Just wanted to comment on the excellent discussion following EllaNore’s post ‘Questions about Methyl mega dose v's daily cyano’

[MorningMist]

I don’t know about the rest of the forum members, but I always thought that b12 deficiency resulted from PA.

The comment that PA is a late stage manifestation of b12 deficiency was echoed by a geneticist who spoke on the PAS online seminar on Oct 15th. Did anyone listen to it?

That is the reverse of what I understood and I think it gives hope to those without a PA diagnosis that timely and adequate treatment could prevent it from ever happening. Rather than suspecting you may already have PA and trying to prevent it from progressing.

Hope this makes sense and my thinking isn’t muddled.

[VellBlue]

Hi morning mist, I think this comes out of PA being defined in different ways, which causes a lot of confusion.

Pernicious Anaemia is sometimes used to mean anaemia caused by B12 deficiency and is sometimes used to mean the autoimmune gastritis with intrinsic factor antibodies that can lead to B12 deficiency.

When people say PA can be a late stage consequences of B12 deficiency, they mean anaemia caused by B12 deficiency.

When people say B12 deficiency results from PA, they mean autoimmune gastritis leads to B12 deficiency

I think it's time we stopped using the term!

[MorningMist in reply to VellBlue]

Yes, I see. Thanks for explaining. I had read that before.

[Gambit62 Administrator]

as VellBlue says anaemia is one of the symptoms of B12 deficiency which is one of the consequences of AMAG (Autoimmune Metaplastic Atrophic Gastritis). In many cases it seems to be one of the later signs of B12 deficiency though the many medics assume that it is an early symptom because they fail to appreciate that anaemia isn't the only mechanism leading to the symptoms of B12 deficiency.

In other cases the anaemia caused by B12 deficiency may be masked by the anaemia caused by iron deficiency - another possible consequence of AMAG.

PA, or Addisons Anaemia is a misnomer stemming from the fact that it was first identified - quite a long time ago - as a type of anaemia which lead to madness and death - it was a few centuries before B12 and the actual causes were identified. The name is, indeed confusing and applied inconsistently. However, more correct labels, are more obscure which makes communicating difficult.

[MorningMist in reply to Gambit62]

I was mistakenly taking it to mean that b12 deficiency could lead to AMAG. 😩Thanks for the correction. 🙂

[bookish in reply to MorningMist]

I'm not sure that you are incorrect or that the two explanations disagree with each other. If the underlying epigenetic changes resulting from (possibly mild but ongoing and untreated) lack of B12/folate at cellular level can increase our risk of autoimmunity across the board, why not PA or AMAG. I'll have to re-read Dr Chandy, and I know not all agree with his views, but to me that does seem to be what he is implying. I wish I'd heard the PAS geneticist. Cheers

[EllaNore]

hello morningmist, I'm so glad someone made a comment in my thread that helped you. That's the thing about this forum. You never know when something you say will help someone else.

I'm actually a little confused too. I have B12d with no intrinsic factor, so I think that means PA. However, I'm not anemic. But my red blood cells were larger and oval and too few. So I'm not really clear what to say I have.

so thanks for your post. It is helping me as it will others. 🤗

[bookish in reply to EllaNore]

Hi. If you have Intrinsic Factor antibodies, you have PA. (You can also have IF ab negative PA). You don't need to be anaemic to have PA. If your red cells were enlarged you would have been heading that way, if not actually anaemic yet. Even vitamin A can obscure/correct the haemoglobin. The PAS is very helpful pernicious-anaemia-society.... Cheers

[EllaNore in reply to bookish]

That's what I think too. I do have PA, but I feel like maybe something else is not right either. I do know that I have advanced symptoms because of the more than 3 decades I went untreated and misdiagnosed. Major spinal issues. Others have POTS, Hashimoto's, thyroiditis etc. I don't now if I have any of that. I also fear that I have Subacute Combined Degeneration of the spine. I've lost feeling in my legs several times to the point of hospitalization. and right now my neck hurts so bd, I am going to go lie down. Have had this neck and head ache for weeks. It just won't go away.

Anyway, thanks again for the support and info. Take care! 🦋

[bookish in reply to EllaNore]

I really hope you can get some support from your appointment as it does sound as if you are not getting enough B12, and maybe you have developed another autoimmune or two. You should be able to organise testing for Hashimoto's thyroiditis without too much trauma, although if you don't show antibodies at the time of the test it doesn't rule it out. TSH, FT4, FT3, Tg Ab and TPO Ab should give you a good idea of how well your thyroid/pituitary are functioning. You can do a self-test for POTS which does go with other AI conditions, like Sjogren's, or Ehlers danlos. You take care too x

[EllaNore in reply to bookish]

Thank you very much bookish. I'm thinking of showing them this post to read. If our doctors would come and read what has been written in these forums, they would understand a whole lot more about this condition. It almost seems like b12d is a series of conditions all clumped together confusing everything.

Thank you for the tests to ask for. I will definitely try. My appointment is tomorrow. I will surely let everyone know if they anything promising. 🦋

[bookish in reply to EllaNore]

My pleasure and I hope it goes well. I wouldn't suggest showing a doctor anything other than a peer-reviewed paper from a respected journal, and they don't always read those (time of course plays a part in that - not all are unwilling or uninterested and some do follow the forums, as do other medical and scientific folk).

B12D can certainly cause a very wide range of symptoms across all body systems, but it is fundamentally one condition, although I suspect time will show that deficiency can be a strong contributing factor in developing others.

Best wishes

[EllaNore in reply to bookish]

I agree, and appreciate your thoughts. Some docs are not open to reading anything. I luckily found one stand-in doc that actually read what I gave her and ordered all sorts of tests, I believe the letter actually changed her way of approaching me. she was great. too bad she is not my permanent doctor. If a doctor doesn't want to read it, then do I really want that person as my doctor? who needs a doc that won't listen past their own ego? I would rather go without a doc than to be treated like poop by one. I just can't let another doctor treat me like I'm stupid! I don't know much about PA, but for the most part, it appears I know more than them. 🤗

[bookish in reply to EllaNore]

Well said you! All we can do is learn what we can and try to find someone who will listen and think a bit beyond what they were taught.

[EllaNore in reply to bookish]

Exactly! 💙