New BSH guidelines vs NICE guidelines

[AmyG6500]

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.

[Cherylclaire Forum Support]

Sounds good to me, AmyG:

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

[AmyG6500 in reply to Cherylclaire]

Thanks CherylClaire, that's good to know. I will push for the referral if the other tests don't show anything.

[Gambit62 Administrator]

NICE guidelines are here

cks.nice.org.uk/anaemia-b12...

BSCH guidelines are produced by the British Committee for Standards in Haematology

[AmyG6500 in reply to Gambit62]

Thanks

[Holnee in reply to Gambit62]

Thank you, Gambit. Unfortunately, I get an error message that says this site is only available from Great Britain.

[Gambit62 Administrator in reply to Holnee]

different standards apply in different countries. Where are you based?

[Holnee in reply to Gambit62]

I'm in the US.

[Gambit62 Administrator in reply to Holnee]

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

ncbi.nlm.nih.gov/pubmed/233...

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.

[Galixie in reply to Gambit62]

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.

[Gambit62 Administrator in reply to Galixie]

thanks Galixie

[Galixie in reply to Gambit62]

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?):

wire.ama-assn.org/education...

[Gambit62 Administrator in reply to Galixie]

That would be a good one for anyone struggling in the US to trot out for doctors who are refusing to look at B12.

Thanks - have bookmarked it for reference - though guess it may not be around for very long given the nature of the site.

[Gambit62 Administrator in reply to Holnee]

Holnee - if you are a member of the PAS you can access the guidelines on the PAS website

pernicious-anaemia-society....

there is also a summary but again you need to be a member

pernicious-anaemia-society....

this page tells you about how to become a member. There are some support groups set up in the States - 2 I think

pernicious-anaemia-society....

[Holnee in reply to Gambit62]

Thank you both very much! I will see how things go with the neurologist tomorrow, and take it from there. I really appreciate your help!

[helvella in reply to Gambit62]

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.)

[JGBH]

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.