How much B12?

[morebeans]

Have Hashimoto's - antibodies 648 (range <6), and fibromyalgia. Vitamin B level 235 (range 211-900). Folate 9.9 (range2.4-20). Treatment with T3 and T4 has helped but still have problems with tremors, palpitations , balance issues and loss of sense of touch. Have ordered a range of supplements to support metabolism but in particular have started on Jarrows methylcolbalamin 1000mcg twice a day. Is this enough and how soon might I feel some effect?

[nostoneunturned]

If a typo was not involved then your B12 at 235 is only 24 above rock bottom of 211. This is really bad, your doctor ought to be arranging for you to have loading injections of B12 (UK uses hydroxocobalamin for these) at the rate of one injection every seconnd day for two weeks. The balance and touch isssues that you describe seem to me to be neurological. The British National Formulary, Section 9.1.2, headed Hydroxocobalamin, states:

Dose

By intramuscular injection , pernicious anaemia and other macrocytic anaemia without neurological involvement, initially 1mg 3 times a week for 2 weeks then 1 mg every three months.

Pernicious anaemia and other macrocytic anaemia with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1mg every 2 months.

You can go to the BNF website: bnf.org sign in and get half an hour on the site, head for 9.1.2 Drugs used in megaloblastic anaemias.

Injections are the fast and effcient way of getting the maximum of B12 into the system.

The slow way is the one I had to use as no GP would take me seriously and I was left to rot with B12 level of 167 ref range 180- 800, 13 below the bottom of the range but who cared? Nobody! I went through hell with multiple symptoms but nobody took any notice of my symptoms, even when I showed how various muscles were leaping about spontaneously and I was dismissed as having "health anxiety" just because I produced a list of my symptoms and also told "If you are going to look for symptoms you are going to find them."

But through knowledge gained on the Pernicious Anaemia Society I bought methylcobalamin, Swanson's. 5000mcg x 60 tablets, took 25000-30000mcg per day (OK, probably far too much as therapy but I knew it was harmless and excess would be flushed out of body and I was desperate, could barely function, spent many days in bed like a zombie unable even to read) spreading the intake through the day, taking it sublingually.

In four months I had well and truly raised my levels from 167 to >1500, i.e., so high it was beyond the measurement capacity of the lab.

Check out the labs etc offered by Thyroid UK at a discount for B12 assessment. I have used myrios.co.uk.

Hope this helps your decision making. I would not know if 2000mcg would have been enough for me, but what I did worked wonders for me.

[morebeans in reply to nostoneunturned]

Thanks, Nostoneunturned - how come you weren't given proper treatment when you were actually OUTSIDE the normal range? I thought NHS protocol meant that you'd have been given injections at that level. My GP is actually pretty good (said she'd learned something when I told her the hypothyroid people frequently have a B12 absorbtion problem), but though she happily gave me the printout showing my 235 level, she didn't offer injections. I suppose I could inject myself, if necessary. How were your symptoms once you got your levels up and how soon did you start to notice a difference? Can you have low B12 without having pernicious anaemia?

[nostoneunturned in reply to morebeans]

I was not given any treatment. Indeed the GP told me I was "B12 obsessed" and was extremely angry and contemptuous when I asked for treatment having deduced I was B12 deficient from reading Dr Chandy's and PAS sites. All the while he actually had the result of a B12 test carried out early 2011 where my B12 was 167 but seemingly had not even bothered to read it despite my despair and symptoms, like the spontaneously writhing muscles I showed him. GP then referred me late 2011 to a neurologist who was just as contemptuous as GP. A truly awful experience, it made me so blazingly angry. I kept a diary of all symptoms but nobody would read it even when I produced it but they referred to it scathingly as though I was just a neurotic woman. ("This woman keeps a diary in small font....has health anxiety". I felt like responding that with a doctor like him it was no wonder I was anxious about my health, he certainly wasn't anxious enough about it.)

Several months after the NHS test was done I asked for a copy of it which was produced immediately and without any embarassment on the part of the GP (which reinforces my theory that he had never read it) and so I discovered that I had been right all along, I was very deficient in B12 at 167. Challenged GP about this so he then spluttered some rubbish that he had "probably decided not to treat you" then he refused to speak to me any further and refused to see me again. Wonderful.

You could not make it up. Some GPs should be shot. Perhaps they get bonus payments for reducing the population! Yes, I know I should make a complaint but what good would it do? Life is too short.

I resolved to treat myself rather than go on suffering as the contempt and anger shown me were too much for me - I was not well, I could not cope with it, I spent days in bed just like a zombie, unable to move or do anything but breathe in and out. But I had my trusty computer and the PAS!

Thank God for the internet, for the PAS and Saint Martyn Hooper! And Amazon. I started mid November taking 25000 to 30000 sub-l methylcobalamin daily, enlivened by the occasional 500mcg spray. By mid-December, only 5 weeks later I knew there was considerable improvement as fierce pains and tingling had eased - but not vanished. Kept at my sub-l therapy as described and four months later I was normal. I decided to stop the supplemental B12 in April 2012 but added Betaine Hydrochloride with Pepsin once a day, and added liver to my diet and have yoghourt every day. Dairy products are very important in B12 supplies. Ferritin, folate and D are all up to speed so the environment is as good as I can get it. Take 3000Vit C daily also.

My latest private test result arrived today, over 1300ng/L. Don't know where my last test was exactly as it was >1500 April 2012. I feel great. I suppose I am losing B12 and might well have PA but I'll find another GP to do the requisite tests in the future now I am strong enough physically and mentally.

Yes you can have low B12 without having pernicious anaemia, absorption issues occur in hypothyroidism; H Pylori infection; parietal cell antibodies affect absorption and lead to low or non- production of Intrinsic factor; insufficient production of hydrochloric acid so the B12 cannot be cleaved from the animal protein; then there are dietary issues, vegetarianism.veganism, or plain poor diet.

[waveylines]

Thanks nostoneunturned. I think I need a blood test. I have been taking 1000mcg of B12 daily alongside a B12 complex tablet with folate for the last 2 months and have improved. Am getting a little more energy ( still early days), less indigestion and my very badly ridged nails are showing signs of improvment. I was wondering if I am gluten intoelrance.....but maybe this is not the case.....simply B12 deficient....must get this properly checked. Thank you again.

[waveylines]

Sorry typo - 'B12 complex tablet' should read 'B complex tablet!' lol....