Me/cfs, lupus or P.A?

Hi, i wonder if anyone can help. ive had severe me/cfs for two years but recently received a high ana reading which suggested an autoimmune condition. My Dr has tested me for b12 deficiency before which was 'normal' and is testing me for it again today. My question is, is she doing the correct test? Ive heard that the most common blood test for b12 isnt always accurate.

My symptoms are: extreme fatigue, tingly fatigued, sore tongue, twitching muscles, tingly feet, calves and arms, gastro problems, hot then cold body, terrible brain fog, the list goes on and on. Theyre suggesting possible lupus too. Dont know which way to turn.

Any ideas?

Many thanks

Kate x

16 Replies

  • Hello Kate!!

    It sounds like B12 deficiency to me! I suggest you start by reading through some of the posts and replies on here.

    Be aware that despite the treatment being as safe as water and nearly as cheap, because it has been around for so long and any pharmaceutical company can produce it, there is no funding put into the medical system for training so few Dr's understand how important it is and therefore do not treat suffers properly.

    Good luck with feeling better soon!


    The above link hopefully will give you lots of information regarding B12. Sorry lots of reading - we have to educate ourselves due to the lack of knowledge in the medical profession. It can be daunting so take it slowly ! You really need to know the B12 blood test result that your GP declared normal. Sorry that is an opinion and not a result ! As you will read on the above link the range starts at 500 in Japan and in the UK and here in Crete around 180/200. Any result under 500 can be the cause of neurological symptoms - again they are listed on the above link.

    As you have been diagnosed with CFS/ME - I am wondering if you have had your thyroid tested. Low B12 often accompanies Low Thyroid due to the lowered metabolism. Sadly the testing and understanding of thyroid conditions is sadly lacking - just like the B12 scenario. Usually they test the TSH - or Thyroid Stimulating Hormone - which is secreted from the Pituitary Gland and is not a thyroid hormone. Too much dependence on this somewhat dubious test leaves many unwell - even after diagnosis. It is a guideline only. You will also need the FT4 - FT3 tested and also the anti-bodies - Anti-TPO and Anti-Tg which will confirm whether or not you have Hashimotos - the auto-immune condition affecting the Thyroid. It is the most common of thyroid illnesses and still GP's/labs are loathe to test if the dreaded TSH result is in range. Of course costs also come into it all and people suffer for years. Crazy. Your TSH should be 2 or under and the FT4 and FT3 toward the upper part of the range. Do not accept normal - when the Doc means in range ! Where you are in the range is important. You are entitled to have copies of your test results for your own records. Maybe worth obtaining past results - much could be revealed.

    In your case it is vitally important to have the FT3 tested - as that is the Active thyroid hormone and needed in every cell of your when the result is low there is not enough to go around and things begin to go wrong. If your GP will not do the test then it can be done privately at home.

    I have Hashimotos - Crohns - B12D - and after being ill for so much of my life I am finding wellness at the age of 69 :-) I have mostly learnt from others here on HU and from books and websites after the initial diagnosis for Hashimotos here in Crete in 2005. Knowledge enables you to ask the right questions and also what needs to be ruled out before accepting a diagnosis/treatment.

    Happy to help.....

  • Hi,

    Some useful B12 related links.



    01656 769467

    Office open 8am till 2pm every day except Sundays

    The PAS are helpful and sympathetic. You do not have to be a member to ring them.


    It is possible to have severe B12 deficiency with "Normal" results. These documents make it clear that GPs should treat symptomatic patients even if B12 results "normal". Unfortunately not all GPs are aware of this.

    Useful summary with BMJ article

    Google "BSCH Cobalamin and Folate Guidelines"

    The PAS has a summary of this document in library section on website.

    I found it helpful to read and print out each of them. I gave copies to GPs.

    B12 Deficiency Symptoms lists


    There is a symptoms checklist in PAS library section

    Information on standard treatment

    BNF (British National Formulary) Chapter 9 section 1.2

    All Gps will have access to BNF.

    The treatment for those with neurological symptoms (tingling would be a neurological symptom) is more intensive than for those without neuro symptoms.

    Treatment info is also in BCSH Cobalamin Guidelines. I found page 29 useful, a diagnosis and treatment flowchart.

    This link contains similar info to BNF.

    Scroll down to Management section.

    Some patients find they cannot manage on standard treatment.

    Have you had up to date ferritin, folate and FBC (Full Blood Count) tests? There can be useful clues on FBC.

    Other Blood tests

    MMA, homocysteine and Active B12 (transcobalamin) and a blood smear (aka blood film) can all be helpful in establishing whether or not there is B12 deficiency.

  • Have you ever been checked for Coeliac disease?

    Hughes syndrome?


    Lyme Disease?

    I am not a medic just a patient who has struggled to get a diagnosis and wants people to have useful info.

  • Hi thanks so much for replying everyone. Im struggling to read and talk today so cant read all the info : ( and my Dr is phoning me back this morning. Is there a specific kind of test i should ask for to test vit b12 ?

    Thx Kate x

  • Hi Kate, you need B12, ferritin and folate to be tested, plus Vit D if they will do that too. If your doctor agrees to test thyroid too, make it as early in the morning as possible and don't eat before the test, just drink water. Ask for a printed copy of your test results and put the information on here when you have it. Your surgery may charge a small amount for paper and ink, but you are entitled to ask for a copy. Best of luck. MariLiz

  • Thanks MariLiz,

    i'll phone surgery for all of my results when they open again on the 5th.

    Best wishes, Kate

  • Could be both. I have lupus and B12 deficiency. Your treatment should be focused on symptoms and wether you will find any relief after a b12 dose. Your symptoms strongly suggest b12. Lupus can contribute greatly also. I would be interested to know if you also showed a "speckled florescent" pattern on your ANA. That would be indicative of lupus.

  • Hi kidsmomo,

    My ana was 1:640 homogenous. My anti dna was negative.

    Thx Kate

  • There isn't really a good and definitive test for B12 deficiency.

    It is a condition where your GP needs to take account of clinical presentation (ie symptoms) as significant numbers of people can have strong signs because of the way statistical distributions are used to determine what is 'normal' come back as normal.

    Treating on basis of symptoms may also be problematic as many GPs aren't aware of the full breadth of symptoms and if anaemia isn't present may think that there isn't a problem ...though anaemia isn't necessarily the first symptom to develop and can even be masked if folate levels are high.

    Serum B12 is the normal test for B12 deficiency. If results are in grey range then MMA and homocysteine levels can help to clarify - these are waste products that build up if -B12 isn't available. Active B12 is another possibility - this just looks at the active forms of B12 that are used at the cell level where as serum B12 looks at all forms of B12. However, some of these tests may not be available on NHS.

  • Hi Gambit,

    Im starting to understand it more i think. It certainly isnt a straight forward diagnosis. Thanks for explaining.

    Have a nice Hogmanay.

  • Your symptoms certainly seem to be those of B12 deficiency.

    You may be interested in this talk given to the House of Lords by Martyn Hooper of the PAS:

    "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."

    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.

    **It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    I hope you are able to get a diagnosis and treatment soon.

  • Polaris,

    Thanks so much for that. I will take it to show my Dr when i get my test results as she has told me that if my levels are 'normal' then she wont be giving me b12 injections. Its a worry as my symptoms are worsening by the day and theyre mostly neurological.

  • Good luck Kate. It might help to take someone with you to help express your serious concerns. Be aware also that what many Gps consider 'normal' is not as, in many other European countries and Japan, levels below 500 are considered low :

    "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml".

    "Patients treated in the early stages of the disease usually experience complete recovery, even with severe symptoms such as vision loss, agonising leg pains, paralysis, MS like symptoms, psychosis and dementia often receding in months or even weeks. Moreover,unlike many medical problems, B12 deficiency is very inexpensive to treat."

    - "Could it be B12?" - Sally Pacholok, RN and Dr Jeffrey J. Stuart

  • Thanks so much for your help. Its much appreciated. i fear i might have a fight on my hands with regards treatment but thats the least of my worries i guess. Just need to wait for results on Tues.

    Kind regards, Kate

  • Just had my result back for b12. It reads 375 so my Dr doesnt want to do Intrinsic Factor test. Dont have the strength for a conversation never mind a fight. This is a living nightmare.

You may also like...