Intrinsic factor

[may61]

Had low b12 in 2014 seems to run in family,have had injections every 3 months since ,have not been diagnosed with PA .But have always been ok after my injection for three weeks then it down hill and have to take sublingualsalways take my folic acid Last year in middle of the 30 weeks that I never had a B12 I started with a very dry mouth ,thought it might be folic acid so tried that tried iron nothing Told doc about it no joy .Had a conversation with my daughter who had the same thing in her early 20s,and they eventually thought it was sjogrens.10 years later she says it was defo B12

Haven’t had my intrinsic factor checked since 2016 and because my health has deteriorated,asked him if I could have it checked again .His answer today was you only have it checked once and you have it so you can’t have it checked again .Surely this is wrong.Have others found that after that long gap last year in between jabs there general health has deteriorated

[Nackapan]

You can have more than one intrinsic factor antibody test.The longest gap I've ever had was 5 weeks .after loading doses.

Never again.

Sounds like going by your symptoms you need a regular regime of b12 injections. I hope that is now happening .

[wedgewood]

When you were tested for Intrinsic Factor Antibodies in 2016 , what was the result ? It is known that about 50% of people with P.A. , test negative for I.F. antibodies . They can subsequently test positive. . I think that is what happened to our Chairman , Martyn Hooper . But ,as you know the medical profession is very ignorant about P.A. So many of us on this forum have horror takes to tell . You write that your doctor said “ You only have it checked once ,and you have IT “. Does IT mean that you have the antibodies / pernicious Anaemia? If he means that , then you do have P.A. , so there is no need to have another test .

[may61 in reply to wedgewood]

Have now seen the blood result which was in nov 2014 .It says normal no action It says IF QUANT 1.2 range is (0-6.0 ) A negative result does not exclude PA.Still unsure what this means ,but had my b12 on tues and usually after 2/3 days I feel a lot better But my legs are like bags of cement really heavy And usually after a couple of weeks have to go onto sublingual otherwise I ache all over Have had a dry mouth since last summer but still suffering with it .

[wedgewood in reply to may61]

IDoes sub-lingual really help ? If you can manage on sub-lingual alone , maybe you don’t have P.A. If it doesn’t last for long , you just need extra B12 injections . If your GP refuses extra injections, I would feel like self-injecting . I had to do that when 3 monthly injections were not sufficient to keep symptoms at bay. ( I had had a positive test for Intrinsic Factor Antibodies. ) Best wishes .

[fbirder in reply to may61]

As your doctor to check the British National Formulary. The entry for hydroxocobalamin was changed recently (well, about 3 years ago). The recommended dosing interval was changed from 'every three months' to 'every two to three months'. So there's no reason for him not to try you on 8-weekly jabs.

[may61 in reply to fbirder]

Will try but he’s a penny pincher and his locum told me that not in so many words.

[fbirder in reply to may61]

Suggest you get the nurse to teach you how to self-inject. That will save a lot. Most of the expense for a B12 injection is the cost of the nurse's time.