Take supplements of vit and B12 or not?

[a58_-m]

If B12 is in the very low "normal" range is it better not to supplement and then ask for retest in 3mths or supplement and hope the levels increase?

[helvella Administrator Thyroid UK]

Classic question.

I don't know if there is a real answer. It is a nightmare trying to make standard doctor care work with other approaches - even something as simple as taking a vitamin tablet!

Don't take this as an answer for you - it is simply my experience. I decided to try taking B12 for tinnitus as it is widely mentioned as one of the things that possibly help. It did not appear to help at all with tinnitus. But it did help with the facial nerve pain I was then getting. This was entirely uncontrolled and without any advice or help regarding B12 from any medic.

I still take B12 - not every day but only when I think about it or if I feel even the slightest twinge in my face.

But I really, really, really want to know if my B12 level was low. Or, indeed, is low.

What I wish had happened is that I had been tested using the Active B12 test. I had received advise/further testing depending on that test result. Then I had either been given appropriate B12 supplementation and further testing if needed. Only if the Active B12 had shown it was not an issue, then try B12 tablets myself.

In my view any attempt at an answer has the fundamental problem that long-term low/inadequate B12 can result in nerve damage that cannot be reversed. If you are in danger of suffering such nerve damage then you have to do whatever is needed to get B12 levels raised. But you also have to recognise that this might mean you don't get diagnosed with a severe B12 issue. That is, you might never get a B12 injection which might be what you really should get.

Do you see why it is so difficult to answer your question?

Hopefully some others will pile in with their ideas. My ramble is simply to highlight both my experience and the difficulties.

Rod

[RedApple Administrator]

Another alternative, if finances allow, might be to get your own Active B12 test done and move forward according to the results. e.g. if your test shows no problem, then self treat with B12 tablets. But if the test shows you do have a problem, take the results to your GP and ask for appropriate treatment.

Active B12 test info on this page of the main website:

thyroiduk.org.uk/tuk/testin...

[Jackie]

Hi Personally I would wait for 3 months and have a new test. Two things to consider the NHS test not very reliable. 2nd a good Endo would treat it if lowish.

I would try in 3 months and then if still feel "off" find a very good Endo yourself, only then ask for a referral. When found one, phone their sec and ask what policy on treatment eg b12 and T3 etc. It is better to get the treatment from the GP directly or via and Endo.In any case you will nee re tests. annually if OK, more if not.

Best wishes,

Jackie

[Hidden]

Getting, and maintaining, adequate B12 treatment from a GP is a continual fight, akin to what people go through to obtain the correct hypo diagnosis and treatment. I think your B12 levels are too low already (from your previous question), and you have a family history. I would be sitting in that GP's chair and not moving until he agreed to move forward in some way. The options in my mind are:

1) Therapeutic trial to see if your symptoms respond to B12. It's a harmless vitamin, far better to try this than more dangerous narcotic drugs. If you go down this road you need good levels of folate and ferritin, not just low normal. Some documents to convince your GP for a trial, both from B12d.org (one being Dr Chandy's protocol):

b12d.org/sites/default/file...

b12d.org/book/export/html/1762

2) Stress with your GP the unreliability of the serum B12 test, and the fact that people can and do suffer serious neurological damage when in the "normal range", i.e. functional B12 deficiency. Some links I've already given you on the tests unreliability:

ukneqas-haematinics.org.uk/...

nejm.org/doi/full/10.1056/N...

Some articles on functional B12 deficiency:

ncbi.nlm.nih.gov/pubmed/191...

aahs.org/medstaff/wp-conten...

3) Ask for further testing in view of 2) above, there is nothing to stop him getting the antibody tests done, anti-intrinsic factor, anti-parietal cells (and honestly, with a family history and existing autoimmunity he should be doing this anyway). As mentioned in previous answers the Active B12 test is available through St Thomas' in London for £18 with a GP referral letter. If you don't live near London the sample can be posted, you can get more details from Denise Oblein (contact details in the link posted above by RedApple). She can email you information about the test to give to your GP, and if you're posting, perhaps the GP would be willing to draw the sample for you as well.

If the Active B12 result comes back below 25 then you're deficient. Between 25 and (I think) 70 is a grey area and they will automatically do the MMA test. If you have elevated MMA then you're deficient. My serum B12 was 310 and I asked my Endo to do the MMA test on me which was elevated. Another useful test is homocysteine, but it has to be done at St Thomas', it can't be posted. If you order all 3 tests and go to St Thomas' they cost £18, £96 and £40 respectively. Some private labs do these tests but I think they cost significantly more. More information on testing here:

b12deficiency.info/testing....

4) Inform and educate. Give your GP a copy of the Scottish Parliament petition, which summarises all the difficulties with diagnosis and treatment:

scottish.parliament.uk/Gett...

scottish.parliament.uk/parl...

(initial response starts half way down page 227, the petition is ongoing)

Invaluable information can also be obtained from the books:

Could It Be B12? An Epidemic of Misdiagnoses (Pacholok & Stuart)

Pernicious Anaemia: The Forgotton Disease (Martyn Hooper)

And send your GP a link to the documentary "Diagnosing and Treating B12 Deficiency":

b12deficiency.info/films.html

5) And if you've done all that, and your GP is still not interested, then honestly you should find yourself a new GP. There are options to treat yourself, which you can get more info about from the PAS forum or the Facebook page.

b12deficiency.info/very-use...

I personally can't recommend sublinguals and sprays as the sole source of treatment, as I don't get that kind of relief from them. In fact I don't use them at all now, just B12 injections every 2 weeks via my GP. Whilst it's often said that "methylB12 is best" on this forum, this is not always the case, everyone is different. Not everyone can tolerate the strong detox effect of methylB12, others have methylation cycle defects that mean they are best with hydroxoB12. And yes, there are even some who prefer the cyanoB12 injections. We're all different and one size doesn't fit all.

It is best to hold off on supplements until you've had further testing and investigations done as in 3) above, but waiting 3 months and just having the serum B12 test again is not a good option. Time is important in terms of avoiding irreversible symptoms, and your serum B12 level may never fall below "normal" range. In my mind, it's like waiting for a diabetic to go into a coma before you give them an insulin injection.

Apologies for the long answer, but low normal serum B12 comes up so frequently on this forum that sometimes I feel like going all out with the answer!

H x

[debjs]

I have been seeing a private Dr who says anyone suffering from hypothyroidism should take a B12 supplement everyday. He recommended 1000mcg. Even though my levels were 155 (150-900) my GP said the NHS would not offer treatment unless they dropped below range. It has taken about 6 months to increase my levels to a reasonable range.

[Hidden in reply to debjs]

Shocking isn't it, that you can be that close to the bottom of the range (which is waaaayyy too low anyway), and not get treatment. Did he really think that extra 5 pips would be the difference between good health and bad? He's the doctor, lab ranges are just guidelines, blaming his failure to treat you on the NHS is a major cop-out. You say your levels have come up, but how do you feel? That's what matters. If you find you don't do so well on the supplements then come over to the PAS forum or Facebook page for further advice.

H x

[debjs in reply to Hidden]

Thanks for advice. I have been able to increase my NDT since my levels have improved so it must have made some difference though I have calcium problems too so hard to tell. To be fair my GP has been great generally and has prescribed me NDT and calcium despite contrary advice from the endo I saw originally.