Pernicious Anaemia Society

What to ask hematologist?

Hi everyone!

I am finally getting in with a hematologist next week. I feel like this is my chance to really talk with someone who might know why my B12 is low. However, past experience with doctors leads me to feel that questions I have now won't be answered without more tests, results will be phoned and the discussion i want to have won't take place without another appointment which I would have to request. $$$$

Long story short...wacky thyroid levels due to a switch to generic medicine made me hyperthyroid then back down to hypothyroid from about October to February. Symptoms remained after it was resolved so i asked to be B12 tested in April. Levels low. Sent to gastro., scopes normal. Given RX for monthly self injections, have had two. Now sent to hematologist. Tingling/numbness, twitches, cold intolerance have all improved but fatigue, mild anxiety, lack of motivation all remain.

My mother had PA so that is how I thought to ask for the B12 test. Apparently the IF antibody test was 1 (0-1.1 is normal). I have yet to be told what that means. Can anyone tell me? Biopsies during endoscopy were said to be normal but I do not know if they tested for antibodies.

I would love to know what I should expect at this point from my appointment. Will she just base it off of symptoms and one low B12 result that I should be treated? I am concerned that my symptoms are getting better and it will be a short course of treatment only to slide back to feeling miserable again.

As a side note...if it is not PA, which it seems it is not...could a dairy free diet or short gluten free trial(3 months) create a vitamin deficiency? I am worried I did this to myself. I have avoided dairy for about a year because I did not seem to digest it well (doctor assumed lactose intolerance). I went strictly gluten free for three months as a trial (DEC-March) as suggested by a nutritionist to help support my immune system/thyroid. I admit to being very bad at taking my multivitamin during that time. I eat meat, veggies, fruits.

Thanks so very much for the help! This site is wonderful!


6 Replies

a) IFA test is not a particularly good indicator - estimates of how sensitive it is vary but somewhere around 30-50% so test coming back saying not IFA doesn't necessarily mean it isn't PA - some people have the test done several times before it comes back with a positive result.

Given the family history this does seem the most likely cause.

So one question to ask is specifically about how accurate the IFA test is and whether your result really does prove that it isn't PA ... and if they say it does prove you don't have PA then you know that they don't really know that much about B12

b) Other possible causes of absorption problems are:

- decreasing levels of stomach acid

- gastric surgery affecting ileum

- drug interactions

They may or may not know their stuff on this as it really is more of a gastro area than a haematology area

- general absorption problems such as coeliacs and other intolerances often go with B12 absorption problems

c) You could also ask what they know about functional B12 deficiency and whether this could be a factor - body creates antibodies to TC11 which transports B12 to the cell level meaning levels in blood can be high but at the cell you aren't able to use them. In some people this process is kicked off by high levels of B12 in serum - like the body trying to stop too much B12 getting through but actually you need B12

d) ask about folate - and also ask about MTHFR - genetic problem that means your body can't convert or can't efficiently convert vitamins to methylated forms ... which means cyano-cobalamin may be the wrong form of B12 for you.

e) ask about the regime for treatment - you have obviously had neurological problems - might mean that you need more frequent to start off with - though on the other hand it can take a while to for damage to repair itself.

Would be a good idea for you to keep a diary of symptoms and record how they vary as you have shots and in between shots - though you won't have that as a discussion point but might be useful in future

f) ask if there could be other things going on - eg thyroid - as autoimmune problems often come in clusters.


Gambit, I've seen you mention functional B12 deficiency before. I looked up one of the papers you linked on the subject but it didn't seem to refer to me because it seemed to be about people who have high B12 to start with. Is it possible to have this with a B12 on the low side (mines was 384)? I ask because of this you said: "[the] body creates antibodies to TC11 which transports B12 to the cell level". I feel I have an autoimmune thing going on, and have felt it for a long time, long before I knew anything about my actual physical state via blood tests.

I'm interested obviously because I have an unsolved B12 issue, but also because my doc is driving me nuts refusing to take this part of my problem seriously. I get injections, and I realise I am lucky to do so, but his lack of belief in the issue stalls every bit of progress I try to make.

The other thing that interests me is the MTHFR (gene?) Do you know of a nice easy resource like a video where they explain this simply? (Sorry, meds withdrawal and untreated hypothyroidism take their toll on my intelligence!)

Many thanks for any light you can shed!


Do you know what your B12 levels are now - having started off with low B12 doesn't mean that the anti-bodies don't kick in when levels get high if that is a reaction that affects you ... and that would include having a shot - though chances are that the shot itself is going to put you in a position where you have more than your body can create anti-bodies to but as the levels drop ...

Sorry - only really read a little on MTHFR. Its a genetic mutation - so there is a test to identify it but don't know how you would go about getting it.

it would probably manifest as problems with B9 earlier than B12 but again, only done a little reading around it.

There's a forum - think its ME - called phoenix rising - not part of Health Unlocked - and there seemed to be quite a bit on there about it.


Hi Gambit. Thanks for the info - I'll see what I can find through Dr Google.

My Vit B12 was over 2000, last time it was measured, a few months ago, but that was taken a week after a shot, so no surprises there! It's never been tested since.


When seeing the hematologist explain everything to him/ her. I go to one and he listened great, I did have blood work with me and he could also look up on his computer every test I'd had if I could tell him where it was taken so he could compare them. He new a lot and sent me for more blood work but different right there in there office lab and then saw me back in a few weeks and told me exactly what was wrong! Good luck




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