hello, I found a GP willing to implement the neurologist's advice of seven years ago, repeated last October to get me onto B12 injections. But only every other day for two weeks. He said we'll see what happens if theres improvement, but ive had neuropathy for 8 years, and I understand it's likely to take much much longer on frequent injections to get sny response.
Are there any NHS (preferably Scotland) guidelines about neurologically symptomatic B12 deficiency with 'normal' serum B12 and negative IF test? My GP isn't convinced it's B12 related due to normal tests.
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MyrtleMac
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Just had my first one today - all the public hols means it'll take another full two weeks to get them all. Thank you for the much needed encouragement!
have a look at the N I C E website guidelines and the NHS for folate B12 deficiency. They list the treatment for symptomatic and sub clinical deficiency.
I am in Scotland but I’m IFAB and PCAB positive so I definitely have PA. I had neuropathy and neurological symptoms. I told her about the every other day until no further improvement regimen and she referred my case to a haematologist. They responded to say I had to have every other day injections until no further improvement. This was implemented for about 8 weeks then it reverted to one injection every 8 weeks. So at least they listened for a while. I now self inject.
I was at first given the usual (6 injections as loading, then 1 every 3 months) after being found to have B12 deficiency. This did nothing for me and I was getting worse.
My GP got an MMA test done (not easy from primary care) - which was raised. I was given a diagnosis of functional B12 deficiency then, confirmed by the laboratory, which was what the doctor suspected, having already ruled out renal problems as a cause for raised MMA.
I was then given 2 injections a week. The GP had asked for 3 a week but nurses could not fit that in. This frequency continued for 6 months - because my GP could see they were working. In fact, everyone could see that: friends, family, employers and work colleagues.
Three months in, even I knew that it was working, because I could feel that I was being injected. Not that it hurt, just that previously, I had felt nothing at all. I always had to ask "have you done it yet ?" (Unsurprisingly, some of the nurses were very reluctant to follow the GP's instructions on frequency.)
At 6 months, I suddenly got worse again and at that point, my GP sent me to secondary care as she had done all she could. At this point also she decided to revert to my maintenance dose: one B12 injection every month, which was later halved by a locum haematologist apparently in order to conform to the guidelines. 1 injection every 2 months after EOD treatment is usual. This does not necessarily mean that it is always effective.
I now self inject; usually at 2 injections a week now, but I started at EOD (every other day) since I had never had a chance to discover what that frequency might do in terms of symptom control. It has taken a long time to get as much back as I have - but I would have continued to worsen on one injection every 3 months.
No positive IFAb test results (I've had 3) and normal homocysteine, but MMA remained raised for five tests over the course of 3 years. It had finally dropped into normal range on the sixth test. I have seen many consultants and nothing else has been found to explain this.
I would now advise anyone who is still struggling and failing to meet expectations (from GPs, nurses, consultants) of "recovery" from B12 deficiency symptoms on one injection every 2-3 months to request a more frequent regime. Otherwise you will never know what you can regain in terms of health.
Until no further improvement can be gained - not "until nurses protest", not "until GP gets sick of you", not "until GP gets told off by a consultant" and not "until you get worse again".
It should be a given that you be involved in any decision about whether it is possible to improve and when to give up trying for more. I'd like to see that written in the NICE guidelines.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages).
NHS Scotland link about B12 deficiency and Folate deficiency
Lanarkshire B12 Deficiency guidelines are currently under review but hopefully new guidelines will be published soon. Search online for "B12 deficiency guidelines NHS Lanarkshire".
I found a FOI (Freedom of Information) request for Borders Health Board that stated NHS Borders health board uses the BSH Cobalamin and Folate Guidelines. This may have changed as I think FOI request was from a few years ago.
Best way to find the current local B12 deficiency guidelines for your health board is probably to submit a FOI (Freedom of Information) request asking for a link to or copy of them.
Put FOI or Freedom of Information in search box on your Health Board website which should take you to a page explaining FOI process.
Your local MP or MSP may be able to help you find the local B12 deficiency guidelines.
Some of the Health boards have been reviewing patients on B12 injections in recent years.
Review process for patients on B12 injections in Lanarkshire
Many thanks, that's brilliant. Because my case is complicated, I think I'll write up a three column document with the reasons I need longer term, regular IM B12 and the reasons that contra-indicate (with an argument for doing it anyway in column 3).
I had a second loading dose today. Don't know if it's a coincidence but my mastectomy scar caused me a heap of nerve discomfort at the weekend and my tinnitus was mighty loud too, about 24-36hrs after first shot.
My neurologist recommended them seven years ago, based on the clinical evaluation (my iron, folate, B12, ferritin and vit D have all bounced around over the years despite oral supplementation, I have Hashimito's, I'm lactose intolerant and vegetarian - no animal products at all - I take Omrprazole because of the meds I take and I have severe peripheral neuropathy that has spread from my toes to over my knees). But my B12 serum count is within range, and I had a negative IF test two months ago. It seems to me I may have absorption issues rather than PA? It's more to make a case to keep up the frequency 'until improvement', instead of giving me 6 loading doses then one shot every three months. At the moment, that's what I'm being prescribed. Thanks, I will put another post up, check that this is normal!
"It seems to me I may have absorption issues rather than PA"
Has coeliac disease been ruled out and if you had a negative result in coeliac test in past, did GP follow the recommended diagnostic process? Some don't, check guidelines below.
The GP was about 12 and a wee bit...cocky. I did say that my understanding was that the IF test didn't pick up every case, but he said it is right 98% of the time. I was tested for coeliac about 5 years back, as I developed sudden d/h with loss of bowel control -- kept me practically housebound and lasted six months, but no pain, bleeding, and blood tests all normal. Colonoscopy was clear and it was put down to lactose intolerance that had developed out the blue (I get gastric symptoms when I have even small amounts of dairy, and I can't eat eggs either, also recently developed)
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Guidelines for Doctors
End of the NHS road - I need to inject myself
What a waste of NHS Hydroxcobalamin ampoules
The NHS is a monopoly.
