No thyroid options

[Bollieforme]

Hi everyone I’m about to try and find an Endo to help me but don’t feel confident in what questions to ask and wonder if anyone can help? I feel the need to be prepared for battle! After a scan recently I was told I have no thyroid left. Previous scan was 3 years ago was told it was ‘spongy’ I am on 120 levo but feeling rubbish, TSH is 20. Levo Was increased from 75 recently, have not noticed any difference in dose rise two weeks ago. Would I benefit from combined T4/T3 treatment? Or T3 alone, does having no thyroid mean that T4 (levo) no longer works/converts?

[SeasideSusie Remembering]

Bollieforme

Is TSH all that you had tested? No FT4 and FT3?

Obviously your TSH is way over range and tells us that you need more Levo, but it would be useful to see FT4/FT3 as well to see if you are actually producing any hormone at all, if your TSH could possibly be falsely high, etc.

Would I benefit from combined T4/T3 treatment? Or T3 alone, does having no thyroid mean that T4 (levo) no longer works/converts?

Impossible to say without seeing FT4 and FT3 results from a test at the same time as TSH is tested.

The first thing to do would be to get your TSH down to 1 or below, and to do this you'd need more Levo, this would then give the highest possible FT4 and we could then see how much conversion you have by comparing FT4 and FT3.

If your GP can't or wont do all 3 tests then you might want to consider doing a private test, and the cheapest for just this basic test is Monitor My Health which is an NHS lab who offer this test to the general public for £26.10 with code here:

thyroiduk.org/help-and-supp...

Do you know if your key nutrients are optimal? These need to be optimal for thyroid hormone to work properly. You need to test Vit D, B12, Folate and Ferritin. GP may do them but if not then again you can do a private test but in that case you'd need a full thyroid/vitamin panel from Medichecks or Blue Horizon rather than the Monitor My Health test.

[Bollieforme in reply to SeasideSusie]

My Free T4 is 12.3 and Free T3 is 3.1 does this tell you if I am converting? Thank you

[SeasideSusie Remembering in reply to Bollieforme]

Can you post the reference ranges for these tests please, but you can't tell how well you convert until TSH is down to 1 or below to give the highest possible FT4.

[Bollieforme in reply to SeasideSusie]

Ref range free T4 (9.0 - 19.0) free T3 (2.4 - 6.0)

[SeasideSusie Remembering in reply to Bollieforme]

FT4: 12.3 (9-19) = 33% through range

FT3: 3.1 (2.4-6.0) = 19.44% through range

I'm very surprised that your FT4 is actually within the range considering how high your TSH is.

Is it possible that your TSH is incorrect, could something have happened to give a false result? I would want a re-test at a different lab to check.

What were your results when on 75mcg?

My Free T4 is 12.3 and Free T3 is 3.1 does this tell you if I am converting?

Your body is making some T3 but it's going to do that anyway because every cell in our bodies need T3 so our body goes all out to continue making this hormone as long as it can. But at the moment it is impossible to tell how well you convert. To know that we need TSH down to around 1 or less, this gives us the highest FT4 and then we can look at FT3 (all from same blood draw) which then tells us how well we convert.

[Bollieforme in reply to SeasideSusie]

Thanks Susie, I think I will do another test, my TSH is always all over the place, previous blood test in November was 0.56. Worst it’s been was 54

[SlowDragon Administrator in reply to Bollieforme]

No point testing thyroid levels until 6-8 weeks after any dose change or brand change in levothyroxine

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Remember to stop taking any vitamin supplements that contain biotin as biotin can falsely affect test results

[greygoose]

Have I understood correctly? Your levo was increased from 75 to 120 two weeks ago? If that is correct, then it's not surprising you don't feel any better: it's too soon to feel a difference. Also, increases should only be 25 mcg at a time, so the large increase could have stressed your body and made you feel bad.

[Litatamon in reply to greygoose]

"Also, increases should only be 25 mcg at a time, so the large increase could have stressed your body and made you feel bad. :)"

My endocrinologist did a large increase at once recently. She was clear that it was not the normal protocol at all, and explained why she was choosing to do it that way.

My question is that after six weeks the body should be relaxed into it, correct? Ie. Can make a good judgment on symptoms. I mean one does 25 mcg at a time simply to not shock your body, to keep things balanced, correct?

[greygoose in reply to Litatamon]

Depends on your body. If the increase is too large, it may take a lot longer than six weeks to adjust. Some people can handle large increases, others it might make them quite ill and make their symptoms worse. Why take the risk? With all hormones it's best to increase slowly, not just thyroid hormones.

So, why was she chosing to do it that way? And how did it make you feel?

[Litatamon in reply to greygoose]

First, thank you. She chose to do it because she felt that someone in the surgical team at the last minute - thyroidectomy - eyeballed me for weight, instead of opening up the file and actually getting the exact number. I look way less than I weigh. Long story but she was not involved in the initial.prescription and they came to me about it minutes before surgery.

So she felt that although unorthodox I had not been on medication long when she saw me (three weeks?). My TSH was very high and she felt that normal protocol would be taxing on me too, in a different manner.

I have felt exhausted by the increase but it is beginning to feel better (three weeks? into the new meds. ) Just wanted to know if at the six weeks mark if I could make a fair symptom conclusion. Thank you. That helps..

[greygoose in reply to Litatamon]

OK, I understand, and at the beginning of treatment it's tends to be better accepted by the body.

Just wanted to know if at the six weeks mark if I could make a fair symptom conclusion.

I have no idea what you mean by that. You haven't actually given any numbers - blood test results/doses/increase/lengths of time - so I probably wouldn't be able to answer that question even if I understood it. It's all hypothetical, at the moment. But, I very much doubt if you've yet reached your optimal dose.

[Litatamon in reply to greygoose]

You already answered it grey goose, so my original point was completely understood. I was merely reiterating the same point, why I wrote. All I wanted to know was if a body would settle into a huge increase within six weeks so that I could fairly judge any lingering symptoms, if my numbers tested when the time comes were "normal". And you answered that.

Thank you for your time.

[greygoose in reply to Litatamon]

Oh! Aren't I clever! lol

But, you should know that there's no such thing as 'normal' where thyroid is concerned. When I doctor says 'normal', all he means is 'in-range'. But, being 'in-range' is not the same as being optimal. Optimal is not a number, it's how you feel. So, don't allow your doctor to tell you 'well, all your numbers are in-range, so there's nothing wrong with you' - as I have been told, many times! That's not how it works. When it comes to thyroid hormone replacement, you need what you need, not what your doctor thinks you ought to need. And not just enough to get your numbers any old where 'in-range'.