Where did I go from here - if anywhere. High b12

[Irismay]

Hello again everybody. Quick re-cap - b12 deficiency approx 5 years ago no diagnosis but b12 injections started. Gp stopped injections September 2017 because levels were >2000. Fast forward to now after 3 blood tests over a 6 month period my b12 levels read 1600, 1560 & today 1229. Fbc are all within range, a couple slightly above or below- serum alanine 64 (range 10-40) - total white blood count 3.9 (range 4-11). Folate was 6.6 (range 3-18) & ferritin 47 (range20-350). Gp sent me for ct scan of abdo & liver scan - both appeared normal. Gp as a final shot sent off a sample of my blood to a consultant chemical pathologist for his input & he said he would check for macro b12 (b12 complexed to immunoglobulin - apparently!). Phoned the surgery for results yesterday & they said my serum vitamin b12 was above range but no further action is required. My questions are: do you think the lab have just performed a normal b12 test by mistake or am I missing something? I thought a macro b12 test would be something different to the serum b12 test. Also, if my fbc is normal can I just assume that I'm a bit weird & my high b12 is a normal finding? Is it possible to have nothing wrong with you even if you have a high b12? Incidentally, I have symptoms of lightheadedness interspersed with spells of vertigo, painful spine neck & ribs (probably due degenerative discs diagnosed 20 years ago) painful joints. I had a raised ANA blood test a year ago & transient bone marrow edema. Phew - sorry to bore you with my ailments! Thank you for listening.

[Gambit62 Administrator]

Irismay - suggest you look at my response on this post

healthunlocked.com/pasoc/po...

[Irismay in reply to Gambit62]

Hi, thanks again for your help. I did join PAS quite a while ago thanks to your advicein a previous post and they will be my next step if I can get the energy to present my case. I am so fed up going to my GP & getting nowhere. I have presented nice guidelines to 3 different gps in my practice, one of which "specialises" in heamatology & is quite insistent that it's nothing to worry about having a high b12 if all other tests are normal. That's why I thought I would just throw it out there again for your opinions. I feel like I am a hypochondriac & worrying about nothing & I'm so fed up. Even my husband says I should accept what the GP says & get on with life & I would if I felt well enough. I do feel they have carried out alot of tests and have come to the conclusion that I have a high b12 for no obvious reason. They certainly won't look into it in any more detail because nhs don't cover the cost of intricate tests & they've made that perfectly clear. I would pay for private tests but I don't know what to ask for. My b12 level has been dropping slowly over a year do i guess im heading in the right direction! All I need to know really is whether it's ok to have a high b12, if all other bloods are normal but no one seems to be able to answer that.

Regards & thanks

[Gambit62 Administrator in reply to Irismay]

resources to try

watermark.silverchair.com/h...

discusses the phenomenon of functional B12 deficiency in passing - high serum B12 but all the signs of B12 deficiency.

If they have done MMA and homocysteine then they will have ruled out functional deficiency, though the author of this article expresses doubts as to the vailidity of using these tests to completely rule out a functional deficiency - there are a lot of processes in cells that need B12 and the above measure the efficiency of only two

bloodjournal.org/content/bl...

and this section on the PAS website aimed at helping medical professionals improve the diagnosis and treatment of PA

pernicious-anaemia-society....

[Gambit62 Administrator in reply to Gambit62]

just as a PS - if you have a functional deficiency then the process that causes it tends to keep B12 in your blood much longer so the fact that your levels haven't dropped to/below normal in 6 months suggest to me that the efficiency with which B12 goes from blood to cells has probably been affected by shots - but I am not a medical professional - just someone who knows I need to keep my levels well above the measurable range in order to function

[Irismay in reply to Gambit62]

Hello Gambit - thank you for all your on going help. I've had trouble getting on the Silvermark website but will keep trying.

I haven't had the MMA or homocysteine tests as my GP says they're too expensive. I'm not sure about private tests as it's all so confusing as to what I need.

Leaflets I took with me to the GP who said "its no good showing me anything - if your b12 is as high as it is we will certainly not be giving you any injections- I have had a meeting with the practice manager & other GPS & they are in agreement that it would not be appropriate to reinstate the injections ". She also pointed out that I have had a ct scan & nothing sinister was seen & therefore i shouldn't worry about a B vitamin being a a little higher than the norm. End of story, I got the feeling she won't be discussing this with me anymore!

Can you suggest the best blood tests I could do privately or shall I just wait & see if my symptoms get worse & be forced back to the dr?

Thanks again for all your help.