Does PA get worse in time?: Hi Folks... - Pernicious Anaemi...

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Does PA get worse in time?

Laundretta profile image
3 Replies

Hi Folks

Just a question of interest really.

I have autoimmune thyroid disease (underactive). Back in summer 2018 I had borderline low active b12 (34 range 25.1-165) and symptoms, but tested negative for intrinsic factor antibodies (I know this is a test with a high possibility of a false negative). Anyhow, due to lack of interest from GP, I have been SI with B12 for almost 2 years and it has made the world of difference.

I'm feeling the need to SI more frequently of late. Could this be due to continued degeneration of parietal cells, and therefore decreasing ability to 'recycle' B12, IF PA is in fact my problem?

Incidentally, my sister, who is also UAT, had symptoms of low b12, and I sent her to her GP to get tested, and she is now getting NHS injections. Well done her GP, and thanks to this forum from us both!

x

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Laundretta profile image
Laundretta
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clivealive profile image
clivealiveForum Support

Hi Laundretta that's a difficult one as P.A is one thing and a vitamin B12 deficiency caused by all sorts of other reasons is another.

For instance your B12 deficiency may be caused by your thyroid issues which would mean that you will most probably need to continue with the injections as you are doing and increase as necessary. They will do you no harm as it is impossible to "overdose" on B12 as any excess is excreted via your urine.

I am not a medically trained person so I can only speak personally - I have had P.A. for over 48 years and yes I have found that, down the years I have felt the need for more frequent injections and had to "fight" my "one size fits all" GP to get them. This I think is not an uncommon experience as we get older.

I wish you well and bid you goodnight

Laundretta profile image
Laundretta in reply to clivealive

Thanks clivealive

I guess I’ll never know for sure now if it’s PA or not! I hoped that as my thyroid medication got optimised that the b12 ‘demand’ would decrease but this doesn’t seem to be the case! My blood tests never come back out of range despite SI and b vitamin complex oral tablets so I’ll carry on doing what I’m doing!

waveylines profile image
waveylines in reply to Laundretta

Laundrette I have hypothyroidism too and infact my thyroid has totally failed. I have been optimally treated for about 10yrs. I found the b12 supplements worked at first but over time my levels dropped and developed neurological symptoms including tremors. Ive been on daily si b12 jabs for 18 months, alternate days for first 6 months on top so two years in total.

Daily seem to do the trick for quite a while but now numb toes are back so have finally increased to twice daily to see if that makes a difference. Am shocked at the amount of b12 am injecting but it does work for me. Some of us sadly need a lot of it but to date there is no research that I know of to explain why.

Don't be taken in by the one size fits all.........that is soooo far from the truth. Many are having to supplement their two/three monthly injections. You have to find the level that is right for you to remain as symptom free as you can be.

In my case I think my hypothyroidism and B12 deficiency all stems from severe Vitiligo.

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