B12 and Levothyroxine

[Jackobee]

Does anyone know the recommended level of b12 for good conversion of t4?

[Marz]

Have been reading your earlier posts/threads - and see you were going to have your B12 tested. What was the result ? B12 is difficult because the blood test only shows both types of B12 - both bound and unbound. Only 20% of your result is the estimated amount that can reach your cells - where it is needed.

[Jackobee in reply to Marz]

Results in April were 129ng/L with a range of 180-1000, result of test last week were 386 I think, I will get print out from GP. As the range is so wide I wondered if this latest result would be considered low for someone on Levothyroxine as I am again experiencing the same symptoms of extreme tiredness, sleeping 10-12 hours yet wake up tired, facial neuralgia and others which I would normally associate with hypothyroidism. My TSH has been < 0.05 for many years so high T4 is unusual for me. I have not had another thyroid test as assumed was low b12 as the neuralgia is a symptom only experienced with that and it disappeared after course of hydroxocobalamin injections.

[Marz in reply to Jackobee]

Had you been supplementing B12 in between the two tests ?

[Jackobee in reply to Marz]

Yes but stopped taking supplement for a week before having bloods taken. Second test was actually 307.

[Marz in reply to Jackobee]

It needs to be far longer than a week for B12 - so the second result will be skewed ... What investigations are you having for this very low level ? If you have neurologial symptoms your treatment should be injections every other day until symptoms no longer improve - as laid down in the Guidelines for Cobalamin and Folate Deficiency - that your GP should have read !

EDIT: Just read about your Ileostomy. B12 is absorbed/metabolised in the Terminal Ileum for its return to the liver. So without doubt your injections MUST be continued. I had a hemi-colectomy some 45 years ago and only started B12 injections a few years ago - the damage has been done. My B12 was always around the 300 mark as I had been supplementing a B Complex. Your level needs to be over 500 to prevent cognitive decline and neurological damage. I now self inject once or twice a week.

[Jackobee in reply to Marz]

Original course of injections improved symptoms, I asked for retest as neuralgia had returned. Are you not in the UK as I don't think you are able to self administer b12 here. My GP is useless and am changing practice but was advised to wait until the treatment started in January was completed in case information got lost in the change over.

[Marz in reply to Jackobee]

If you go over to the Pernicious Anaemia Society forum - here on Health Unlocked - you can read all about B12 and self injecting. Lots of people buy from Germany ...

Diabetics self inject as do people with other needs. Yes I live in Crete so can buy over the counter and look after myself - all very grown up