pernicious anaemia how long to feel results

Hi, New here! I'm 26 and was diagnosed with pernicious anaemia and hyperthyroidism back in January. Had my first lot of loading dosages 6 shots in 2 weeks and now have 1 shot every 3 months (had the last 1 one month ago) Just wondering how long this usually takes to improve symptoms as I'm still fatigued all the time and sleeping 12 hour days and have no concentration to do much. Also with this i can feel a lot more depressed, Is this another symptom? Also what things can cause this as have good diet, No family history etc or is it just one of those things.

Thanks, Rich

11 Replies

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  • Hi rah26 firstly there is no set timetable for recovery as a lot will depend on how long your P.A. has been going on before it was diagnosed and treatment began.

    Also it is not uncommon for some neurological symptoms to appear to get worse before the get better as the B12 you are having injected starts repairing the damage.

    Secondly, if (you are in the UK) and you have P.A. with neurological symptoms you should be having your B12 injections every eight weeks in accordance with the N.I.C.E and B,N,F guidelines. You may wish to mention this to your nurse or doctor so that it can be corrected.

    Thirdly, do you know what your Folate level is?

    I am not a medically trained person but I've had P.A. for 45 years.

    I wish you well.

  • Many thanks for the quick reply.

    I am in the UK so will mention this when i next see the doctor. I'm not sure what level my folate level was but was told it was fine.

    Thanks again, Rich

  • There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

    Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health and works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

    Be assured there is "life after P.A" as I'm still "clivealive" at 75 but be aware you may need to "fight" your doctor to get the treatment you need and deserve.

    Please come back and let us know how you get on.

  • Your thyroid will also need to be treated. Your producing too many hormones. Therefore your doctor should have recommended tablets as treatment as you will need to slow down the hormones being released.

    Now there are quite a few different tablets you can try. So it will be a case of finding which works for you.

    My sister suffers with B12 deficiency, hyperthyroidism and fibromyalgia. So she has quite a few meds to balance her.

    In terms of B12 injections it will take awhile to feel 'normal'. Depending on how low your Active B12 levels were when you were diagnosed. Sadly however the test the NHS conducts doesnt actually discriminate between Active and In Active B12. Which obviously doesnt actually help anyone really.

    As you have just started see how you go to your next injection. If you start to feel much worse. Go and see you doctor and request another B12 injection. Depending on how your doctor works they may stick to the 'guidelines' however if they actually listen to their patients you may get another injection and the times between them reduced.

    Good luck - however long term if you read some more of the discussions on here, you will learn alot of ppl on here now buy their own (ordered from europe) and self inject. Just depends on your experience with your doctor.

    😊

  • Thanks FKtheNHS17 for your insight on the thyroid problems as I know nothing about the subject apart from the association between it and B12 deficiency

  • Yes its a complex see-saw with thyroid issues.

    Mine is currently classed as 'deranged' which means sometimes im hypo and sometimes hyper. I have to regulate my diet with protein and excercise to keep the balance.

    Whereas those who are one or the other have to be put on tablets for life to regulate theirs.

    Its sad really that the big medical conditions get so much attention. Whereas the life long conditions like PA, B12 deficiency and Thyroid issues are not so well known yet.

    B12 deficient people should have their thyroid tested every 12 months to make sure it is behaving correctly.

  • must eat chicory

  • Welcome ra26! I am sorry you are sick. It is such a mixed bag- you are glad to finally know why you feel so bad but then your like - I am sick and have to deal with this and do the Docs really know what the heck they are doing? I thought I was young for PA at 49 now 50. I would think your age would be a plus to helping you get to feel better faster.

    If you have not been checked for hashimoto's (it is a thyroid autoimmune that can cause both over/under active thyroid. you should have that done. I have it also. The sleeping 12 hours could definitely be related. I am rather new to all this also - have had 9 shots so far. I live in the states and my Doc put me on once a week shots then sent me to a hematologist who put my last one at 2 weeks. I go back tomorrow for recheck. So I never really had loading dose but rather weekly l. Honestly I do t feel much better yet but still hoping for the best. As far as diet I am trying to work into the paleo autoimmune diet. I am taking it in steps so it is taking a while. I have added organ meats such as beef liver 😬 grass fed/finished meats lots of vegetables and cut out most all junk foods. It has helped the hashimoto's numbers come down. Don't know yet how it is impacting PA. Will keep you posted. It takes some time to work through all this PA stuff. Meaning it may take time for you to feel better and heal but you are on the right track and headed in the right direction. Let us know how it goes.

  • I was going to say about iron too. Since I started B12 (two monthly) injections my iron level plunged. I had to tell my doctor I needed supplements. I also had to tell him that I needed folic acid in order to process the B12. I think I'm all sorted now, except for the fact that I still have neuropathy in my feet - always cold but at least I can still feel them! Sadly the problem with my feet was put down to diabetes although I disputed this for over a year until I managed to get treatment for B12D

  • I had 1 injection per week and started feeling much better after 10-12 weeks.(10-12 injections)

    You will feel better but how long is an individual thing.

    But remain positive it does work !

  • Just wondered if you'd thought of also joining the HU TUK forum - it has thousands of members and access to excellent expert advisers and research on thyroid disease.

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