Are there any Doctors reading these posts?

Evening again (2nd post tonight)

Just a thought ...With so many posts on here complaining about doctors/surgeries 'not listening'/'understanding' PA etc etc is there anyone from the medical profession reading these posts? (Can probably be added to their CPD)

Is this not collective evidence that something is seriously wrong? That we are not all hypochondriacs or needing anti depressants etc and that it's really hard work having to fight constantly to get a jab we believe our body needs.

regards

16 Replies

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  • Have you joined the PAS - there are often reports of ongoing campaigns and the efforts to bring awareness to those that should be caring for the health of the public.

    pernicious-anaemia-society....

  • I am a member of PAS (for around 18 months now). Mainly reading others post. So helpful and supportive - I just struggle to remember what I've read. Thanks for your reply/support.

  • Actually, if there are any MDs that read this forum there's a question I've always wanted answering - PM me with the answer if you want to maintain your anonymity.

    Just how much training do doctors get on B12 deficiencies and Pernicious Anaemia? I've defended the ignorance of some doctors (but not their refusal to correct that ignorance) by suggesting that it's likely to be covered on one Wednesday afternoon, along with scurvy, beriberi, pellagra, ariboflavinosis and all those other vitamin deficiencies with much cooler names.

    Perhaps I might have to ask this at the conference.

  • I have been trying to think how to word a similar post myself. We are such a diverse group of people, ages, countries, backgrounds, surely the odds are there are some doctors/consultants out there (apart from the wonderful Dr Chandry), not just reading the posts but WITH PA/B12def themselves? How do they cope with it? S.I & keep quiet about it? Know & get referred to sympathetic/obliging 'ologists?.

    We have nurses on here who speak out & try to help/enlighten others ,but a savvy doctor would be invaluable to have on board, if only for 'insider' info on ways to try & circumvent the cruel & rigid system of (non)treatment. But also, because they ARE doctors (sad to say because there are some incredibly knowledge people on here) would give credibility to the desperate situation all of us find ourselves in at some point. Many of us are not believed/patronised, but a doctor going public & stating 'I have PA/Vitb12def, & this is my experience..' would probably get a better hearing?

    I believe there is an American doctor on YouTube speaking of his nightmare pre~diagnosis, but I mean an NHS GP/consultant here & now facing the same, the very same ignorance & feeling as helpless & hopeless as a lot of people on here do.

  • Martyn occasionally mentions GPs who are members of PAS, but I would guess they don't post on forums like this for two reasons -

    They are afraid of getting bombarded by the anti-healthcare vitriol often expressed here.

    Any spare time they have is much better spent doing something else, like being with their families.

  • Yes, you are right, any doctor brave enough to stick his/her head above the parapet could risk much criticism, it could get v.personal, but there are many many of us here that would rally to their defence?, and the offenders could be blocked?

    Or is it a case of 'I'm alright Jack/sorted'? I don't really want to think that , I'd rather like to think one of them cared enough to well, err, CARE !!

  • I know that in Holland PA is about 5 minutes in, I believe, the 2nd year or so. Says enough..

    If there are drs interested in B12, like the ones I know (and for sure Martyn knows) they spend their time doing important stuff that will help us all. They already know what the problem is, they 'just' have to prove it. If you want to really accomplish something you have to get as many drs and researchers involved as possible, that's why it's so important to join (not the forum, the society). The more of us there are, the more we can do! And a conference like the one we'll hold is essential for them and so for us all as well. Sticking your neck out as a B12def-doc is not a good idea in general. But the more the better, and the same goes for the patients. The bigger the community, the more influence, the more we can change.

    so join us, all :D (end of recruiting message ;) )

  • I joined the PA society 4 years ago :0

  • Re GP training, I have a great and experienced GP who has also got a degree in nutrition, which is a special interest for them. Yet they still knew very little about B12 deficiency when I first went in with it. They saw it as an anaemia only and stuck to the 'normal' ranges. Their initial advice was to take Brewer's Yeast tablets (although I explained I have difficulty with gluten). They refused to do further reading when I offered 'Could It Be B12' saying they had too much to read already. Then I paid for the Active B12 test myself, and they let me have a homocysteine test. I then got treatment.

  • I've been a member for 18 months. I only know one other person with PA so the Pas website and this forum have been invaluable. Thanks all for your replies.

  • I agree that it is so very difficult for Docs to step outside the box and risk losing their licence to practice.

    In the Thyroid arena it certainly happened where one Doc was constantly hauled before the GMC for helping people to wellness. Sadly he died at too young an age having suffered a stroke and is greatly missed by many.

    There are others too .....

  • Morning, re my recent posts & responses..I think somehow I have been misunderstood. I don't mean why doesn't some doctor come on here, declare publicly who they are & denounce colleagues lack of care/treatment/knowledge etc. There would be little point in that & would certainly put them in a very vulnerable position.

    I mean do what we all do, post anonymously, but declare their profession, like those who say 'I'm a nurse.'.share their experiences with us, tell us how they cope with it, give us information, what was it fbirder wanted to know? just how much training in such conditions do they get, who would know better than a doctor, questions only they could answer? & it all helps us understand more, that's what we all come on here for isn't it.

  • Declare their profession? Well, maybe there just aren't any doctors on here. As I said the few that are interested in the subject are very busy people (because they have to see loads of patients of course!) and hear enough patient stories as it is. I am generalizing now and there are always exceptions, but the doctors I've spoken to over the years have way too many things going on for them to have time to hang around a patient forum.

  • As you say "Many of us are not believed/patronised, but a doctor going public & stating 'I have PA/Vitb12def, & this is my experience..' would probably get a better hearing?"

    Would an anonymous poster claiming to be an MD stand any more chance of being believed?

    I suppose they could always do what I've contemplated - get a diploma in Naturopathy (only £29 - online exam - membership of the Complementary Medical Association thrown in). That certainly seems to be held in great regard for some reason.

  • I agree that it is so very difficult for Docs to step outside the box and risk losing their licence to practice.

    But nobody's asking them to do that. They are not going to put their licence at risk by giving patients more frequent injections as long as -

    It does not put the patient at risk.

    It will be in the patient's best interests.

    That's the government guidelines on off-label prescribing gov.uk/drug-safety-update/o...

  • Twas just a comment :-) Not diagnosing in the first place does put the patient at risk as they are abiding by ranges. I have read of some GP's being admonished for wanting to treat the patient with more than the Guidelines state - forgetting of course they are only Guidelines.

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