Help please!!

I am desperately trying to get some advice for my son who is 30 this week and was diagnosed with ME when he was 12. Several years later he was also diagnosed with

hypothyroidism and approximately 13/14 years ago he was found to be

deficient in B12 and started having a B12 injection every 8 weeks. This

helped him tremendously and his energy levels increased.

11 years ago we moved to Lincolnshire and our new GP was happy to continue with the injections until the GP in charge of the practise stopped them and despite our own GP fighting his corner, we couldn't get

them reinstated.

Charley's blood tests showed he was 'in range' even tho he was at the very

bottom of the range despite taking 5000 mcgs of Jarrows methylcobalomin

daily.

In December 14 his blood test showed his serum B12 level to be 286 ng/L

(187.0 - 883.0) And his serum folate level below range at 1.5 ug/L (2.8

-18.3) He was prescribed 5mg of folic acid daily but again refused B12

injections.

We have just moved house and a new GP was responsive to his request for B12

injections saying she felt a 'top up wouldn't hurt' but ordered new blood

tests first. In the 8 months from his last blood test the B12 came back at

'above range' 925ng/L (190.0 - 800.0) and serum folate also above range at

19.2 (3.9 -14.0)

This is a dramatic and unprecedented jump and the GP obviously said B12

injections aren't necessary and that the folic acid supplements should be

stopped as well as reducing his B12 to alternate days.

Could the folic acid have helped the absorption of the B12? He's taken B12 supplements for years and his levels have always been at the bottom of the range..

However he still feels rubbish and has extremely low energy which the GP is

dismissing as his ME - while my son still feels it's linked to his B12 levels. This is probably because he felt so much better when he was having injections!

Is it worth pushing the doctor for a trial of injections again given that his levels are above range? Or do any of you lovely people have any more suggestions as to what else we could look at.

Thank you for reading this long post!

14 Replies

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  • My suggestion is to definitely definitely try a trial of every other day injections until ALL symptoms go away and then see how often they are needed to keep them away, however you can do it. I believe I could have been well for years, if this had been my case. If he doesn't get them there is a real risk of permanent damage.

    Print off, show them and quote BCSH guidelines for B12 deficiency. A trial won't cost much, is safe and they have a duty of care.

    Don't rest until you've tried it - to the point of completely resolving the symptoms if possible. In my case the CFS/ME diagnosis has been used as an excuse not to treat me and make me well for years when I could have been.

    I'm now self injecting daily (supplied by my Dr) and taking sublinguals too where I think I would have got away with less treatment if it had been done before the damage was done.

    Good luck!

  • Is it possible to have the tests redone? It just doesn't sound logical to have such high results after years of low readings.

  • The body needs folate to absorb and use B12 so that could have been part of the problem.

  • Thanks everyone for your replies - it's so nice to get support! I thought the same Gambit62 so maybe he should continue with the folic acid supplement? Although it didn't help him to feel any better!

    Yes Biysfoolish

  • Sorry I hit submit by mistake! Yes boydsfoolishrose I asked about retesting but was told they wouldn't do it for 6 months.

    Deniseinmilden thanks for your detailed response. I'll find the guidelines and print them off so we can do battle (once again!) at the surgery. It's such a shame that the people who are feeling the worst always seem to come across such pathetic excuses handed out by the doctors. And having ME gives them a handy hook to hang things on! Very frustrating. I'm glad you're feeling better x

  • Did your doctors find out why your son at 12 years old was B12 deficien Bellevlue? As he also was found to have thyroid problems, it would most probably be autoimmune and linked both ways with PA/B12 def. Many researchers believe that leaky gut or intestinal disease is the ground zero of autoimmune disease, which means he could have difficulty absorbing B12 and other essential nutrients. B12 has to go through a more complicated process to be absorbed and the serum test is only an indication of levels in the blood and not the tissues (see last paragraph) and, in any case, he has been supplementing.

    Does you son have any neurological symptoms? A diagnosis of ME would suggest he does. If so, it means he should be treated according to the BNF and UKNEQAS guidelines below until no further improvement, as there is a short window of opportunity before neurological symptoms become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to reinstate his injections:

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

    The link below gives info and advice on writing to your GP and the excellent film explains why it is essential to treat adequately as well as info on folic acid. Putting the research and guidelines in writing could be effective, as I'm told one of their biggest fears is being sued.

    ukneqas-haematinics.org.uk/... :

    b12deficiency.info/b12-writ...

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

    The above UK research document is supported by many research papers and has a useful summary if GP won't read full document, It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    PS

    This is what Martyn Hooper talked about in the House of Lords in June of this 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..."

  • Have you posted your son's thyroid function results on the TUK forum, one of the communities here on Health Unlocked, or the TPA forum (the latter is a stand-alone site: Thyroid Patient Advocacy)? Post Free T4 and Free T3 results along with the reference ranges. It may well be that the thyroid treatment is part of the problem, in which case there could also be poorly functioning adrenals after such a long period of illness. The people on the TUK forum are very kind and helpful, but you may find a broader appreciation of thyroid and adrenal problems at TPA. Just my opinion. :-)

  • Do you have any Thyroid test results you could post ? Disgraceful your GP did not know that his B12 test was replete as he had been previously been treated. B12 is needed in the cells - the blood test tells you what is in the blood - and not all of it is available to be transported to the cells where it is needed.

    Thyroid tests required - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg

    Happy to help and answer questions....

    I have Hashimotos and all that goes with it :-)

  • Absolutely, Marz. I should have mentioned antibody tests in my own comment above.

    A few years I asked the local GPs to place on my file my privately obtained thyroid a-b test results. They refused, saying they were "irrelevant". Ignorant bunch. At the time, I think the TPO count was over 1000!

  • Yep - sad isn't it ? They have absolutely NO idea about auto-immunity. Of course they are irrelevant in their eyes as they do not know how to treat them..... I despair :-)

  • Hi Belleblue,

    I agree with what Hillwoman and Marz have said as B12 Deficiency Mimics Hypothyroidism. You can also have both Hypo and B12D

    Many Hypothyroids diagnosed with ME/CFS & Fibromyalgia eventually find it is down to Hypothyroidism.

    Also your son might be getting thyroid treatment for his Hypothyroidism, but is he getting enough thyroid treatment ? I wasn't given enough Levothyroxine and was extremely tired, bones ached, no energy, brain fogged and had fibromyalgia pains all over, yet I was told my bloods were normal, but I certainly did not feel 'normal'

    Once my meds were upped several times I eventually felt 'normal'

    Many Hypothyroids are 'under medicated.'

    Do post your Son's bloods up on Thyroid UK, just to check.

  • As others say it can be very difficult to unpick where there are other conditions going on - and the way he is feeling could be down to multiple causes. - sorry had to rush off to work this am.

    As Polaris says, if supplementation has happened then the blood tests don't really mean an awful lot unless they continue to be low.

    Significant numbers of ME patients have reported a good response to methyl B12 in terms of improvement in symptoms and although some of that may be down to misdiagnosis the implication from the studies is that it was more than misdiagnosis.

    Another thing that may be worth looking into is MTHFR - a range of genes that can cause problems converting vitamins to methylated forms used at the cellular level. I believe there is quite a bit about it on the phoenix rising forum.

    this site also seems to give a good explanation

    mthfrsupport.com.au/what-is...

    because there is a range of genes they respond differently and some people actually find that the methylated forms of vitamins either don't help or even make things worse.

    Think from the history that it is quite clear that your son does have some sort of issue around B12 absorption - hope that you do manage to get the GP to listen .

  • Wow - my internet has been down for a few hours and it was such a wonderful surprise to see so many comments when I got back online. You really are a lovely bunch and it's so kind of you to answer in such depth..

    I'm going to read all the links and make careful notes so I'm completely clued up and ready for his next appointment!

    I already follow the thyroid site on here - I have an underactive thyroid as did my mum (hashis) My sister & both my kids are hypothyroid too - and yet our GP said it doesn't run in families? We were lucky enough to be patients of Dr Skinner for a number of years and he turned our health around!

    My son seems adequately medicated on 150mcg thyroxine and 1 grain of armour but I'll dig out his last blood test results and post them for advice!

    Your answers have thrown up some really interesting facts and I can't thank you all

    enough for being so caring. I'll let you know how he gets on at his next appointment - fingers crossed! xx

  • Hi,

    Have you ever spoken to teh PAS? If you leave amessage they will get back to you.

    pernicious-anaemia-society.... 01656 769467

    Has your son ever had an IFA test?

    Sorry I'm too tired to add more but have a look at my recent posts on other threads.

    I always get paper copies of all blood tests. there can be clues on the FBC (Full Blood Count). Have alook at MCV and MCH results.

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