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Archive for the ‘B12’ Category

I had Graves Disease that went into remission. However, ever since having Graves, I have had trouble with my b12 levels. For the past 3.5 years I’ve been battling many weird symptoms that at first were treated seriously: had an MRI to look for MS due to numbness in my cheek and thigh. I had an upper and lower GI (gastrointestinal) scope to look for digestive issues and causes of malabsorption (also low in vitamin D, calcium and magnesium as well as iron, which as 10).

Despite having had a blood test where my b12 levels were 115, and despite severe macrocytic anemia, my doctor didn’t think anything of these levels. I had b12 shots monthly and my symptoms seemed to get a little better, but very, very slowly and never completely went away.

I started looking at other causes of my pains and ended up with a fibromyalgia diagnosis by my doctor and a prescription for anti-depressants, which I weaned myself off after about a year on them. My pains never went away and my doctor started becoming really insulting by always asking, “Are you anxious?”  Well, yes, because a) my symptoms aren’t going away, and b) you treat me like a hypochondriac.

Last summer my friend told me how she started injecting herself, so I thought I’d give it a try. My injection schedule was irregular, but I did see steady improvements. However, when things started to go downhill at March break of 2014, I didn’t suspect my B12 levels at first.

My symptoms

The pain started to grow, especially in my neck and my back. There was a pain that wrapped around my rib cage, just above my bra line, especially on the right side of my body (I use my mouse with this hand), and I sit at a computer a lot.  One of my stranger symptoms was sweating in my right shoulder blade area, near the spine. I think this is an area that was just highly irritated due to using my mouse a lot. The sweating seemed to run up into my face – my jaw muscles were always very sore and irritated. I’d try to massage them and they would hurt for days.   Pain in my upper arms was constant and my arms would fall asleep as I lied in bed reading.  My feet would also hurt walking on them in the morning. My hips ached too, especially the right side.  I also had terrible swelling in my fingers and sometimes feet.  And weirdly, it affected my digestion. I would get diarrhea. Sometimes food seemed to irritate my stomach.  The slightest movements would hurt my spine and I’d get photo-sensitivity. Even, occasionally, mild urinary incontinence.  Finally, tinnitus and insomnia were two of my earliest symptoms.  Oh, and really bad hot flashes and cold shivers. Freezing cold butt and feet. And, I know my TSH level during this time remained “normal,” between 1-3.

Finally, I suspected B12 and started injecting daily for the past 4 days and again major relief in the pain, with still lots of naggling pains that I suspect will take some time to disappear.  I also feel almost worse after the first few shots. My tongue tingles, my face tingles. I feel tired and lethargic.  However, I remember from before, this does get better as your body starts to heal. I also remember how long it takes to return to normal energy levels, and even longer to feel “normal”, if you ever make it back there. However, I am very happy to be self-injecting. It’s super cheap, too. I pay $7 for 10,000 ml of B12 which lasted me almost a year last time, but now I know I need to inject much more frequently to be symptom and pain-free.

 

 

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For the last 2.5 years I’ve been dealing with symptoms that kind of mimic hypothyroidism. Considering during this time I was going into remission from Graves Disease, it was very difficult to find the route cause of all my ailments: dry hair (fluid imbalances), numbness and tingling, major water retention and swelling (mostly of the belly, but fingers, upper arms, face and legs, as well), fatigue, flank pain, nausea, incontinence, swollen veins, not to mention deficiencies in b12, iron, calcium, magnesium, and vitamin D.

It all started on my right side, shortly after losing a pregnancy. I was “diagnosed” with anxiety and when I quickly got pregnant again, the rest was blamed on pregnancy or “fibromyalgia”.

I have constant right flank pain. I thought, what they missed by stereotyping me as an “anxious hypochondriac woman” was that I had had a catheter when I lost the baby. My first symptom was incontinence.  I thought it must be a kidney infection. I also have a right subscapular echogenic liver cyst . Last ultrasound showed that it was gone.

I swell up every single night with a giant bulge above my belly button and constant flank pain to this day (2.5 years later). I now know to watch my fluid intake.  I will add some additional details after my doctor’s appointment tomorrow (Jan 26, 2013).

Ultrasound Update: So, I have dilated collecting ducts of the right kidney.  Obstruction? No mass – so hoping not cancer.

Update: CT scan came back “normal”. Back to the drawing board.  Now I have a goiter. Must by hypothyroidism (Graves disease is in remission)

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So, when I got Graves Disease, I also got very, very dry eyes which I thought might have been Thyroid Eye Disease.  After one year of eyes so dry that they were swollen (despite adding drops constantly), the dry eyes went away, but came a host of new symptoms, such as crushing fatigue, weird vein pain, severe muscle spasms in neck, back and sciatic area. Is it possible that my original graves disease was caused by autoimmune inflammation of the pituitary, and the resulting new symptoms, after the Graves Disease went into remission were hypopituitarism symptoms, such as low adrenal output (hence the crushing fatigue and inability to cope with stress, feelings of impending doom?)

Apparently, hypophysitis is common during pregnancy, and I had 4 pregnancies in four years (two miscarriages).  My mom has similar symptoms and has since her 30s, and autoimmune disorders are common in my family.  I’m too tired to put all of the pieces together right now, but I have a blood req for ACTH in my purse (they couldn’t do it at my family doctor’s lab), so I guess we’ll see!

  • I also have weird water retention – at times quite extensive.
  • I had really low blood pressure for a while.
  • Crazy dry hair and hands.
  • Flushing of the face.
  • Muscle cramps (face, calves, etc..)
  • Low b12
  • tinnitus
  • I did have double vision with the graves disease and with the “new” symptoms, I had wavy lines in my peripheral vision and severe photosensitivity.
  • Crushing fatigue. Occasional bursts of energy would be followed by being bedridden the next.
  • Feelings of impending doom (thought I was dying).
  • Crazy heart palpitations, especially at rest or in the middle of the night
  • Night sweats – severe
  • Vein pain (bloated blue veins that hurt. Feet would hurt in the morning)
  • Muscle spasm in my cheek
  • hypocalcemia and low magnesium
  • Low iron

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About two months ago, a blogger identified my symptoms as adrenal fatigue (thank you Bethanie).  After an extensive amount of research on my end (thank you Dr. Lam: www.drlam.com/articles/adrenal_fatigue.asp), I agree this fits my situation to a “T”. However, what it’s hard to glean from all of the literature is what does this really feel like in real life.

Update: interesting relationship between thyroid and adrenaline: Note: http://tiredthyroid.com/feeling-hyper-when-hypo.html Thyroid and adrenaline (epinephrine) have an inverse relationship. [1- 4]

My symptoms started with sudden sleep issues (up every night from 1-3 am). I had ringing in my ear at night. I had sudden urges to pee, out of no where!  When the thigh numbness started I worried, but when the face twitching/numbness started I outright panicked.  This was not good for me! If I had known what was happening, I probably would have spared myself a whole lot of damage. However, for the next 6 months I panicked about what was causing my weird numbness and tingling, watery diarrhea, and complete inability to nap or sleep.

You can read the whole saga under the blog “numbness & tingling on the right side”.  Over a year later I am still suffering the same symptoms, however, to a lesser extent. Knowing (or at least thinking I know) what is going on with me makes it much more manageable and much less stressful.

Main symptoms

  • starts with my right thigh – goes tingly, then both thighs, then my upper arms go tight and sore.
  • My skin is often cold (even to the touch).
  • Alternating sweet cravings and salt cravings
  • sudden urges to pee
  • right eye twitching
  • mild edema all over (worse at times), noticeable in my legs, face (chin), upper arms and stomach. It almost looks like I suddenly get cellulite in my stomach and legs but it’s just water and goes away.  My upper arms get water-logged and a little jiggly, but goes away.
  • wrinkly hands and fingers, like they’ve been soaked in water for hours
  • some days I have really bad fatigue (the swollen days), but on the tingly days my energy is fine.
  • I get lots of muscle cramps and aches
  • photo-sensitivity comes and goes
  • I believe a lot of my symptoms are due to macro-mineral issues: calcium/magnesium balance, sodium/potassium balance. However, my willy-nilly taking of vitamins doesn’t get the balance right.
  • Cycles used to take months, but it now takes about 1 month to cycle through these symptoms.
  • I’ve gained weight, in my stomach and face, despite typically gaining it in my lower body. Ugh.

The biggest lessons I’ve learned:

  • I try to stay calm and take hot baths before bedtime, read my book and fall asleep with no lights and no TV on in the room.
  • I do take B vitamins (b12 helps with energy), iron (Euro-Fer/Palifer), magnesium, vitamin C and vitamin D. I’m not religious about it like I used to be. I took a bottle of Milk Thistle until I finished it. I am feeling better, though not cured.
  • When my muscles are really crampy I do take calcium and it does help. I’ve been told that it shouldn’t, but it really does help when all of my muscles are tight.
  • I used to live on cereal and now I try to eat more protein. In fact, I’ve read that limiting carbs is the fastest way to recovery. I hadn’t tried it (because I love carbs), but I am starting to ween.
  • When I’m tingly and cold beta-blockers help! I get weird muscle cramps in my upper arms and cold spots all over the body, and I suspect it’s caused by vasoconstriction (epinephrine?) because beta-blockers make this better. However, if I take too much beta-blocker I get light-headed and sweaty.
  • I tried playing competitive volleyball again, but it was at night and my muscles cramped up afterwards and I was easily rattled (embarrassing – I got emotional on the court and that is soooo not like me!). It’s recommended to exercise in the morning and not too intense.
  • Stuffy nose when I lay down only. As a result, I wake up with a sore throat. Not sure if it’s reflux or post-nasal drip.

Here’s hoping normal is not too far away!

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If you’re reading this blog for the first time, read “Numbness and Tingling on the Right Side” first and work your way up.

Quick synopsis: In January 2011 I started getting weird symptoms which started with numbness in right thigh and right cheek. I also had a slew of other symptoms: tingling, silent-migraine-like episodes, tingling, especially in the thighs, tight, spastic muscles.  Tested negative for Rheumatoid arthritis, lupus, celiac, MS (my MRI just came back clean).

I have high ESR, CRP and was deficient in B12, calcium, ferritin, magnesium and had bad anemia, which peaked in July 2011.

I’ve seen a rheumatologist, neurologist, endocrinologist and as of today, a gastroenterologist!  The rheumy insists it’s fibromyalgia (FM), but since treating my vitamin deficiencies, I don’t have trouble sleeping, and I’ve never had wide-spread pain or ANY tender points. Also, inflammation is not a symptom of FM.

I’ve been taking ibuprofen for 1.5 weeks and it helps with the constant aching in my upper arms. I have occasional spastic muscles (jaw, traps (shoulder), calf muscle and mid/lower back). My hips often are achy. I don’t think this sounds like FM, but maybe I’m wrong? Also, I have mild swelling all over my body. Slight pressure seems to cut off my circulation – like when sitting, or putting my feet up, tight elastics on shirts, etc…  Swelling isn’t terrible but I look puffy and bloated – just glad it’s winter time!

Next step: having upper and lower gastrointestinal tract (GI) scopes/colonoscopy.

On a positive note, my daughter was born this past November. Perfectly happy and healthy and is a pure joy through all of this. Still feel quite blessed that I don’t appear to be dying and have a beautiful little girl to show for all my trouble.

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When I was first diagnosed as being deficient in B12, I was excited to get a B12 injection so I would feel better. So imagine my disappointment when I felt worse for the 2 days following my shot. My arms, which had been constantly burning, didn’t hurt as much, however, my whole body was exhausted and all of my muscles were achy.

Well, after searching for answers on the internet for months, my endocrinologist finally explained why this happens to me.  When a person is very low in B12, a b12 injection can actually cause one’s potassium levels to drop.

Low potassium levels (hypokalemia), can cause weakness as cellular processes are impaired. Potassium is a mineral (electrolyte) in the body. Almost 98% of potassium is found inside the cells. Small changes in the level of potassium that is present outside the cells can have severe effects on the heart, nerves, and muscles. Potassium is important to maintain several bodily functions:

  • Muscles need potassium to contract.
  • The heart muscle needs potassium to beat properly and regulate blood pressure.

The kidney is the main organ that controls the balance of potassium by removing excess potassium into the urine.  Symptoms of low potassium include:

  • Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis)
  • Tingling or numbness
  • Nausea or vomiting
  • Abdominal cramping, bloating
  • Constipation
  • Palpitations (feeling your heart beat irregularly)
  • Passing large amounts of urine or feeling very thirsty most of the time
  • Fainting due to low blood pressure
  • Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.

After 6 b12 injections I still was experiencing these symptoms and my blood B12 level was still in the low 200s, despite taking up to 5 sublinguals a day and getting weekly injections.  I also got weird neurological symptoms in my muscles. Weird crawly sensations in my thighs, and even weird vein symptoms. It felt like they were inflating at times, if that makes any sense. After a couple of days after my shot, just when I felt a little better, tingling would start to return and my feet would swell really badly.

After my 7th B12 shot I actually started to feel better. I’m guessing that’s how many shots it took to build up my liver stores. My muscles feel less weak, and tingling is almost completely gone. It’s been 3 weeks since my last shot and so far so good. Shot #8 is next week!

So what should you do if you feel worse after a B12 shot? Here are some foods that are high in potassium:

  • All meats, poultry and fish are high in potassium.
  • Apricots (fresh more so than canned)
  • Avocado
  • Banana
  • Sweet potatoes
  • Cantaloupe
  • Honeydew
  • Kiwi
  • Lima beans
  • Milk
  • Oranges and orange juice
  • Potatoes (can be reduced to moderate by soaking peeled, sliced potatoes overnight before cooking)
  • Prunes
  • Spinach
  • Tomatoes
  • Vegetable juice
  • Winter squash

After

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For a couple of months I had been experiencing pain on my right side, under my ribs, wrapping around to my back.  I had an ultrasound done at 34 weeks to investigate, as my symptoms sounded like gall bladder disease / gall stones.  Everything looked normal except for a “1.0 cm right subscapular echogenic area, likely representing a liver hemangioma.” Well, that is where my pain is, however, the report noted that “No cause for patient’s pain is identified.”

From what I’ve read on the internet, other people have experienced pain there, mimicking gall stones, only to be told it’s a liver hemangioma, and that it shouldn’t be causing pain. Several people also noted that they have IBS (irritable bowel syndrome), which I have been told I have due to years of constipation and bloating (basically since birth).

Recently, in January 2010, I started getting other weird symptoms like numbness and tingling. After 6 months of seeing 8 different doctors, including the emergency room at the hospital, an endocrinologist (I have Graves disease), a neurologist (for the numbness & tingling), and a rheumatologist (who told me it was fribromyalgia, which it isn’t), I was finally diagnosed with vitamin B12 deficiency (it was 115 at the time), low calcium (hypocalcemia), and low ferritin (anemia). The current hypothesis is malabsorption and I go to see a gastroenterologist in February, and I’m getting an MRI just to rule out anything else (Jan 2012 – completed – came back clean.)

So, after 3 months of supplements with vitamins I find I still have malabsorption issues (diarrhea), despite many pills a day:

  • 2 mg+ Calcium
  • 4 IU vitamin D
  • 1-2 Iron pills a day (Palifer/Euro Fer)
  • Vitamin C (I take with iron, and now with each meal as I read it can help with malabsorption)
  • B12 (sublinguals and injections)
  • prenatal vitamin
  • B complex vitamin
  • 1 magnesium pill

I suspect that my history with IBS could be caused by low stomach acid (hypochlorhydria ). It is interesting that the low vitamins happened less than 2 years after my Graves disease diagnosis, which makes me wonder if any of it is autoimmune. Pernicious anemia (low b12) can be caused by an autoimmune disorder, but doesn’t explain the low calcium.  Updated Jan 2012 – I feel fairly certain it’s adrenal fatigiue/insufficiency

So, until I have this baby (less than 4 weeks to go!), and until I see a gastroenterologist (3.5 months from now), I just have to keep taking vitamins, ignore the pain under my right ribs, and hope that it’s all treatable in January!

I know a scope of my stomach and colon is likely in my future, but if it produces the cause of my symptoms (hopefully, all benign), then I’ll be happy. However, I am disappointed that it is taking so long to diagnose. It’s already been 9 months since the onset of my symptoms and it will be over a year before I see the gastroenterologist (it took 3 months of supplements not making much of a difference, and even then, I had to ASK to see one).

Note: my Graves Disease has been perfect throughout pregnancy. I take a pill at breakfast (50 mg), and another pill at bedtime (50 mg). I will let you know if it flares up after birth, but so far, so good!

Post-Birth update

About a week after birth my calcium levels seem to be off. I feel very hypocalcemic, however, I’m taking more calcium than ever (up to 4,000 mg / day). My lips are tingling and my muscles get crampy. However, I’m prone to constipation right now – well, large, firm stools right now, which is odd because I’ve had fibrous, slimy bowel movements leading up to birth, despite the calcium and iron I’m taking.

Update: Jan 2013

Still have constant flank pain in this region. Kidneys look okay. Think this might be the source of all my problems – liver cyst.

Liver cysts are usually asymptomatic, and most people having them are unaware about their condition. It is found that less than 5 percent of people with hepatic cysts develop noticeable symptoms. Also, the benign sacs don’t affect the normal functioning of liver. When the cysts grows larger to about 7 cm, or if there is bleeding inside the cysts, then only they cause symptoms. Bleeding into the cysts is characterized by sudden pain in the upper right abdomen. Symptoms associated with hepatic cysts include the following.Upper abdominal swelling and discomfort
Abdominal pain
Nauseated feeling
Eruption of the cysts
Digestive problems
Shoulder pain
Liver enlargement
Blockage of bile ducts
Infection of the bile ducts

Diagnosis and Treatment

Diagnosis of liver cysts is done when a patient undergoes a CT (Computed Tomography) scan or an ultrasound procedure of the abdomen. Usually, they are detected incidentally, while doing imaging tests for other abdominal problems. If required, examination of a sample of fluid from the cysts, biopsy of the affected tissues and blood test (for parasitic infection cases) is conducted. It is common that an individual has more than one cyst in the liver tissues and rarely, there are multiple cysts.

Since liver cysts don’t disturb the normal functioning of the body, there are no significant treatment methods. In case, the cysts are big enough (for example more than 3 cm), it is advisable to go for a follow-up abdominal imaging to check the growth of cysts. People go for treatment of liver cysts only after they experience discomfort symptoms that disturb their normal routine. Treatment for the same is done by aspiration and/or surgical removal of the cysts.

Of the two available treatment methods, removal of the cysts via laparoscopic surgery is a more reliable intervention. Simple aspiration of the cysts is not recommended, as fluid tends to fill up the cysts after some time. In the surgery, 2-3 small excisions are made in the abdomen. With the help of laparoscope, a large part of the affected tissues including the cyst wall is removed, and the incisions sites are sutured. Laparoscopic surgery is also recommended, if the cysts prevent normal flow of bile juice to the small intestine.

This minimally invasive procedure requires 1-2 days hospital stay. Usually, candidates achieve full recovery within 2 weeks after the surgery. As the liver regenerates on its own, it recuperates successfully. In case, the cysts are infected, then treatment may include administration of antibiotics and other prescribed medications along with excision of the tissues and cysts. For people who have participated surgery for hepatic cyst treatment, recurrence rate is very low (almost negligible).

To conclude with, no specific treatment is needed for asymptomatic liver cysts. However, one should be aware about the complications of liver cysts, such as infection, jaundice (yellowing of the skin and sclera), bleeding into cyst (causing pain) and disturbance of the flow of bile juice. If anybody suspects that he/she has liver cysts, it is recommended to consult and seek advice from a physician so as to get proper medical attention. Except for the mild discomfort cases, hepatic cysts do not pose risks for liver cancer and liver failure.
Read more at Buzzle: http://www.buzzle.com/articles/liver-cysts.html

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