Desperately need advice

Ok so at the beginning of March I went to my GP because I was feeling dizzy, tired, night sweats, headaches and pins in needles in arms and legs especially at night and sometimes cramp. He ran loads of blood tests which came back with vit D low at 47 and vit b12 low at 154ng or 113pmol (lab ref ranges was 160-900ng).

GP then tested for IF and PC both came back negative and refused to allow me treatment. I have since been to a haematologist privately who ran all the tests again - he said his results were comparable to the GP - but wouldn't give them to me. He did a blood smear and further testing and said I do not have an absorption issue. He has tried me on 50mcg of Cyanocobalamin x2 daily for 6 weeks and then more tests.

Is this right? He thinks I probably have CFS and thinks I should see a specialist in this. He also found that my immune antibodies are all low IGG, IGA and IGM and is running tests on that to see if I have an immune disorder. I am at my wits end and neither my GP or the consultant will give me a referral letter to get the Active B12 done and I can't find anywhere that will do it without this. Neither will also do the MMA or Homocysteine tests.

Please I need some advice - I really don't know what to do. I am 33 and I feel like I am 93.

Kind regards

Carly

13 Replies

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  • Have you given your GP a copy of the recently updated cobalamin guidelines?

    bcshguidelines.com/.../BCSH...

    These make it clear that it is possible to have negative test results and still have PA.

    The PAS have a useful summary.

    pernicious-anaemia-society....

    homebloodtests.co.uk › ... › Vitamin B12 (active) home blood test

    b12deficiency.info/b12-test...

    biolab.co.uk/...test/Vitami...

    privatebloodtests.co.uk/ACT...

    bluehorizonmedicals.co.uk/P...

    Be warned that any supplementation with B12 prior to tests is likely to affect your results. I wasted hundreds of pounds on private tests that were most likely compromised by the fact I was supplementing.

  • I have been taking the tablets for a week how long would I need to stop before having this active test done?

  • Hi,

    Sorry I'm not sure, Hopefully someone will be along soon who can give you that info.

  • I'm just bloody furious I have given them these print outs not sure they have actually read them though - all I keep being told is you are only just low according to our labs - I really don't think that this is the problem. They make me feel like it's in my head - have even tried to give me anti- depressants twice!!

    I am not depressed - I just feel poorly and can't do the things I used to do - I have no idea if it is related but I also keep gettin. Muscle spasms in my neck - at least once a week and two occasions I have had to have heavy painkillers to relax the muscles as I couldn't even move my head!

  • No wonder you're furious Carlygeorge - it's disgusting that, with such a low B12 result, they have fobbed you off with such a useless dose of cyanocobalamin, which is not easily absorbed anyway and have now messed you up for an active B12 test! Then to try to palm you off with anti-depressants and a diagnosis of CFS (more money for the surgery). The haemotologist won't give you his results - what's that all about ?! Their arrogance takes my breath away !!

    I think I would try writing or emailing the surgery again and bombard them with all the guidelines and research - it may be that if it's down in black and white and they know you are not going to give up, they may feel they have to act.

    You could try a more effective and high dose supplement yourself e.g. Jarrows 5000 mcg. sublingually (good reviews on Amazon (you can't overdose) or look into self injecting - otherwise you could waste a lot of money on active B12 test and they may still not do anything - a very difficult dilemma ! The most important thing to remember is that there is a small window of opportunity before permanent damage sets in.

  • It makes me wonder what the point is of issuing these guidelines if so many GPs are going to ignore them and there is no way of making sure they are

    followed.

  • Thank you! I am waiting for the written report to come in from the haematologist to see what that says in writing he said he would send me a copy. I don't know what is best really I don't know if I should buy other tablets as you say and take those or just stop taking what I am taking and make a real nuisance of myself until someone listens.

    I did fire an email off to the haematologist last week begging him to do the MMA and Homocysteine test if for nothing other than my piece of mind - he is private so it is being paid for by my private medical insurance but I haven't heard anything from him.

  • Don't know how a blood smear is supposed to rule out an absorption problem as it isn't going to tell you anything about stomach acid levels etc.

    Really sorry that you are suffering so much and that people aren't listening - it is quite worrying as your levels are low and you are having neurological symptoms.

    About 1% of B12 is absorbed 'passively' outside the illeum so it is possible in theory to flood the gut with B12 and absorb enough but the level you are being given doesn't quite fall into the category of being 100 x daily dose.

    It sounds as if you are dealing with people who think the only thing that will affect absorption is PA and antibodies ... but unfortunately this is far from true, though falling acid levels in the stomach sounds an unlikely scenario given your age.

    At the end of the day - as you really are getting nowhere with your GP you may need to think about trialling B12 for yourself - not ideal but ... there are alternatives to injections that work well for some people and you could try one of those - though it would mean that getting a B12 test done won't be a possibility.

    I think you can get B12 done privately by post but as it wasn't something I've ever needed to do I'm not sure of the details.

    On the other hand it is also possible, because symptoms of B12 overlap so much with other conditions it is quite possible that there really is something else going on.

  • Thank you Gambit :) any idea if the neck weakness/spasms could be linked to this?

  • muscle weakness and spasms are symptoms of B12 but are also symptoms of other conditions so not really clear cut.

  • By the way the immune thing was unrelated he thought it strange that I seemed to get a few RTI's in a year - however I have discovered that vit B12 can be a cause of these low anti-bodies through my reading

  • Hi Carlygeorge,

    Before my low B12 was diagnosed I got every infection going! Chest infections, sinus infections, urinary tract infections etc... I'd barely get over one before I'd develop something else. Also, every infection seemed to leave me totally exhausted, all I wanted to do was sleep. My level on diagnosis was 176, you need to be treated. Is it possible to see another doctor for a second opinion? I wish you well, and hope you get the help you deserve and need. MariLiz

  • Same here with infections. You need treatment IMHO

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