Puzzling blood tests

[AS14]

Hi

Ive posted here several times with symptoms and blood tests and its clear Im not converting well. Ive had severe hypo symptoms for almost a year now and not had a change in levo for many months.

Ive been on levothyroxine for 9 years and apart from the odd blip Ive been mostly stable. My blood tests have been practically identical the majority of the time T3 barely scraping the bottom of the range, T4 mid range and tsh around one.

I can see why Im not converting well with those ranges but how can I be ok 18 months ago but have severe hypo symptoms with almost identical T3 T4 and TSH now.

Id understand if Id had a good T3 number before and it dropped to just scraping into range now but its been low for years on end.

I know the blood test is in adequate but Im struggling to understand this.

Thanks

[SlowDragon Administrator]

Looking at previous posts

You have Hashimoto’s and had total thyroidectomy

Did you get vitamin D tested yet?

Have you had coeliac blood test

Are you on strictly gluten free diet?

Email Dionne at Thyroid Uk for list of recommend thyroid specialist endocrinologists who will prescribe T3

[AS14 in reply to SlowDragon]

Hi

Thanks for getting back to me

Yes I had TT nine years ago, consultant told me its hashimotos but Ive never had anything in writing to confirm it . Letters from the hospital only ever mentioned the surgery. Blood tests with gp always came back as satisfactory.

At that time time I never knew to ask for numbers or ask questions.

My last vit D test was 89

Ive not had a coeliac test and Im not gluten free.

Ive got the list of endocrinologist and Im looking into T3 .

Im just starting to learn all this so please excuse me if Im a little slow with this but what exactly are the blood tests measuring . I can see its tsh, t4 and t3 but is that whats in the blood or is whats getting into the cells ?.

Can you have an identical t3 months apart but have different amounts actually getting into the cells. ?

Thanks again

[SlowDragon Administrator in reply to AS14]

The longer we have low Ft3 the worse symptoms get

Common to need the addition of T3 alongside levothyroxine after years of managing on just levothyroxine

Good vitamins helps improve conversion of Ft4 to Ft3

Gluten intolerance extremely common with hashimoto's. You don't need any obvious gut symptoms

[AS14 in reply to SlowDragon]

Im starting to wonder how long my t3 has been low for, I suspect its a lot longer than I realised.

I have m.e but for a lot longer than than thyroid problems, brilliant doctor and I can tell the difference between the two so Im confident the diagnosis was right.

When I was put on levo I felt so much better for it, so for me its only been a good thing. Its hard to say how effective the levo was though, only that I felt better for it, pretty profound before and after really. It got me from being bed bound to up and about and a much better quality of life.

Ive been hypo before when my weight has fluctuated and the symptoms are always bad and very obvious so its easy for me to recognise them. However its always gone along with a high tsh, and a change in dose got rid of the symptoms in weeks and my tsh returned to around 1. . Not this time Ive had a good tsh of 0.7 for ages yet feel extremely hypo.

Nothing has changed, my weight is the same, take levo properly with no change in dosage for ages and my vitamins are good.

I just dont understand how I can have near identical blood tests yet feel good one time and dreadful the next .

Im hoping to start T3 soon but I will investigate gluten intolerance too, is there a home test for it ? Xx

Thanks very much for your help

[SlowDragon Administrator in reply to AS14]

Home test for coeliac...not gluten intolerance

£23 approx on Amazon

Dio2 gene test may be helpful too

See Thyroid UK website under testing

[jimh111]

Difficult to explain. Endocrine disruptors can affect thyroid hormone action without affecting thyroid hormone levels. Has your work or home environment changed during this period.

[AS14 in reply to jimh111]

Hi

Thanks for your reply

Ive never heard of endocrine disruptors, what are they ?.

Nothing in my life has changed.

[jimh111 in reply to AS14]

This video gives a simplistic but excellent introduction youtube.com/watch?v=ibfAF66...(Not working as expected?) . I would take the pragmatic approach for now and ask for an increase in your levothyroxine.

[jimh111 in reply to jimh111]

This link isn't working for me. Try ibshypo.com/index.php/findi... . The video is at the bottom of the page and the link at the very bottom of the page goes into a lot more depth.

[Hidden in reply to jimh111]

Very interesting video. I'm working through severe iatrogenic hyperthyroidism and have had a very rough 2+ years. Learning all I can about how to eliminate potential food and environment problems. Thanks very much for posting.

[AS14 in reply to jimh111]

Hi

Great video makes understanding it easier.

Thanks very much