CFS or Low B12

Hi, my doctor has diagnosed me with Chronic Fatigue Syndrome, after standard blood tests.  All the blood tests have shown B12 just above the normal range.  My last result was 151 pmol/L (normal range 145-569 pmol/L).  However my doctor refuses to acknowledge that B12 could be causing my exhaustion and mental fog/confusion issues.  Unfortunately I live in Switzerland, and the medical profession here only seems to work within the limits.  I guess eventually I will have a result below the normal range, but I am going insane trying to raise a young family feeling like this.  I've also had Irritable Bowel Syndrome for years that I am worried is affecting my absorption.  Should I be trying to get treatment for B12?  What would happen in the UK? Any other advice?  Thanks so much.

18 Replies

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  • Oh yes, your b12 is very low. No wonder you are struggling. My loepwest was 190 and I felt dreadful too. Have you looked at all the info on the pernicious anemia society website, symptoms etc? Also check out b12d.org and www.b12 deficiency.info 

    In the uk we have the same battle to get our low b12 accepted. It needs to be nearer the 1000 mark! Over 500 to prevent neurological damage and near to the 1000 to prevent cognitive impairment. Most of us end up self medicating on b12 injections or sublingual lozenges etc. Low b12 is very serious so read up and educate yourself about it. Your doctor obviously doesn't know enough, they generally don't. 

  • Many thanks for your feedback.  Yes, I've read a great deal and even presented my doctor with the latest BMJ article and British Journal of Haematology Guidelines.  I may try find a private consultant in the UK to ate least do further tests.  Thanks again :-)

  • Not sure that would really benefit you as many have no luck despite thinking various other medical professionals will have more knowledge or advise treating for b12d. You could just be wasting your money. So many of them treat by numbers and not by symptoms and it is taking a very long time to convince them that b12d could actually be the root cause of many illnesses that we go to our drs with.

    You are at the very bottom of the scale, if you cant persuade gp to treat on those ' numbers' Like ltangua says it might be beneficial to get some sub ling tablets, spray or patches and see if it makes any difference to how you feel. 

    Download the symptom checklists from b12.org and PAS, mark off all you suffer from then trial one or two of the above for a few weeks then go back to the list and see if there is a difference- hopefully for the better.

  • Hi you live fairly close to Germany- is there any way you could get seen privately there?  I have heard they sell B12 over the counter but also tend to treat at a level under 500. Good luck!

  • The same re B12 injection being available over the counter is true of France, in case you are nearer the French border.

    Don't know what the situation is in Italy.

  • You could try encouraging your GP to look at this website which is specifically geared to medical practitioners

    pernicious-anaemia-society....

    As the equipment used to do tests is likely to be the same in Switzerland as it is in the UK you could also draw their attention to this alert which exists for B12 put out by the body that regulates quality control for tests like B12 serum in the UK

    ukneqas-haematinics.org.uk/...

    Reality is that there are a lot of people in the UK that are going through exactly the same thing in terms of trying to get their GP to listen - it isn't unique to Switzerland - hence the existence of the PAS.

  • You could always try negotiating with the doctor. Explain that the best way to tell if your symptoms are due to a B12 deficiency is to treat it. Ask him to give you 9 injections of 1mg, spread over three weeks. If you start to feel better then he can give you one injection per month.

    You could also ask for a methylmalonic acid (MMA) test (and maybe total homocysteine). If either/both are high then that's a good sign that your B12 isn't working properly. But make sure you get them done before the course of injections.

    If your B12 isn't working properly (as shown by the MMA and/or homocysteine being high and/or the injections helping) then you'll need to find out why. Testing for the anti-Intrinsic Factor (IF) antibodies and anti-Gastric Parietal Cell antibodies will tell you if you have Pernicious Anaemia.

  • Maybe look at FULL thyroid testing to check things. CFS is often caused by LOW FT3 - the active thyroid hormone.  Also LOW B12 is so often linked to a poorly performing thyroid.

    The full testing is TSH - FT4 - FT3 - Anti-TPO and Anti-Tg.  The last two being anti-bodies.  As you have had problems with your GP and the B12 then I am suspecting he will only test the TSH and tel you that you are normal if in range.  Sadly that is not the case and the full testing is needed.  Happy to help.

    Am not a medic - just a Hashimotos gal with a B12 issue !

    Symptoms of the two conditions can overlap and both are poorly managed by the medical profession.  It seems to be up to us to read and learn and take action !

    Hope you soon receive the treatment you deserve ....

  • Thank you, this is very interesting, you are right, just my TSH was tested and is normal.  I will look into this more.  Am thinking of finding a good naturopath here then another doctor.  Thanks again and take care

  • Do you know what your TSH result was ?  Anything over 2.5 is indicative of a struggling thyroid ....

    If you pop over to the Thyroid UK forum here on HU - you can request a list of Private Docs and Endos that are sympathetic towards thyroid conditions - and do not just know about diabetes.

    Louise Warvill - one of the Administrators has the list ....

    Am afraid normal is an opinion and not a result - so keep on digging ....  Thyroid diagnosis and treatment is as bad as PA and low B12 ....sadly.  Also the two often go hand in hand - as I have learned.

  • Hi, I've lived under the diagnosis of ME for a very long time and have gone down various routes to investigate, like you have also been diagnosed with IBS following a colonoscopy, so have tried various diets, gluten free, dairy free, candida free and various supplement regimes. I used to have spells of better health in between relapses, but only if if I lived life in a very prescriptive way. Throughout this time I've had persistent infections, tonsils, sinus, inner ear and always been told it's down to ME and it was up to me to improve my immune system.

    It has worsened considerably the last 5 years and I've discovered recently by having an Active b12 test, which led onto an MMA test that I have functional b12 deficiency at tissue level. My b12 serum level was 261 the range being 130-1100, or 192 in pmol value, so wasn't considered low enough in Drs eyes to treat.

    My Dr wouldn't let me have an MMA as he didn't think I was ill enough, so I was lucky that doing the above led onto that test. It was done at St Thomas London, via a postal test for £30, I don't know if that is a test available in your country?

    As fbirder says, it's all got to be worth an ask to see how much you can get before looking further afield. Is there another Dr in your practice that has more knowledge in this area? Just make sure you keep pushing, as difficult as it is when you feel so poorly, you shouldn't wait for results to have to get lower before you feel you are entitled to help. You don't want to be miss a b12 deficiency that has been labelled as CFS which is what I'm wondering is now the case for me...

    Take care and good luck...:)

  • Thank you very much, a very difficult journey for you finding your way through all of this.  Very interesting what you say about the postal test at St Thomas'. Take care and good luck

  • Thank you all very much for your kind replies and taking the time to answer,  Take care :-)

  • "I've also had Irritable Bowel Syndrome for years"

    I wondered if you have ever been tested for Coeliac disease? I read that it is possible to have Coeliac disease even if Coeliac blood tests are negative.

    If Coeliac type symptoms continue after a negative Coeliac test then there are further tests a doctor can arrange. A person with Coeliac disease and IgA deficiency will not produce the usual Coeliac antibodies

    Links about negative results in Coeliac tests

    coeliac.org.uk/coeliac-dise...

    coeliac.org.uk/coeliac-dise...

    Have you read these books?

    Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

    What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

    Martyn Hooper is the chair of the PAS (Pernicious Anaemia Society). He has written several books about PA and B12 deficiency. The PAS has members from across the world. Lifetime membership is £20. They might know if there are any support organisations in Switzerland.

    martynhooper.com/

    pernicious-anaemia-society....

    01656 769 717

    I am not a medic just a patient who has struggled to get a diagnosis.

  • Thank you, this is very interesting! :-)

  • I'm so sorry you are having this difficulty Hawkis,  especially with a young family to cope with.  CFS/ME is a lazy diagnosis and your B12 is very low.   

    BCSH, NICE and UKNEQAS here all have guidelines on treating B12 def. but it is difficult enough getting GPs in the UK to read and follow them so I appreciate you will have an uphill battle.

    This is what Martyn Hooper of the PA Society had to say about CFS/ME in the House of Lords in June of last year:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

    We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands".

    If you haven't already seen it, you could write or email the latest BMJ research document to the surgery. This is given below and gives up to date guidance on treatment.  

    cmim.org/pdf2014/funcion.ph...

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance." 

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy."

    If all else fails. people on this site successfully self inject with Hydroxocobalamin from Germany, as it is important to start treatment as soon as possible:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 g i.m. on alternative days until there is no further improvement." 

    Adequate treatment for neurological symptoms, which you have,  is essential to avoid permanent neurological damage and many doctors fail to realise the importance of this:

    stichtingb12tekort.nl/weten...

    "The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

  • PS  - extract from the Dutch website given above:

    "Conclusion

    A B12 deficiency is often misdiagnosed as depression, ME/CFS, fibromyalgia, iron-deficiency-anemia, MS or hypochondria. Patients have often been to the doctor many times, visited multiple doctors and have had numerous tests done, before the B12 deficiency was found. This is costing society millions of euro’s every year, and patients years of unnecessary suffering, misdiagnoses with the accompanying stress, and most of all, the risk of permanent neurological damage.

    Considering 7 in 10 patients report neurological symptoms, which can become permanent, it is clear the problem is huge.

    If we could at least correct these misconceptions, we would be a lot closer to an earlier and better diagnosis, and better treatement, and so save many people from unnecessary suffering ánd save millions of euro’s."

    So frustrating that so many doctors are blinkered!

  • Thank you very much, very helpful

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