Is this Pernicious Anaemia? - Pernicious Anaemi...

Pernicious Anaemia Society

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Is this Pernicious Anaemia?

njames50 profile image
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My god-daughter has B12, folate and iron deficiencies. She has tested positive for Hashmimoto's and for perietal cell antibodies, but not for Intrinsic Factor antibodies. She is considering joining the Pernicious Anaemia Society, and suffers severely from the majority of symptoms associated with Pernicious Anaemia, some of which are neurological. We are wondering whether whether she would be considered to have Pernicious Anaemia, or autoimmune gastritis. It is possible she has both. Even when her gastritis is controlled by diet, there is no improvement in symptoms, which suggests to us that she is suffering from Pernicious Anaemia. We are wondering if this might be a transcobalamin issue. Your thoughts on this would be very much appreciated.

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njames50
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clivealive profile image
clivealiveForum Support

Can you send your God Daughter the link to join the Pernicious Anaemia Society.

healthunlocked.com/api/redi...

Having Hashimoto's puts her at risk of a B12 deficiency as too the parietal cell antibodies.

Do you know if she had had her Folate level checked?

I am not a medically trained person.

wedgewood profile image
wedgewood

A negative Intrinsic Factor anyibody test is so very unreliable . It certainly does not mean that you don’t have PA . There are papers that you can read about this and down load and take to your doctor . I’m sure someone will send you the link ..or just google “ is the Intrinsic Factor antibody test unreliable ?” You will get plenty of answers . It certainly sounds as though your goddaughter has PA .

Gambit62 profile image
Gambit62Administrator

autoimmune gastritis basically is PA

IFAB isn't very sensitive - it gives false negatives 40-60% of the time - so is a long way from ruling PA out.

Given the positive GPCA and hashimotos I think it is pretty safe to say that she has PA - even if it would be classed as IFAB-negative PA at the moment.

What treatment is she receiving for the B12 deficiency?

Difficult to be sure what the symptoms are caused by in the presence of both hashis, B12 deficiency, folate deficiency and iron deficiency as the symptoms of all 4 conditions overlap considerably. Is her thyroid under control.

njames50 profile image
njames50 in reply toGambit62

Thank you for this, which is very helpful. She is half way through two weeks of loading injections of B12. That's all the treatment she is receiving so far but further tests are being carried out. No treatment as yet for her thyroid. She is only marginally hypothyroidal, tried some NDT briefly but didn't get on with it. She has taken some folic acid but that didn't agree with her either so she's making sure her diet has plenty of folate.

Gambit62 profile image
Gambit62Administrator in reply tonjames50

opinion is mixed on when treatment should start - one school is wait until TSH really creeps up - other is start immediately (particularly if there are antibodies). Unfortunately it is perfectly possible to feel a lot worse when you start thyroid medication because its a question of getting doses right to balance stopping the pituitary gland telling the thyroid to produce more hormone and there being enough thyroid hormone in the system. I couldn't function when I was started at all and increased my dose unilaterally because GP wasn't listening - even on the revised dose things weren't right and I've been slowly playing around and upping dosage whilst monitoring carefully - but you do need to give it a while on a given dosage but you probably know that from the TUK forum.

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