puzzled: I have underactive thyroid and... - Pernicious Anaemi...

Pernicious Anaemia Society

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puzzled

Sususulio profile image
7 Replies

I have underactive thyroid and other medical problems have been tested in the past as positive for intrinsic factor antibodies and my mother had pernicious anaemia. I have annual blood tests but always told ‘normal’

I wonder though…. My latest result is

Serum vitamin B12 level (XE2pf) 288 ng/L [110 - 914] should I supplement?

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Sususulio profile image
Sususulio
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7 Replies
Nackapan profile image
Nackapan

If touvevtrsted positive for PA .B12 injections are for life.

If you are on no supplements.

Are you well?

Your result is in range .

It depends on symptoms 🤔

Sususulio profile image
Sususulio in reply to Nackapan

I tested positive for parietal cell antibodies - I am not ill but have many symptoms common to both thyroid and b12 deficiency, joint pain, tiredness. I realise I’m in range just wondered whether the aim should be to be higher within it, my thyroid results are also in range - thank you though

Orchard33 profile image
Orchard33 in reply to Sususulio

I have learnt that B12 def/PA are sympton led illnesses, that tests do not and cannot allow for individual absorption issues. This, of course, makes it much more problematic for medics to deal with as tests are seen as more or less decisive. With these conditions they are not. What we are dealing with, it seems to me, is a highly complex bio-chemical puzzle that is highly individual. Conventional medicine finds it very difficult to respond to the individual.

Hectorsmum2 profile image
Hectorsmum2 in reply to Sususulio

I was high in range for B12 when a very helpful doctor started me on injections. I am a million times better for having them. The blood tests are not reliable and if you have PA you should be on injections for life.

Showgem profile image
Showgem in reply to Sususulio

Do you mean that you test positive for both intrinsic factor antibodies and parietal cell antibodies? If so you should be on injections for life as you have confirmed PA.

Sleepybunny profile image
Sleepybunny

Hi,

If you tested positive for both IFAb (Intrinsic Factor Antibodies) and GPCA (Gastric Parietal Cell Antibodies), you have a blood relative with PA and symptoms consistent with B12 deficiency then I think it's likely that you have PA.

Worth joining and talking to PAS who can offer support and pass on useful info

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Blog post about being symptomatic for B12 deficiency with normal range serum (total) b12.

b12deficiency.info/your-ser...

Vital to get adequate treatment.

Delayed or inadequate treatment increases the risk of permanent neurological damage. There have been forum members who developed SACD, sub acute combined degeneration of the spinal cord from delayed or inadequate treatment.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA, mentions SACD

martynhooper.com/2010/09/21...

NICE CKS guidance B12 deficiency and Folate deficiency (UK health document)

cks.nice.org.uk/topics/anae...

I usually urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. If you can't find them online or by searching forum posts then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.

See blog post below if you want to know why I suggest this.

b12deficiency.info/gloucest...

Some health professionals have misconceptions (wrong ideas) about B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK treatment info in book is out of date. See NICE CKS link for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I'm not medically trained.

Sususulio profile image
Sususulio in reply to Sleepybunny

thank you

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