Follow up to Endo visit on suppressed TSH. Sweet and sour!

[shambles]

First of all thank you to all that replied and supplied the information prrior to appointment, it turned out to be very valuable.

My aim was to show I had a poor conversion with over range T4, suppressed TSH and falling low in range T3.

It was a female endo, that was a first and I took that as positive.

She certainly seemed to well prepared and armed. After my triage, she asked how I felt, which was good. Next she spent a long time talking TSH and how that was only the number that was worth dealing with. She talked baby talk on what T4 and T3 was, meaning beginners understanding. She then progressed to say there is no point ever testing T4 or T3. She said T3 blood tests are not specifically accurate and T3 is not easy to measure in the blood. Also the risks in involved with a suppressed TSH. She did clarify that when she said suppressed, she was saying a marker of under 0.02. So that was a little disappointing.

On the stronger more positive side she said, we do prescribe T3 and you didn't need to bring all that information to prove you could or can have it! Again, thanks to all of you that provided the information. She said we go how people feel not always by the labs, so that was positive.

She has asked me to reduce my levo for 6 weeks see if my TSH comes up and if I feel better first. That is not so good but this is the path to a T3 prescription, I'll try it.

I asked what happens if my TSH doesn't alter or if I will always need a suppressed T3 and a over the range T4 and she said well that something we will to balance of and it that is the case and I'm happy, then she said that is how it will be. She did say she was happy to spend as much time adjusting dosage and combination dosage until it right.

So in relatives this had certainly some really good aspects but it's still all about the TSH.

[Tina_Maria]

Well it is at least positive that they do seem to be open to prescribing T3, so that's a good thing. Otherwise, I'd trust her as far as I could throw her, as I trust any stickler for the TSH ... sorry to be a bit dismissive.

How do you feel with your current dose of levothyroxine? I understand that you need your T4 on top or slightly over the range to achieve a decent level of T3. Now she has asked you to reduce your levothyroxine to see, if your TSH does come up. If your TSH has been suppressed for quite some time, it is unlikely that it will come up and this reduction will leave you very likely symptomatic. How much has she asked you to reduce? If it is 25mcg it will be a hard ask.

Secondly, if she is happy to prescribe T3, the T3 will suppress your TSH anyway, so why do you have to go through the scenario to see if your TSH is coming up, only to have it suppressed again when you are taking T3?? That does not seem remotely logical or scientifically sound to me, so I am questioning this course of action.

If she was really interested in your wellbeing and sympathetic to your course, she should have perhaps reduced your levothyroxine slightly and added a small amount of T3 at the same time. Logically that would reduce your T4, but the small amount of T3 you will lose through that would be balanced through a slightly bigger addition of T3.

We also often read that patients have their levothyroxine slashed dramatically when T3 is introduced (often far too much), which leaves many struggling. It is almost as if they try to 'set you up' to prove that T3 is not working. I am not accusing her of doing this, but if I was in your shoes, I would keep a very close eye on the next steps.

If you can bear to lower your levo dose in the next 6-8 weeks to get to the T3 prescription, that would be good and could get you to where you need to be, but it might be quite tough. I keep my fingers crossed!🤞

[shambles in reply to Tina_Maria]

I feel very much under medicated. I feel completely wrong!

I agree with absolutely everything you have said and I will end up at square one if I do get some T3 prescibed. She said the T3 would be a trail and I think thIat is what they do, put you on it. go by TSH, eight take you of it again or blame the T3 for your short life!

It really is so so bad. But I am stuck, completely stuck. My GP keeps stopping my levo based on TSH every couple months right down to me running out. I have written to complain that stopping someones thyroid medication when they don't have thyroid amounts to me coming very ill or worse.

As I said to both the endo and GP, the whole situation is making me stressed.

[Tina_Maria in reply to shambles]

I do feel for you and I can see how this is stressing you out. You should ask your GP how he can actually know that your TSH is responding as it does in a healthy person - after all, you do have a thyroid disease? Bet he has no answer to that! Is there maybe another GP surgery you could go to where there might be a GP that is more sympathetic to your needs? Or could you perhaps go privately and get another, more enlightened opinion? I know that is not always an option though.

It just seems that your current surgery as well as the endo do not listen to your symptoms or how you feel, are a slave to TSH and even bully you with withholding medication, which is actually illegal, as you are certainly not falling under any consideration where such a step might be warranted.

I sometimes wonder about their understanding or seeing the bigger picture, they lecture you on your high cholesterol and ask you to make dietary changes or force you to take statins, but forget that the cause of your high cholesterol is a low T3 (which it isn't in their view of course 🙄), which could be solved with an increase in T3 medication. And apparently it does take Einstein to work that one out, certainly not a GP or Endo....

[SlowDragon Administrator]

Now she has asked you to reduce your levothyroxine to see, if your TSH does come up.

That’s standard practice

If TSH rises it is possible Ft3 level might increase

But if TSH rises and Ft4 drops and Ft3 drops…..demonstrates you are likely to need T3

But as your TSH been suppressed with Graves’ disease it may never move

And you have Homozygous Dio2?

What are most recent vitamin D, folate, ferritin and B12 levels

What vitamin supplements are you taking

[shambles in reply to SlowDragon]

Vitamins are all good. Low folate which I monitor and take a good folate with some b complex. Ferritin 220, so high. Vitamin d is just 50 now but haven't supplemented for a while after kidney stones. Mt Di102 is OK but I have both DI101 genes.

My TSH will come up marginally as I've tried to reduce in my own before to see if I felt better but my T4 and T3 reduced.

I have play her tune to get get the T3. She was stern and adamant. Slightly irritated by my folder of information gesturing twice to say I didn't need to being all of it to get T3 prescribed. I let her talk because I felt she wanted to push me back on any knowledge I may have had. When I said I had been refused T3 in the past again she was slightly irritated.

She also said twice that T3 would be a trail. So that means I take it and TSH will be suppressed again, then we are back at square one again and they'll withdraw it.

But I still have to give her points for saying they treat by how you feel .

[pennyannie]

Thanks for the feedback -

Guessing there was no acknowledgement of Graves abs on a TSH :

Rhetorical question really -

Have you tried standing on your head in the corner facing north by north west ?

Okey doke - good luck :

[shambles]

I despair!

[pennyannie in reply to shambles]

No - don't do that - I just think if there is help and understanding there it should have happened yesterday with you coming away with small dose prescription of T3 and a reduced dose prescription for T4 :

Just that I've been there before and kept waiting around for some 9 months thinking I was being assessed - believing in various excuses only to be told in the end that they had lost my case notes -

It was just all so unprofessional - as if the answer was going to be no from the very beginning - just face up and say so - leaving people hanging is just another bad experience eroding any respect you thought you might have left :

I spoke with the endo secretary several times - even on first name terms and where she went on her holidays etc and why no one had contacted me - but the answer was still a No: