I went back to my GP today with the new guidelines from the PA Society. She said she'd never heard of them and anyway they follow the NICE guidelines. She did however agree to read them. I'd printed off the summary and the full article. So the BSH guidelines are not in NICE? What does NICE say about treatment?
She refused a therapeutic trial of B12 injections because my serum B12 is not low. She has sent me for a retest (now I've been off my supplements a few more weeks) and also for the Anti-Intrinsic Factor and Anti-Parietal Cell tests. I believe these may show if it's Autoimmune PA, but won't necessarily be accurate. They also wouldn't help diagnose a functional B12 problem. Does that sound right?
She did say she'd refer me to heamatology if I remain unconvinced so I suppose that is good thing, depending on who I see (based on other people's experiences) and they can authorize MMA and HoloT tests.
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AmyG6500
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I started in January 2015 with B12 level of 196ng/L, only just below range in my area.
With B12 blood levels 6 wks after my 3-monthly injection rising higher than testable at >2000ng/L despite feeling (and looking) worse than ever, it was only the result of my MMA test: 351 nmol/L (on NHS: bloods taken at GPs sent to St Thomas') that could officially confirm Functional B12 Deficiency to my GP. This was on condition that renal tests proved okay, which my GP had already done. If it takes a haematologist to do this, have it done.
Trouble comes after this point, as if you have Functional B12 deficiency, there are NO official guidelines for treatment, and not necessarily any pattern to symptoms, since intermittent malfunction or blocking of B12 to tissues difficult to quantify or regulate. WE might know that "loads of it" is the correct dosage, in the hope that enough gets through to the useful side, but do THEY ?
PS: The answer appears to be "not yet"..... see my latest post! Best wishes, best of luck x
treatment regimes in the US are quite different and vary from state to state and probably even between levels of jurisdiction.
The CDC did have a very good micro-site in relation to treatment of B12 deficiency but it got lost in a revamp of the site a few years ago.
There are a large number of materials that you can access on the NCBI website - pubmeds - often on abstracts but that may be something that you could use in trying to address issues with your doctor
Galixie do you know if there are any more general guidelines applicable in the US - eg anything produced by the AMA? think I've seen something in the past but didn't book mark it.
I'm not aware of anything particularly useful. There's this somewhat disheartening page that mostly emphasizes the placebo affect: journalofethics.ama-assn.or...
This is a site similar to PAS, but I doubt it gets much attention from practicing physicians: rarediseases.org/rare-disea...
The only thing I know of that US doctors are supposed to abide by is a portion of the FDA regulations that state that treatment should be injections: accessdata.fda.gov/scripts/...
"The parenteral administration of cyanocobalamin or vitamin B12 is generally recognized as a fully effective treatment of pernicious anemia. Parenteral cyanocobalamin preparations have not been and are not authorized for use except by or on the prescription of a duly licensed medical practitioner."
Even the CDC doesn't seem to have anything useful on the topic. It's treated as if it doesn't exist in the US.
I also just found this from the AMA which mentions in passing that one of the most frequently missed questions on the practice licensing exams is related to B12 deficiency (why am I not surprised?):
Just a note: The Clinical Knowledge Summaries used to be on the NHS website, but were adopted by NICE some time ago. As I understand, they are not full NICE guidelines with all that implies regarding status - the NICE "branding" seems to me to be misleading. People see NICE and assume that they are formal guidelines.
(We have the same with thyroid - no NICE guidelines but CKS pages.)
Good luck with haematologists... If they are as useless in US as they are in Uk am sorry to say you won't get much luck, never mind help.
Have seen 2 haematos in UK and they both tried to get me off B12 injections!! I went to see them for something unrelated to B12 but they spent most of the consultation time to tell me B12 were not necessary, etc.... placebo, etc... lack of evidence... you konw what they are like, I believe.
They were unable to answer the questions I asked them about red blood cells and other issues... and they call themselves haematologists! Despair indeed. They even told me they did not take serum iron levels into consideration anymore... when mine was at rock bottom, they insisted I was not anaemic (microcytic RBCs, lowish haemoglobin) yet when I saw another consultant for something else she told me I had been anaemic... So not only are they incompetent they also lie.
I wish I could be able to give you some hope by visiting an haematologist... Of course, you might be extremely lucky in finding a rare and very good haematologist. Do hope you can solve your problem. Best wishes.
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NICE Guidelines re B12 & Haematologist referrals
B12 treatment query
Further Injections refused after loading doses while symptoms still slowly improving 
