High b12 struggle goes on: Hi - thank... - Pernicious Anaemi...

Pernicious Anaemia Society
22,775 members16,056 posts

High b12 struggle goes on

Irismay
Irismay

Hi - thank you for all your helpful replies in the past. I have had a ct scan of liver which was normal & further liver blood tests following above range reading of alanine aminotransferase level & they have also come back within range, which is a great relief. This still leaves the fact that my b12 level is 1600. My mcv level is 100 and the only other blood work that came back a bit below range was white blood count of 3.9. So my GP told me i should be pleased my b12 was high and everything else was normal so no further action required. I presented evidence in what ithought was relevant to high b12 following advice from Gambit62 (thank you for that) - less than half a page on treatment path but GP said it's irrelevant because fbc was within normal range. I did speak to someone at PAS but they weren't very forthcoming of what I should do next other than see a different GP. Should I just accept what my GP says as everything appears normal (except how crappy I feel)? Im beginning to think maybe i am just looking for something to blame on how I feel.

16 Replies
oldestnewest

Hi there I am new here. I also have high B12 of 1552 but I supplement b50 and b12 both which are high and I take multiVitamin which also contains B12.

do you supplement B12?

do you have silver fillings?

Have you done hair mineral analysis test? (the-natural-choice.co.uk/Ha...), This test will tell you which minerals are low and which are high, then you can go from there.

Keep researching, answer is not far. Best

Irismay
Irismay in reply to FixHealthNow

Thank you - no I don't supplement but I think that's the way I might have to go to help myself as despite what my gp is saying i do feel i have a functional b12 deficiency. Hair mineral analysis sounds very interesting too, i will look into this. I did have silver fillings many years ago but these have been replaced. Thank you for your advice it's given me gmfoid for thought. Best wishes to you.

FixHealthNow
FixHealthNow in reply to Irismay

Please do the test and update us. if your silver fillings were removed in an unsafe manner, it may have caused minor damagesm (if any) and you can find out using the hair test. to interpret the hair test for free, join the andrew cutler chelation group and post it there. all the best

Gambit62
Gambit62Administrator

Irismay - is there another GP you could see? It sounds as if the GP you are speaking to thinks that B12 deficiency is all about anaemia - it isn't and that is not helping. If there isn't a GP at that surgery that you can see then is there another practice that you could move to - and get a copy of your medical records showing that you were on maintenance doses until 15 months ago.

It may be worth trying the PAS again - particularly if you are a member - or joining and contacting if you aren't a member at the moment.

Irismay
Irismay in reply to Gambit62

Hi Gambit62 - nice to hear from you - i am going to try another gp within the practice & maybe even approach the Practice Manager. Do you think it's normal to have a high B12 reading when everything else appears normal (apart from the way I feel which is 2 stoneweight loss over 8 months, stomach issues, severe back & joint pains, frozen hands & burning feet at night, depression) . I dont want to go through any more aggro with the surgery if what they are saying is true. I dont think they'd do any more tests, especially after a ct scan. My GP wants to treat me for depression but I've never suffered from it before through my life & I don't want to start any treatment because I feel sure it's because of B12 & I just want to be able to prove it by starting the injections again. Reading the info you previously recommended ut does state that they should always try & find a reason why there is a high b12 present a patient. My GP says everything else is normal I'm just one of those people who naturally have high b12. Thanks so much.

Gambit62
Gambit62Administrator in reply to Irismay

if you have had injections then yes it could be. The fact that your B12 is still that high that length of time after a B12 injection suggests that you may have a response to B12 that is keeping the excess trapped in your blood and not letting it pass into your cells either - possibly TCII antibodies at work. Its likely that you have a functional B12 deficiency which would mean that if they tested homocysteine and MMA they would be way over the top of the range because there just isn't enough B12 in your cells and hasn't been for a long time - and won't be for a long time if they continue to leave you without injections.

Whilst it is possible that very high dose supplements might work for you injections are going to be the most effect way of getting back to where you need to be.

This is an article on the causes of high B12 and the functional B12 deficiency that can accompany it

bloodjournal.org/content/bl...

and this is an article on TC11 antibodies after treatment with hydroxocobolamin

bloodjournal.org/content/bl...

Irismay
Irismay in reply to Gambit62

I have in mind to ask outright for homocysteine, mma levels, intrinsic factor, parietal cell antibodies & TCII blood tests to be done. i dont know if they do this in a surgery setting or whether it would be a haematologist or whether they will just laugh at me! I did mention it might be a functional b12 problem but gp just ignored my suggestion. It seems very complicated & I appreciate very much the help you have given. My appointment with the GP is next Thursday so I'll try once more with my presentation. Very best wishes.

Just as a postscript - if I did have a functional b12 problem would I continue to deteriorate?

Gambit62
Gambit62Administrator in reply to Irismay

yes, b12 is about what is going on in your cells so if you don't have enough getting through - despite the high levels in your blood - you will continue to deteriorate -

functional B12 deficiency seems to be about the efficiency of transit from blood to cells with the result that enough can get through if your B12 levels are really high - eg off the top of the measurable range.

I know there is a test for TCII antibodies but it isn't one that I've ever seen mentioned as one done outside of a research lab.

At this point I don't think testing for parietal cells or intrinsic factor antibodies are going to be useful tests. These relate to absorption of B12 from food so not relevant if the problem is B12 getting from your blood into your cells.

Irismay
Irismay in reply to Gambit62

Oh that's really useful, thank you for that. I guess I'll just have to play on the functional deficiency & get down on paper my evidence to present. Do you think a private haematologist would help? I hear of some people going to Guys& St Thomas in London for specific b12 tests. Its a bit of a hike from where i live but wouldnt mind if it's worth it. Thanks for your very prompt reply. Best regards.

Gambit62
Gambit62Administrator in reply to Irismay

St Thomas do full suite of B12 tests - serum/active/homcysteine/MMA but that's the lab boys - don't know what the haematologists are actually like - or if they do private referrals

Irismay
Irismay in reply to Gambit62

Thank you so much.

Firinne
Firinne in reply to Gambit62

Hope you don't mind me butting in here, Irismay.... I've been looking for an answer to a similar issue my daughter has and I'd like to ask Gambit a question, if you don't mind, Gambit. My daughter's been feeling terrible for ages, I have written about her issues at the end of last year and got some very helpful replies from Healthunlocked members. I was talking to her last night and she sent me her B12 blood test results. She is on B12 injections every 9 or 10 weeks, the last time was 5 weeks ago and she had a blood test last week. The level is now 2000 ng/L - she was very deficient back in October 2016, her level was 120ng/L . I was alarmed at the high result from the latest test but if I am understanding you correctly, Gambit, that isn't necessarily a problem and she will need to continue with the B12 injections until the B12 'tips over' into the cells? Is that right? Should she get any other tests, liver function tests? Many thanks.

Gambit62
Gambit62Administrator in reply to Firinne

Firinne - the result was probably >2000ng/L meaning it is over the limit where the test being used stops being able to measure accurately. At this point that doesn't really mean very much. The reason for raised levels is the injections.

Has your daughter kept a diary of her symptoms and are they returning before she has her injections. If the injections clear the symptoms and they return after x days/weeks then that is the frequency with which she needs injections.

Firinne
Firinne in reply to Gambit62

Thank you for replying so quickly. The nurse who gives her the injections tells her that patients are always desperate for their injections as they feel so much better afterwards. Unfortunately, they don't make any difference to my daughter......we are still trying to pin down just what's wrong with her. Maybe more in depth thyroid tests will be the next step. It's good to know that high result isn't an issue - many thanks indeed.

Gambit62
Gambit62Administrator in reply to Firinne

if the injections really aren't having any affect that would suggest that B12 isn't the only thing going on and something else is causing the symptoms.

Firinne
Firinne in reply to Gambit62

Yes, indeed. I just wish her GP was even vaguely interested in getting to the cause of her symptoms.

You may also like...