Dr' s appointment

[emzy13]

Finally got an appointment at the doctors for Thursday not with my doctor though I couldn't get into him until the 27th of July! I wasn't waiting that long. What levels and tests am I requesting they do? I know folate and active B12 but is there anything else I need to be asking for please?

[Gambit62 Administrator]

The main tests would be folate and B12 - assuming you are UK based. Ask for the results when they come through and put them here if they don't come out as 'low' as they may nevertheless be low.

Strongly recommend that you take a few things with you - namely a checklist of symptoms with the ones you have marked.

pernicious-anaemia-society....

If your results are in the grey zone then there are tests that can be done to clarify the situation - namely MMA and homocysteine but unlikely you would get these done as well as B12 serum and it might be a fight to get them done as clarifiers.

Possible that you might be able to get IFA done at the same time but again - that's more of a follow up and its so hit and miss ...

If you haven't had thryroid tested then it would be worth asking for that to be looked at as there is a huge overlap in symptoms and thyroid and PA often go together.

[Sleepybunny]

If it was me, I'd ask for ferritin as well as the folate, serum B12 and active B12 and I'd ask for a full blood count.

If you get the full blood count, look particularly at the MCV and MCH results. High MCV and high MCH can indicate a macrocytic anaemia.PA is a macrocytic or megablastic anaemia. If you have both low iron and low folate and/or B12 then your MCV may appear "normal" and doctors may miss problems. Low iron makes red blood cells smaller, low B12 and/or folate makes red blood cells larger.

It might be worth asking for homocysteine and MMA tests and a blood smear. If they are reluctant, you could offer to pay. A blood smear will show if there are abnormally sized or strangely shaped blood cells.. it's not often done.

As Gambit mentioned it might be worth getting an IFA (Intrinsic Factor Antibody) test.

Are you already supplementing with B12?

The reason I'm asking is that this will affect your results. I feel I wasted a lot of money getting private blood tests as I was supplementing and think the results are probably invalid.

I found it helpful to get paper copies of blood tests. I learnt not to trust what I was told.

[wedgewood in reply to Sleepybunny]

Strange that you mention Homocysteine. I learnt about it online. That low levels of b12 can lead to high levels of harmful homocysteine. I bought 2 test kits from York laboratories when they were on half-price offer. (normally £150 each!) I tested before `I started the B12 loading doses.(I had to find out from a private doctor that I had P.A. My serum level of 150 for B12 was considered OK by my NHS G.P.) and the result was 15. I tested after 6months of B12 and folate (self-administered as can't get more than the usual 3 monthly) It was then 7---a great improvement. I reported this to my NHS G.P., and she said that she knew nothing about Homocysteine! I can't tell you how my confidence in the NHS has been shattered. I told my doc that I realised that I had chosen the wrong illness.

[emzy13]

So just to clarify I need folate, ferritin, active B12 not just b12 levels (as I am having the injections every 12 wk I'm due on the 28th of this month.) MMA and homocysteine (if I can get them ones) & an IFA test. The doctor is gonna love me & I bet she says oh you don't need this and that & you have been reading too much into this..... I will update as to what they say & again with test results. Any more info before tomorrow would be great, but in English pls not gargon lol

[engels in reply to emzy13]

The Active B12 test is not available on the NHS so you should be prepared for your doctor not to be aware of it. I don't think it's worth doing anyway if you are already having B12 injections.

[Gambit62 Administrator in reply to emzy13]

If you are already having B12 shots then serum B12 isn't going to mean a lot unless it is low indicating that you are someone who does not retain B12 as well as others and so needs more frequent injections.

MMA and homocysteine aren't likely to show up anything either.

The IFA test is a possibility as it is a few months since your last injection - however it's less than 50% accurate so...

[Sleepybunny]

The Active B12 test results may be affected by the fact you are receiving injections as possibly MMA and Homocysteine might be. I also think IFA tests may be as well.

This link might be useful.

b12deficiency.info/b12-test...

[emzy13]

So what am I actually asking for? Folate obviously and just normal b12 ? I have been on the 3 monthly injections for 12 yrs now. I know I'm getting worse exhausted all the time, I ache from head to toe, memory is atrocious, forgetting a conversation halfway through it especially if I'm interrupted. I want this sorted and need to assist the doctors as much as possible. I live in a little town in the middle of no where in Cumbria, so I doubt our doctors are in the know. Tia X