Help again very High B12

[chapers]

Hello I have Hashimotos ,vitaligo, alopecia ,lichen planus and I am a coeliac and I have been for thirty years .

I usually take 20mgs Liothyronine and 75mgs of Levothyroxine but because my TSH has been suppressed 0.03 for the last three times I've visited the Endo (so 2 years) this time when she asked I agreed to reduce the T3 to 10 mgs and raise the T4Levo to 100mgs, before I'd resisted as I felt well and argued that sometimes on T3 the TSH is suppressed

My results are slightly different TSH is still 0.03 range 0.35 -4.94 mu/L FT415.6 range 9-19 pmil/L , FT3 raised 6.6. range 2.6.-5., and despite the fact I have not taken any vitamins or minerals for over a year when they appeared to be at their optimum levels so I stopped ,my B12 is still over twice the highest range

1261 range 180-640 ng/L.

Last blood test 8 months ago it was almost four times higher so has come down. Ferritin is also high 355 range 15-200 ng?L.

You have helped before so I was interested in your thoughts. Thank you .

[humanbean]

What is your level of folate?

In order to process vitamin B12 people need to have a good level of folate.

Do you eat a lot of food which is fortified with folic acid? Folic acid and folate are not the same thing - see this article :

chriskresser.com/folate-vs-...

[chapers in reply to humanbean]

Thank you for replying so quickly and the article which I read.

My Serum Folate was 14.2 range 3 -20 ug/L.

I have mostly organic veg as I grow my own , and so eat lots of green veg , beans etc so think Folate levels are good. I wasn't sure from the article what food substances are rich in Folic Acid other than vitamin and mineral supplements , so I don't know if I am consuming to much and as I said ironically these high levels started after I stopped taking any supplements over a year ago.

[humanbean in reply to chapers]

Folic acid isn't a natural substance and it is only found in foods which are fortified by the manufacturers. If you're eating mostly unprocessed foods then you won't be coming across much folic acid in your diet. Your folate levels look fine, and your body should be able to process B12 with the level you have.

There are quite a few possible reasons for your body having lots of B12, and they aren't all good news :

The pathophysiology of elevated vitamin B12 in clinical practice

academic.oup.com/qjmed/arti...

There is a PDF option in the above link which is helpful because it allows you to download the research paper as one file, which you can print out if you need to.

[chapers in reply to humanbean]

Thank you have downloaded and read . Cant say I understand it all but get the gist and not great. Thinking about it I have been having so many nights where I can't sleep as seem to suffer from horrendous indigestion and heartburn and despite being extremely careful with diet terrible bloating and uncomfortable so difficult to see anyone with Covid but may drop Endo a line.

Thank you

[humanbean in reply to chapers]

It would be worth including a link to the paper I mentioned (The pathophysiology of elevated vitamin B12 in clinical practice) in any letter or email to your Endo.

[chapers in reply to humanbean]

Yes I will .

Thank you again.

[chapers in reply to chapers]

Hello again. I emailed my Endo who sent a very curt response that B12 was nothing to do with her to contact my GP which I did again via email as difficult to get an appointment due to Covid I have not received a reply yet. But also despite me saying I felt well and had some hair returned and my eye lashes and that the endo would have had the test for some two months and not had any concerns now she has told me to me with the raised FT3 to stop taking my T3 liothyronine " a significant risk of adverse effect such as ...."

" I have nothing further to add in the management and have not organised another appointment in this clinic , I am copying this letter to your GP to continue to see for the care of the hypothyroidism"

I fought for T3 some ten years ago when I was very poorly and did the defective gene test and have been on 20 micrograms combined with various levels of T4 Levo ever since .About three months before this blood test under her guidance I reduced the T3 to 10 mg and increased the T4 to 100mg . Since 2014 my TSH has always been 0.03

which I realised is suppressed but my levels of T3 and T4 have been ok. I have never been to concerned because I know on T3 TSH can be suppressed. This time however with the raised FT3 the endo has insisted I stop the T3 altogether which worries me as it originally made such a difference. I appreciate that in those years I would have changed so it might be what I need but wondered if anyone had any thoughts.