Thyroid hormone resistance

[Dee8686]

Has anyone else been diagnosed with this? I have a treatment plan in place now, just wanted to see if anyone else can relate. (High tsh, high t3 high t4 indicating pituitary isn’t communicating properly and getting t3 into my cells).

Thanks

[greygoose]

I agree that the pituitary doesn't seem to be communicating - by the sound of it, but would like to see the actual numbers, not just an adjective. But, that doesn't mean that the hormone isn't getting into the cells. Why do you think it isn't. I don't think the pituitary has anything to do with absorption.

And, there could be another reason for the high TSH : anti TSH antibodies. But, how high is the TSH exactly? Who told you you have thyroid hormone resistance? Do you have any other diagnosis? Are you taking thyroid hormone replacement? I think we need a lot more information to relate to anything.

[Dee8686 in reply to greygoose]

All in previous post x

My TUK approved endo has told me. I’m very sick. Awaiting t3.

[greygoose in reply to Dee8686]

'TUK approved' endo is a bit of an exaggeration, it was probably just a recommendation from one person. TUK doesn't check them out.

[Dee8686 in reply to greygoose]

Ok wells he’s on the list that is on the TUK website.

[Dee8686 in reply to Dee8686]

I was taking 50mg levo then had a hashi flare that made me super ill. Next blood tests showed results in last post. Am so sick at the moment. Completely bedbound with exhaustion. Just waiting on T3 to arrive which I am tontake instead.

[greygoose in reply to Dee8686]

But your FT3 is high. Why would you want to take more? And how on earth can you conclude that you don't convert when your FT3 is so high.

How did you know that you had a Hashi's flare? They don't normally make people ill. Most people don't even know they're having them unless they do a blood test.

[Dee8686 in reply to greygoose]

I’m so ill and this is the latest advice I have been given.. I don’t know all the answers, I was just looking for someone who might be able to relate to my situation.

I am practically bedbound because of exhaustion. I know I had a hashi flare because coincidentally I had a blood test at the time and I had lots of symptoms.

If you can offer an alternative suggestion I’m open to hear. Thank you

[greygoose in reply to Dee8686]

Do you take biotin in any form?

[Dee8686 in reply to greygoose]

I don’t. I know that can have an effect but I don’t have it.

[greygoose in reply to Dee8686]

OK Well, seems to me you really ought to have the tests again before deciding on any treatment. I find it rather strange that an endo would think that the pituitary controls uptake into the cells.

[diogenes Remembering]

It's important to see all your latest results for FT4, FT3 and TSH, as well as the dose(s) of whatever you are taking (T4 and/or T3). It's also very important to check out TSH by another method if this is high, to make sure there are no interferences in the test giving a falsely high number. This way you can find out whether you are either overdosed and have a false TSH reading, or whether you truly have T3 resistance. At the moment either situation is possible, with radically different treament outcomes. If you have historical test values these would be useful to see what if anything is changing and how.

[Dee8686 in reply to diogenes]

Thank you for your reply. My results are in my last post and at the time I was 4 weeks off any medication. I was taking 25mg levo with a tsh of 4.1 (no t3 level). Found this website, knew I needed an increase and just as I increased to 50mg my blood tests came back showing a Hashimotos flare. (A few posts back).

[diogenes Remembering in reply to Dee8686]

From those results, I'd be suspicious of the TSH test and get it done by another method.

[Dee8686 in reply to diogenes]

What other method would be used to test?

[diogenes Remembering]

One from a different testing station. If your first test was private, get it done on NHS. And vice versa.

[Dee8686 in reply to diogenes]

Actually I did. I had a private test then nhs test the day after. Tsh 9.2 (0.4-5)

T3 3.4 (2.9-4.9)

T4 12 (9-19)

[diogenes Remembering]

The two test groups do not agree with each other at all as regards FT4 and FT3. But do agree on TSH. FT4 20 and 13, FT3 6.5 and 3.4. Almost half and low in range. TSH values are in line with the NHS tests and not with the other. Thus looks as if one set of FT4/FT3 results was wrong and the TSH right both times.

[Dee8686 in reply to diogenes]

Thank you.. I realised that as I posted that they conflict.