before the first B12 shot.
- Hives: While I didn’t have this symptoms myself, I have read that it is related to B12 and have a friend with both low B12 and occasional outbreaks of hives. (updated 2012 – I got hives! Not sure if it’s related to low b12, but started getting them several months after this post)
- Severely dry hair and hands.
- Bloating in the tummy area after stress – like seriously jiggly, like I was retaining a bucket of water. Would wake up with a flat stomach but after the slightest stress, would bloat again! Weird.
Other interesting symptoms include:
- If you have an itching sensation on the edge or tip of the tongue, it is one of the signs of Vitamin B12 deficiency. Some people also experience a tingling or stinging sensation. There are others who also have pain sensation.
- White spots on the skin are one of the most commonly found B12 deficiency symptoms. These spots are normally found outside the forearm. It actually indicates absence of melatonin in that area. If this is not treated on time, the spots become raw and flaky, exposing raw skin in the process.
- Sores along the edge of the mouth are another symptom. These sores keep coming back often.
- Nagging pain below the ring finger is also a B12 deficiency symptom. If the pain is neglected, the pain can also start at the outside edge of the palm, at the wrist.
- If you have palpitations even after walking a few steps, but no chest pain is observed, it can be due to B12 deficiency.
- Eye twitching is also one of the symptoms of Vitamin B12 deficiency. The eye twitching generally occurs below the eye or on the eyelid. It is not painful but annoying nevertheless.
- A tickling sensation at the back of the thighs. It usually starts at the hips and moves downwards. If not treated in time, the tickling sensation can turn into pain.
- Memory loss is severe if the deficiency aggravates. In case of a mild deficiency, memory loss is not apparent.
- Migraines can also be caused due to B12 deficiency. There are, of course, many reasons for migraines. In some cases migraines, go away after the patient has been treated for Vitamin B12 deficiency.
- Fatigue is the most common sign of B12 deficiency. At the same time let’s not forget, there can be many other reasons for fatigue as well.
- Deficiency of Vitamin B12 can lead to insomnia. Therefore, while treating insomnia, it is important to check whether Vitamin B12 deficiency has caused insomnia.
- Digestive problems are also caused by B12 deficiency. It actually creates a flaw in the absorption of vital vitamins and minerals.
- Many women complain of irregular menstruation, while there are others who complain of heavy bleeding. It is usually caused due to B12 deficiency. Some cases of infertility have also been observed due to the vitamin deficiency. The deficiency of Vitamin B12 can also lead to male impotence.
- Low platelet count is also caused by B12 deficiency.
Interestingly, studies have reported a significantly higher rate of vitamin B12 deficiency in people with Multiple Sclerosis than in people without MS, which is suspected to be due to problems with binding and transport of vitamin B12 (meaning that the body does not process vitamin B12 efficiently, which makes it difficult to maintain normal levels without supplementation). One study found low B12 levels in the cerebrospinal fluid of people with MS, although their blood levels were normal.
B12 deficiency is also linked to Alzheimer’s and mental illness, cancer and impaired immune function, infertility, Bells Palsy (used in treatment), and heart disease and vascular problems (due to elevated homocysteine levels).
What was my journey like? Check out the blog called Numbness and Tingling on Right side of body. Here’s a brief summary.
The best resource I’ve found so far is “Could it Be B12?” by Sally M. Pacholok and Jeffrey J. Stuart.
Updated July 20
I did a little reading yesterday and I think it helped understand why I’m not feeling great yet, after my first b12 shot. I read that my B12 results are still really low, even after my first B12 shot. I was 115 and extremely symptomatic and sore. Now, after the shot, at 215, I am still really low. My body doesn’t have a) high enough levels, or b) time to heal after the damage yet. So the fact that I’m still achy and weak makes sense, especially since I’m still VERY anemic!
It all started in December 2009. I had a miscarriage and hemorrhaged really badly. I went to the emergency room and had to be put on medication to help stop the bleeding, which lasted severely for a week! I wasn’t given anything to help with the blood loss and suspect I was probably anemic then. I got pregnant 5 months later and when I lost the baby in October, I also bled a lot. During that time I was exhausted to the extreme. I assumed it was because it was my thyroid (I was a newly diagnosed Graves disease patient, although my TSH was normal at this time). However, I started having sleeping issues in August (when my beloved dog died of a rare disease at 6 years of age – I know, rough year for me). I started noticing mild incontinence – I thought leftover symptoms from the pregnancy.
I was on folic acid, which maybe suppressed my symptoms until January when I started with the peripheral neuropathy (originally in my right thigh and right cheek/jaw, with muscle tightness in back , my neck and left trapezius). Muscle spasms can occur around areas of inflammation in order to protect it. I also had many migraines in January and early February – a symptom of B12 deficiency. I asked the pharmacist for something to help with migraines and he gave me b12! I had some kind of neuritis of the eye, with extreme sensitivity to light as well as wavy peripheral vision. The B12 and my prenatal vitamins probably saved me from being even worse off! I got pregnant during this time!
By March I had numbness and aching on both sides of my body and it included my upper arms, near the shoulders. It was so bad I felt like I had no circulation in my upper arms (inflammation and muscle spasm?). but it didn’t seem to affect my hands and lower arms. My hips also constantly ached during this time. It also hurt when someone would sit on my lap. I got thigh tingling frequently. My neck was sore and tight with frequent headaches. My back and traps would get really tight and sore. I had thigh tingling constantly and also in the sacroiliac region. I saw the doctors at least 5 times including a trip to the emergency room. They tested my reflexes and for muscle weakness. I guess my reflexes were fine because no one ordered a blood test! No muscle weakness, although I had really bad photosensitivity in January and February and it started to taper off after that. Even had blurry peripheral vision. I had mild incontinence. Sometimes I would very suddenly feel the urge to pee with slight leakage, but not fully wetting myself. My feet were tender in the mornings and I couldn’t nap despite extreme fatigue and going to bed a 7:00 pm. I never fully felt rested and would wake up constantly at night.
Obviously, I was extremely concerned about the baby. Three trips to an ultrasound clinic showed that the baby looked perfectly normal. I wept with relief and joy at this news.
In May I noticed swelling. It might have happened sooner, but the winter clothes meant I didn’t notice my arms, where the swelling was most obvious. I guess the very low B12 and severe anemia caused this, but it seemed to be around my painful areas – upper arms, back, face, hips and thighs. Maybe the nerve inflammation caused swelling? Not too sure about the swelling except that I had very low albumin levels, which would cause edema! Note, a rheumatologist diagnosed me with fibromyalgia at this time – diagnosis based on bending over and asking questions – no lab work! A neurologist had no idea, but wanted to do an MRI. Since he didn’t think it was life threatening, we decided to wait until after the baby was born in October to do one since I didn’t seem like I was dying immediately.
By June my hips and upper arms were in constant agony and I started having calf cramps at night-time. I’m guessing this is when the Calcium deficiency started to really kick in. One more trip to the doctor, for my daughter, and I broke down crying. During this time she ran a few tests, ruled out rheumatoid arthritis, and lupus, and thought the rest of my symptoms were me being anxious. She kept telling me I was just worrying too much! When I told her I’d have severe heart palpitations at rest, she said it was anxiety. She told me my family was worried that I was worrying so much! When she finally got the results back from my final blood test (6 months after my symptoms started), and it showed all of the things I was low in, she felt bad. She said several times that she didn’t think I was crazy – clearly this is what she thought before! I was even starting to think that I was crazy or dying of some rare disease. Actually, there were many times where I thought I had something deadly and rare. I would flip-flop between feeling okay and other times where I thought, “This has to be some rare neurological disease!” The crazy thing is, b12 deficiency is not rare, nor is it hard to test for. Why do doctors not know about it!
After 3 weeks of supplementation and a b12 shot, I’m still very low in everything and not feeling great yet, but the constant burning pain in my upper arms and hips has died down greatly. I feel it mostly at rest now and am very stiff after sitting. My thighs are still really weak and I have trouble climbing stairs or walking too much, but I definitely feel better than I did! I think all of my symptoms were precipitated by B12 deficiency. Who knew that it could wreak such havoc or be so hard to diagnose! They tested my reflexes in January and February and said everything was normal! What a hellish half-year. Right now, my symptoms include my calves and lower arms (which they didn’t before), but the pain in my upper arms is significantly less, and my hips aren’t as achy and sore.
Hopefully I’m on the mend and will have a healthy baby and delivery. Wish me well!
Updated July 26
Three weeks ago my B12 level as 115. I’ve had a shot a week for the past three weeks. The day and night of the shot I actually feel worse. Not sure what it is that makes me feel that way, but I’m achy and tired and extra tingly. However, a couple of days later I feel much better. I’m still taking oral B12 as well. I want my B12 levels sky-high when I deliver.
My mom has pernicious anemia as well, and has spent her whole life with borderline B12 levels, so that some days/weeks/months she’s symptomatic, while others she’s fine. She wanted her B12 levels tested again so that she could start getting the shot. She came off her B12 supplements for 3 days and was an unrecognizable person – emotional, stuttering, shaky. I am praying her levels were really low so she can finally get some proper care for her condition.
When I got sick, I thought my symptoms were similar to my mom’s, and just prayed that if I ever got “fixed” that I could help my mom figure out what was wrong with her so that she could get treated as well. Doctors always tell her there’s nothing wrong with her when she complains of bizarre symptoms, like Lhermitte’s sign (electrical zap), thigh tingling, insomnia, arm numbness. She was tested in April of this year (which I didn’t know), and her level was 370, but she’s on supplements. Doctor thinks that level is perfectly fine. After reading about B12 deficiency, and just knowing what my mom has gone through her entire life, we’re both convinced that she’s low and will keep her on oral supplements for the rest of her life. It would be nice for the doctor to stop calling her anxious and treat her seriously. She called me anxious too, and my level was 115!
Updated July 28, 2011
After about a month of treatment I feel about 70% better. I’m still really tired and I feel awful after my b12 shots, which I can’t figure out. My lips are tingly lately and I don’t know if it’s low b12 or low calcium. I’m on supplements for both. My endocrinologist put me on 4000 units of vitamin D a day. I heard high D levels could make my calcium levels lower. I have to wait 2 more weeks (or should I say “weaks”) before my next blood test. My stomach feels upset from all of the pills and I’ve actually puked every day this week – my stomach just feels not well. I don’t feel like going to the doctor anymore. I’ll just wait for my next blood test and figure it out myself.
Updated August 9, 2011
Had my 5th b12 shot today. Felt tired, achy and a little nauseous. I’m wondering if the cause of my low b12 is autoimmune gastritis. It could be caused by either the H. pylori bacteria, which is treatable with antibiotics and such. The other is not curable, but symptoms can be reduced with things like antacids and proton pump inhibitors. I’ve been puking lately been having heartburn, too. Something is definitely up with my stomach! Of course, I’m 7 months pregnant right now and my doctors will probably laugh when I tell them my symptoms. “You’re pregnant, dear.” But the cause of my pernicious anemia needs to be discovered and I’m probably the only one motivated to do so. Sigh.
Updated Aug 20
Had my 6th b12 shot yesterday. Again, tired for over 24 hours and nauseous. Tingling in body. Some sore muscles – wrist on left arm (the arm that got the shot) hurts. Muscle weakness. Slept for 5 hours today (2.5 hours in the morning and 2.5 in the afternoon). Terrible headache. Don’t know why b12 shots make me feel so bad. Stomach hurts after I eat anything.
Fatigue and nausea have carried into Monday, Aug 22 (3 days after the shot). Crazy. I wonder if this side effect will last forever, or just until I’m fully recovered from my ordeal. I’ve seen other forums where people experience this same side effect, although it does appear to be rare – lucky me. My muscles have been really tight. I’m taking extra calcium and magnesium right now too. I was hypocalcemic when originally diagnosed, but my numbers had come up into the low-normal range. Still, my calves especially have been on the verge of cramping for the last 3 days too.
My veins are less prominent, but I think the damage was permanent is some areas (my thighs, for example), but it’s only been 2.5 months since I started treatment. My main goal now is to check out the status of my stomach and small intestine. Something has to be causing this. Why not treat the cause instead of throwing pills at the symptoms? Doctors. Sheesh.
Updated Sept 8, 2011
After 2.5 months of supplements, my results are:
- Calcium: 2.20 – previously 2.15 up from 2.08 (2.15-2.60)
- B12: 245 (after 6 b12 injections and daily sublingual supplements), previously 215 up from 115 PMOL/L
- Hematology
- hemoglobin: 109, previously 113 down from 117 G/L (115-165)
- hematocrit: 0.318, previously 0.33 down from 0.38 L/L (0.37-0.47) &
- RBC count: 3.33, previously 3.46 down from 3.7 (3,8-5.8)
- Ferritin: 15, previously 13 up from 10 (11-145 UG/L)
- MCH: 32.8, previously 32.6 up from 31.6 (27-32) (macrocytic)
- Low Albumin 37, previously 34 down from 36.0 G/l (35-50)
- PTH: 1.4, previously 1.2 (1.3-8.2 PMOL/L)
I am hoping that my problem is malabsorption caused by a bacterial overgrowth because it is treatable. I do not have celiac’s disease (been tested for that). Low B12 levels can also be caused by pernicious anemia, chronic pancreatitis, and terminal ileal disease. A combination of low B12 and high folate levels is suggestive of bacterial overgrowth, because intestinal bacteria use vitamin B12 and synthesize folate. I’ve never seen a folate number in my blood test results (I get printouts so I can research it myself!)
I see my endocrinologist tomorrow and am going to beg to see a gastroenterologist, who specializes in diseases digestive tract. While taking 15+ pills a day is fun and all, I am truly hoping to find a cure soon. I am now 8 months pregnant and been symptomatic since January 2, 2011. Should it really take this long to get help? Being pregnant is uncomfortable enough; muscle spasms, tingling, and extra swelling & fatigue certainly don’t help. The calf cramp last night was the final straw. I wonder what I would feel like if I wasn’t so darn anemic?!
Updated Sept 13, 2011
After 2.5 months of supplements, my B12 finally broke the 200 mark (although I did get the injection right before I gave blood, so it’s definitely inflated. My calcium and iron both took a dive this week and the worst part of it all – gall bladder issues! What I thought was mild indigestion is now full blown gall bladder disease – not sure it it’s gall stones, infection, or what! However, I can’t really eat anything without some pain. Very upsetting considering I’m still dealing with all of my malabsorption issues. I still think all of my issues, including my thyroid, relate back to my history of stomach issues, IBS and low stomach acid. So, now I go for an ultrasound of my gall bladder on Friday to see if I have gall stones. When will the craziness end?
- Calcium: 2.08, (previously 2.20 , 2.15, 2.08 (2.15-2.60)
- B12: 729 (had shot right before blood test) previously 245, 215,115 PMOL/L
- Hematology
- hemoglobin: 108, previously 109, 113, 117 G/L (115-165)
- hematocrit: 0.314, previously 0.318, 0.33,0.38 L/L (0.37-0.47) &
- RBC count: 3.25, previously 3.33, 3.46, 3.7 (3,8-5.8)
- Ferritin: 11, previously 15, 13, 10 (11-145 UG/L)
- MCH: 33.1, previously 32.8, 32.6, 31.6 (27-32) (macrocytic)
- Low Albumin 32, previously 37, 34, 36.0 G/l (35-50)
- PTH: 3.0, previously 1.4,1.2 (1.3-8.2 PMOL/L)
Dr. Oz
www.doctoroz.com/videos/vitamin-b12-most-important-nutrient-you-arent-thinking-about
Hi have you ever had your dna checked for mutations? You most likely have mthfr mutation… You should check this out more than 50 percent of people have this and taking folic acid makes it worse… Its worth doing it…
Have you considered going whole foods plant based for the gastrointestinal & inflammation? Also, might want to look into polymyalgia rheumatica (PMR) with giant cell arteritis (GCA)?
I did look into that at one point. There is definitely some gastrointestinal inflammation going on but the diet that helps is no carbs/grains and I can’t stick to it forever. So I live with a chronic but manageable level right now until I figure out the cause. My doctor and I are looking at antibiotics. We wanted to try Rifaximin but my drug plan didn’t cover it. I’ll try another one first before I decide to splurge out of pocket for it.
Hi,
I have little kid age 14 month on brass feeding I dI’d not take any multivitamin after delivery.
Now I have sometimes full body achac but mostly both shoulders and neck pain and stretch all time and pain goes in left arm wrist elbow all the time I feel and sometimes left hand fingers tingling sensation and numbness like heaviness.
And I did massage every two week but not better.
Please can you is it showing weekness
Can you tell me what type vitamin should I take or medicine.
Thanks
I’m sorry I missed this comment earlier. I hope you and your baby are doing well. I will say that breastfeeding wreaked having on my arms, wrists and back. Have things improved since weening? Iron and b12 were the things I was lowest in after delivery, as well as Magnesium and D. Be careful with the magnesium as it’s also a laxative!
Hws u… Hw many times take to cure
.r u feel ur symptms cure 100 percnt..?
Not 100%. However, I took an antifungal (one of those pills for yeast infections) and it helped a lot!!! It feels like there’s a fungal infection in my muscles. So weird.
Hello, you need iron your ferritin is too low and can cause symptoms.Also you need folate in the top level to activate your b12. If you are injecting still you will need potassium rich foods all these will be depleted with jabs. One last thing, if you still have neurological symptoms you should be injecting every other day until no further improvements. Hope this helps you a little more feel free to email me iuf any other questions. Oh your mum should be on injections if she has pa you are at risk of it as she has it. Any b12 testing should be done when you have had 4 months clear from b12 for accurate result. Take care x
Hi Thanks! Great advice. I learned the potassium thing the hard way. Took me a while to find the answer.
Got d same symptoms
Are u ok now
Nope, still have weird symptoms every day but they are more manageable. I took an antifungal and it cleared up (temporarily, they slowly came back) my symptoms. Try one of those pills you swallow for yeast infections (Diflucan or Flucozanole). See if it helps.
Did you get an MRI to strike off MS from your list ??
Yes, thank god. I have a symptoms that feels like the MS hug. Except it’s not a true numbness. I think there is a fungal infection in my back that gives me tingling feeling in the connective tissues. Glad to cross that one off my list as my cousin has MS (fortunately hers has been a super slow progressing kind, but still scary).
Hi, how often do you get the injections now? Also do you take a calcium supplement? I found that calcium deficiency also causes the tingling and other symptoms.
I am doing them weekly or every other week. I was doing them less often and my eczema got worse. When I take it more often it helps with my eczema. Weird, but anything that helps….
Do you still have symptoms now? Everything you described is me now, same symptoms, same conditions even the gall stones and IBS. The tingling in the legs is the worst and I’m struggling to walk I just want to get sorted 😦
I saw a physiotherapist recently and he think it has to do with my back and my vertebrae moving around, which causes muscle spasms and sympathetic nervous response, which in my case, is quite extreme and throws the doctors off with their diagnoses.
Have you checked yourself for leakygut and Sibo. Read somewhere this can cause autoimmune issues
This makes a lot of sense for the cause. I took an antifungal and it made most of my symptoms disappear (temporarily, they gradually came back), but it makes me think that I have a systemic fungal infection (it’s at least in the connective tissues in my back). It also might have been caused by a cystic zit in my back.
Reblogged this on shelljoblog and commented:
So glad you found the ”Bible” Could It Be B12 ?. Have you seen the Movie. ?
Haven’t seen the movie but I do self inject now 😉
Hey are you alright now? I have had a b12 of 90, Its been 20 days since my symptoms started, i m having b12 shots, its been 1 week since i m b13 shots its not improving i feel. any suggestion?
I’m okay, but I still have issues. I’m back to thinking it’s a dysfunctional gallbladder. It could explain some of the b12 issues. I’m still taking b12 shots myself. See if adjusting your diet helps. I know coffee aggravates my issues, but I can’t live without it. Adjusting my diet has helped, but not cured me.
Woah this is so wierd, just had drs appointment this morning for most of the above symptoms but the things like ringing in your ears, waking at 3am and eye twitching really made me sit up whilst reading this, i was waking up at stupid o clock but last week have slept like a log but still very dizzy, numbness/tingling and defo feel like fingers have been tourniquet at times, almost like they are swollen but they arent ! , GP chalked it up to low blood pressure which was low when i was sitting but dropped 20points as soon as i stood up but i did tell him i might have anemia due to bleeding in between menstrual cycle and an operation 4 months ago to remove an ovarian cyst, also told him to test B12 as my mum has pernicious anemia along with thyroid . Also getting an ECG done due to the heart sensations/lack of breath. I have not been feeling great for a long time and have always had low B12 levels when tested but not clinically low enough for the shots. When ive tried supplementing with tablets they made me feel rough so i stopped thinking it wasnt that. Last year actually been better with less bad days until about 2-3 weeks ago when my face went numb on the left and my vision went weird for a week, had it happen before so i ignored it but then the extreme dizziness, memory issues, sore muscles, tense agitated feeling but at the same time seriously fatigued all progressed. Last night whilst laying down in bed felt so rough wasnt sure if i needed to go to a and e, figured if i still felt bad in morning i would get emergency dr appointment. Found this site looking up the possible causes. Its a shame the B12 shots didnt make you suddenly feel amazing, ive read people feeling better after 1 injection. I also have raynauds which is supposed to be autoimmune.
Wow, I can’t believe the similarities. I had to cut out gluten. It seemed to be causing major inflammation. I also had an ovarian cyst that went away. I seem to have issues with epinephrine and norepinephrine, and I’m assuming cortisol as well. I still take b12 shots, but it’s been 6 years this January! My symptoms are so much better than they were but I still get flare ups. I’ve had all sorts of medical tests included ct scan of my kidneys (and adrenals). I’m assuming it’s some sort of autoimmune thing that’s undefined. Or, extreme stress with thyroid issues threw off my HPA axis. My body seems to overreact to all sorts of stimuli, but weirdly my right side is always worse. I get occasional muscle cramps too. My stomach bloating is the worse, along with the puffiness that comes and goes. Eating makes it worse, which is why I’ve seen a gastroenterologist. Been tested for Celiac’s twice – I’m not Celiac, but I totally can’t eat gluten anymore without diarrhea and pain under my right rib cage. Yes, I had low blood pressure when I think is when the epinephrine kicks in. Please message me if you figure anything out. I try to manage my symptoms now. Buscopan (anti-cholergenic) and SNRi’s help out occasionally, but then my body over reacts and I have to come off (usually takes about 1 week or two before my body over compensates). I’m trying gentle exercise. Thank you so much for messaging. Always nice to hear I’m not alone. IF it’s any consolation, I don’t know how old you are, but I’ve had two kids since this started. I do flare up after birth but eventually I even out more.
You really should read up on Lyme disease. Every single one of your symptoms including the labs you posted are textbook for late stage lyme. Homocysteine, low b12, anemia… everything.. .. shocked nobody has mentioned it to you yet. Watch the documentary “Under our Skin” and I guarantee you will see yourself in it. Canlyme.com will also give you excellent resources. North American blood testing is very poor and doctors have very poor ability to recognize or acknowledge it. You will see from the documentary.
Thank you. I have looked into this but doctor dismissed the idea. After 5.5 years I am grateful that my symptoms have gotten better, not worse, although they’re still there. I suspect stress and Graves disease completely through my body out of whack, although one would think 5.5 years would be enough time to get better. I just started Cymbalta (SNRI) again and it does seem to help with some IBS symptoms (gas seems to get stuck up under my ribs. When I take Cymbalta, I can feel it move through my digestive system quickly afterwards. Thanks for your input!
Hello-
I’ve experienced, and been diagnosed, with a variety if auto immune type issues (Fibro, Raynauds, Ankylosing Spondylitis, Meniers (like vertigo, without ear fluid issues), etc., with a “bonus” of Trigeminal Neuralgia aka “The Suicide Disease”).
I feel for you! So many doctors “pooh-pooh” females challenged with the symptoms you described (GREAT detailed records you scribed!!!), I’m not trying to stereotype, but one male co-worker went to a doc for a slight palpitation and he had more tests done for that 1 symptom, it was nuts. Why wasn’t he told he was anxious or over-thinking?
Fortunately I have a terrific doctor who I now see and I truly love that man. He listens to me and asks questions. He is better than my former rheumy.
Sorry for rambling! All in all I wanted to suggest a book by Anthony William aka the Medical Medium.
Between my doctor and altering (most) of my diet, I now take 2 meds regularly with lower doses whereas prior to “firing” my rheumy I was on 6 daily meds and 2 meds “as-needed”.
I came here because I started experiencing the random, crazy enlargement of my veins on my hands recently.
Thank you!!!
Many Blessings for awesome health 🌹
Wow, the big veins on the hands was one of my first symptoms. I still get it occasionally but it’s mostly gone. The index finger is the worst on me. I think when I tweak my neck the muscles spasm leading to a type of thoracic outlet syndrome (TOC). That’s my best guess after all of these years 😉 Thanks for the note and wishing you good health
Hi, I have graves’ and similar symptoms. I also have crazy vision issues. Can we talk? Candi.malburg@gmail.com
Go gluten free anyway… You share the same story. All my celiac tests were negative but since going gf my blood work is fine. Your gut was inglsmmaed snd dloely bleeding. I also had low b12(take shots for pernicious anemia , iron(needed 5 iron infusions, hypothyroidism, pituitary issues and gluten sensitivity including food allergies
You are right. I’ve been GF for almost 2 years now and it’s helped. But recently my symptoms seemed worse again and I went sugar and starch free for 6 weeks and had another major improvement. It feels like there’s a big patch of bacteria or candida in my back as I can feel it “bubbling” after I eat foods. I”m also getting white specks in my poo. I feel like something is dying off, it’s just taking a long time as my diet seems to keep my symptoms at bay but doesn’t cure me.
have you had an mri? your symptoms sound very much like chiari malformation.
I have, thank goodness! They were looking for MS, but I would hope that would be caught. Thanks for the suggestions. I had come across that in my searches as well.
Thank you from the bottom of my heart fot posting this! You have helped me significantly. I just want to add some other symptoms I have had from a B12 def… I have knots, like plantars warts in my hands. They are not plantars warts but nerve damage nodules. I use reflexology and where the nodules are on my hands, is where the nerve damage is located in my body. Also, I went into menopause at 38, with no explanation! I use the VA and for the past 8 years when I would go in with these symptoms, it was blown off…. It is part of menopause, nothing is wrong with your kidneys, you need estrogen for your uretha as it thins from meno(tingling sensations), your heart rate is low, your heart rate is high we do astress test, etc, etc the list is long! I even got, you are being overly sensative… Do you need a mental health appointment. And this was from a female NP! Finally the last symptom, tingling in my tongue, nose and eyes got me an appt with a neurologist for a B12 eval. I KNOW it is a B12 def so I am looking forward to dealing with the nerve damage this has caused. I am praying it is not to bad that I can reverse it.
Again, thank you for your post!!! You have enlightened me greatly!! All the best to you and may you live a healthy and full life!💚💚
I am continually amazed at the number of women who suffer real ailments and are treated as mental patients by their physicians. I just gave myself a b12 shot as my hands started tingling again. Learning how to self-inject has made my life so much easier!
Good luck to you and thanks for the note!
Thank you for posting this! You have helped me significantly!!
I found your article today as I’m currently struggling with processing of B12, and am currently in the process of doing extensive testing, after just finally finding a doctor who would take this seriously, a month ago. I share many of your symptoms – most notably daily tingling throughout my body – which has been here and there for years, and then finally in the past twelve months became a daily – all day – occurrence – which really scared me and jolted me and pushed me to find a more aggressive doctor.
I’m still waiting on my test results and whether there will be a decision made to give me B12 shots or not…so I don’t have a lot of input to share on that – just yet.
But, what I did want to comment on – what really struck me hard about your list of symptoms – was how so many of them matched up identically with those of severe adverse reactions to Fluoroquinolone antibiotics (Cipro, Levaquin Avelox, Ciprofloxacin, Levafloxacin, Moxifloxacin…). Did you ever take any of these antibiotics (any antibiotic with the letters “flox” in the generic version) during the weeks, month, or even year (or two) prior to your symptoms starting?
I, personally, had two severe adverse reactions to Levofloxacin back in 2008, where I was left physically disabled by a few antibiotic pills for two sinus infections while in gradudate school – and was bedridden for three years as a few pills of these drugs oh so slowly worked their way out of my body – and I had many many of the symptoms you describe above during that time – most notably electric shocks and zapping through my hands, fingers, arms, burning sensations and hyper sensitive feet, and more. Once bedridden with nothing to do but lay in bed popping pain pills, wrapped in ice packs for three years, I found hundreds, then thousands of fellow sufferers from this bizarre laundry list of debilitating symptoms, and I learned so much more about what these seemingly harmless most prescribed antibiotics can do to the human body. To this day, I am still dealing with the fall out – a la my screwed up B12 processing – and so much more. I am past the stage of being bedridden by physical disablement – as I was for the first three years – but I am still bedridden a few days a week and lead a VERY limited life now, 8 years later, from the exhaustion I experience from screwed up neurotransmitters, adrenal glands, my gut, and who knows what else.
So, I just thought I would throw it out there, and ask, if you ever, in any proximity to your symptoms starting – it could even be an entire year (or two) earlier – as this class of antibiotics is now known to have the unusual effect of having delayed symptoms up to 1-2 years AFTER ceasing dosage, due to the unique way they work in the body (they actually enter the DNA and fight bacteria by changing the DNA of the body’s cells) were on this class of antibiotics – even one pill (one pill alone can cause severe long lasting damage to those “allergic” to this class of antibiotics)?
I agree with your assessment. My gut is messed up! I think my thyroid issues threw my gut balance out of whack when I went from hyper to hypo to “normal”. I’ve had antibiotics once since my symptoms started for a UTI and it greatly exacerbated my symptoms. I suspect possibly low stomach acid and/or sluggish gallbladder? Maybe just imbalanced gut flora. I find a low carb diet helps, whatever that means.
Thanks for your comment!
Increase protein intake.
I eat lot of eggs, nuts, chicken and steak most weekends. I just don’t think my gut is very good at digesting it, unfortunately.
Same symptoms but now with CONSITANT SEIZURES… DIAGNOISED LAST YEAR… AT THE AGE OF 29. I have read so many posts, so many. This was on the money on how I feel a lot, they call it an aura for me… but not just those things… I mean everything you feel I feel and its not a seizure coming. on. its hard to write about yourself because all you see on here is people writing about themselves… people just want answers or a direction…. we share as all the above: our symptoms, feelings, results… we all look for what someone has been diagnosed with to compare to our own symptoms and results because we also want answers. So I know its frustrating when you write a post, then the person that writes next doesn’t say a word but rambles about themselves.. So while I look for answers, maybe I have given something to someone…. from my problems. ps… this is terrible grammar, punctuation, … holy crap cant believe I am hitting enter without proof reading and making sure I do not repeat my self.. I do that now… its a new thing from my new head lol. I HAD GOTTEN A BONE GRAFT, THEN A 2ND ACL REPLACEMENT 5 MONTHS LATER and 5 months ago, hardware started ejecting itself out of my knee. I had to have surgery right away and I ended up in ICU in Status Epilepticus. I have both epileptic and none epileptic seizures and severe anxiety and PTSD. I get obsessed with answers as I am poked and prodded and have 4 doctors I have to see all the time or I am in the er with a seizure. I have grand-mal, partial, pseudo, abstract, you name it I have had it.. I am told… I have severe memory loss. Then all the sudden in the shower last week I had the vein issue as you described as well. Also, all your other unfortunate side effects.. I take over 5,000 mg of anti epileptic drugs, I have no appetite and gained weight….. appr 20 lbs. since my diagnosis in 2014. I lose and gain weight daily with a range from 7-10lbs … up and down. I had my first acl reconstruction in 2003 but I had a patellar tendon they could use instead of cutting up my right muscle – by the time my ACL 2nd recon was needed to be done in 2014 my “tunnels” had gotten too big and I needed a cadaver bone. Yes I was freaked out. Any way, shoulder 2004, other shoulder 2011, sinus surgery in 2010 and graft as mentioned above in 2014, my left hamstring was removed to put in my left, then hardware removal 4 months after that(5 months ago, making 2 surgeries last year and one this year) The hardware just literally just started popping out of my scar, I thought it was cartilage. I have done this a time or two. it seemed different after another 2 days so I went to my surgeon and he had me in surgery after being cleared from my neurologist, two days later. After each surgery I go to ER and into seizures.. Actually my first seizure was the day after my first part of my acl reconstruction to put in a cadaver bone. Part two, 8 weeks later they put in the acl taken from left leg muscle. I have been in ER after every surgery with seizures but the last time almost killed me. I have some high GFR results and quite a few things high and low there .. and here… I have asthma really bad and eczema so my body is constantly fighting something so it usually doesn’t raise flags. I have over 7000 pages of records for the past year. That is not including the 7 day stay and a epileptic monitoring unit. I snowmobiled back country for 2 years so accepting this was not okay(no matter what you do, things are not easy when it comes to your health). This created the 3 part surgery… but there is nothing I love more than the mountains, my horses and my snowmobile (of course family and friends).. but my independence is gone, which feels good on a brighter look on things because I couldn’t ask for a better family as a support team. Although seizures are harder on people watching helplessly, its not fun dealing with the after mass of a seizure.. … you wake up and feel like someone ran over your head and have no idea where you are. I have seizures all the time, not just at surgery now. I started having several kinds of seizures, the other surgeries just triggered an even bigger seizure, but the bone graft in 2014 is actually the starting point – but it didn’t just happen after surgery now.. constant headaches, vision issues with lights like you described…. my heart goes to you all and figuring out what is going on, it is a long hard road. I was working on my masters, no trying to figure out how to continue my life with a lot of memory loss, pain, seizures and so many add on’s there is no answer to yet. The MRI’s say every time several t2 weighted cells on right frontal lobe… lesions or white matter in other words. My moods are horrid and flip like a switch. Now I get so mad I just pop off. I feel like I usually have a constant headache in my eyes and forehead. I cant remember what I am doing half the time, what I ate that day or what day it is sometime and also, some days I cant recall what I did. That’s why, my family is always right there. I have insisted on some space… reluctantly I get it, but get calls all the time. If my fiancé is not here someone is. Now during the day, I stay alone. I lost my license as well. Money is almost gone, I pulled out every penny of my retirement from the government ( my job) , sold my truck, trailer, sled and one horse and a bunch of things I had left…. Now I have ran out of resources and I stay at my mom and dads rental property in the city… staying way up in the mountains with them where there was no service it took longer an ambulance. I pay rent to the best I can regardless of what they said, they have done so much and I am a grown up and can pay rent. They understand short times.. I have a roommate and my fiancé is here. So we make it but now my sold possessions and retirement is gone, so we are getting something figured out to be able to make it over this little hump. I had a few times there was bagging after my seizure. anyway, I do feel for all of you, I know its so hard, I stress all the time and also become ocd about looking up my feelings on the internet and seeing what is going on. This is the closest post I have seen minus blood and urinalyses. But we are not talking about that I suppose.. we are not alone and as said above, we care about our health more than anyone, we pay for services and we deserve answers. Stay persistent and positive. The doctors are really not wrong all the time when they say its okay.. they compare it to everything, blood, age, weight you name it.. ( a good doctor). I have many specialist but my PC is the one on top and getting results and answers… there seems to be none at the moment… so if anyone else knows something or maybe an outcome… let me hear it 🙂 take care my peeps—–Kate
Kate, I have had asthma, weight gain, eczema. I also have had a history of severe neck pain and headaches. No seizures, thank god. I am so sympathetic to your struggle! I am feeling better than I have in 5 years thanks to massage and stretching, b12 shots, and a low carb (high veg) diet. I hope you get some answers or relief. I have no answers, but I’ve had some relief from my symptoms which makes it feel more manageable and allows me the mental strength to move on, although I still have my moments where I’m like, “What the hell, body?!” lol Good luck!
Hi there , I’m 32 years old. I found your blog and I’m hoping to get some answers . Lately I’ve been having this strange tingling like sensation in different parts of my body . I have a daily headache ( with tingling) and also my face gets numb in a certain spot and my leg as well. I get a weird kind of ache ever so often in my bones ( or muscles not sure which one) they have become more frequent in the past week . I’ve been dealing with a foggy: dizzy feeling for years but never got answers from any dr or specialist . It’s not a vertigo type feeling just kinda ” off” .. Even when I go on an elevator when I step off I feel like I’m falling . Anyways , I was tested yesterday for a bunch of things and I’m waiting on the results . This tingling / numbness is rather scary and I’m just hoping for answers soon! I always have very bad anxiety at times , which the un knowing makes it all worse . Also does anyone get buzzing in their fingertips? Best way to describe it is like a tuning fork going off in your hand . Thank you in advance !
It definitely sounds like it could be low B12. Have you had it tested? I have been on a low carb low fat diet for a year now and it has helped my symptoms tremendously. There is definitely something wrong with my digestion. I see a new gastroenterologist in October, but the dramatic improvement in my symptoms with this diet has proven to me that it’s digestion-related. I still think my gallbladder or sphincter of oddi is not working properly but need the gastro to confirm. I still give myself b12 shots about every 3 weeks, but I don’t feel I NEED them as much as I used to. I used to get symptomatic between shots, but not anymore – just maintenance now. Good luck and hope you feel better soon!
Had radioactive iodine for Graves Disease. Still always tired. Numbness, tingling, and nerve pain too. Recently found out there is a defective gene in the family called MTHFR C677T, which makes it extremely difficult to convert Vitamin B into usable form. Same thing with the synthetic Folic Acid—it does not convert. Supplements like Methyl-Cobalamin (B12) and Methyl-Folate are already converted and bio-available. There’s a lot of info on the internet in regards to MTHFR gene defect.
And you are right, doctors tend to overlook the possibility of a B12 deficiency. Considering how important B12 is, I don’t know why they don’t test it more often!! http://www.youtube.com/watch?v=BvEizypoyO0
Hi there! Stumbled on your blog looking for reasons I have a burning sensation on my skin (my wrist) and was surprised to see a pernicious anemia connection. My mom has it so I guess it’s time for me to get checked out.
I did not read through all of the comments, so forgive me if you’ve already ventured down this road. I see you’ve been tested for Celiacs but I was wondering if you’ve been tested for gluten intolerance? We tested our daughter through Enterolab in 2011 and found out she has 2 copies of a gluten sensitivity gene, meaning she got one from her father and one from me. We just ordered our kits the other day to get our full results. It’s $150 plus shipping. One of the genes my daughter had is associated with MG, which is what prompted me to post. It may be worth looking into. If you have a food intolerance, your gut can’t absorb the nutrients it needs because it’s irritating your digestive tract and your body is attacking itself.
If you haven’t checked out Enterolab before, I definitely think it’s worth your while to check them out now. Best wishes!
Thanks for your comment! I gave up gluten this summer after 3.5 years of suffering and have had amazing improvements in my symptoms, most notably a 20 lbs drop in water weight and dropping two pant sizes. Also, the constant gas pains I’d been suffering are now gone, although though those have taken longer to disappear. 3 months gluten free now. My doctor just ordered the complete Celiac’s blood test. I had the simple one before and tested negative. No villi damage, but inflammation in the small bowel.
I’m really glad you’ve found some relief! It certainly makes the potential for me having pernicious anemia less daunting, knowing that you’ve found a decent cure with an adjustment to your diet. I don’t mean to sound selfish there! Lol. I know you’re writing this blog to help others in the same boat, and I definitely appreciate you!
When I was pregnant with my second daughter in 2013, I started to get these bruises and lumps on my shins. At first I thought I must’ve banged them on my van but after 2-3 months of them not going away, I went to the dermatologist to get checked out. My OB thought I was nuts because I told her that I thought it could be Erythema Nodosum but after a biopsy confirmed it, she didn’t know what to say to me. I was supposed to go back in for b12 testing 3 months after my daughter was born but we moved across the country and I didn’t even think about it until now. I guess I was in denial because I was tested for the anti-parietal antigen about 10 years ago and my results came back normal. I did some research and found that taking antacids long term cause a b12 (among other vitamins) deficiency, and I was taking them every night for my pregnancy heartburn.
Do you know offhand if the test results can change over time for that? I think they checked for the intrinsic factor and the anti parietal antigen or antibody. I can go through my papers somewhere to find out exactly what test I had done but I was curious if you know if those test results can change over time or if whatever I had before should stay the same?
If you have celiac testing after going gf the results will not show celiac because you are not consuming gluten..these drs. Need to use google. You must go back on gluten for 6 wks. To get accurate results. Count needs to be > 15 I believe. Google the scale. Lol. I am gf for 10+ yrs. Lost 20 lbs., body aches improved, gi issues better…now have all issues again. Be your own advocate. Have parathyroid checked. 2 surgeries later, some symptoms are worse now.. fibro, d3 low, b12 low….endless search. Still do not go to dr. Often as no positive dxs. Feel better
Thanks. You too!
Hi Graves-gal,
So nice of you to list down all your b12d symptoms. My b12 was 126 when diagnosed. Among all other symtoms the worrisome was the numbness of back. I have not seen anywhere online this back numbness listed as b12d symtoms. My ither side of the back goes numb and it stays for days. With a initial loading dose all my nerv related pain were gone now it’s 3 weeks with no jabs. I am getting this back numbness and burning sensation in upper back and it is sore too. The back pain feeling is like.., when I sleep on my back, I don’t feel comfortable and feels like my back is pushing me upward. How you used to feel the back pain? Did it go completely now?
My back pain issue is still there, but I have found that eating greatly aggravates it. I definitely have some digestive issues too, which leads to low b12 and indigestion/gas, which seems to fill my stomach and along my bra line, particularly on the right side. But I have no stones in my gallbladder. I’m eating a very low carb diet right now and it helps, but I still need b12 shots quite frequently before symptoms start creeping back. I am in the process of switching doctors and am hoping to be taken more seriously. I feel great eating very minimally, and very low carb, low fat (basically salad).
So good to see you reply. It’s hard to describe back pain. It is not that usual back pain you get from exertion. I also feel stomach heavyness boalting constipation before this back pain starts. I also feel the heavyness more on the right side I do have galstones. But this pain is not like classical galstone pain. I have read all you’d posts. For me also it all started with stress, I quit smoking that is when the digestive issues started and now I don’t know if my digestion caused low b12 or my low b12 caused digestion issues. Some doctors know nothing. 4 months before diagnosis I had myself tested for serum b12. But unfortunately I had taken a vitamin tablet with 1500mcg methyb12 and 1.5mg folic acid one day before testing… That may have skewed my b12 to 307.
Mine started with stress too. However, I haven’t been stressed in years but symptoms have never gone away. I think my stomach issues definitely caused everything else, however, when they started, my stomach felt fine compared to all of the other weird stuff going on. I see my new doctor in two weeks and will update the blog to see what she thinks about all of this.
First, I hope you’re doing well! Second, thank you so much for your post! I have tears in my eyes because I finally don’t feel like I’m going crazy. A year ago I started having night sweats and inability to sleep, exhaustion, muscle aches and tingling, and increase in migraines. Oh and extreme water retention. Autoimmune diseases run rampant in my family and I was tested for everything. The rheumatologist said I have fibro (my sister and 3 aunts have it) but I didn’t feel that was right. My family doc ran more labs and came back with very low B12. I was on daily shots and then weekly. I was supposed to follow up with another blood test but life got in the way and I didn’t. About 2 months ago, it all started again. Went back to doc and what a surprise, very low B12. Since I started the supplements, the night sweats have stopped (thankfully!) although sleeping has not improved much (unless I take a sleep aid and I hate that). Over the last year I have found it incredibly difficult to lose weight, and it’s very aggravating. I have long thought I have had a thyroid issue but the TSH levels are always “normal”. Any insight?
I’m doing really quite well, as I suppose I am learning to live with it. I am switching doctors and see my new doc this Thursday! I don’t have gallstones, but gallbladder disease runs in the family. I am noticing patterns with eating. Try eating low fat and see if you have an improvement in your symptoms, especially before bed time. I am a healthy person, always been very active (although a lot less so since this happened). I don’t eat very much, but I do notice that fatty foods makes everything worse. Yes, I feel like I am retaining a ton of water. I also notice pain in my right shoulder after eating, which is much more pronounced now. I find it hard to eat low fat because I think my body is craving it because it doesn’t digest it very well. I am asking my new doc for a HIDA scan. I also have weird sweating on my right shoulder, which I think is inflammation of my gallbladder. I could be wrong,… but it’s worth asking about. I know there is a very strong gut-brain connection. I felt very anxious when this all went down, and I’m not normally (although it runs in the family – my mother and sister!). Once I was convinced I wasn’t dying, and starting giving myself B12 shots, I felt a ton better. I also don’t eat first thing in the morning and that really helped!
Glad you’re doing well! I had my gall bladder out about 7 years ago. Mine was dead and not functioning. Towards the end, I had a hard time eating because everything made me sick. I’ve done much much better since it’s been out. I’ve scheduled an appt with my family doc for Monday. I’ve done a lot of research today and discovered that there is a big link between low B12 and thyroid and adrenal issues. I’m going to see what we can do. I’ve pulled all my labs for TSH etc for the last 3 years from both docs (fam and obgyn). It’s interesting because I see the marked decline in TSH and others that aren’t normal. Anyway, I can’t thank you enough for your post. It was like reading my life for the last couple of years. Hope you continue to manage well and improve 🙂
My mom and her sister also had their gallbladder out and still have similar issues. I have you heard about Sphincter of Oddi? It controls the bile flow from the liver to the small intestine. If it is too tight, then not enough bile gets released, which makes it hard to digest fat, which would lead to low b12. All of my issues started when my thyroid started going into remission. I was fine with too much thyroid! Have you had bowel issues your whole life too? I’d been constipated my whole life. My mom has had diarrhea her whole life. I keep thinking about sphincter of oddi – maybe mine is too tight and doesn’t let enough out and mom’s is too loose and lets too much out. Interestingly, my bowel issues were always fine during my period and I would get diarrhea with stress.
How were you after your gallbladder surgery? Fine for 6 years and then this started? If I need mine out, there’s a procedure they can do to release the pressure on the sphincter of oddi so more bile gets out.
Good luck and thanks for the note. Glad to know I’m not alone with this.
hi graves-gal, so much of what you say resonates with me, nearly everything in fact– i am convinced it is ALL linked altho Western paradigm insists on compartmentalizing everything (only making it even harder to connect the dots ):
Specifically about gallbladder issues, i want to share a ton of info. a friend & i are sharing that journey currently. she’s just had hers removed (it wasnt diseased but did have lots of stones causing bad attacks)
i still have mine and intend to go to my grave intact- GOD Willing!
ive been self-treating my digestive issues for many years, the gall issues for about 2 years now. my friend has had issues with hers for a year & a half.
my gb issues stem from inherited hypochlorrhydria. hers became inflamed (irritated) & filled with stones because her dumb dr’s solution to severe GERD from a hyperactive esophageal sphincter (becoz of major life stress) was to destroy all her stomach acids with chronic overuse of high-potency acid suppressants ie Zantac or Prilosec. (Rather than simply mending the “broken” valve in her esophagus!)
Discoveries made throughout this long journey :
a) there is currently a LITERAL EPIDEMIC of gallbladder disease, including MANY very young people (examples: following surgery, 3 of her nurses admitted to having gb issues, 2 of them have allready had theirs surgically removed. All 3 are in their 20’s! Her own surgeon proudly bragged of having removed more than 2000 gallbladders, so far!!) Not so long ago, gallbladder disease was the domain of affluent elderly alcoholics or at least heavy “social drinkers” who had spent their lives overimbibing & overindulging in heavy, rich, fatty foods while ignoring fresh fruits & vegies. -SO WHAT HAPPENED??
b) current Western wisdom insists the ONLY remedy for a struggling gb is to have it removed. (one of her 2 surgeons stated “what do you need it for anyway? Just have it out and be done with it!” -which blew my mind completely) The main function & purpose of a gallbladder is to CONCENTRATE BILE FOR BETTER DIGESTION of difficult foods. Particularly fats. Yet current medical “expertise” holds that a gallbladder is somehow totally optional surplus baggage. “Have it out and be done with it!”
c) LOW STOMACH ACID- from any source or cause- is the taproot of most gallbladder disease! there are many reasons for having hypochlorrhydria, sometimes its inherited (like mine), often there is severe, chronic, emotionally charged LIFE STRESS behind it (ie college kids? nursing students perhaps?), ADRENAL FATIGUE tamps down all digestive function (weak adrenals can be inherited- or caused by severe, chronic, emotionally charged life stress!), POOR DIET causes big problems for many (whcih of course does not apply to health-concious individuals who practice good nutrition!) …and the Number One Cause (drumroll…) CHRONIC USE OF ANTACIDS/ACID SUPPRESSING MEDICATIONS!!! What has been Standard Advice for “acid” “indigestion” after meals for the past 30 years now???
d) in the absence of sufficient stomach acids, bile cannot be concentrated. and without concentrated, highly acidic bile, the gallbladder cannot function properly to promote digestion of fats, nor rid itself of the rest of the sludge that works its way in there. Hence, “sluggish digestion”, “indigestion”, bloating, gas, upset stomach, ibs, eventually nausea, spontaneous regurging after meals (everything comes back up phenomenon), intolerance to first fats, then proteins, then fruit and vegies, “nothing sets well”. Gut flora imbalances, DYSBIOSIS, yeast infections (candida &/or malassezia), the stage is set for H.Pylori & ulcers, or illness from other nasty bacteria or parasites (in the absence of protective healing stomach acid, i contracted squirrel tapeworm from my cat- 😛 -YUCK!!). SIBO becomes a thing. Drs still argue about whether SIBO “exists”… but when your innards are bubbling and gurgling and blowing up like a balloon and everything you eat makes it WORSE- you don’t find yourself doubting its existence, you find yourself hunting desperately for a cure, and plenty of answers.)
e) in the absence of concentrated bile, fats cannot be properly digested. dietary fats are essential for bile production in the first place. SNOWBALL EFFECT!! What has been Standard Advice regarding dietary fats for the past 30 years now??? But Low-fat diets are terrible for the gall bladder! A LOW FAT DIET WILL MAKE THE GALL BLADDER SLUGGISH, SLUDGY, SICK- AND FINALLY STONES & DISEASE AND “OUT OUT OUT!”
f) once the gb is removed, you will FOREVER have diluted bile that makes it forever hard to digest fats. fats will forever make you feel sick. i have heard- havent verified- that some people STILL continue to produce stones. Many people continue to experience the bloating, wind and dysbiosis. The rates of various digestive cancers increase, altho not until years after the gb has been x’d. it takes time for the constant irritation of NOT having a gb to encourage tumor growth.
my friend didnt have much choice in the matter. after more than a year on heavy acid suppressants, her gallbladder had filled with stones which were causing severe attacks. she couldnt do anything to try to dissolve the stones because of the constant GERD/broken esophagus/heavy antacids. All the things which bring health to the gallbladder require acid, or are acidic. She tried but couldnt tolerate any.
on the other hand, i do not have the GERD or mechanical problems with my gut, i just have extremely low stomach acid by heritage. Aggravated by major life stress. So i decided a long time ago- before i even knew about gallbladders!- that what needed to happen for my own recovery and healing was a much lower level of chaotic stress (essential! but tricky!!) and a much higher level of HCL, and DIGESTIVE ENZYMES. i use both as supplements. i also take Probiotics in as many forms as i can find, especially focussing on Fermented Foods such as yogurts, coconut kefirs, lactic acid saurkraut & pickles, kimchee, etc. i have high levels of not-good yeast in my gut which i constantly fight using Kombucha (s. boulardii) and by minimizing wheat and processed sugars both of which seem to fuel it. Bitter Herbs (Herbal Bitters) are a great good friend! So is RAW ACV! and Lemons, Chiles, Cilantro, Garlic- OLE! i take Iodine, emphasize Magnesium foods, & organ meats for B12, VitD, Iron, & other B-vites. i admit im not eager to do the shots- i dont tolerate synthetic supplements well at all. so im wanting to hold at bay through diet, as long as possible.
its been a long hard road, but 2 years ago my gut function was next to nil – no exaggeration. i felt like i was dying… probably because i was. by degrees. i had NO energy, tons of pain, brain fog so bad id lost most of my short term memory. wobbly, shaky, i walked like i was drunk. and my skin was a real mess, id never had acne in my life until i became ill. they called it “adult/ hormonal acne” but this stuff behaved like an infection. they wanted to give me steroids. i refused, trying anything natural i could find instead… i developed rosacea, and unhealing sores around my mouth. nearly every symptom you listed and some others you didnt. i couldnt keep anything down- it just voluntarily came back up. my husband called me a hypochondriac, and a few other things that helped loads. he thought i was neurotic and needed SSRI’s. i wasnt ill becoz i was constantly unhappy! i was unhappy becoz i was constantly ill! had no $$ for drs and suspected treatment would be wretched at their hands anyway– no one in my family’s ever been listened to by them much either. like what you described. but i had determenation, and little kids to live for and to try to be healthy again for. a strong motivator!! i also had a computer, and a modicum of good common sense, and patience to dig until clues surfaced. just like you. and like you, i learned to Listen To My Own Body, and to trust that it generally knows what is needed. i listened plenty to my Maker, and trusted that HE always knows what is needed. and little by little… my health has improved.
i tell everyone (my friend included) not to be too quick to rush into surgery. LEARN EVERYTHING YOU CAN FIND FIRST!!! i say. Dont ever believe anyone- no matter what sort of “expert” is speaking- that there is NO WAY for a gallbladder to recover! So many of these surgeries could be prevented, i am convinced, with patience and essential life changes. I had all the same trouble youve described, all the same symptoms as my friend with the exception of the acute stones attacks. i studied and carefully slowly and patiently worked on my severe digestive issues… and today i would say i have about 75% of my digestive function back. i also have my skin back- no more sores, scabs or rosacea! (credit there goes to Neem, Coconut Oil, and plain ole Baking Soda) it took a long time, a lot of trial and error, but i am testimony that a sickly gallbladder CAN HEAL.
i want to really encourage you– youve come SO FAR through SO MUCH! Thank you for sharing your life stories and your hard-won Wisdom. Hang on to that little Gall Bladder of yours just as long as you possibly can… if it is not diseased to the point of necrosis (as my pastor’s was) but is “only” struggling with sludge, sluggishness, inflammation and perhaps a few stones- there is MUCCH you can still do to regain health and healing for this little organ. Be extremely cautious of “low fat diet” advice- less fat will bring temporary relief of symptoms but cannot bring healing. Instead, do what you can to ramp up your stomach acids and digestive enzymes, so that those troublesome yet ESSENTIAL dietary fats can be properly digested, and thus begin stimulating that little powerhouse to power up again. Raw ACV and Lemon juice and Green Apples are all wonderful things to dissolve sludge and even stones- it takes time but you are not having acute stone attacks yet- you have time to work on dissolving whatever gunk has built up in there before its a crisis. i had the pain in the shoulder blade & under the rib too. its letting you know its got issues… but youve done so much with other big bad stuff- i know you can beat this too!
And check out Earth Clinic- its my favourite go-to site for grassroots advice and personal testimonials on every health problem ive ever encountered. No quacks or wackos, just regular people sharing their experiences, what helped and what didnt. i bet you’ll love this site! i do!! 🙂
Above all, Walk in Beauty- HIS Many Blessings
Thank you so much for taking the time to reply. My mother and I have both said we think we have low stomach acid. I had a barium enema in my 20s that suggested things moved really slowly through my upper digestive system (which I knew from personal experience of burping of foods hours after eating them). Yes, stress seems to make it worse. I’m 3.5 years into “healing” but it’s still an issue and I’m frustrated. Luckily no doctor has offered to remove my gallbladder yet, because I would have jumped at a shot at feeling better. Here’s hoping we both feel 100% in the near future!
Maybe you should check for borelia infection? Most of your symptoms are of lyme disease. And it also gives you low b12 levels…
Hope you are doing well today. You are not going crazy , that is for sure! From you post, it sounds that you have adrenal insufficiency , highly acidic-inflamed body . I spent years being miserable, iron deficient, suspecting hypothyroid and adrenal issues, diagnosed with lupus . Not getting much if any help for conventional medicine. You need to detox and strengthen your body! B 12 as well as inflammation are pointing to adrenal glands . TSH are NOT accurate tests for thyroid function. Take your basal temperature in the morning before you get up , this is going to give you an idea where you are with your thyroid. What is your TSH level?
Also, if you can afford and find an iridologist in your area that would be of great benefit to you. Best to you.
Thanks Joanna. I was under a lot of stress during this time – baby, went back to school, miscarriage, miscarriage, baby #2. However, my thyroid levels have been off too. My TSH is fine – 1-2 range, but my free t4 levels are around 9 and 10 pmol/L (0.7-0.8). I will buy a thermometer and take my temps. Thanks! I also think it’s partially genetic – my mom has had the same symptoms for years (also started after childbirth). Pituitary?
Hello. Do you still believe the symptoms you listed in this post to have been caused by B12 deficiency? I gasped to read this list. Over and over. It is a list of my symptoms. And the first time I have heard tight calves linked with this. My calves were where it all started for me. Checking up because this post is old and you have been blogging since…. Now I have that tingling pain in my hands and feet driving me to insanity along with about three quarters of the things on your list. … Been tested for MS, now they are saying lupus but it doesn’t seem to fit…. Both my mum and her sister have pernicious anemia and I have been anemic for years, and that shows up in blood tests but B12 shows as OK but of course now I’m reading that that may not mean anything. Help! If you’re still there….
Yes, to a lesser extent. I think it’s gallbladder related. Eating fatty foods seems to make it worse and gives me a migraine radiating out from my upper right chest area, up my neck and down my right leg. At first the symptoms were so constant I couldn’t notice any triggers. Now I notice eating is a trigger. I self-inject b12 which helps with the pain this causes. It also seems to come in waves – my back will feel really tight, I will have insomnia, with bad leg cramps and stomach pain, and gradually it will turn to me be bloated and dilated. It’s the strangest thing. I am getting a new doctor in July and I’m interested in getting a fresh start with a new doctor who will investigate the migraine/gallbladder connection. My current doctor thinks it’s anxiety, despite the vitamin deficiencies! Also been tested foR MS and Lupus. Negative to both. No celiac’s either.
Thanks for your reply. Huh. Well I think I will investigate B12 deficiency/pernicious anemia further. I have the white spots on my brain MRI that can indicate some type of autoimmune but they say it is not MS and now I see they can be caused by PA. I have a two numbers on blood tests that say maybe lupus, but the symptoms of B12 deficiency/PA fit way better … I guess it’s worth a try. It’s better than steroids which I lasted two days on, they were awful. I got some B12 and some D, also (capsules), since a friend had an experience kind of like mine it seems, it went for two years and she thinks finally large doses of B12 and D fixed it. Going to ask doc re B12 injections next visit. I have a print-out of my blood tests and it says B12 was tested but there is no result for it there, and doc has not mentioned it as a problem. … So I will ask. I think he will say it is fine etc., but having read some stuff about how the tests can be wrong, I will push. … The white spots on the skin is one of the weird symptoms I have also. I have wondered for a long time where the hell they were coming from. I have them all over my arms and legs, little white spots, the size of pinheads and a bit bigger. That is just weird though, not bothersome per se. Most bothersome atm is the neuropathic pain, the tingling and crawling in feet and hands and both my calves are messed up all the time so I don’t walk well. I have worked around intense fatigue for years. … Just seemed that I had to, fact of life for me. Thanks again for your reply and my best wishes to you and my hopes that you find a road to recovery.
Hi, I just found this post and could not believe that I found someone with almost identical symptoms. Terry has made an excellent point about the MTHFR c677T gene mutations. I have a double copy of that mutation also and my doctor has me taking Foltex (combination of folic acid, B6, and B12). I also have migraines and take magnesium and B2 for that which has helped. (My doctor also recommended Coenzyme Q10 for migraines along with the mag. And B 2, but it made me nauseated.) I have the dry mouth, dry skin, etc. symptoms and have Sjögren’s syndrome. I also have the heart palpitations (Superventricular Tachycardia) and had an ablation which helped a lot, but still have some fluttering and racing, but not as bad.) I have a large cyst in spine (pelvis) which causes my bad sciatica. I have osteoporosis diagnosed when I was 48! I have numbness, tingling, and pains in several areas. No MS or Lupus. I have GERD and take a 24 hour med. for it. Long story short, I have something called Elhers-Danlos syndrome type 3. It explains almost all of my symptoms. I take a prescription strength Naproxen to help with my pain. I saw a genetisis who got me to the right doctors and finally got answers to a dozen years of searching.
My point is that just taking the B12 alone is not the answer. You can get tested for the gene mutation. It is very common as 40 percent of population has this mutation, but for those of us with a double copy, it is much worse of a problem. (One doctor quoted me that statistic who refused to do the test. I mentioned this mutation to my migraine doctor and he right away ordered the testing for it and found it. My sister’s doctor had found it in her and had insisted that she inform our family.) Look up Dr. Ben Lynch’s site for this gene mutation. He has great info. Good Luck to you.
Very interesting. I’ll have to look into this. I do take magnesium and folic acid, but not regularly enough. Thanks for sharing and wishing you well! http://www.stopthethyroidmadness.com/mthfr/
All of your symptoms are of lyme disease, check it out!
I didn’t read through all of the comments and posts to see if anyone else had already mentioned it, but gluten allergies can cause both thyroid problems and vitamin deficiencies especially B12. If you haven’t been tested already, I’d do it because one’s problems would just continue to worsen. And though not all of the damage that is related to gluten allergies can heal, a surprising number of them actually disappear within days of going gluten free.
Thanks Carol. I’m negative for Celiacs. After going into remission from Graves disease, I think my body has been mildly hypo for the past 3 years. I’ve just noticed a small goitre in my neck.
For those with MTHFR or methylation pathway mutant genes, it is more difficult to figure out if one is deficient in B12 or folic acid. Because the tests may show levels are normal, but if one cannot convert and use the B vitamin in question, they can still be deficient. The converted B vitamin doesn’t show up in the blood test. At least I don’t know of a test that does that yet. Hopefully in the future. I think there is one that checks both converted and unconverted B12 at the same time, but it is still trickly to figure it your levels.
There is a whole spectrum of gluten sensitivity…Serum blood tests are extremely unreliable, better are stool tests. I do not have celiac, but I have gluten sensitivity along with Hashimotos (Autoimmune Thyroid disease) along with many, many nutritional deficiencies. The gluten needs to be eliminated to heal nutritional deficiencies and heal inflammation. 🙂
I have the same things doctors but I have been diagnosed with hoshimotos thyrodosis (doesn’t show up on normal thyroid test) and Ehlers danlos syndrome (EDS) .
I have read about EDS, but I’m the least flexible person alive! Good luck with your symptoms. I am finding taking more b12 has been helping, but I can’t seem to keep my levels up! Perhaps something else going on, but I’m functional, for now.
Have you been tested for the MTHFR mutant gene? That my have something to do with having problems keeping B12 up. MTHFR sufferers have trouble with iron levels as well.
Here I am again, Graves-Gal, I just reread your original logs and saw that you had bleeding with a pregnancy. This REALLY makes me suspicious that you may have one or two of the MTHFR mutant genes. Because the C677T variant has problems with miscarriages. Have you ever had problems with blood clots?
Fortunately, no blood clots. I’ve had one miscarriage (right when I got Graves Disease) and I lost a pregnancy due to a genetic issue with the baby. Never been tested for mutant genes, but I’ll look into it. Thanks. I did give birth to two healthy girls who were both a good size (7 lbs 8oz and 8 lbs 8 oz., respectively). I suspect it’s all thyroid related, however, my thyroid is now supposedly “normal” and I still have issues, so who knows. I think I now have pernicious anemia (I’ve had low b12, and symptoms seem to get better when I take more than prescribed. I’ve been lax with my shots and symptoms returned with a vengeance).
You may want to look into the MTHFR mutant gene at Dr. Ben Lynches’ website. As they have trouble absorbing B12.
I was relieved when a coworker found your blog. My B-12 level had fallen to 84. I take 1000 mcg each day, and at last check my level was up to 476. Now I am waiting for all of the symptoms to go away. Sorry to hear that so many of you have a low B-12 problem, but your blog is very helpful.
I am glad you found it helpful and am happy to report I’m feeling great these days!
Thank you so much for this blog,I cried reading your symptoms,I had them all!! And thought I was going mad.
My mother was a hypochondriac and I hated her million illnesses,because of her,Im not a body watcher ,I leave things until they become too troublesome to me.To keep this short…I visited my Doctor the first time because I had trouble swallowing,he diagnosed anxiety,I’m the most laid back person and even my friends a laughed when I told them my doc says I’m anxious! I then went back with tiredness,sore,burning tounge,sore feet,muscle aches,tingling in my hands,I was tested for ruematoid arthritis,this was negative, had really heavy periods,so was given iron pills,what I didn’t visit my Doc for was,memory loss,(I was afraid I had Alzheimer’s) tinnitus,weird brain charges,like a buzzzzz in my brain,hair loss,and twitches,or the insomnia.
The iron pills helped but I still didnt feel right,I just felt ill,in a nutshell I thought I was dying!,Ievery day I would just feel and accept that I was slowly dying,the worst thing was,I wasent worried that I was dying,I just was and that was it.
One day during my heavy menstrual period when I was feeling crap,I researched iron deficiency.B12 came up time and time again in regards to my symptoms,so the next time I went for a blood test for my iron I asked if she would do a B12,she looked at her computor and said”hmm that would make sense as your blood(can’t remember the name) is large)” blood test came back and my B12 level was 90!!! …I was given 3 injections over 6days and now I have them every 3 months,I feel I need them more often,but in the UK we are dictated by the NICE guidlines,my brain fog hasent lifted,my other symptoms have improved hugely,but only for two months at best,then I’m back to the beginning again.no further blood tests have been done since first diagnoses,so I have no idea what my levels are now.when I’ve asked for injections even one week early I’ve been told NO! Your body will want it more! How does that work? Sorry for the lack of grammar,blame it on my brain fog 🙂
Ps…. In the USA how often do you have the injections?
Margaret, please go to the Pernicious Anaemia Society website based it the UK. You should have gotten six injections over two weeks and then one injection every two months based on your neurological symptoms according to the BNF. Some members are able to get injections more frequently through their doctors.
I am in Canada where B12 injections don’t require a prescription and I inject cyanocobalamin daily, though I tried hydroxo for awhile but I didn’t find it was any better (it just cost more!)
At the PAS there is lots of information and a forum filled with helpful people in the same situation as you. They helped me so much!
Susan
The methylcobalamin B12 is best absorbed as those with MTHFR cannot convert the B12.
Also have your thyroid tested (TSH level – should be 3 or less)
I’ve never seen my GP since being diagnosed,,I see the nurse every 3 months for my injection,as i said above whenever I’ve asked for it earlier she’s became annoyed and told me no!
How would I know if I had a problem with my thyroid? And is it connected to B12?
Both thyroid and pernicious anemia (b12) are autoimmune. I never had b12 issues before I had thyroid issues. Worth looking into!
Hi..Thank you for your detailed Blog on B12… I am in mid 30s (male)… my B12 number is 191 and my physician suggested me to take 1000 MCG every day and have a blood test after 6 months to see if everything is normal. from last week I am having the symptoms like Tingling and numbness in my hands and very few other places but no pain. I am waking up regularly around 2:30 in the night having trouble sleep again for at least couple of hours.
I was struggling with lower back pain for last one year and initially the symptoms I have are mostly related to Sciatica and I was completely believed all my symptoms are from my lower back pain. About 1 year back I have a dental surgery and had to take Antibiotics and that completely disturbed my digestive system..I had diarrhea for about 2 months and still my digestive system is not back to normal.. this could be the reason for my B12 deficiency.
Luckily when I explained about my digestive issues with my physician he checked my B12 levels. Is 1000 MCG per day is enough??
All my other blood work came normal including RBC, hemoglobin etc..
What to observe from now on.. I also scared of the reason that once the symptoms like tingling and numbness started they may already damaged my nervous system and I may not get them back to normal..is this true? please advise me. Is anyone out there who had tingling in nerves and got back to normal??
Hi Sunny. My b12 was 115. I had tingling for over 6 months before mine was caught. It took about 2.5 months for me to start feeling normal again, but there was no permanent damage. I would ask for the b12 shot as well, to bring you up faster. I found that the sublingual b12 vitamins didn’t really seem to help me the way the b12 shot did. But yes, I too would wake up in the middle of the night around 3am. What I am seeing is that b12 levels drop after a period of inflammation in the body. I too had diarrhea and back pain. this lasted about 5 months with me. It’s been a slow recovery for me, from whatever initially made me sick/inflamed. Good luck and trust your gut!
Thank you for your prompt reply.. really appreciate your advise. I will request my physician for B12 shots.
Can you still be b12 deficient if you are high in iron and ferritin?
I’m struggling with Severe Graves, and trying to heal t the natural way instead of killing it.
However, I am severely struggling and sicker everyday.
Are you on drugs? I was on PTU and went into remission in 2 years. I felt so much better after 1 week on the drugs. After 2 months, I felt normal. After 2 years, I was normal! Good luck. I now have a normal TSH and have been off drugs for over a year.
I am. It on medicine, I refused the medicine and I refused killing it. I’m in Atenol because my heart rate is through the ruff. I am 26 was just diagnosed with sever Graves 1 week ago. I am trying to “fix” it the normal way. However, I am finding great difficulty with different people all pulling me different ways. I have a goiter and my eyes are staring to pop out and my symptoms are all through the ruff. 😦 I tried herbs and acupuncture and went 3 times and se quit me due to nothing changing. I am so frustrated. Any ideas?
Get on drugs right away! It will help with your eyes because it seems to have an effect on the immune system. Drugs are the only thing that may help with your eyes. I felt an improvement on my eyes right away when I went on the drugs. Plus, it gives you a chance of going into remission. Once your Graves settles down a bit, you can try natural (although, it seems like natural works better for hypothyroidism than hyperthyroidism). Good luck!
I heard you have a 40% chance more of having miscarriages? Also, most people are severely allergic??
I did have a miscarriage. I got Graves and pregnant at the same time. Lost the first baby, but the Graves was really bad and untreated then. I went on PTU and got pregnant, no problem. Had a beautiful baby girl with Graves and then went into remission shortly after she was born.
Not on medicine*
So you think try the ptu? I have been scared to but I don’t plan on having babies for awhile, I’m just scared that if I’m allergic, I only have one choice left 😦 I’m 26 I don’t want to be on a pill he rest of my life, however, I feel like I’m having a constant heart attack… How soon until your symptoms disappeared? Are you still on the pills? Are you still on heart medicine? Did you have issues while pregnant? Like thyroid going up again or preeclampsia?? Thank you!!
My symptoms started getting better right away. I found that I needed to cut my pills in half to start. I took the recommended dosage, but split it up a little. That seemed to help get used to them. Within 6 weeks, I felt totally normal. No issues with my pregnancy (after the first miscarriage when I wasn’t on drugs). My baby was a health 8.6 oz, 1 week late. She’s perfect, if I do say so myself 😉 Now 1.5 years old.
That’s awesome! Cross your Fingers for me! I have pushed it off for a month and spent a lot of money on herbs and chiropractic and acupuncture and fermented food :p I’m going to take the pills with high hopes of not being allergic. 🙂 Are you still on heart medicine?
I will say the first week on drugs was weird – I felt better, but a little off. But after that, everything was great! PTU tastes terrible. You might want to try the other one – starts with M… I’m off all drugs for over a year now. No relapse. TSH is 2.0 and holding.
Awesome!! Thank you!
Thank you and congrats in your own Graves!
One can still be deficient in B12 if tests are normal; this is because some people cannot convert the B12 to a form the body can use. The blood test would show the levels of regular B12 rather than the form that is converted. High levels of regular B12 wouldn’t show if you were converting it therefore absorbing it correctly. MTHFR suffers don’t convert well so ones body cannot use it.
I have had so much blood taken. Would it say b12 or is it under a different name?
It would say B12, but they don’t normally test it. You would have to request it.
Could you still have a b12 deficiency if you are high in Iron and ferritin??
Yes, you can! Absolutely!
How do I check it? A specific blood test?
[…] B12 Deficiency symptoms doctors commonly ignore. […]
I HAVE SAME SYSTOMS AS MOST OF YOU.. EYE,HYPOTHYROID,INSOMNIA COLD HAND FEET HEART PALPS, WAS LOW ON VIT D BUT TAKEN CARE OF NOW.. MY PROBLEM IS TOO MUCH B-12….1025 AND CLIMBING AND TOO MUCH FOLIC SERUM.DR SAID NOT TO WORRY BECAUSE B-12 IS A NON FAT AND WILL PEE OUT WHAT I DON’T NEED. WHY AM I TIRED ALL TIME HEAVY LEGS THEN? ANY ONE OUT THERE WITH SAME PROBLEM?
Yes, had heavy legs and extreme fatigue as well. You should read the “Numbness and Tingling on Right Side” article. Do you have “bloated veins”? I felt like my adrenals were going crazy to maintain my blood pressure because my veins seemed dilated. Not sure what is causing either. Going on anti anxiety meds helped. Weaning off Effexor has caused a return of some of my symptoms. Good luck!
Bridgett, here is a thought. I wonder if those that have MTHFR who don’t convert B vitamins (including folic acid and B12) into a form the body can use may be a problem for you. I have read that you can have lots of B12 in your blood but still be deficient due to your body not converting it so the body cannot use it. I have two copies of the A1298C variant and my doctor uses a special strategy for determining if I am low on B12 considering the blood test will show all B12 in your blood stream including the B12 you are not converting. I think there is a test that shows converted B12 levels, but it is not available here. I wish I knew the name of it. Anyhow it may be worth it for you to look into for more info see Dr. Ben Lynch’s website. Watch the video on the home page.
1) blood serum levels of b-12 do not necessarily correspond with tissue levels, so keep your b-12 levels high via shots and/or sublingual, making sure that u r using methylcobalamin not CYANOCObalamine.
2) for mthfr-ers, either hetero or homo for the mutation, you should be taking methyl-folate not regular folic acid. B-12 and folate work synergistically in order for the b-12 to be absorbed.
3). Must use shots or sub-lingual b-12 if any question of absorption–eg antibodies against intrinsic factor, chrohn’s, etc. those of us with digestion issues (I have antibodies against intrinsic factor) cannot absorb adequate b-12.
4). If you have heart palps from b-12 and/or magnesium deficiency (which is rampant now that our soil has been depleted of mag.), it is insanity and dangerous to merely take beta-blockers, which come with its set of risk, ESP. If palps are from a vitamin deficency. And only a cardiologist, not a gp or internist should be giving beta-blockers once vitamin:mineral deficency has been ruled out.
Also low or high thyroid levels can cause palpitations along with folic acid or B12 deficiencies. Perhaps also Adrenal problems?
1) blood serum levels of b-12 do not necessarily correspond with tissue levels, so keep your b-12 levels high via shots and/or sublingual, making sure that u r using methylcobalamin not CYANOCObalamine.
2) for mthfr-ers, either hetero or homo for the mutation, you should be taking methyl-folate not regular folic acid. B-12 and folate work synergistically in order for the b-12 to be absorbed.
3). Must use shots or sub-lingual b-12 if any question of absorption–eg antibodies against intrinsic factor, chrohn’s, etc. those of us with digestion issues (I have antibodies against intrinsic factor) cannot absorb adequate b-12.
4). If you have heart palps from b-12 and/or magnesium deficiency (which is rampant now that our soil has been depleted of mag.), it is insanity and dangerous to merely take beta-blockers, which come with its set of risk, ESP. If palps are from a vitamin deficency. And only a cardiologist, not a gp or internist should be giving beta-blockers once vitamin:mineral deficency has been ruled out.
Wonderful advice. Thank you for sharing.
Hi, thanks everyone, for the great info on B12 deficiency. I had severe bouts of dizzy spells, such that all I could do for 3 days was sit and be afraid to move in case I would fall. My doctor diagonized vertigo, but as my mom had the same issue and it turned out that she also had B12 deficiency,
I inisited that my B12 leves be checked. It came out to 125. My doctor does not seem to take it seriously, she just suggested I take B12 pills and did not even tell me what strength I should take. I called the receptionist and she said I should take 1000 mcg tablets every day. I was wondering if 1000 mcg daily is too high for me to take or is it good given my B12 levels.
I would welcome all suggestions/information.
To be honest, you should be getting injections until you’re at least up over 300. It took me 7 injections to break the 200 mark. That’s because we have b12 stores in our liver. When that’s depleted, we start getting serious symptoms and it takes a long, long time to rebuilt those stores. 1000 mcg a day is fine, although make sure they are sublingual (under your tongue). If you’re low, that means you’re missing the intrinsic factor that allows you to get enough from your food. You can’t overdose no b12, you just pee out the extra, and since you’re low, you’ll be fine! Good luck!
I do have a thought on that. If you have a MTHFR mutant gene, then your body cannot convert B vitamins well into a form your body can use, so you can become deficient that way too. If one has this mutant, converted B’s are necessary, but don’t take them unless under a doctor’s care. Folic acid and B12 (maybe B6) are ones that particularly get depleted with this mutant gene. I use the converted form of B12 which is called methylcobalamin. Kal’s B12 melts very nicely under the tongue, very quickly.
Hi,
I am beginning to use B12 also to see if it will help (I am mildly deficient according to test). Anyhow there is a Dr. Ben Lynch that has his MTHFR patients start on B12 before anything else. See his home page and watch his video for more information (I have two copies of MTHFR variant A1298C).
He says to start at the 1,000 and use three days. and then 2,000 for three days etc. until reaching 5,000 and hold for however long. IF you feel worse or bad after starting or raising a dose, stop and go back to the previous dose and hold. If you feel bad after just the 1,000, you probably have a mutation and should be checked out thoroughly for various mutations.
Terry
Hi,
I am beginning to use B12 also to see if it will help (I am mildly deficient according to test). Anyhow there is a Dr. Ben Lynch that has his MTHFR patients start on B12 before anything else. See his home page and watch his video for more information (I have two copies of MTHFR variant A1298C).
He says to start at the 1,000 and use three days. and then 2,000 for three days etc. until reaching 5,000 and hold for however long. IF you feel worse or bad after starting or raising a dose, stop and go back to the previous dose and hold. If you feel bad after just the 1,000, you probably have a mutation and should be checked out thoroughly for various mutations.
Wow, I’m sure my doctor won’t check for mutant variations! She already thinks I’m a hypochondriac even though all my problems started after I got Graves Disease. I would love to know though. Thanks for your feedback. I get monthly injections and take sublinguals. Never needed them before Graves disease, interestingly. Even more interesting, my Graves Disease is in remission but I still need B12!
On Dr. Lynch’s site they offer a MTHFR test for $150. It takes about six or more weeks for results. I think the place that you order from is Healthseekers, but you will find info on his site. I wonder if they are giving you shots with methylcobalamin which is the best B12 as it is already converted for the body to use.
Just wanted to give an update. Last July I went on Effexor and found immediate relief of some of my major symptoms. It took a long time to really kick in, but after 6 months I felt almost normal with just a few annoying symptoms left. I thought I could come off Effexor and have been weaning gradually. Recently I got down to 1-2 pills every day or two, and my old symptoms came back with a vengeance!
Crushing fatigue, unexplained feelings of anger, vein pain (upper arm, neck, groin/thigh), swollen fingers, increased thirst, crazy dry hair. It feels like how things started two years ago. I thought I was getting better, but I think the SNRI (Effexor) just kep the symptoms at bay! Frustrating.
Only good news is that at least I have something to help combat it. It’s not a cure, but I’ll take it over feeling angry all the time. It’s so weird, it’s like all of my coping mechanisms vanish and I’m left feeling really, really angry, and fearful of dying. Bizarre, because logically I know that I’m not. I’ve taken a pill and am feeling better already and more energetic.
Sigh
Thank you so very much for this post. I started having some problems with heart palpitations about a month ago. I ended up in the ER and have undergone lots of tests since then. Most of the tests came back negative – very good results. They can’t seem to find the cause of the palpitations but prescribed a beta-blocker to control my heart rhythm. Not happy about that at all…
The only thing out of order in all of the tests was my B12 was ‘a little low’. I was told that this was definitely not the cause of the palpitations. So, researching B12 deficiency and found your post. Holy cow Graves Girl – you are living my life! I am dumb-founded at the number of symptoms that we share – INCLUDING heart palpitations. Of the 28 symptoms you listed – I have 25 and I had most of the ‘other symptoms’ that you listed.
I am excited to start my B12 meds (not enough of a deficiency to require shots) and see if it helps.
I think I am likely going to hold off on the beta-blocker until I see if I get good results from the B12 treatment.
It would sure be nice to NOT wake up at 3:38 a.m. and to not wake up feeling like I was on fire.
Blessings to you…
It’s funny, I have been through so many different hypotheses about my situation that I’m not sure which is a cause and which is a symptom. However, just today I had noticed that a) my feet have been hurting every morning again, b) pins and needles in my legs and arms, c) went to bed at 8:30 pm last night, d) diarrhea.
So, I went and got a b12 shot. Already the pins and needles have stopped and am hoping that my feet do not hurt tomorrow morning. Can this be pernicious anemia, with the other symptoms being caused by possible nerve damage from low B12? I really don’t know, and I’m almost tired of thinking about it (it’s been just over 2 years). Despite improvements in my other symptoms, it seems my low b12 has not resolved on its own, despite its sudden onset. So, this is something I must consider!
I did use a beta blocker in my early days to resolve the heart issue, but later, as it progressed, I was too tired all the time and the beta blocker would have lowered my blood pressure even more. Speaking of which, how is your blood pressure? Do you notice your veins being more prominent?
Best of luck to you! Keep me posted if you learn anything new!
Blood pressure is perfect, as are the rest of my tests – at least as far as I have been told. I hadn’t thought much about my veins being more prominent, however they used to have trouble finding a vein for blood tests and that has changed.
Felt better okay after one dose of B12 (wishful thinking???) but overdid it and crashed.
I am afraid of the beta blockers, I don’t know how I could get much more tired!
Kris I too have been having Palpitations and ended up in the ER last year. I do have two copies of MTHFR mutant but thought I may be B12 deficient. The heart symptoms were a sensation of heat and squeezing from my heart area. The heart would race and pound and squeeze and flutter. Hell on earth. I had to go on a beta blocker. Things are better, but not completely resolved. I have been trying some B12 and gradually increasing it recently. I have some converted B’s that I can take that have just a little 5-MTHFR for the mutant problem. But I am going to wait. I thought it may be taking too much thyroid medicine, but don’t yet what the problem is. I thought I was going to die when I went to the ER, but they weren’t very helpful sadly.
Anyhow just wondering about other symptoms you have had. Along with the heart symptoms, I would feel anxiety and be totally traumatized with the heart symptoms last year. I have fibromyalgia, some numbness, bad memory, drop things a lot, have trouble finding words when talking, sore muscles in upper arms, edema in my ankles, some depression, restless leg syndrome, tingling face and scalp, and tremors, etc.
Hi Terry,
I have no chest pain, just pounding when I exert myself at all.
In looking over the list of symptoms above, I have all on the numbered list EXCEPT 3, 6, 22, and 26. Of the 13 that are below the numbered list I have 9 of 13 of the symptoms.
I was beginning to have some anxiety when we couldn’t determine what was wrong.
Interesting for me that after doses of B12 pills, I already feel better.
Until this hit me about a month ago I thought I was perfectly healthy. All of the symptoms except the palpitations have been with me on and off for years. They were so random and infrequent I never put them together until reading this blog.
Maybe you should check for borelia infection? Most of your symptoms are of lyme disease. And it also gives you low b12 levels…
Graves gal thanks for all your detailed symptoms of B12 deficiency. So often symptom lists from other sources are too simplified and I think composed from those not experiencing low B12 levels. I see myself in almost all your symptoms you have listed. I had been having numerous medical problems for decades particularly this past year when my nights have become hell. Intense hot flashes crushing my chest and heart with squeezing, flutters, and racing at night. The ER was not helpful (like in 1999). I had to go on a beta blocker just to keep from jumping off a cliff. I discovered I had MTHFR mutant variant, A1298C which means one cannot convert folic acid and other b’s into a form the body can use. I realize now between that, taking levaquin, a proton pump drug for three years plus a surgery, deleted what B12 I did have. I just had a test for B12 and I am very optimistic this will show some insight. Besides the flashes and heart palps I suffer from frequent awakening and insomnia recently. I also have many other symptoms like imbalance and constantly dropping things, numbness, breathing problems which are increasing. Tinnitus, leaking, stiff sore muscles and joints, tingling on scalp and tip of tongue etc, etc, etc.
Some symptoms started in 1999. Fifteen doctors later and I am the one asking for the B12 test. Anyhow I hope this is the answer or I may have to eat my hat. thanks again for sharing as sometimes that is the only way we get well.
Terry
It’s interesting, they’ve monitored my b12 levels since I went low and they’ve mostly been okay since. I have read some stuff about cortisol and b12 (http://www.livestrong.com/article/547250-b12-for-low-adrenal-cortisol/) and I think my issues have to do with my adrenals, because everything went haywire in January 2011: blood pressure, circulation, muscle aches, tinnitus, etc… I think low b12 is just another of my symptoms now, not necessarily the cause.
I’m assuming the cause has to do with stress and possibly amplified by my Graves disease, which was going into remission at the time. My mom has similar issues although she’s had the so long she’s stopped thinking about them.
Do you notice that after stress you feel bloated in the tummy area? I also notice it in my upper arms (feel jiggly, when normally they are not). It’s like the adrenals are pumping out extra hormones to make up for something (cortisol?). We also get hot and cold flashes, sometimes right after each other.
I went on an anti-anxiety (Ciprolex/Lexapro -> then tried Effexor). I have drastic improvements after about 4-6 months on them, although weaning is an issue. I was on 150 mg and am down to half that (I’ve only been on them since June 2012).
My mom also gets hot, restless legs. I did for a while, but don’t anymore. Actually, I used to get terrible night sweats. My blood vessels seem to overreact to cold and hot, although better lately. Also seem to get really dry hair and skin at times. I’m talking really dry. At the same time, I could be sweating, which makes no sense.
Anyway, no answers. Just more questions, but I’m feeling quite a bit better these days (thank god). If you haven’t tried a SSRI or an SNRI (selective serotonin reuptake inhibitor or serotonin norepinephrine reuptake inhibitor), I would give it a shot for 6 months to see if there are improvements. I’ve been begging my mom to try them but she says she “hates pills”, which I don’t blame her for, but if it helps…
Good luck!
Terry, I have Graves’ as well and A1298c. Have you found any relief?
Have you considered parasites? The environment of a stressed body is the perfect place for them. Most can go undetected by tests, exams. The tests just aren’t sensitive enough to detect them at times, and doctors aren’t willing to test consistently in a patient suspected to have parasites. Plus, tests don’t even check for all the possible parasites. For example, guardia l. (the most prevalent parasite in America – and perhaps all of North America) wasn’t even tested for 20 years ago!
Parasites are suspected in many of the systematic / vague illnesses so prevalent today. They’re known to cause anemia, lactose intolerance, gluten sensitivity, malabsorption, deficiencies in Vit B12 & D, hormonal disturbances, changes in emotional state, and a whole host of other things. It would be worth looking into at least.
I went for years with awful symptoms, then I finally found an endo who finally treated me for all the deficiencies I had. But I still wasn’t better! Other symptoms lingered, including swollen lymph nodes that come and go (which I was told were due to thyroiditis). After finally being referred to an infectious disease specialist, I’m being treated for parasites. It’s only been about 2 weeks, and I’m already beginning to feel like my old self again!
One last thing, if you don’t already, take a probiotic – one without yeast. It helps heal and rebuild the stomach.
Yes, I had considered parasites (one of a zillion theories I had). I had an upper and lower GI scope in 2012. Apparently I’m all clear, which was also kind of a disappointment, because it meant I was back to square one. Two years after the onset, I’m almost back to normal, but it’s been a long confusing road. Thanks for the info! I’m sure someone else who reads this could benefit from the info. Wishing you well!
Have you considered parasites? The environment of a stressed body is the perfect place for them. Most can go undetected by tests, exams. The tests just aren’t sensitive enough to detect them at times, and doctors aren’t willing to test consistently in a patient suspected to have parasites. Plus, tests don’t even check for all the possible parasites. For example, guardia l. (the most prevalent parasite in America – and perhaps all of North America) wasn’t even tested for 20 years ago!
Parasites are suspected in many of the systematic / vague illnesses so prevalent today. They’re known to cause anemia, lactose intolerance, gluten sensitivity, malabsorption, deficiencies in Vit B12 & D, hormonal disturbances, changes in emotional state, and a whole host of other things. It would be worth looking into at least.
I went for years with awful symptoms, then I finally found an endo who finally treated me for all the deficiencies I had. But I still wasn’t better! Other symptoms lingered, including swollen lymph nodes that come and go (which I was told were due to thyroiditis). After finally being referred to an infectious disease specialist, I’m being treated for parasites. It’s only been about 2 weeks, and I’m already beginning to feel like my old self again!
One last thing, if you don’t already, take a probiotic – one without yeast. It helps heal and rebuild the stomach.
Hi everyone-
I just read this blog including most of what everyone answered. My symptoms started in about 2004. I’m 46 years old now (2013). What I find interesting is that I meet a lot of younger people with many of the same symptoms taking into consideration that I am a busy hairdresser with quite a large clientele with people of all ages. Lots of them have symptoms as well!
I also have a step son who recently came to live with us, and at the ripe old age of 20 started to complain of similar symptoms. I am also not a stranger to vitamin supplementation. I research a lot of things pertaining to health, as I had a father with diabetes, cancer and heart disease. So I do all kinds of health research on my spare time. I’ve been researching for about 12 years now.
A bit about my symptoms. I would come home and lay down because of crazy exhaustion and sleep as if I were in a coma. My whole body had joint inflammation, I have digestive problems, thyroid nodules, muscle spasms, hormone issues (higher estrogen, lower progesterone). A neck nodule that the Dr’s say is just a swollen lymph node (been there for 6 years), but the muscle spasms were the worst. At 38 years old, I had such bad spasms on my right mid side constantly. Now it’s my whole left side. These are just a few of the symptoms. I have quite a bit more, but too long to get into.
The point I wanted to share with all of you is that starting in 2004, I noticed that the sky was being sprayed with long white lines that turned into overcast weather and if sprayed enough, turned into overcast and then into rain. I have been following this since 2004. It is 2013 now (Jan). Back in 2004, there was almost nothing on the internet about CHEMTRAILS. Today you can find a lot on this subject. I believe this can possibly be contributing to many of the symptoms everyone is experiencing. This is not a joke nor a conspiracy theory! Vitamin, mineral and trace mineral deficiency play a huge role in our health, but toxins are also polluting our bodies. Chemicals are in the AIR WE BREATH, WATER WE DRINK, AND FOOD WE EAT. If a human being is being bombarded with toxins and you don’t have the nutrients to keep your machine (body) working efficiently to ELIMINATE the toxins, they accumulate and create tons of problems in the body.
If you want real expert information about this, go to youtube and type in: WHAT IN THE WORLD ARE THEY SPRAYING AND WHY IN THE WORLD ARE THEY SPRAYING. You won’t be sorry and take your supplements. The fruit and veggies they are planting, if not organic is genetically modified, known to cause organ failure and cancer. They plant constantly without giving the soil a rest so the soil has no chance of replenishing itself with what it’s lost and they use CHEMICAL fertilizers instead of natural. They spray the crops with herbicides, pesticides and insecticides. If you are already feeling like your health has been effected, for starters, juice organically while researching. This will give you a jump start on a large portion of the spectrum nutritionally of what is missing. GOOD LUCK!
Thanks for your comment! I share many of your symptoms, especially the muscle spasms. Another interesting point, my mom’s side of the family has a long history of anxiety issues. While I’ve never considered myself an anxious person, I have always noticed my body over-reacts to stress. Even before I think I’m stressed, I’ll have symptoms such as diarrhea, and muscle tightness. My symptoms really flared after my Graves disease went into remission. I think my nervous system does not react to change well. Weak ymadrenals?
Regarding toxins, I do think they have an effect on my body. However, I live in Canada. My symptoms started in January when there would be no crop spraying going on. Definitely something to keep an eye on though.
My symptoms also improved on anti-anxiety meds. I was desperate to try anything at that point, and after 6 months on them, I am feeling almost back to normal, although I do worry about getting off them one day. However, I am enjoying feeling normal(ish) for now!
hi, its me (yellow bird) again… i too feel strongly there is a correlation between the sky trax (around here some of us call them “poison blankets”) and this strange hyperreactivity to life stress. Debra A, i cant believe how much of what you said fits my own experiences… it was 2003 when i first became ill (adjusting to heavy new family demands coinciding with exposure to several viruses in one year) and 2004 when the sky trax became heavy. my mother and i had been noticing these new kind of trails since the late 90s but in 2oo4 they suddenly began appearing very heavily in crisscrosses across the sky- and that was when my dysautonomic symptoms began. (“heavy” lungs, wildly fluctuating energy levels which eventually wore down into 8 years of unrelenting exhaustion, wierd nerve pain, eventually heart palpitations and myoclonus every night)
of course there’s been lots of other factors, i dont believe chemtrails caused everything. but i do believe they have AGGRAVATED all of it.
my older son who has allergies & asthma & also shares many of my symptoms (especially the never-ending fatigue) always feels much worse when there’s been spraying. even my younger son becomes moody and headachy and lethargic those days, much more than other times.
all of us feel MUCH better when we are out in the desert where the air is really clean and we are not exposed to industrial/vehicle exhaust and sky trails.
it is said that there are very high levels of reflective metals in these trails. things like barium, manganese and especially ALUMINUM. tap water is also frequently high in aluminum, as are immunizations and many medications. if you were to google “aluminum toxicity” i wonder how much you might feel resonates? i know i was shocked at what i learned. i really believe aluminum contamination is another important key to our strange health puzzles.
Well I’m betting your shots and supplements are in the form cyanocobalamin, which is unequivocally the wrong form but thats western doctors for you. If you you are infact using this form you need to research it, you’ll find it truly is poisonous! and has to be converted to the active form methylcobalamin which involves a long process ending in a 1% absorption rate of the total consumed, The cyno part is cyanide enough said. The Form of injection you need is methylcobalamin or hydroxocobalamin Request it from your doctor! methylcobalamin is the cure for all, research it!
I have had symptoms for 3 years! Tingling tongue, hands, back. I have been hypo thyroid for 25 years and usually anemic too! Always diagnosed with something other than B12 deficiency! I finally switched doctors and she listened to what I was telling her! I also have two sistes with autoimmune disorders. New Doc ran a blood test and put me on the injections for malabsorption! Feeling better right away but still tingling. Thankfully, no pain. I feel for those with pain!
How did we get to this place where we rely on the Internet and strangers with the same symptoms to help us figure out our condition? Isn’t that what our primary care physicians are for?
I had an upper and lower GI scope to check for malabsorption, but no signs of it. How do your veins look? Mine look distended. I’m not sure what causes this, but this causes low blood pressure, which results in adrenaline rushes (adrenal compensation). I think somehow this is caustoing the low b12. Some sort of dysautonomia, and yes, it runs in my family too (autoimmune and weird symptoms)
Ive just read your blog and thankyou Im not crazy after all. I have very similar symptoms to yours in fact i have most of them. My b12 levels are 132 and they have put me on 100mg b12 a day and im sure its not helping i dont feel any different. When i told the doctor i felt weird and not myself he just put it down to depression along with many other symptoms i have its taken 9months to get someone to take me seriously. Could i ask how long before you started to feel a difference on treatment. Thankyou
My symptoms started January 2011, but my B12 was supposedly “fine” in February (it was “324”). By June it was 115. I think I have some dysautohomia. It’s been nearly 2 years and I’m 85% better. Still have weird sensations in my body. I go through periods of light sensitivity or trouble sleeping (both issues I never had previously). I started getting B12 shots in July 2011 and it took about 8 shots (until Sept 2011) for my low B12 symptoms to subside. Recently, however, I stopped taking the shots (stopped May 2012) and my levels have bottomed out again (by Oct 2012). So, it looks like I need to do this indefinitely. Yes, all of my symptoms were blamed on stress, and while stress might have started this whole spiral, it certainly doesn’t explain it’s persistence for 2 years. I’ve been stressed before and never had any of these symptoms. With that said, I had read that anti-anxiety drugs could help reset the autonomic nervous system (for my dysautonomia), and it has made a huge difference. I started with Cirpralex (Lexapro) and switched to Effexor. Not sure which is better. Worth a shot if you still feel terrible. Good luck!
Hello,
My name is Rob and I just recently turned 25. About two months ago I started getting a specific muscle spasm in my neck. I went to my GP and he laughed it off. About a month after that they were getting worse and started to extend to all limbs and places on my body. I had blood work done that ruled out Lymes, as well as a few other diseases. Of course I initially googled my symptoms and started to freak out fearing MS, ALS. I have never had any health problems before now and it is scaring me increasingly. I can sleep at night, I feel “jerks” that wake me up. I am going back to the doctor tomorrow to have a look at my blood work again to check my B12 as well as other levels. I feel the same as most of you though others around me just don’t understand how I feel and why I am always so worried. It’s affecting my everyday life and I just don’t know what to do. I know I should get checked for MS/ALS but I don’t know if I can afford it at the moment.
The worst part is not knowing, for sure. The second worst part is everyone else think you’re crazy – like who would make up this stuff? I believe my issue was dysautonomia, possibly hyperadrengenic POTS, and the low B12 was a side effect. I recommend splurging for those tests as the piece of mind will be worth the cost. I’ve had symptoms for nearly two years, but I am almost back to normal. The healing didn’t occur until I was convinced I wasn’t dying. The stress makes everything worse. Good luck and keep us posted!
Hi I am experiencing some of your symptoms and I have always been kinda anaemic but I never bothered to see a doctor. I just want to know if when you started your treatment, did you manage get rid of the dry mouth? Thanks and good luck 🙂
It’s been nearly two years since my symptoms started. I am about 75% better physically, but mentally I am closer to 90%! Yes, the dry mouth is better most of the time. Seems to be worse at night/first thing in the morning. Have you been under a lot of stress prior to your symptoms? I was and am sure that it’s the main cause. I believe I had mild dysautonomia (no fainting). Anti-anxiety drugs have helped the most. Even though I wasn’t mentally depressed or anxious, my body displayed so many signs of stress. It was constantly over reacting to stress. I’ve been on an SNRI (seratonin norepinephrine reuptake inhibitor) for 5 months and feel pretty good. Still weird sensations in my body (nerve/vein pain).
After suffering like you did for 5 1/2 years I finally found the book Could It Be B12? An Epidemic of Misdiagnosis. The book was me and I finally knew what was wrong with me after seeing seven useless docs! Have you ever visited the Pernicious Anaemia Society website or http://www.b12d.org? Both these sites have tonnes of information and support. In order to heal you need to get your B12 up to over 1000 at least. I inject 1000mcg cyanocobalamin daily and take 5mg of folic acid, which works hand in hand with the B12, and a B50 Complex twice a day. I also take magnesium glycinate and omega 3 (used by the myelin sheath) twice daily. The people at the PAS are super informed and the most caring people I have come across. I hope you check it out 🙂
It is currently half past four in the morning and I’ve been awake for at least an hour, as is the case most nights at the moment. Having suffered from anaemia on and off for some time now I decided to google whether there was any link between that and the insomnia as I believe I am anaemic again. Your blog was one of the first results to come up and, on reading it, I found that virtually all your symptoms rang a bell with me and seemed very similar to my own. I am making an appointment with the doctor next week to ask to be checked for anaemia again and will definitely ask them to check my B12 levels too. Thank you for sharing your experiences and possibly shedding some light onto my own. X
I am believe that I have dysautonomia, the onset of which started a whole cascade of issues, including gastrointestinal (GI) issues, insomnia, muscle pains (fibromyalgia), dry eyes, ringing ears, sore feet in the morning, and of course, numbness and tingling. There were times I could feel my veins inflating, a creepy crawly feeling, and it was often quite painful. I am on SSRI (anti anxiety meds) which help reset the ANS (autonomic nervous system). Good luck!
Muscle spams can be quite annoying. I would usually take OTC pain killers to manage it. Some light stretching would also do some great stuff on muscle spasms.’;*`”
Thanks again http://www.healthmedicinelab.com/vitiligo-pictures/
This sounds like me even thou my b12 was at 332 talked gp into giving me the shots one a month .Feel ill after them like i have the flu muscle weakness headaches pricking sensation which i thought it was meant to help with some of the burning eased electric shocks in head numbness etc etc i have coeliac disease so more than likely not absorbing felt like i have Ms only had 2 iinjections but dread the feeling now after them going to ask for my potassium to be cheeked .Thanks for the info .hope all we
Betaine is really very helpful because it helps you digest foods faster. I always use this digestive aid. `,;`.
Many thanks http://www.healthmedicinelab.com“>
What is a good range to be in for B12? The range of 200-1100 is ridiculous. Mine was 194 when I went to first doctor with tingling in my right hand. Within days it spread from fingers to entire hand. Followed by stiffness and now it’s spread into parts of my right. Zapping comes and goes down my back and legs and spine. Some days it’s intense vibrations/tingling/electricity through my legs. Scary for sure. Tired, scared, yuk.
Diagnosed with hypothyroid at the same time these symptoms started. TSH = 8.5. D was at 29, Iron at 13% saturation (I think that’s how it’s listed).
Dr. only wants me to take 3 tabs of 1000 mcg methyl B a week. And one B complex a week. Says too much B can cause cancers to grow. I’ve also had 2 shots, 3 weeks apart (because I pushed for them). Currently I take D-3, iron, C, a multi, magnesium, fish oil, and the B’s noted above.
I had an MRI with one lesion found on my brian and now I wait (for a good 6 more weeks) for an appt. with a neurologist as they suspect MS. Don’t want that! I’ve read the B12 and hypo can cause similar symptoms. Did you ever have an MRI?
I am hypo and also have thyroiditis, which I understand is separate from hypo… it’s an auto-immune attacking my thyroid. Thought you’d be interested to know my son apparently has Graves too – though his thyroid levels test fine (lower range). It’s one eye that is slightly larger that brought on the investigation/diagnosis.
Apparently auto-immune is in our genes 😦
Would really love to know if you had an MRI and if you have a solid # for recommended B12 level.
THANK YOU
Hi Shawn,
Apparently autoimmune runs in my family too.
For starters, a good b-12 number is above 500 (Japan considers anything below 500 low). I have also found my energy goes up when it’s above 500.
The hypothyroidism could cause a lot of your symptoms. For me, it’s been 1.5 years since my symptoms started and I now suspect it’s dysautonomia causing my symptoms. My blood vessels seem dilated which causes tingling, poor circulation and light-headedness (POTS). It’s getting better although still symptomatic. At least now it doesn’t prevent me from doing anything, I just get weird sensations in my arms and legs. I also sweat and get light-headed when I stand still for too long.
I’ve had an MRI and thankfully it came back “clean”. My cousin has MS, so that was a fear of mine too, although hers, thankfully, is very slowly progressing. Only one major flare and no disability yet (she’s 40 and has had it since she was 27/28).
Best of luck!
Celiac Disease…
It was one of the first things I was tested for. Fortunately, I don’t think I have an issue with gluten. I think it was dysautonomia (hyperandregenic POTS).
Graves Gal, here is a very good medical article about Sheehan’s Disease:
Click to access 260305A11_15990732_Ozkan_.pdf
I had extreme blood loss after a D&C I had following a miscarriage and believe I could have Sheehan’s… it’s tough to get a doctor to order the testing though (anytime a disease is considered rare, the doctors think you can’t possibly have it!) so I haven’t been diagnosed.
Wishing you the best of luck!
I stumbled upon your blog through a google search looking for info on B12 deficiency (which my husband has). I was wondering if you have researched Sheehan’s Disease? Sheehan’s disease is caused by loss of blood during or after delivery. It affects the pituitary gland which in turn affects pretty much all of your other hormones! It could certainly explain a lot of your symptoms.
I had two miscarriages in the year preceding my symptoms and I hemorrhaged with both of them. Thank you for sharing – I will look into Sheehan’s syndrome immediately! I have had much less milk with this pregnancy than with my first daughter! Certainly my fatigue and low blood pressure have been well documented, as well as fluid retention! Thank you so much for sharing. I will investigate more.
I’ve suffered from myoclonic jerks since childhood(at that time i did not know what it was or how to express it) and insomnia,anxiety for a very long time.Everyone from relatives to doctors would laugh at my condition.They used to think that I’m just too stressed or anxious.That I’m solely responsible for my pitiable condition.
The condition became worse with almost all classic b12 symptoms.Recently one doctor got my b12 levels checked.It was 149.And vit D level was just 5ng.I’ve a heart block now with pacemaker implanted.I think this heart problem is somehow connected to prolonged b12 deficiency.I still feel tired after the shots and hope to get better with time.Moods are somewhat better.Now I realized I’ve lactose intolerance(LI) as well.I’m a vegetarian and used to consume a lot of diary products.LI probably never helped absorption.
Once doctors determine we’re not dying, they seem to stop caring. My mom has had weird symptoms her whole life and she’s just stopped telling the doctor because they tell her it’s all in her head. It seems that doctors think all women are hypochondriacs – they think every illness is anxiety-induced. What little progress we’ve made – and most of my doctors have been women. Speaking of which, I just assumed you were a woman! If you’re a male, my apologies.
Interesting that your vitamin D deficiency could have caused your muscle jerks, also called fasciculations. Since most North Americans are low in vitamin D, and our major source of the vitamin is from milk, it makes sense that your lactose intolerance would make this worse! I was told to take 4000 mg of vitamin D a day when my symptoms started.
Vitamin b12 deficiency takes a long time to recover from. I wish you the best and keep us posted of your progress!
I’m currently being treated for a very serious B12 deficiency as well, and your description here: “Complex/silent/hemiplegic migraines – a wave of numbness in my face, thigh, or stomach for 15 minutes to 2 hours. During this time the area would be very heat/cold sensitive. After it was over I would have a wave of chills and severe headache and fatigue.” is of particular interest to me. I had two of these migraines, one right before last Christmas, that had my PCP sending me to the ER to make certain I was not having a stroke. It was the strangest thing–at first, it started out like a typical migraine, with restlessness, nausea, dizzyness and the beginnings of my typical migraine aura that looks like a cascade of sparkling light right before my vision goes blurry or I get tunnel vision. But then, instead of the usual pounding pain, what happened was this cascading sensation of….well, water…cold water pouring over my head and shoulders and down my arms, but only if water was thick like a gel and had needles and pins in it. It essentially felt exactly like my usual migraine aura’s look–they are sparkles and shimmers of light descending from above my head down to the ground. It was really weird. By the time I got the ER and was talking with the doctors and nurses, and they’d figured out I wasn’t having a stroke, I said, “I swear it’s some kind of weird migraine.” Well, my PCP sent me to a neurologist and she did lots of tests on me–I’d been having problems with tingling and nerve pain in my hands and feet for some time–and when I told her about that episode that sent me to the ER–she nodded and said, “Oh, yes. All of this is classic for someone with B12 levels as low as yours. You need shots and you need them sooner rather than later.”
It’s just so helpful to see I am not alone in this. That migraine scared the crap out of me–a lesser one happened last week. Not as dramatic, but it made me sickly for a couple of days.
I’ve had my first shot and honestly, most of the numbness and tingling in my hands and feet is gone. The nerve pain is gone, too. And my insomnia has lessened considerably. Thank you for writing about your symptoms–it really helped me to know I’m not alone.
Here’s something interesting to add. I’ve since had my b12 levels corrected and I still get these occasionally. I think it has to do with wonky stress hormones. Numbness-tingling-cold-spots-on-skin = Stress + Vasoconstriction/ Now, instead of complete numbness, I get cold spots on the skin. I’m not sure but I suspect the twinkling lights phenomenon is from restricted blood flow to the eye. I seemed to get it while walking or standing for prolonged periods. I need to present my theory to my endocrinologist and see what she has to say about it.
It’s funny, because I started blogging because of my thyroid. I had no idea that I would be going through this bizarre journey, but after 14 months, after seeing countless specialists, I am confident I’m not dying and I really think I may have at least shed some light on my symptoms in my latest blog. There isn’t much on the web and my doctors don’t really listen to what I describe is happening. They just try to lump me into categories they’re more familiar with, sometimes scary ones – like MS, Lupus, or Fibromyalgia – instead of doing a little problem solving.
Good luck and keep me posted!
Graves-Gal, Listen to me!!! You have to stop taking calcium. That is the problem. The problem is your magnesium, You have to take the B12 and magnesium ONLY. Low calcium that doesn’t respond to calcium supplementation is coming from a low magnesium level. I was in a similar position the B12 needs magnesium to do its work and magnesium competes with and looses to calcium for absorption. You wont be able to get your b12 to where it needs to be until you start building up your magnesium too. Magnesium is the most important of all the electrolytes. It is the orchestrator of all the electrolytes. without enough your body wont retain calcium or potassium and the calcium that is in circulation will plant itself in your joints and arteries. Magnesium regulates calcium peels it off your nerves and out of your joints. Heres the thing tho. you need a good type of magnesium. I use magnesium glycinate, only 100mgs a day(break a 200mg pill in half) and im a 6/3 225lbs man. and i use sub-lingual b12 methyl-cobalamin 5000mcgs a day. Supposedly these sub-lingual B12 tablets are more effective that even the shots. Ill tel you this tho. I had all your symptoms plus bad chest pains, and breathing issues and depression/ anxiety. and after only 2 weeks of only these two nutrients I feel like 75% better. i forgot what it feels like to not have to worry about how my body was feeling or if i was gonna be dealing with anxiety that day. BTW, i have nothing to gain and im not selling any thing. This is the first time i ever commented on one of these boards but i feel like you really need help. I know its counter-intuitive to say to not take calcium when your calcium is low but, u can easily Google to confirm what im saying. magnesium supplementation will raise your calcium levels because it will make you retain the calcium from the food you eat. Our diets are full of calcium but low on mag. Mag and b12 deficiencies have parallel symptoms. Unless you have kidney issues, 100mgs of mag is only 25% of what you need a day. i hope you listen to my message because i really think it could be beneficial to you.
Thanks Kenny! The whole reason I blog about this is to get advice from those who have gone through it. I have had some adrenal issues which I believe have contributed to the symptoms listed. I have read that too much calcium can be quite detrimental to one’s health, although they do seem to help when I’m having muscle cramps. I am currently taking magnesium, but not the “good kind”. I will ask my pharmacist about this.
I have noticed that if I take calcium while breast feeding, my 3-month-old daughter gets a little bunged up and gas pains, so I am going to stop taking it and hope that the muscle cramps stay at bay.
I was on b12 sublinguals but got lazy after getting b12 shots. However, I notice that my b12 level dropped 200 over pts in 1 month, so I will definitely need to continue taking them. I’m feeling better than I have in a long time, but am not 100% yet.
Were your symptoms precipitated by a lot of stress, by any chance? Thanks for your advice. I am going to give it a try.
Thanks Kenny,
You know more about the interaction of calcium and magnesium than most doctors. Notice how the blood tests shown above don’t even include magnesium. Yet magnesium is necessary for B12 utilization, for conversion of stored Vit D to active Vit D, as well as for calcium to work. We lose it due to fluoride in the water, lack of it in the soil and water and burning it off with stress and dis-ease. Also most women are told they need 1200-1500 mg of calcium, most of which isn’t absorbed and then becomes constipating and deposits in our tissues…especially if we don’t have enough magnesium.
Aloha
Have you read about hypochlorhydria? Since you obviously have multiple issues going on (i.e. thyroid-hyper/hypo, adrenal fatigue, anemia), it can be very easy to focus on just one issue. However, your ferritin level also accounts for many of the issues you are having. It should be between 70-90. Your lack of iron absorption can be due to hypochlorhydria (poor stomach acid production), an issue common with thyroid disease. If you are no longer pregnant or breast feeding, you might look into a betaine HCl supplement. Perhaps you need an IV iron tranfusion to get a quick boost and then supplement with iron daily after that.
http://www.medical-library.net/hypochlorhydria.html
http://www.stopthethyroidmadness.com/ferritin/
If you haven’t read James Wilson’s book on adrenal fatigue, it’s definitely worth the read:
http://thyroid.about.com/b/2005/09/29/mary-shomons-book-living-well-with-graves-disease-and-hyperthyroidism-published-this-week.htm
Good luck.
Thank you Maura! Yes, I remember reading about hypochlorhydria and thinking it fit some of my symptoms. I’ve always been prone to constipation/IBS and seem to avoid meats (although I try to eat more now). My iron has always been a little low. I am going for an upper and lower GI scope in February. Hopefully they will test for this? I will ask about it at my next appt. Thanks!
A little low? Your iron is extreeeeemely low. And if they haven’t tested for hypochlorydia by now, then the easiest way to figure out if you’re low in stomach acid, is to buy some betaine HCL (hydrochloric acid) capsules — you can get them online or at any supplement store) and take 1 or 2 with each meal. If you feel no warmth, then increase it by one capsule with each meal until you feel the warmth in your stomach, then stay at that until you get your b12, your iron, etc., up. All of your symptoms can probably be tied to these deficiencies, including the gall bladder stuff.
Treat the deficiencies first, and if you’re still low in calcium, then make sure you take it separately from your iron, as they compete for absorption. It’s also helpful to take ox bile extract (especially if you have gallbladder issues) because you need bile to absorb calcium
Vitamin D doesn’t lower calcium levels, it increases their absorption. It’s also important to take vitamin K2 with your calcium, magnesium and vitamin D to help the calcium go to the bones primarily, and the muscles, and stay out of your bloodstream. K2 prevents calcium buildup in the bloodstream.
Wow your website explains exactly the hell I went through. Im in my early twenties and when I finally got my b12 tested it was 30! I was diagnosed with pernicious anemia. for so many years I had doctors and people tell me I was healthy and just stressed out. Noone believed that I was sick and i suffered everyday. I lost so many years of my life bc doctors didnt listen to me. I have irreversible symptoms now.
DO NOT let doctors make you feel bad/crazy/stupid. Doctors like that do not deserve your business. I had two doctors and a nurse treat me like a silly, anxiety-ridden mom and try to send me home from the ER with a pat on the head, when in reality, I had a life-threatening medical condition. I insisted on the proper test, and they gave it to me grudgingly—their attitudes changed when they saw the results. Follow your gut, do your own research. I’ve avoided being misdiagnosed/undiagnosed and being given drugs that were contraindicated for my condition on multiple occasions. No one cares about your health more than YOU, not even family. Trust yourself!
Are you taking methylcobalamin, or cyanocobalamin? Because I’ve heard cyano isn’t good for you, and isn’t readily available to your body.
I have a lot of similar symptoms to you (though thankfully not as bad). I’ve had ongoing vertigo for two and a half years, and now I strongly suspect I’ve had b12 deficiency for years, getting worse after having surgery and refusing the second blood transfusion my doc wanted me to take afterward (I was anemic at the time). Now I’ve gone vegan, and I think that’s just making it even worse. I’ll be taking supplements, and hope it helps.
I really hope you get it figured out. As a mom of six, I know what you’re facing, as a mom, if this continues. The depression, mood swings, fatigue…way too hard on any mother, and the difficulty multiplies exponentially with each additional child.
Good luck!
p.s. Have you considered working with a naturopathic doctor? Depending on where you live and what the laws are, they can sometimes order blood work and prescribe vitamin shots, and will obviously pay more attention to what you’re feeling and natural remedies for it. Insurance won’t cover, but they’re cheaper than M.D.’s, and even if you only saw one occasionally for just your b12 issue, it would probably help a lot! I’ve heard you can do the subcutaneous shots at home yourself, like insulin shots, once it’s prescribed, so that would save a lot if you could do that.
Iv just read all your posts I’m exactly the same I was brushed off by my doctors as having too many symtoms after 5 mnth I moved doctors and my b12 is low I’m having my first shot tomorrow iv had pelvic pain numbness in legs pains everywere floaters in my eyes feel like I’m going to faint at times I’m 11 wks pregnant and having 3 kids already its hard work feeling ill and still having to do stuff. I’m getting sent to see a gastro doctors I iv been having loads of bowel problems . I’m convinced iv got cancer its on my mind constantly.
Yes, sounds familiar. I have an upper and lower gastrointestinal (GI) scope in February. Although, something I am currently investigating is adrenal insufficiency (AI). People with AI do not have enough of the hormones cortisol and aldosterone. Cortisol helps the body use sugar and protein for energy and enables the body to recover from infections and stresses (for example, surgery, illness). Aldosterone maintains the right amount of salt, potassium, and water in the body. Without the right levels of these hormones, your body cannot maintain essential life functions. Some symptoms include:
However, sometimes people with this condition will experience cortisol spikes, which can cause insomnia and difficulty sleeping, sensitivity to coffee (which increases cortisol), and increased blood pressure.
Ask a doctor to check your cortisol levels and DHEA. I have to do this myself!
200 is WAAAAAAY TOO LOW.
You’re clearly not getting enough b12, or the right form of b12. Please google “B12 deficiency is commonly misdiagnosed” on the bettermedicine/wrong diagnosis forums — you’ll find a LOT of folks with a lot of helpful information.
Many of them get shots on a daily basis, and some have to do shots more than once a day. Whatever the case, your b12 level should be at LEAST 600, especially if you’re pregnant.
And speaking of pregnant, that may be a reason why your levels aren’t increasing, because the baby is needing the b12 too. But I suspect you’re not getting enough, and your doctor isn’t knowledgeable enough on the subject.
If you have the book you mentioned above, you’ll find several case histories in there where they had to have daily injections. Once a week or once a month clearly isn’t cutting it. You should also see improvement in the ‘side effects’ you’re experiencing too, if you get more b12 in your system.
best regards,
Kelly
It was actually 115 when I was first diagnosed. After my 7th b12 shot I started to feel better. I still take sublinguals and get monthly shots. I’m going to see a gastroenterologist to see why I’m low in B12, calcium and iron. My next blood test will come after the baby is born. It will be interesting to see what effect that has on my condition! Thanks for your response. I agree though, I don’t think doctor’s are very knowledgeable about B12. My blood req says that anything under 133 is deficient, meaning that a B12 level of 134 would be considered normal!
[…] NOTE (July 20, 2011): I believe everything was caused by a severe case of B12 deficiency. However, as you can see by reading this blog, it was the last thing that anyone thought I had. Also interestingly enough, my mom, whom I talk about, was dianosed with pernicious anemia in high school but has never been monitored as an adult, which would explain our similar symptoms. You can read about my symptoms in a more concise manner here: Tingling? B12 Deficiency symptoms commonly ignored by doctors […]
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