Low B12

[Lovethemozman]

Hi there, can anyone advise ref low B12 results- I currently take a B12 complex and B1 along with selenium and magnesium. I am also gluten free. Any advice much appreciated 😃

[SeasideSusie Remembering]

Lovethemozman

You need to stop taking any B vitamin supplements and you need to ask your GP to test for B12 deficiency/pernicious anaemia.

Check here for any signs of B12 deficiency b12deficiency.info/signs-an... and list them to show your GP. Bear in mind that taking folic acid (which will be in your B Complex) can mask signs of B12 deficiency.

It would also be a good idea to pop over to the Pernicious Anaemia Society forum for advice healthunlocked.com/pasoc

[Lovethemozman in reply to SeasideSusie]

Thanks for your help much appreciated 😃

[Marz]

The additional tests you are needing are Homocysteine and MMA. If raised then it can indicate a B12 deficiency at a cellular level where it is needed. The Active B12 test indicates the amount of B12 available that can reache the cells - hopefully Often they are tests that your GP will not be aware of but are of course important ....

[Lovethemozman in reply to Marz]

Thank you 😃

[SlowDragon Administrator]

Your B12 is extremely low, you need full testing by GP

As SeasideSusie says, you need to stop all B vitamin supplements and get full testing

Also get your vitamin D tested

Are you diagnosed as actually coeliac or gluten intolerant ?

You have high TPO and TG antibodies.

High TPO confirms Hashimoto's also called autoimmune thyroid disease

Are you on Levothyroxine already? Your TSH and FT4 are good, but FT3 is low.

High TG antibodies can be due to Hashimoto's and/or Pernicious Anaemia

healthline.com/health/antit...

[Lovethemozman in reply to SlowDragon]

Thanks, I was diagnosed with Hashimoto's last September so on levothyroxine for that but still feel pretty awful. I will stop all B supplements and contact my endocrinologist 👍

[SlowDragon Administrator in reply to Lovethemozman]

Very important to test vitamin D.

Are you taking vitamin D supplements?

Low vitamin D is extremely common with autoimmune diseases

Such extremely low B12 will not be helping. It may be low due to PA, but it could just because your FT3 is very low

Symptoms of low B12

b12deficiency.info/signs-an...

GP should run B12 tests and start loading dose injections

Post about Loading doses of B12

healthunlocked.com/pasoc/po...

Once folate, B12, ferritin and vitamin D are optimal, if FT3 remains low then you may need addition of small dose of T3 (Liothyronine)

Many of us with Hashimoto's are poor converters and need addition of small dose of T3, especially with gluten intolerance and low vitamin levels. This shows gut function is badly affected and approx 20% conversion happens in gut (or rather it isn't but should go)

Is your endocrinologist NHS or private? One from Thyroid UK list of recommended thyroid specialists

Obviously current ridiculous cost issue of T3 means you may struggle to get prescribed T3 on NHS, depends on your local CCG

Debate in House of Commons this week

theyworkforyou.com/debates/...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

[Lovethemozman in reply to SlowDragon]

Thanks - Dr Toft is my endocrinologist - I have sent my results to him 👍

[Hidden in reply to SlowDragon]

Hi there! How long would you need to stop b12 supplements to get a more accurate serum b12 test ( i know that they are bad for accuracy as it is). I have neuropathy so too scared to stop my injections. If anyone has neurological symptoms i wouldnt recommend delaying for very long!

Ps my haematologist said that i could have the intrinsic factor test on b12 injections.

[SlowDragon Administrator in reply to Hidden]

Apparently it can take 4 months to drop. But obviously unlikely to stop that long.

I read, on PAS healthunlocked, a fortnight recommended

[Hidden in reply to SlowDragon]

Thank you for your reply. My b12 was only 115 (189-900)and i never got any injections for well over a decade. Doctors ignorance. B12 injections havent cured my neuropathy yet even after a few yrs of treatment but im also high in mercury and mercury also causes neuropathy.

[SlowDragon Administrator]

Full private testing of MMA and homocysteine plus active B12

nutris.viapath.co.uk/pages/...