GP stopping injections with no alternatives offered

[Kodey]

I had the test for the anti-intrinsic factor anti bodies and the doctor has text me to tell me it came back negative so that must mean it was all my diet and I must be ok now as my levels are normal. So he is stopping my injections.

Of course my levels were 'normal'. The last time it was checked was December, only 2 months after my initial course of 6 injections. I'd be concerned if that hadn't raised my level to a normal range.

I don't see how this could be my diet. He sent me to a list of sources of B12 - meat, cheese, eggs, milk - all food I eat regularly. I also take a daily multi vitamin that contains the daily recommended dose of B12. There has been no significant change to my diet in years so I don't see how it could have caused a deficiency last summer but now be absolutely fine.

I have an appointment next week to discuss my blood test results but I'm terrified he won't listen. When I've been due my injection, my symptoms come back a week or so before hand but clear up within a day or so of the injection so they really seem to help. I'm so scared that my medication is being stopped with no other alternatives or investigation being done.

What do I need to know for my doctor's appointment? How can I make sure I get the help I need? I've heard the anti body test isn't very reliable and regularly gives false negatives. Is there other tests that should be done to determine the cause? I really don't see how it could be my diet.

[SallyRees]

I’m certain more knowledge folk will be able to advise soon, but this link will provide you with lots of advice re gp. I wish you every success 🙂

b12deficiency.info

[Nackapan]

Firstly your doctor should know the IFA test shows 50 % of thoses with PA .

It does not mean you havent PA

Secondly that should have been at the start!!

It should now be on the responses to inje tio s.

Look at the BNf guidelines and all the links that have been posted using the search bar above.

List your symptoms.

List your diet!!

Hope your appointment goes well.

At least an opportunity to discuss it.

If you are PAs member they can help.

[Kodey in reply to Nackapan]

Thanks. Sorry if this is a really stupid question - what's BNf? Not heard of that before.

[Nackapan in reply to Kodey]

Sorry . British National Formulary . Nice guidelines for b12 perhaps

Just Google it .

G.ps should uses it as a guide.

Hope it useful to you

[Kadwell]

Hi Kodey

My test result also came back negative and my b12 levels within range. However, because I told them that I was still experiencing pins and needles and dizziness, they agreed to continue with the injections. They will only agree to injections every 2 months though, which for me isn’t often enough at present ,so I self inject in between.

Good luck. I hope they listen to you.

[mar51]

I too have been told today when I went for my B12 injection that its my last one! I couldn't believe it and was in tears when I got home. My GP never told me it was going to be a short term thing. I get terrible symptoms when my 3 monthly I ejections are due. I had to fight to get the injections in the first place. I'm so sick of GPS that seem to have little or no knowledge/sympathy with this affliction.

[Gambit62 Administrator]

Tell your GP to look at the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which can be found here

onlinelibrary.wiley.com/doi...

These discuss the limitations of the IFAB test in some detail.

There is such a high rate of false negatives that the guidelines refer to IFAB-negative PA as a result.

A positive on IFAB is good evidence that you have PA. A negative is a long way from proving that you don't have PA. If your diet contains plenty of B12 then you obviously have an absorption problem of some sort.