Confusing results can anyone shed some light please

[Leomad]

Can anyone help with my results please. I have t4 9.4(12-22) tsh 0.04(0.3-4.2) t3 3.4(3.1-6.8). I have been on levothyroxine 25 since 2012 and I have now been told to stop them. I still have problems with my weight no matter how hard I calorie count and exercise I still put weight on, my hair is brittle and skin/scalp very dry. Also I am constantly exhausted. Does anyone understand what the doctor might be thinking. She is away for 2 weeks and I can't trust any of the other Drs.

[SeasideSusie Remembering]

Leomad I don't know about not trusting the other doctors, I'm not sure you should be trusting this one!

What reason was given for stopping your Levo? Was it because of your suppressed TSH? Did you point out that even though your TSH is suppressed, your FT4 is below range and your FT3 has barely scraped into range? There's something very wrong here, and it needs investigating. I don't think your GP is capable of knowing what to do so ask for a referral to an endo. Make sure you get a thyroid friendly one by emailing [e-mail] for the list of thyroid friendly endos then ask on the forum for feedback.

And why are you still on a started dose of 25mcg Levo five years after being diagnosed? That's absolutely ridiculous. You should have had retests and 25mcg increases every 6 weeks until your symptoms abated and you felt well.

Have you had thyroid antibodies tested?

[Leomad in reply to SeasideSusie]

Thanks for your swift reply. I've just asked receptionist and they can't see I have ever had a thyroid antibodies test. Stopping my meds by dr was on the recommendation of an endocrinologist apparently they want to retest everything in a month. Just a bit annoying as I feel rubbish. I am cold even though it's 23 degrees. I will definitely email Louise. I wonder what they are thinking???

[Clutter in reply to Leomad]

Leomad,

You will feel rubbish because FT4 is below range and FT3 is low in range.

TSH is suppressed very low considering you are only taking 25mcg and FT4 is below range.

I hope the endocrinologist is suspecting central hypothyroidism where lack of TSH stimulation to the thyroid has caused hypothyroidism. If so, TSH should be ignored and dosing based on FT4 and FT3 levels.

[Leomad in reply to Clutter]

Thanks Clutter. I also forgot to mention they also diagnosed megaloblastic anaemia low vitamin b12 and folate and have put me on ferrous sulphate and folic acid.

[helvella Administrator Thyroid UK in reply to Leomad]

I beg you pardon? Did I just read what you wrote?

They put you on folic acid (with low B12 AND megaloblastic anaemia)?

Folic acid will address megaloblastic anaemia - and is very well-known for masking B12 deficiency by so doing. Too many doctors regard megaloblastic anaemia as a necessary sign of B12 deficiency/pernicious anaemia. Once on folic acid, and with resolved/resolving megaloblastic anaemia, the B12 deficiency gets ignored/dismissed.

The British National Formulary is not known for serious warnings where not absolutely necessary, but they say:

Cautions

Should never be given alone for pernicious anaemia (may precipitate subacute combined degeneration of the spinal cord)

bnf.nice.org.uk/drug/folic-...

Note the word "never" in there?

Please have a look at the Pernicious Anaemia Society forum and post your bit about B12/folic acid over there.

You can find the forum by following this link:

healthunlocked.com/pasoc

[helvella Administrator Thyroid UK in reply to helvella]

Ferrous sulphate is of absolutely no use in megaloblastic anaemia (or pernicious anaemia). It is not iron-deficiency anaemia.

Iron deficiency results in SMALL red blood cells - not big ones. (Having both iron deficiency and B12 deficiency can result in red blood cells which average out at somewhere near acceptable. The Red cell Distribution Width analysis (often part of Full Blood Count) is high in such circumstances.

[Leomad in reply to helvella]

Thanks helvella I'll have a look and repost

[Leomad in reply to helvella]

Will these results affect all of my thyroid results??? As I have been told to stop my levothyroxine and get retested in 4 weeks. I'm worried things may get get masked.

[helvella Administrator Thyroid UK in reply to Leomad]

I very much agree with SeasideSusie and Clutter above.

The B12 issue should not get masked by thyroid hormone or lack of it. But being taken off it seems entirely wrong-headed.

[Leomad in reply to helvella]

That's my opinion too, but I suppose I have to go with what the endocrinologist says for now. If I start to feel really bad I'll just go back to docs. I don't know if it's worth being referred privately so soon. I don't want to pay to be told to wait the 4 weeks. What do you think???

[helvella Administrator Thyroid UK in reply to Leomad]

I wish I really knew what to say.

Yes - definitely go back if you feel at all worse. And please reassure me you have looked at the Pernicious Anaemia Society forum.

[Leomad in reply to helvella]

I am waiting for the go to give me my latest results and then I'll post them but I will have a look there now. Thanks