B12 & CFS

Hi All, I'm hoping someone can help me.

Over 5 years ago I started to become very tired and exhausted, blood tests were done and B12 levels were at 175. I was given b12 tablets and my levels went to 210, however the exhaustion continued and got worse.

I was then diagnosed with CFS, at this point I couldn't get out of bed, slept for almost 20hrs a day and if it wasn't for my husband would of stank and not eaten.

I lost over a stone and half in weight (5ft 8 and 9 stone) and looked anorexic. over the next 5 years I have slowly got better and can potter, my sports days are over and work isn't possible. Prior to this I hadn't seen a doctor in 4 yrs as I was healthy and had no problems.

I've noticed in some countries that they say B12 should be min 500 whereas UK is 200. over the years my levels have been around 220, could I simply have a B12 deficiency?

I do take a vitamin supplement each day with had B12 in.

Thanks for reading

7 Replies

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  • In my experience, having PA, my levels have to be kept up to approx 800 or more for me to feel well. I had many of your symptoms. Taking b12 orally won't work if you have PA. You need shots. I also use b12 patches and take methyl b12 lozenges under my tongue. The uk only allows b12 shots every three months which is ridiculous which is why I supplement.

  • Hi there, i have my b12 injections every 4 weeks. I get lots of headaches and migraines they started when i was in my 20,s .I am 62 now. 6 days before my b12 i get a very severe migraine this seems to be a pattern. I am at my wits end with the pain right now. The doctors have taken away zomig,a triptan that used to help. Does anyone out there have this pattern?

  • Yes, I get migraines (there's a link to my story below). I think if you've noticed a definite pattern of when they return, you should try having your next injection just before that happens, i.e. you probably need 3 weekly injections. Do you think your doc would agree? It's a whole lot cheaper and safer than migraine medication, and I have used this very same argument with my doctor...

  • I doubt very much if you have CFS, what you have is B12 deficiency which has been incorrectly treated by your doctor, it is scandalous. I would urge you to get further advice from the Pernicious Anaemia Society or from B12d.org:

    pernicious-anaemia-society....

    b12d.org/

    You need B12 injections, and after all this time of no treatment you're probably going to need them frequently. You also need to find out what your folate and iron levels are, they are important co-factors. A similar thing happened to me, you can read my story here:

    pernicious-anaemia-society....

    There are other tests you can have done at St Thomas' in London, with a referral letter from your GP. These are Active B12 (£18), MMA (£96) and Homocysteine (£40). If you decide to have any of these tests it would be best not to use any patches or sublinguals in the meantime. Quite honestly, your doctor should never have given you tablets in the first place.

    Hampster

  • Can you have the B12 MMA Homocysteine tests even if you have been having the injections for 17 years? I never got a defined answer to why i have pernicious anemia,and diagnosed at such a young age, i was 22 when i finally got my first injection and that was after them deliberating for nearly two years!!

    B grateful for advice

  • The tests just tell you if you are deficient, they don't tell you the reason for your deficiency. And if you're on injections they would likely come back normal.

    Doctors like to think PA/B12 deficiency is an illness that only afflicts the over 60's, this is wrong, there are lots of younger sufferers. As to why you have PA, it's normally a mixture of genetics and environmental factors I think, as with any autoimmune disease. There are also many other reasons to become B12 deficient, without having classic PA. If you want to know more I would really recommend reading the following 2 books, if you haven't already done so:

    Could It Be B12? An Epidemic of Misdiagnoses (Sally Pacholok, Jeffery Stuart)

    Pernicious Anaemia: The Forgotton Disease (Martyn Hooper)

    And also the main PAS website and B12d.org.

    Hampster

  • Hey Hamster1,

    Thank you so much for your response, you have given me some great advice. I will definitely obtain those books. I have not been bothered by finding out any more about it until recently when i developed other ailments!!

    I really appreciate you advice and support, thank you.

    astoneham

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