Pernicious Anaemia Society
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very confused now!

I am so confused, and cranky and sorry this is "longish". I saw an endo yesterday due to having two plus years of unstable thyroid levels and for newly diagnosed Sjogren's which he seemed to not care about at all. I have been hypothyroid for 30 years. I have always been stable until two years ago where it can be up and down and up and down. Normal is between 1.9 and 5 but my levels are sometimes 23, 25 or 68 then 6.8 or 9.3 etc (this is also on 250 mcg of replacement, and I've tried 4 different types including dessicated at 180 mg). So, I saw the endo because of this. He looked me over a bit and took a history yesterday, he said how do you feel I said " I feel horrible and I have the weirdest symptoms" and went on to list them, these are symptoms not generally associated with hypothyroidism, such as pain in my feet and legs so I can barely walk most days, horrible pain in muscles if I exert myself, lightheadeness or feeling or air head when standing or doing something, stairs bother me now as I don't seem to gauge the steps well. I'm 58 by the way not 100 so I shouldn't be like this, but I've been gradually feeling horrible for about 7 years. Anyway, he suggested I may be B12 deficient. my lab result just came back at 306 (which is normal range). There is a parietal cell test that is still being assessed and no back yet, that shows if the parietal cells that allow B12 absorption in my gut are dead or working properly so I'll wait to see). But here we go again. He said yesterday "you are on industrial doses of thyroid meds, your thyroid is not even detectable anymore and yet you have very unstable levels so I'm thinking for some reason you're no longer absorbing thyroid hormone". Did I mention I've gained 20 pounds in just over a year also, the first time in my life I've gained weight like that which is definitely from the thyroid. I have also been recently diagnosed with Sjogrens, so I thought a lot of this was Sjogren's pains.

Now I'm confused. if my B12 level shows as normal and yet I have every symptoms of B12 deficiency in the book, my grandmother had pernicious anemia, my thyroid pills are not absorbing and I am feeling so exhausted, ache constantly, get horrible numbness and tingling in my limbs, dizziness, blood pressure screwed up off and on, etc what are the odds to insist on B12 treatments and get it ?

I have taken B12 supplements last year when researching some of my odd symptoms, I took 1200 mcg of methylcobalamin but my body reacted by almost putting my into a deep sleep. it was very odd, within about 30 minutes of ingesting methylcobalamin I would get sleepier and sleepier and have to lay down to cope and fall asleep for like 2 or 3 hours. It scared me so badly I have to stop it after about 10 days! Apparently for some people that is a side effect of methylcobalamin.

Oddly, I asked him to do a ferritin level on me, since my family has hemachromatosis carriers in it, and one positive and he didn't think it was necessary but he did and guess what, my ferritin has come back as high (200 is max high and my level is 205) This has risen from 45 just 18 months ago when I had my hysterectomy and was hemorrhaging all the time. So will see what he says about that but he'll likely poo poo it.

Question is, have any of you had supposed normal B12 levels and insisted on treatment and found relief from it? Did you take shots or pill form like over the counter and what type? I am not a vegan, I eat red meat or chicken at least 3 times a week. I was only very anemic for 2 years with hemorrhaging from uterine fibroids, that was traumatic enough. I was SO hoping that this B12 test was pos because it would finally explain so many things. Maybe my symptoms are from the thyroid levels again, but they can be up and down and up and down . One of my biggest issues is a constant numb feeling in my left arm, which is progressively getting worse, and one day about 10 days ago I had my whole left side go about 60% numb or loss of sensation so that I couldn't even use my keyboard... which is part of my work, so I had to take the day off. that cleared after 3 days. I have horrible muscle and joint pain but RA factors and ANA neg too. I have daily zaps of nail like or pin like pain to my body and unexplained random ulcer like sores on the roof of my mouth for no reason. I have daily blurry vision some days really bad and some days not. I have developed uveitis which explains some of that but not all. It's crazy. I'm so tired of being sick and tired! Any suggestions should I be asking for a homocysteine level or MMA level now? Thanks in advance. I need to figure out which way to turn and get some help for once. I feel so horrible I just can't even consider what I'll be like in 5 years.

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Ask to be referred to a neurologist about the numbness. It's unlikely to be B12 related as that tends to affect the peripheral nerves symmetrically, where's as yours is restricted to one side.

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:) I should be more clear, I get symptoms on both sides but my left side seems to be losing sensation in both limbs. Even holding a cup of coffee, my fingers don't sense the extreme heat in left finger tips if I place my hand on a hot steaming cup, but on the right it's too hot to touch. Yet on the left I can place my fingertips on a hot cup of coffee and keep them there. It just always feels weird on the left side. I got my ferritin level back yesterday which is high, above normal, so I'm wondering if that has something to do with it too...

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How much time had elapsed since you took the B12 supplement and the test? Obviously the supplement will rise you B12 serum level into normal.

"I took 1200 mcg of methylcobalamin but my body reacted by almost putting my into a deep sleep. it was very odd, within about 30 minutes of ingesting methylcobalamin I would get sleepier and sleepier and have to lay down to cope and fall asleep for like 2 or 3 hours. "

When I was deficient that is how I reacted too. Now I just feel better when I take them. So you may be B12 deficient. Homocysteine and MMA tests would help confirm or deny B12 as a problem. Though the test are not usually routine.

Hemochromatosis has similar symptoms to B12 deficiency so you should follow that up too.

Try to get your doctor to investigate your symptoms, B12 or another B vitamin and hemochromatosis are strong possibilities. If you have no luck then try a strong b complex and 1mg B12 tablet for a few weeks. If you are deficient you may feel better and worse at the same time when taking them. Little to no effect probably means your B vitamins are OK.

As pernicious anaemia and hemochromatosis run in families and are incurable but treatable it would be best to get treatment from your doctor rather than self treating. If these are the problem.

One final thing is that autoimmune diseases like PA, Hashimoto’s thyroiditis, Sjogren etc. tend to occur together. If you have one, you are more likely than most to have another.

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Yes Ellen ! Hypo for 33 years, now have Hashimotos (positive autoimmune tests) with L side of thyroid completely atrophied and the R side large nodules needing FNA every 6 months.

PA now too - PCells tested positive for autoimmunity as did Intrinsic Factor so big loading dose of B12 and now need injections once a week !!!, Hard to tolerate and find the time for !

No Sjogrens .....ha ! ......lso far !

I feel my whole body from inside out is inflamed ! I am trying the ‘Autoimmune Fix’ book - so far wheat,dairy, gluten and sugar seem to be my no no’s ! I’m fighting the good fight 😏

Hope that’s been a help......btw my Endo (x2 ) have been useless too ! Important to realise once these autoimmunities have been found they’re too late to cure and they've been cooking away for years so the best thing to hope for is self help and management.

All the best, Susan

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Ps check if you’ve got the hpylori bug in your gut - ask GP, it’s a simple breath testing kit.

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The instrinsic factor test is notoriously unreliable as I'm sure you have read too. Taking the supplements screwed b12 tests. Can you press for the MMA, Homocysteine test or pay for it as this will prove what is happening with your cells. Your symptoms are very scary, I hope you can get answers.

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