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Archive for July, 2011

I haven’t posted about my pregnancy in months because my life had been consumed by my mystery illness, which was diagnosed a severe b12 deficiency, anemia and hypocalcemia at the end of June.  Even though my symptoms started before I got pregnant, they wrote off all of my symptoms due to pregnancy or anxiety.  After a month of  treatment, I’m starting to feel better, but I’m far from back to normal.

At night time, my legs ache and spasm slightly, I sweat like crazy and I can’t sleep. I still notice mild swelling throughout my body, but it’s so much less than it used to be.

My Graves Disease has been perfectly controlled – nice that something in my body is working – or at least responding approapriately to the drugs.  My TSH is hovering around 1.7.  However, when I get palpitations due to anemia, it triggers old feelings of needing more PTU.

The baby is very active, which is comforting. I’ve had 3 ultrasounds that show she is growing normally, which I find hard to believe due to everything I’ve been through. I have one more ultrasound in August. Maybe then I will be able to enjoy the last weeks of pregnancy. Up until now, I’ve just not let my mind focus on it because I was so afraid for myself, and couldn’t imagine the baby being okay.

I’m just looking forward to my next blood test in two weeks. I want to know where I’m still low so I know what to focus on to feel better. Right now I feel about 60% better after a month of treatment. I crash every night at 6:00 pm – can’t nap, and I don’t sleep well.  My achy moments are distracting, but at least I can do stuff during the day now, whereas before I was too tired, or crashed for a lot longer after any exertion.

(updaed Jan 2012 – I think I have adrenal insufficiency)

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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:

  1. 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.
  2. Tinnitus: I would read before bed and would often notice ringing in my ears
  3. Mild incontinence. Sudden urges to pee with mild “leaking”, even before the tingling started.
  4. 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
  5. 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)
  6. Diarrhea that came and went in bouts (of weeks or months). The first two months of symptoms I had watery stools every day.
  7. 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.
  8. 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.
  9. 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.
  10. 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)
  11. 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).
  12. 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.
  13. 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.
  14. 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.
  15. I got floaters in my vision
  16. L’hermitte’s sign: an electrical zap feeling, like you’ve been electrocuted (which is supposedly really rare, but my mom gets it too)
  17. 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).
  18. 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.
  19. 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)
  20. Dry mouth: My lips were peeling and I often felt like my mouth was dehydrated
  21. Course, dry hair that started to fall out.
  22. Tight calves. I also had muscle cramps in my calves at night. I became hypocalcemic, which I’m sure contributed to this!
  23. Heartburn and acid reflux. This started of mildly and got worse.
  24. Weird muscle spasms in my sleep that would wake me up. They wouldn’t be the really painful calf cramps, these were more spastic.
  25. 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.
  26. 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)
  27. Severely dry hair and hands.
  28. 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.

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