Hi all - I spoke to a Dr today about when to get my B12, folate and ferritin re-tested. She said, given I am on an iron supplement, my ferritin levels should be tested in 4 months but that B12 isn't usually re-tested until 6 months post-loading injections. Is this accurate in your experience?
She also said it wasn't possible to request the specific blood test that distinguishes active from inactive B12...but knowing how vague and potentially inaccurate the total serum B12 level test is, this seems crazy to me? Do I really not have the right to request this particular test or is she just trying to fob me off again? (I'm in the UK, incidentally).
Still feeling pretty foggy and listless with my head feeling like it weighs a tonne most days. Dr said I probably won't feel better until at least 6-8 weeks after loading doses/starting iron tablets. Hope she's telling the truth!
Hi Gilly27 How many loading doses are scheduled and then what frequency? Do you know what your Folate level is?
Hi again! I had 5 shots over two weeks and they finished last Wednesday. My follow up injections are scheduled for every 3 months - so I would have had one top-up before getting retested (just before my 2nd top-up, I believe).
My folate level was 5.3 (3.10-20.5) so at the lower end of normal.
(B12 was 135, 187-883: Ferritin 22, 22-275)
Hi Gilly27 if you are still suffering neurological symptoms then your loading doses should have continued "until there is no further improvement" according to both the N.I.C.E and B.N.F. guidelines on treatment for B12 deficiency.
cks.nice.org.uk/anaemia-b12...
Click on the link above, then on "Scenario Management" and scroll down.
You might think to mention this to your nurse/doctor.
Also you Folate is on the low side and may need supplementing.
As for testing your B12 as Hidden says there is little point whilst you are having injections - unless it comes out very low.
Do you have any idea of the cause of your deficiency? Diet, surgery, medications, other diseases etc?
Hi CliveAlive, sorry for the long delay- life got the better of me for a while!
I spoke to my GP about possible neurological problems I've been having including memory issues (primarily with names and words but also details of past events etc) and irritability/depression (I've been on the highest dose of Citalopram for years) but my concerns were completely disregarded. They really don't like the idea of more frequent injections do they!
I'm now hoping that I will somehow be able to get the MMA and homocysteine test (either with or without the Active B12 test) to better understand my current situation. I'm going to wait 3 months after my first top-up injection and then request these tests (or go private if necessary).
As to the cause of the B12 deficiency and low iron, I honestly haven't a clue! I am not a vegetation by any means and both the parietal cell and intrinsic factor tests came back normal. As did the Coeliac test. I don't take any medications that would suppress B12 as far as I'm aware - except maybe the combined pill. But would that account for my relatively low iron? I don't know..I'd really like some more investigation into the cause of the deficiency, I can only hope that my GP will eventually refer me if I bring it up enough..
Incidentally, I am currently supplementing B12 (injections), Iron (prescription tablets) and Folic Acid (OTC).
Many thanks!
I believe certain contraceptive pills can have an affect on B12 levels but as I say I'm not a medically trained person.
I wish you well and hope that you see some real improvement now.