B12 ( I have asked before but didn't 'get' it )

[ThyroidHell]

Hi all , I haven't got thyroid glands anymore and wonder if I need B12 because I remember reading from somewhere that TT patients need this supplement because they are unable to produce it after TT am I correct? I am due to have blood tests in 2 weeks time and can't see B12 mentioned only calsium. Any advice welcomed :o)

[tegz]

I don't think that's right,TH. Thyroxin is the missing link.

B12 is animal in origin and therefore has to be ingested as well as made by bacteria in the gut -which is again animal source. Meat, fish, eggs milk/cheese Kefir!! etc.

[helvella Administrator Thyroid UK]

Humans cannot make B12 at all.

Some gut bacteria can make B12 but the standard view is that the ones that make B12 reside too low in the gut for that to be of use.

Many hypothyroid people fail to absorb enough B12 from their diet because of a combination of factors - which could include some of these:

inadequate stomach acidity

lowered stomach enzyme levels

autoimmune issues which affect production of intrinsic factor

generally poor gut transit

impaired enterichepatic B12 recirculation

Perhaps you were thinking of calcitonin? That is produced by the thyroid and total thyroidectomy stops you making any. However the standard view is that calcitonin is not very important in humans with calcium levels being largely controlled by the parathyroid glands.

B12 will be unlikely to be tested unless you specifically ask for it. Even then, they might refuse.

Rod

[ThyroidHell in reply to helvella]

Ok thanks , it became clear now and I was confused of the whole B12 issue. I became concerned as my daughter has B12 problem and had medication for it.

[Hidden in reply to ThyroidHell]

I hope your daughter is still having treatment, this usually needs to be for life unless the deficiency is of purely dietary origin (i.e. vegan). If she has Pernicious Anaemia, there is a strong hereditary link, as with other autoimmune diseases, so if you haven't already done so you should get your B12 tested (plus folate and iron/ferritin). Your daughter being a sufferer should be reason enough for your doctor to do the test on you.

Hampster

[helvella Administrator Thyroid UK in reply to Hidden]

Very much agreed.

[ThyroidHell in reply to helvella]

Apparently by her bloodtests she is ok now , which I doubt ( I keep asking her to go back for more tests but as she is young they say everything is all right !!) She still have very shaky hands and I am sure she is not all right. She has now gone to Australia for a year and I urge her to have it checked there , maybe they believe her there more :o( can't understand her treatment at all as one stage they were going to give her injections. She is not vegan.

[waveylines in reply to ThyroidHell]

Yeah the blood tests are not really very good -the active B12 blood test is better -I wonder if she can get that done out there?

[Hidden in reply to ThyroidHell]

The fact that she is young makes it anything but alright. It is more likely that her B12 deficiency is due to autoimmune pernicious anaemia, and the treatment for this is lifetime injections of B12, there is no cure. The tablets are useless as the B12 cannot be absorbed in the stomach, but the one thing they might do is raise your blood serum levels into the "normal" range, as something like 1% gets through via passive diffusion. It is not nearly enough to get through to tissue level and to repair any damage that has been done.

I cannot decide whether I am white hot with fury, or in despair, every time I read a story of incorrect B12 treatment. It happened to me, a little bit of treatment and then sent on my way. 6 years later, I fought to get my treatment reinstated and I now have a lot more symptoms and neuro damage to try and reverse than 1st time around, and a thyroid condition to add to the misery.

The Patient UK professional reference article has a good summary of treatment protocol under "Management":

patient.co.uk/doctor/Pernic...

Treatment is with injections, a loading dose followed by a maintenance jab for life. The serum B12 test is irrelevant once on treatment and should not be used to monitor progress:

"It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[24] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels."

Obviously I don't know your daughter's circumstances, maybe there were reasons the doctors thought her deficiency was dietary related. But doctors are so bad at diagnosing and treating this that I assume the worst. She may get a good doctor in Australia, or not. Mistreatment of this disorder is a global problem. You might want to have a look at the Pernicious Anaemia Society website:

pernicious-anaemia-society....

You don't have to be a member to read the forum:

pernicious-anaemia-society....

And also this support group:

b12d.org/

Please urge your daughter to do something about this, and also get screened yourself.

H x

[ThyroidHell in reply to Hidden]

Thanks for the reply and I agree with you 100% , she only saw a practise nurse who told her that results are ok even though she has been diagnosed with Pernicious Anemia ! I told her to go back and she did only to be told all is fine . I asked her ' what about your shaky hands' ? She said ' Mum they wont do anything or listen ' just tell me to take iron tablets. Its like banging your head against the brick wall. I can't believe this society sometimes, when she was 1st diagnosed the doctor actually told her that its vital it was discovered because over the few years she would have become very ill with it ???? COME ON ..she is obviously not cured ... oh I don't know anymore , its is just so scary when you know something is wrong and health professionals ignore it. :o(

[Hidden in reply to ThyroidHell]

Do you think you can convince her to go see a doc in Australia? Failing that I think Australia is one of those countries where you can buy injectable Hydroxocobalamin (B12) over the counter. Lots of advice on self injecting over on the PAS forum. H x

[ThyroidHell in reply to Hidden]

Hi Hampster , I just spoke to her on phone and urged her to sort it out. She is taking the tablets. Thank you for highlighting the seriousness of this and I won't let the matter rest. She actually have a gum infection due to wisdom tooth pushing through at the moment and she text me that they gave her antibiotics over the counter, so looks like they can also give something like B12 over the counter too! Many thanks again :o) marja x