Diagnosis

Hi

I was diagnosed with ME/CFS in 1996 and have had relapsing and remitting condition since then. The only treatment I have ever been offered has been antidepressants.

I was recently referred to a rheumatologist and blood tests came back as follows

creatinine 84

MCH 32.5

MCV 100

B12 301

Folate 11.7

I've since discovered that I have had megoblastic cells since at least 2008, and was one point off megoblastic anaemia in 2011.

I didn't understand the significance of this and my doctor didn't make any further investigations.

At the gp today, I was told that my recent results didn't have anything to do with B12 deficiency. This is despite repeated trips over the years to the surgery with deteriorating cognition, memory and concentration as well as extreme fatigue, weakness and balance issues consistent with the condition. How can this be?

I welcome any advice. Thank you.

37 Replies

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  • Hi Suki01,

    Thyroid conditions can also cause large MCV, so not sure if that was tested? See below link for more reasons for high MCV:

    emedicine.medscape.com/arti...

    It could be good for you to have the active B12 test as that would be a better test to excluded B12 def, see:

    active-b12.com/What-Is-Acti...

    You can have it done for £18,- at ST Thomas London (or per post) if your GP is willing to write a request note, see:

    viapath.co.uk/our-tests/vit...

    Well I hope this helps you,

    Kind regards,

    Marre.

  • Hi Marre

    Thank you for your great responses.

    I couldn't get hold of anyone at St Thomas's but have gone for active B12 test with Doctors Laboratory also in London. Test is more pricey at £47 but I need some clear diagnosis and treatment desperately.

    I will do a post of the results as soon as I get them.

    Meantime it has been so comforting to have had feedback from yourself, Polaris and others--it helps defuse the paranoia that I might just be going mad. x

  • Wishing you lots of good luck with your test, hope it will be conclusive and means you get the right diagnosis with the right treatment. Fingers crossed, let us know!

  • Hi Marre

    Hi

    Following on from previous posts, I got my active B12 results back today.

    Talk about paradoxical!

    I was expecting a low measure, as currently have symptoms and blood anomalies that might suggest deficiency and consultant said in December that I have megoblastic anaemia.

    Results are>256.0

    Normal range is 25.1 - 165.0

    So this says I am well above top end of normal.

    I have no idea what this means - it makes no sense.

    I have been taking a methylcobalin sublingual on and off in the two weeks preceding test, so this may have skewed it. But serum levels were 301 when last tested, so nothing is adding up.

    Supplementation aside, do you have any thoughts what this result might mean? All best Suki

  • Hi Suki,

    It does look like you are B12 replete in tissue and in serum, I personally would start thinking your symptoms are not specifically related to possibly having a B12 def. Re:"I have been taking a methylcobalin sublingual on and off in the two weeks preceding test, so this may have skewed ", yes the supplementing will have skewered the results (you need at least 4 months without for it to be a natural result say). High MCV can also be caused by a folate def and or thyroid problems besides other not nice issues as in my previous post. I do think retesting thyroid once half the gland has been removed seems the most logical thing to do in your case, but I am no thyroid expert!

    Kind regards,

    Marre.

  • If you do have the thyroid test - as marre has mentioned - do ensure you have more than just the TSH. It is also important to have the FT4 and the FT3 tested. The first one is produced by the thyroid and is a storage hormone - and the T3 is the ACTIVE thyroid hormone needed in every cell of your body. Just the TSH test is only part of the story. Just as Docs seem remiss in diagnosing B12 deficiencies - they are also not up to speed with the thyroid. It may also be worth having the Thyroid anti-bodies tested - anti-TPO and anti-Tg - as auto-immune thyroiditis is the most common form of thyroid illness.

    Also wondered how your VitD levels are ? Low levels of D seem to go with Low B12 and other vital minerals and vitamins.

    I have read that cognitive decline can take place with results under 500. I would be inclined to start a supplement - but it is also good to follow marre with the Active B12 test - which requires no supplements to be taken.

    Do hope you soon feel better....

  • How do you manage to persuade your GO to do these tests. I never get more than the basics done.

  • Hi

    I had to go private in order to get all the thyroid tests done which swallowed up what little savings I had. It seemed like my only option at the time but it hasn't got me anywhere regarding treatment.

    I had a very bad period last year with suspected TIAs and history of sticky blood syndrome in the family got me a referral to a rheumatologist. He ran all the recent blood tests. That was three months ago and despite lots of irregular findings and worsening health, I hav to wait another two months for follow up. I have become resigned to pushing hard for any appointments and investigations even tho it makes me very unpopular with docs.

    I have been ill now for twenty years tho......

  • I live in Crete - so it is a lot easier I believe. I do think it may be a good idea to have them done privately if you can. If you go to Thyroid UK website - there is information there about private testing ....

    The basics SHOULD include thorough thyroid testing. There are 300 million people in the world with thyroid problems - so they should take notice.

    Do hope you have some success....

  • Thank you very much. I will look at thyroid UK and consider some private testing.....or move to Crete! 😊 thanks again

  • That would probably be cheaper !! Lots of bargains and plenty of places to rent. We have a Studio and a Guest House - so kept busy with visitors :-)

  • Thanks for your advice - I will definitely follow up the active B12 test.

    I had thyroid tests done last year after another bout of very poor health. I had to go private in order to get this, as my GP said the labs wouldn't do it.

    My scores were considered normal

    TSH 2.3

    FREE T3 4.3

    FREE T4 15.3

    I developed a lump in my thyroid the previous year and had surgery, which removed half of the thyroid gland. The lump turned out to be a goiter, but I've no idea why I developed this.

    Thanks again for your thoughts-would you suggest a retest for thyroid?

    Suki

  • I know very little about thyroid, but it just seems logical to retest after half the gland has been removed (I also had an intermitted goitre 15 years ago, turned out to be cystic, but all has gone after meno pause, so it was hormonal in my case).

  • Hi Suki ...often the auto-immune version of thyroid illness is the cause of a goitre...called Hashimotos. Perhaps it would be good to have the Thyroid anti-bodies tested - Anti-TPO and Anti-Tg - to see if they are raised. It is the most common of thyroid conditions. It is scandalous that GP's will not do the full testing for the thyroid. They seem to think the treatment is the same as they rarely understand auto-immune issues. I would suggest you ask your GP for a trial of T4 to see how you feel and improve the numbers a bit. Low B12 - Iron - Ferritin - Folate - VitD seem to go hand in hand with thyroid issues - or is it the other way around ?? So best to have all those optimal so the thyroid treatment - if you start - will work efficiently.

    I was diagnosed with Hashimotos back in 2005. The TSH - FT4 - FT3 were all in range - however the anti-bodies were raised. So I was diagnosed and treated with T4. I live in Crete. Have a feeling had I been in the UK I would not have received any treatment....

    I have low B12 due to surgery over 40 years ago....

  • Thank you for the info - my mind gets boggled by all the different elements! I will have a go at persuading gp to trial this but don't hold out much hope. They never investigated WHY I had the goiter just removed it and half my thyroid in the process. Post surgery they refused to accept that I might need supplemental thyroid meds, insisting that my thyroid would readjust. That was about three years ago.....it's very demoralising and so hard to keep fighting for treatment when you're Ill and meet with such dismissal.

  • Of course it is important you stay with this very helpful forum - but may I suggest you pop over to the Thyroid UK forum. Many of us are on both. Lots of helpful posts there and people willing to help with their experiences. It is a common problem that Docs have so little understanding of what is required and others will make suggestions.

    I quite understand why it is all so confusing - so take one step at a time.

    thyroiduk.org.uk/tuk/about_...

    Have linked you to Thyroid UK - so have a look around the site and see if there is anything that may help. Menu on the left has lots of drop down menus - click and then more drop down menus !! Everything in the body is so interlinked so worth checking everything out...

    Wishing you well...

  • I take the equivalent of .125 mcg of Synthroid in the natural form from Armour since having half my thyroid removed in 2006. Since on the Armour I don't get the terrible pains in the calf muscles in my legs like I used to, but still have trouble with energy due to Chronic Fatigue Syndrome. Prior to surgery my thyroid functioned OK. No one told me my thyroid would readjust after surgery.

  • Goiters are usually caused by not enough iodine in your body. I also had half of my thyroid removed for nothing. I knew that nodule was there for over 20 years and wasn't worried about it. i didn't realize I would lose half my thyroid if it was removed. Your doctor can do a test for idodine. I plan to ask mine to do that.

    Alta---USA

  • Whilst goitres are caused by low iodine levels, and that is common enough in areas which are generally low in iodine and have no program to enhance iodine levels (e.g. iodised salt), I suspect other causes might be more common elsewhere.

  • Thanks for sharing this :)

  • Autoimmune thyroid problems, B12 and D deficiencies are usually interlinked with symptoms sometimes overlapping and they impact on all the systems of the body, especially the thyroid. It is more than possible that B12 treatment and D3, if you think this is low, could also help balance your thyroid, as it looks to me that your TSH is still a bit high and most people only feel well with a lower or suppressed TSH. 'Understanding Thyroid Disorders', written by Dr Toft, gives good advice and, as it is published in association with the BMJ, your GP might be more willing to listen ! An extract : "

    "Typical results would be a fT of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l. In some patients, a sense of well bring is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/1 and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."

    thyroid.about.com/b/2010/09...

    Your serum b12 test results are also a bit low when compared with this extract from the book, "Could it be B12?, and more likely to be responsible for the neurological symptoms you are suffering:

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    But, in any case, there is no gold standard test, most being unreliable and flawed. BCSH, UKNEQAS and NICE guidelines all recommend treating the neurological symptoms, which you already have, without delay to avoid irreversible damage. The problem is that many GPs are ignoring or not aware of them and you have to be prepared to research and fight your corner, which is stressful, or self treat. This link has advice on how to write to your GP:

    b12deficiency.info/signs-an...

    It might also be worth pointing out to GP the summary points of latest BMJ research 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.

    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 all goes well for you Suki01.

  • PS. Your history is so very similar to my sister's, apart from surgery. She had debilitating ME and Hashimoto's for years, and it was only after a serious neurological crisis triggered by a dental injection (inactivating B12) that the family were able to eventually persuade her GP to trial B12 injections (they wrongly diagnosed dementia, ME and referred to psychiatrist). ME symptoms have completely disappeared and she is now able to walk for miles but memory is still not completely repaired.

  • Hi Polaris

    Hugely grateful for your detailed response.

    The neurological symptoms have been progressing for over eight years. In that time I have been told that there's something wrong with my expectations! Ie. It's normal degeneration with age (I am now 53)

    I have also been told its depression or unresolved childhood trauma.

    As a state registered psychotherapist who spent twelve years in personal therapy as part of my training, I think I can recognise depression! I am demoralised, disempowered, even disabled, but only as a result of twenty years of ill health that has never been taken seriously. Sorry, that rant just crept out....

    I will be following up all your info.

    Interesting, my recent flare up followed dental anaesthetic. I had no idea it impacts in this way. Thanks again.

  • Your treatment leaves me speechless - you are perfectly entitled to have a bit of a rant after your years of such condescending bs.....I'm still yet to get over how many in the medical profession refuse to listen or research and are ignoring all guidelines in such an arrogant way.

    This is the BMJ research document I mentioned (doesn't always work I'm afraid, but you will see certain drugs, e.g. PPIs, Metformin, etc. also deplete B12 over time but nitrous oxide inactivates it, if you are already low. This excellent video explains it fully, as well as showing how often B12 def. is misdiagnosed:

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

  • Just another thought - the TIAs could have resulted from a build up of high homocysteine and MMA, which would also be reduced by B12 injections.

  • Hi Polaris

    That makes sense. How did you get so knowledgeable?😊

    I've not had a definitive diagnosis of TIAs as don't show on brain scan. As the symptoms went on for about a month I think it's unlikely but docs were satisfied with this explanation-and that's what counts, right?! I had very similar symptoms then, a year ago, as I am having now. Immense weakness, balance issues, speech slowed/slurred, rapid heartbeat at night....etc

    Don't thin they tested either MMA or Hmsty then, but I will insist they do now. Thank you.

  • Good for you suki01 for not being fobbed off with poor diagnosis and treatment ! It is nothing to do with age - 53 is no age these days and you have a lot to give !

    You'll find, as I have, that this site and Thyroid UK are a great source of knowledge and support. Four members of our family have Hashimoto's and B12 -def. passed down I believe through maternal DNA. I'm trying to put my nerdy bookworm nature to good use in retirement, reading and battling doctors in an effort to help correct what could have been catastrophic family misdiagnoses.

    We all deserve optimal treatment and quality of life - It's not as if thyroxine and B12 medications are expensive and we are asking for the moon!

    I hope you get more sympathetic treatment soon suki01

  • Hi Polaris

    Following on from previous posts, I got my active B12 results back today.

    Talk about paradoxical!

    I was expecting a low measure, as currently have symptoms and blood anomalies that might suggest deficiency and consultant said in December that I have megoblastic anaemia.

    Results are>256.0

    Normal range is 25.1 - 165.0

    So this says I am well above top end of normal.

    I have no idea what this means - it makes no sense.

    I have been taking a methylcobalin sublingual on and off in the two weeks preceding test, so this may have skewed it. But serum levels were 301 when last tested, so nothing is adding up.

    Supplementation aside, do you know what this might mean? Suki

    Ps. Not sure I am posting things right here!

  • Hi Suki01. How frustrating and confusing for you.

    The fact remains that your serum B12 was low and, like Marz, I would put down the results of the latest test to supplemention. In view of your previous megoblastic anaemia and on going neurological symptoms plus years of fatigue, I would refer them back to the guidelines and, especially, the latest BMJ research summary - "there are complex issues around diagnosis and treatment and there is no ideal test to define deficiency so the clinical condition of the patient is of utmost importance."

    The serious consequences of not treating the neurological symptoms, which usually precede the anaemia are too dire to contemplate and they should, at least consider a trial of B12 injections. Would it be possible to write a letter as suggested in the B12 link and then take someone with you for support.

    My sister's serum test was over 1,000 (she'd also been supplementing) but we eventually managed to persuade her GP to trial injections by pointing out the serious social consequences on her whole family, as well as agreeing to take full responsibility - it seems GPs are afraid of overdosing (which you cannot do) - the fact that they could be negligent in not following guidelines and latest research does not seem to have occurred to them!

    B12 treatment resulted in an almost miraculous recovery from fatigue and other symptoms but their failure to act urgently means that she may never get her memory back.

    Good luck

    PS I am away at the moment so don't have access to info on these latest test results but, I really would emphasise their irrelevance in view of the urgency of treating neuro symptoms without delay.

  • Page 1 of the following guidelines seems to indicate treatment path with b12 should be followed especially as neurological symptoms precede anaemia:

    bcshguidelines.com/4_HAEMAT...

    Page 1 - Cobalamin Deficiency

    "For patients with classical Megaloblastic Anaemia, the presence of low serum cobalamin level and objective assessment of response in terms of the rise in haemoglobin concentration clearly outlines the treatment pathway. However the majority of patients do not have such a clear cut picture.

    Neurological presentation (peripheral neuropathy, sub acute combined degeneration of the cord) may occur in the absence of haematological changes and early treatment is essential to avoid permanent neurological disability."

  • Polaris you are a godsend!

    I can't thank you enough for the time you have taken and your knowledge.

    I think I may be very similar to your sister in presenting symptoms and condition.

    I will follow your outline and the links, prepare a letter prior to next appointment. My daughter is going to come with me to see doc and consultant so I'm not fobbed off any more.

    Thank you, thank you thank you.

  • As soon as I read ME/CFS. 'Thyroid' springs to mind :)

  • ..and as the FT3 is rarely tested due to costs ( mostly a cost to the health of the poor person involved ) - then everyone is told they are normal. It is a DISGRACE

    M x

  • Hi

    Following on from previous posts, I got my active B12 results back today.

    Talk about paradoxical!

    I was expecting a low measure, as currently have symptoms and blood anomalies that might suggest deficiency and consultant said in December that I have megoblastic anaemia.

    Results are>256.0

    Normal range is 25.1 - 165.0

    So this says I am well above top end of normal.

    I have no idea what this means - it makes no sense.

    I have been taking a methylcobalin sublingual on and off in the two weeks preceding test, so this may have skewed it. But serum levels were 301 when last tested, so nothing is adding up.

    Supplementation aside, does anyone know what this reading suggests?

  • ...sorry have no idea - except that supplementing could possibly have given a false and inflated reading. Others that know more than me will be along soon. May be an idea to put your results in a separate post so more people will see and be able to assist.

  • Thanks Marz - will do!

  • Very true Marz.

    X

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