What is the best next step please?

Hi, I was diagnosed with ME nearly 15 years ago. I have had some better spells during that time, but tend to keep relapsing with the usual digestive, sleep, brain fog, temperature, blood sugar, adrenal type symptoms. Three years ago I relapsed pretty badly with the constant feeling of as I can only describe as going too fast inside and extreme anxiety, with a system that seems to over repond to the smallest noises and situations. I've had a pinprick test for b12 which came back at just over 200 and can see many of these symptoms could link to a b12 deficiency ( weight loss, numbness, tingling, sore tongue, memory problems, breathlessness, brain fog to name a few). Could anyone suggest the best next move please, should I try a b12 active test or are there tests I can request at the docs please? (My iron and ferritin are only ever just above the lowest level, but doc always insists this is okay) Any ideas would be greatly appreciated please.

18 Replies

  • Sorry to hear about the diagnosis of ME. I know that there have been studies that have shown that quite a sizeable group of people with MS (25%) respond well to treatment with B12. I'm not aware of anything similar having been trialed with ME patients.

    Having said that there is also a huge overlap of symptoms of B12 deficiency with both ME and MS and misdiagnosis is a definite possibility.

    In terms of tests, unfortunately there isn't a clear cut test for B12 deficiency - and what is available is going to vary depending on where you are based ... even the cut offs at which people are considered to be 'normal' vary a lot from country to country. In the UK it's usually levels around 150 that are considered low (that's taking results of 'blood serum'. In Japan its 500. There are lots of things that make the test unreliable - including the fact that this one looks at all B12 in your system - not just the active forms. There is another test for active B12 but that isn't generally available on NHS in UK.

    In Could it be B12 the recommendation is a mixture of B12 (serum or active) along with MMA and Homocysteine. The later two are measuring waste products that build up if the body doesn't have or isn't managing to process B12 properly. You also need to look at B9 (folate levels) as you need B9 to process B12 ... deficiencies of either B12 or B9 will cause high levels of Homocysteine (not so sure if both are used for processing MMA).

    The recommendation in the UK is to treat on the basis of clinical presentation (symptoms) rather than test results. This is in part because left too long before treatment damage can become permanent.

    You can try going down the route of finding out what might be causing you to be B12 Deficient ... and always worth looking at drugs you are on as some can inhibit uptake of B12 eg anything that lowers acid levels in the stomach. On the whole I'm not entirely sure that medicine has advanced enough on B12 yet to make it really worth finding out what the cause is if it isn't obviously a drug interaction or diet (assume you aren't vegan). The treatment is the same whatever and each time you are only ruling out a possibility and in most cases the tests aren't actually that reliable.

    I think the first step is probably to try and educate yourself so you know what questions to ask and when you are being fobbed off by the ignorant, so I'd recommend reading some books - eg 'Could it be B12?', or 'Pernicious Anaemia: the Forgotten Disease'. You might also consider joining the PAS - one off subscription that gives you access to all of the website and B12 Deficiency support group is another good source of information


    Ask for the test - post your results here but be prepared to be told by your doctor that you are 'normal range' - and to fight on the interpretation of that. You'll get plenty of support here.

  • Hi gambit, many thanks for your reply and such clear information. I've ordered a copy of the b12 book thanks and look forward to reading! You mentioned trying to discover why I could be b12 deficient. I stopped eating dairy a few years ago so perhaps that is part of the problem. I just continually would get ill each month first with tonsillitis for years, had those removed during my first year of ME 15 years ago, then proceeded to get sinusitis each month instead! After years of that has sinuses looked at to discover polyps. These were treated with steroids, although the hospital refused to rebook to see if they'd actually gone!! And assured me they would have but sinusitis continued so doc suggested trying harder to improve my immune system with no suggestions as to how! So I took a York test which revealed a milk and yeast intolerance and since avoiding dairy this is much improved. Also went down the candida diet route as results came back very high for that and also went gluten free. Also found to have very low level of SiGA, don't know if that is linked to low stomach acid? However I've had nutritionists look at my current diet and they can't find any problems with it, even with these restrictions, in fact the nhs dietician claims in the food diary I did that I was taking in double the daily amount required of most vitamins and minerals, so perhaps it is more of a absorption issue? Do you happen to know if the the MMA and homocysteine is covered in a standard blood test ( something is telling me probably no!) or maybe I wouldn't be allowed those until the b12 is done first. I was diagnosed with a latex allergy at the beginning of my health probs and have just read that this could poss trigger a reduction in b12 absorption all very interesting! Sorry when I read this last night I saw it all as one post with the one below, so didn't reply separately to this...thanks once again :)

  • Because B12 is stored in quite large quantities in the liver it can take decades for a deficiency to progress.

    I'm a vegetarian but do eat dairy - but not fish - to be honest I have found animal proteins quite difficult to digest at least since I was in my early 20s so there's probably some other problem - have no idea what the source of my malabsorption was but don't think it is dietary.

    I don't think MMA and homocysteine are generally done with a blood test - at least not homocysteine - MMA probably gives more accurate results if done as a urine test rather than blood from what I've read.

    Back to I think you'd be better of NOT looking for a specific cause for malabsorption ... as I think you'd probably drive yourself mad trying to narrow it down and actually the treatment would be the same - unless it is a specific drug interaction in which case replacing with a drug that doesn't have that interaction might mean you absorb more.

    Totally understand about the not seeing the posts if you have B12 and particularly if you are having problems with sensory overload and anxiety - that was me most of last year and it was absolutely awful ...

  • Hi Gambit62 am rewriting the reply as seem to have lost the first one! Thanks very much for your reply and info, i had probs with a new stomach pain and after just getting rid of a sinus/ear infection, went down with another virus, but am now getting on track again! Had my b12 test yesterday, so looking to the results now. Decided to try this first before going into the active one. Am finding the b12 book a fascinating read thank you, it is more than an eye opener isn't it! What devastating symptoms that could be prevented with a simple test or two and the raising of a too lower limit...Sorry to read you have had such a hard time with anxiety and sensory overload and hope this year has been much better. It is a nightmare isn't it. Did you find that treating the b12 helped quite quickly to improve this? Did you find anything else that helps? I have tried to explain it to docs, it's like a constant feeling of going to fast inside and as if you're on such high alert all the time, just a simple noise, change in light, or even trying to wait for someone to finish what their saying caused such panicked symptoms seems ridiculous. I started this relapse of 4 years ago after an inner ear virus and these symptoms were attributed to that. It is easing a bit now, which enables sleep, which in turn must help...anyway thanks once again...Jo

  • Yes it would be a good idea to have the active B12 test done, possibly MMA if active B12 is in conclusive on its own. Make sure you do not supplement with anything untill you have had all investigations done. If then you receive no help you could try self medicating to see how it helps you or not, its a matter of trying, B12 seems to help in ME, you can but try, its a harmless vitamin.

    To read up on active B12 see:


    where you can have it done:



    The new British Society for Haematology's guidance gives you more info why you would classify for more testing see:

    Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders



     A blood film showing oval macrocytes and hypersegmented neutrophils in the presence of an elevated MCV may alert the clinician to the presence of underlying cobalamin or folate deficiency (Grade 2B)

     Cobalamin and folate assays should be assessed concurrently due to the close relationship in metabolism (Grade 1A)

     The writing group recommends adoption of reporting for cobalamin assay results in pmol/L (Grade 2C)

     A serum cobalamin cut-off level of either 148 pmol/L (200 ng/L) or one derived from a local reference range should be used as evidence of cobalamin deficiency in the presence of a strong clinical suspicion (Grade 2B)

     The report providing the result of a serum cobalamin assay should inlcude the following

    o The interpretation of the result should be considered in relation to the clinical circumstances

    o Falsely low serum cobalamin levels may be seen in the presence of folate deficiency or technical issues

    o Neurological symptoms due to cobalamin deficiency may occur in the presence of a normal MCV (Grade 1B)

     Plasma tHcy and/or plasma MMA, depending on availability, may be considered as supplementary tests to determine biochemical cobalamin deficiency in the presence of clinical suspicion of deficiency but an indeterminate serum cobalamin level (Grade 2B)

    o Although plasma tHcy is a sensitive marker of cobalamin deficiency, plasma MMA is more specific

    o Both assays have to be interpreted in relation to renal function

     Holotranscobalamin is suggested as a suitable assay for assessment of cobalamin status in a routine diagnostic

    I hope this helps,

    Kind regards,


  • Thank you for such a lot of information and getting back to me so quickly. I've had to see a nurse today, last minute apptment and requested a b12 test and she's also going to check folate and ferritin and poss magnesium and calcium. After reading this looks like I should have asked for MMA too? Could I ask if there is anything else obvious I could ask for please? I will work my way through your information thanks. Another Jo has kindly answered further down the post and I wonder if you thought that was me, it was not your misreading! :) I am new to going down the b12 route, have only just got as far as the pinprick test! Can I ask your opinion on these, do you think a pinprick test is as accurate as the traditional type of blood test? I don't live near St Thomas's hospital...many thanks, jo5454

  • Ah two Jos and one 54 other 55 how confusing!

    The pin prick test is not an accurate as a blood test I expect, the tests you had at the surgery look good, if you are then B12 def , and or have other deficiencies etc ,you will get treatment I expect, if your serum B12 is in the so called grey area then you may need further testing such as active B12 and or MMA. So first see what comes from your test may be best.

    Perhaps read this:


  • I tried and tried and the few tests she did all came back "fine". I think the range is set so wide that a dead body might test as "fine". You can price the cost of going private for blood tests if you can afford it then it might be worth it . But I bought B12 off Amazon and it didnt help.

  • As long as your GP is willing to write a request note for the active B12 test at St Thomas, and you are able to get there, the test is only £18,-. MMA is far more.

    The problem with B12 from amazon is that it is not licenced and may not contain what it says on the packet, and or may have been stored wrongly so the content has degraded etc. Its much better to get B12 from a reliable source.

    Here is a link of reliable sources other PAS members have used:


  • I have PA and Underactive thyroid but was also diagnosed with ME about 2 years ago. in the end I took early retirement as I couldn't cope with a very physical job and split shifts (I was lucky to have a small pension I could draw down early though at a lower amount per month). A few months ago I started using nasal sprays - I was already using tablets under the tongue - and haven't looked back (I have Gambit to thank for the advice) Whether I actually had Me or just uncontrolled PA I will never know but the extra B12 has certainly helped. Push your doctor hard but if he won't budge on treating you, try the nasal drops/spray, hopefully you will begin to feel human again.

  • Initially a GP wanted to diagnose me with ME, but fortunately for me my blood test eventually showed obvious B12 def. ME seems to be used often as a diagnosis when nothing seems to be obvious, I have also heard that ME can be more a thyroid problem, but its all a matter of trying to find out what helps I think. Its just that a trail of B12 injections is so relatively cheap and harmless, if it helps you then its a win win situation, if not then so be it, but at least you have been allowed to try it. It would be nice..

  • I was diagnosed with B12 deficiency before being told I had ME. The comment re the link with underactive thyroid is interesting as mine was borderline underactive but had to be treated to see if that was the problem before I was referred to the ME clinic. I'm only grateful that I can afford to supplement my injections and the nasal drops seem to help. You don't actually realise quite how bad you felt till you start feeling better!

  • So sounds more as if you would benefit with far more frequent B12 injections then, but if the supplements help you then that is a good thing! Glad you are feeling so much better! No point in getting active B12 test and or MMA as you are already on B12 treatment, unless your pin prick test of serum B12 of 200 is with all the supplements you get now, then it may be worth doing active B12/ MMA as you then still fall in the so called grey area.. Sorry if I did not understand your situation, just re read your initial post and can only suggest you get folate tested as if low your B12 will not be optimally used, to put it simply. Keepionhg an eye out for thyroid function is wise as shaw mentions below. A good multi (B) vitamin supplement can help to keep a steady supply of all vitamins possibly needed without getting to many inbalances. Its all I can think of, Marre.

  • Many thanks for your reply and glad to hear you are feeling so much better. Did your doctor diagnose the PA, does that mean you are unable to process the b12 and therefore need supplementation? Am new to this and need to read more! Very useful to know about the spray and may well pick your brains once I get the tests done and results please! Thanks again:)

  • Doctor diagnosed the PA and put me on loading doses then 3 monthly which aren't enough but I've given up fighting! Good luck fighting yours. Happy to help but I think Gambit and Marre are better informed on the subject.

  • Did you know that ME and Fibromyalgia were only named around 10 years after the blood tests for the thyroid gland were introduced, i.e. people only diagnosed according to the TSH.

    Previously, people with clinical symptoms were diagnosed and given a trial of thyroid hormones - not generic synthetic ones.

    One of the doctors who people went to see if they were failed by the NHS was Dr Skinner and this excerpt is informative. Unfortunately, for his patients, he was pursued constantly by the GMC (not reported by his patients but by doctors) and died of a stroke last year. He constantly tried to converse with the Endocrinology Departments but they all refused.


  • Thanks shaws, I'll have a read up about this :)

  • Ask your dr about 10% of the population exhibiting neurological symptoms when results are under 400 pg/ml - some labs here is the USA add this note to the results. You are on the low end on all counts and as they are all interrelated ...

    Other tests might be homocysteine or methylmelonic acid levels in either a blood or urine. These being high is another symptom of low B12 and low folate. Maybe that will trigger him to act.

    Good luck!

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