Still not feeling well after being diagnosed with pernicious anemia 3 months ago

Hi I was diagnosed with pernicious anemia at the end of September. I was quite pleased in a silly way. I have been on so many different anti depresses feeling tired no energy. I have had three months of being of work because I feel so sh*t. I have had eight b12 injections so why don't I feel any better. I need to go back to work but I still don't feel right. Pains in my legs tired. Doctor has tested me for other things but can't find anything. Anyone help

8 Replies

  • Hi!

    I'm sorry you are still feeling ill and sympathise with how disappointing it is when you feel that finally you are going to be well and then you aren't!

    Don't give up! There are lots of possibilities and this is just the start of the journey!

    How close together were the doses? Did you get a great enough concentration of B12 to lift your levels enough? You should have had doses every other day or at least twice a week until all your symptoms had gone.

    Did you take other supporting supplements? A broad spectrum multivitamin and mineral supplement plus extra folate/folic acid, maybe iron, potassium, maybe magnesium and possibly others? (Someone else please advise - I'm only B12d and don't know about full PA).

    Are you like me and lots of others where your body just doesn't seem to do what is usually expected and needs way more B12 than it should? (OK, my requirements are towards the extreme end but I need about 1.5 mg B12 every day).

    Is the PA complicated by other things? Thyroid problems for example? I'm sure others will suggest other tests that may be good to have.

    Posting here is a great start and you CAN look forward to getting better, even if it takes a bit longer than at first you'd hoped. Compared to how long you have been suffering so far it will be OK. :-) x

  • P.S. I know you said you have had other tests but I expect others here will know lots more than your Dr and can suggest specific tests for more unusual things / versions of what you have been tested for!

  • Read through past posts on here: there's lots of information and every bit is a step towards becoming well.

  • Hi, lots of sufferers often say that they actually feel worse before they feel any improvement, im told its the nerve endings trying to go through a healing process. Could you say that any of your original symptoms have eased or gone?

    Sometimes its the actual form of b12 being injected that doesnt work for a particular individual. Or there could be other issues completely such as a thyroid problem.

    You need to discuss it with your dr and try to find the root of the problems you have. Previously posts have mentioned lyme disease too. So there are so many illnesses which have same/similar symptoms, which makes it difficult to pin down without further more select blood tests.

  • I understand thyroid is an especially difficult one as many people do have a thyroid problem but it is not picked up in the tests, hence your GP will say all your test results are "normal" when you know you are ill.

  • I can empathise completely with you leffeisace as I went through exactly the same "zombie" type experience nearly 45 years ago and yes, as others will say on here, it does take time for the healing process. Keep your doctor fully informed as to how you are feeling so that he can get the frequency of injections to what you need,

    There is life after P.A. and I'm still "clivealive" aged 74

    I hope you really start to feel better soon.

  • Hi leffeleffisace

  • I am getting close to two years since diagnosis, and I can honestly say I felt worse to begin with. Nerve endings seemed to be ultra sensitive for some time. Since last summer though, I asked my GP if I could trial more frequent injections. So instead of the usual three monthly jab, I now get an injection every six weeks. It has made quite a big difference to how I'm feeling, and she has agreed to keep me on the more frequent injections. Have you asked for VitD levels to be tested too? We often are low in lots of vitamins, and the suggestion you get your thyroid function checked out is also a good idea. My thyroid problem came first, but the two often occur together. Hope you soon begin to feel better. Best wishes MariLiz

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