Advice on what to do next

[Emmapemma]

Morning all,

I posted before Christmas regarding my new diagnosis. My doctor found antibodies by chance when she was checking for reumatroid arthritis antibodies after I'd gone to her with fatigue, headaches and joint pain mainly in my knees. She said it was intrinsic factor antibodies and she would just keep an eye on my b12 on a yearly basis as they were now fine. I didn't know anything about PA before this so didn't realise it may be what caused my symptoms but I went home and read one of the Martyn Hooper books about PA and B12. And as I read some of the patient cases I found all of my mum's and a lot of my siblings symptoms in these and I already know my dad had it. He was treated with tablets and looking at his symptoms now, he sadly passed away in an accident last year, he would have definitely needed injections, sleeping all day, memory loss, shuffling walk. My brother's and sisters have now got themselves tested too and my oldest brother who suffers with fatigue and depression has got PA too.

I found some vit b12 tablets on sale in October and thought I'd try them and see if it helped. I took them every day for a month and from about a week in I started feeling more energised and my headaches disappeared. Even my joint pain was improved. I went back to see another GP at the practice and said I really think I should be treated for it. She said it is not my intrinsic factor antibodies that were positive but my paretal cell antibodies and I know this test is not enough to give you a diagnosis, she didn't seem to know this though. She kept saying but you are not anemic so you don't need treatment, you don't want to get into the bother of injections. I said it is not a problem, I'm a nurse and I can either do it myself or ask my colleagues at work to do it for me. She said she wanted to check my bloods again and she would contact a haemotologist for advice seeing as my family history is so strong.

My b12 came back over 500 (197-771), folate 12.5 (3.89-26.8), MCV 86.9 (78-96), MCH 28.4 (28-34), MCHC 327 (320-360) so all normal and pretty much the same as last time. But since I stopped taking the vit b12 tablets My knee pain has got worse and I feel so tired.

The doctor said she would ring yesterday but she didn't, I'm guessing she felt as it was all normal it's not worth her while. So I'm thinking I don't want to feel like this anymore and maybe I should just start myself on the tablets as I think I still have some good cells in my tummy but then I'll never properly get a diagnosis and I will most probably need injections at some point... Just can't decide what to do next... Any advice welcome, thanks

[clivealive Forum Support]

Hi Emmapemma personally I think that if the B12 tablets are beneficial - keep taking the tablets.

I am not a medically trained person.

[Hidden]

Keep taking those B12 and if necessary folic acid. You may have to correct your diet to prevent GI/stomach problems. I found D3 absolutely necessary during non summer and took a general B complex for a short time.

[fbirder]

Yup. Like clivealive says, if the tablets make you feel better then keep taking the tablets. They can’t do any harm.

The Parietal Cell antibody test is no longer recommended, because too many normal people test positive.

I found that taking methylfolate instead of folic acid has almost totally stopped by joint pain (that I’ve had for almost 40 years).

[Emmapemma in reply to fbirder]

Thanks, I'll try the folate one of it's not completely better with b12. I should probably cancel my yearly b12 as it's always going to be high from now on though.

Do you know if you can still check homocysteine levels and MMA if you are already on b12 tablets?

[fbirder in reply to Emmapemma]

You can check MMA and hCys, but they're very unlikely to be high.