I am having an ongoing discussion with my GP about giving me the dose I need for my deficiency (EOD). It has been mainly positive so far, during my appointment yesterday he did acknowledge that he knew little about this malady, he would also need to chat to his partners and get advice from a specialist. I discussed with him about the lack of knowledge amongst all levels of medical professionals and that he needed to contact one who had a working knowledge of B12 deficiency. His response was to task me to find a specialist in B12 deficiency who is employed by the NHS and pass his/her details onto him, he would then write a letter describing my symptoms etc (he knows I SI EOD).
I am therefore asking if anyone has names of consultants who have sympathetic knowledge of B12 deficiency in patients he/she has dealt with. Thanks.
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B12again
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Thank you for this. I have to remember that he has admitted he has little experience of B12 deficiency and until now he would be a numbers GP. I appreciate that PAS has a lot to offer along with others but he is not proactive in this as he is responding to me. Pushing too much info to him would be overwhelming and likely be ignored. He is allowing me to do the footwork. When I have something to email him with I can attach one or two of these useful links (especially club-12.org). you sent. Thanks for them. 🙂
Sorry if it’s obvious, mm27, but I’m not getting your point. Is it that he should do the research and know what I need, if so, I agree. But the reality is, as my experience and posts to this forum bear witness to also, this is not the case in reality. So if I can build an honest dialogue with my GP, and he is listening, then I am more than happy to do some leg work and gain knowledge along the way. Thanks for engaging though. 🙂🙏
We pay a lot of money for health care. My comment is out of anger that on top of that fact I also have to 1. Do the research, 2. Identify the labs I need, and, 3. Educate my MD. Point being we are not reimbursed when we make our own diagnosis after decades of needless quality of life lost by doctors who claim “it’s menopause” or “it’s pre-diabetes” or “probably an ear infection” or “probably something you ate” when all they had to do was listen to collective symptoms, exhibit a bit of intellectual curiosity aka “why does this young woman have hearing loss along with gastritis?” and consider anemia, consider B12. Just frustrated and tired and would rather have used the money given to inept MDs on a nice vacation.
Yes, I really do feel your pain, mm27. We all have that rising frustration and it’s so important to have this forum to let off steam knowing we’re not going to be judged because we’re all in the same boat and seemingly going nowhere. 😣
You are wonderful and thank you for responding and caring. If it helps anyone, I had to request MMA and Homocysteine labs - from own research grrrr - and those were the labs that resulted in finally being properly treated for PA/B12 deficiency. Both severely elevated.
Hi I wonder why GPs are so reluctant to prescribe B12 injections and at first my GP spoke to a Haemotologist! They wrote back and said nothing to do with us! Here are the guidelines about B12=deficiency/ PA 🙈
I think the UK document "NICE CKS Anaemia - B12 and Folate deficiency" says in Management section that GPs should refer patient with B12 deficiency (or folate deficiency) with neuro symptoms to haematologist or seek advice from them.
Thanks sleepybunny, last year when my B12 deficiency began to show in earnest, had loading doses then appointed to 1 per 3mths. Towards end of loadings I started to feel dramatically much better in the ‘head’, fog went, cognitive issues declining, fatigue lifting but after 2 weeks they all returned. I had a phone appointment with a young doctor who categorically said I didn’t have anaemia (remember I’m very new and ignorant at this stage) even though my notes showed two of my blood results, 1 in red print as low and another at the top of the range, I am told later somewhere these are indicative of anaemia. Had IF anti body test after my injections started, came back negative. 🙄 The doctor then said she would guidance from a consultant haematologist. The doctor got back to me next day by text and quoted the consultant as follows, “It is well documented that patients who have these injections have a feeling of wellbeing afterwards”. Essentially, it’s all in my head, it’s a placebo, I’m on a high etc. So now I SI whilst I continue to try and get my jabs through nhs to secure them should need to go in hospital for any reason. I’m living my life now, not perfectly, still healing but this SI placebo is great (sorry for the sarcasm 😉). But I wrote this so it can be seen historically that my confidence in consulting with someone who has no or only mythological knowledge of how we suffer is very low and if I can point the way to medic who is sympathetic the all the better. I’m sorry it’s so long, I know it’s a nightmare for many of us. Thank you for your time.
How fantastic to have a GP engage with you in a collaborative manner and also to admit their knowledge limits. This is so healthy for every one. Doctors are flawed humans with some knowledge and we cannot expect them to know everything. However it is reasonable to expect them to be open to new and better information especially from patients who have studied their own condition.
In other fields we don't expect an expert, say, horticulturist, to know everything, for example if they met someone who cultivated and collected snowdrops they would readily defer to their knowledge of this specialism. So why not the same with doctors and b12?
This private consultant is an iron & B12 specialist who does work in the NHS but he wears a different hat in that capacity. Many of us have been treated by him. He's part of the B12 research community mentioned by Sleepybunny
I’m aware of Dr Klein and have left a message with his secretary, hope he gets back. 🙄 But thank you very much for responding, it’s always encouraging. 🙂
Not sure if he's part of this specific community but I do know he's in contact with researchers around the globe and will at least know many in this group. I've only ever emailed him directly, not through his secretary:
I’m still researching to find this elusive nhs B12D ‘specialist’. I have an option, I will try, via email, talking to the person who heads up CluB-12.org, Dr Julian Owen, a consultant at Addenbrookes hospital and see if he can help or even have my doctor refer me to him. If you don’t try you don’t know 🙂. But, realistically, I’m beginning to realise, I think, that no such beast exists and that the ‘enlightened ones’ are sparsely scatted and can be gp’s or consultants and it is pot luck if you get referred to one. I am trying the long view, I took in the book by Dr Chandy to my surgery and passed it to the receptionist to pass on to my doctor, this was last Thursday, it was a accompanied by a heartfelt letter thanking him for engaging with me in a continuing conversation and hoping he (and the practice) would accept the book to show my gratitude. There was more but all politely written. Please feel free to add any leads you may have, thanks for reading. 🙏🙂
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- and those were the labs that resulted in finally being properly treated for PA/B12 deficiency. Both severely elevated. 
Update on my partner 
Some help please GP going to stop Injections after ten years due to high B12 in blood
Communicating to GP about treatment needs
GP wants me to stop SI. Help Please.!!
