Specialist in B12 deficiency / prescribing EOD injections

[Lincsangel1]

Has anyone found a specialist/ consultant that has correctly prescribed EOD injections till no further improvement? I was talking to my GP yesterday, about my current prescription of just 1 ampoule every 8 weeks. He knows I self inject

He said he was unable to prescribe more often...BUT if a specialist/ consultant advised him to prescribe EOD till no further improvement he would...

He has previously asked the advice of a neurologist and a haematologist

The neurologist said I didn't need injections as my level was now 2000

The haematologist was a little more helpful, stating the NICE guidelines.. but added something along the lines of that after initial loading dose , 2 monthly should be adequate

Has anyone had better luck ?

My GP is willing to contact a specialist/ consultant requesting guidance on prescribing

[Mixteca]

Following! Had no luck myself and also need to find that specialist. It's a total nightmare doing all this alone without that tailored treatment.

[Cherylclaire Forum Support]

I did get close - my GP requested three injections a week for me although nurses were always too busy to book in more than two a week. Still....

This was because I had been unable to respond on the 6 loading dose injections and maintenance injections every 3 months for B12 deficiency. I was still deteriorating. My low folate and ferritin were addressed with a 3 month course of supplements each.

Ongoing tests, then MMA tested - and found to be raised. This, with other elimination tests, resulted in a diagnosis of functional B12 deficiency confirmed by the testing laboratory, and gave me an immediate restart at two injections a week.

This frequency, depite reservations from some of the nurses, continued for six months - because my GP could see that it was working. But six months later, it stopped working so well and I was referred to secondary care. I saw many consultants, no B12 experts.

Except for a senior ENT consultant, who encouraged me to continue self injecting EOD (which is what I had been trying) - that I should not give up but be persistant, because it could take a very long time to recover. He also knew what B12 deficiency looked like without needing confirmation from blood tests etc.

I owe my improved health to my persistant and supportive GP, and this consultant's advice when I was getting disheartened.

The NICE guidelines do not seem to be adhered to often regarding treatment for those with neurological symptoms - but the revised guidelines are due to be published in November and I'm hoping they are going to lead to better care for B12 deficient patients.

The loading dose is followed by a maintenance dose - which means that the loading dose should bring you to a level of health that you would be happy to maintain, and that an injection every 3 months would be able to give you that as a lifelong assurance.

For many people, this is not the case - and these people are often forced to self inject to get their symptoms managed sufficiently. However, this is not always the same thing as being "well".

[WiscGuy in reply to Cherylclaire]

It's my impression that the loading doses, then monthly or as seldom as every three months is appropriate for B12 deficiency with only hematologic symptoms, which clears quite readily on that schedule. Neurological symptoms are a much tougher nut to crack, which accounts for the recommendations for much more intensive treatment.

According to "The Many Faces of Cobalamin (Vitamin B12) Deficiency", published in 2019 in the peer-reviewed medical journal, Mayo Clinic Proceedings, medical schools have for decades been teaching medical students that B12 Deficiency is always accompanied by Megaloblastic Anemia, which is not true in patients with neurological symptoms, and which accounts for the current confusion amount doctor regarding B12 Deficiency diagnosis and treatment.

[Cherylclaire Forum Support in reply to WiscGuy]

I don't think it is even that cut-and-dried.

I doubt that those with haematological symptoms all manage on 3-monthly injections. I doubt that a division can easily be made between all who have neurological symptoms and all who "only" have haematological symptoms, any more than a clear division is possible between those who have PA and those who "only" have B12 deficiency. Not without the tools to do that. A positive/negative IFab test certainly isn't it.

Martyn Hooper, in his book, quotes Devalia et al:

"Neurological presentation may occur in the absence of haematological changes and early treatment is essential to avoid permanent neurological disability. Low cobalamin levels of uncertain significance may occur with non-specific symptoms and no anaemia. Patients with strong clinical features of cobalamin deficiency may have serum cobalamin levels which lie within the reference range."

Tangley and not easily divided. Why some need more and some don't needs investigating further, and so we are all still awaiting the research evidence for answers.

Some of us are still here waiting - and very few the same !

[Littlelodge123]

My GP did this after taking advice from a Haematologist. I got them EOD for about 12 weeks as I couldn’t tel myself if things were getting better with more injections

[newlandvale]

My GP has said exactly the same thing and is afraid of being struck off if acts alone . I feel so ill now and hate the NHS so much I would gladly be rid of it.

[MorningMist in reply to newlandvale]

I had exactly the same reaction from my gp. Unless I absolutely need to be referred to a consultant I am determined to keep well away

[JanCymru]

I think we would have more luck in finding a unicorn at the bottom of the garden! From the experiences of folk on here (myself included), the maintenance doses are no guide for good health, and no GP I've seen is willing to go with your symptoms. NICE guidelines are totally ignore (again I include myself in this with neuropathy and being refused EOD jabs despite progressive numbness in my right toe, now in my whole foot). As PA patients we must be the most poorly represented and treated group within the NHS - given the whole body implications for misdiagnosis the cost to the NHS is unimaginable. Hoping you find the unicorn - if you do, let us know please!! xx

[yorkshiregirl4]

When I joined this fabulous group I was warned that finding a doctor with an interest in PA would be extremely difficult to impossible. I was initially optimistic that with sufficient investigation I would be successful. Not so!! I have been given so many ridiculously inaccurate statements I cannot believe it. My GP continues to refuse to take any notice of the NICE guidelines for patients with neurological symptoms and loading doses. A Consultant told me that after receiving the 5 loading doses I had enough B12 to last me several years! I am getting fed up of not being believed by the medical profession. I can trace my symptoms increasing about a week after the B12 injection but nobody in the medical profession believes me. I have now spoken to two consultants/specialists and two GP's and none is willing to 'get off the fence' and even agree with the NICE guidelines let alone a more realistic B12 injection routine. I hope you are more fortunate and do let me know if you find someone who is helpful. Good luck and best wishes.