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
- 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
- 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)