Possible NHS trial of t3 - advice please?

[malohant]

Hello lovely people

Could I possibly ask for some advice please?

I've been having a bit of a drama with my medication and treatment from an NHS endo.

My latest blood test results are

TSH 0.04 (0.27-4.2)

FT4 23.1 (12-22)

FT3 4.7 (3.1-6.8)

I moved to west Wales last spring. Until last summer I was on 125mcg levo, my previous endocrinologist wanted to reduce my dose but I convinced him to postpone it until after we moved. The new endo reduced it to 112.5 in June as my test results then were TSH <0.01 / FT4 23.6 / FT3 6

He asked for bloods again in September (TSH 0.052 / FT4 19.5 / FT3 5.1) and November (don't have results to hand). In November he sent a letter to my GP (but not to me, I only just found out about this) reducing my dose by a further 25g. Somehow this didn't affect my prescription until I went to pick it up last week, when it had been reduced to 100mcg daily (I don't know why it was reduced only 12.5 instead of 25). I was rather upset - when I saw the endo in June I said I was unhappy about my dose being reduced and when he said he might reduce it further I said I would definitely want to challenge that. So it feels like he did it behind my back to avoid that.

I called his secretary to all to speak to him and today received a call from him. It turns out he doesn't send these letters to patients but has promised to send any changes to me in the future. It also turns out he was about to reduce my dose again (despite me not having even started the previous reduction! How he thought he could justify that I don't know) but that has now been cancelled.

He said he was reducing my dose because long term low TSH slightly increases the risk for developing atrial fibrillation. I asked how he justified not treating my current symptoms on the basis of a possible slight increase in risk of something in the future and he waffled something woolly back at me to justify it (he has to take into account longer term possibilities of different medications blah blah blah)

He did however say there was a possibility of getting T3 on the NHS, which we will talk about at our next in person appointment in April.

Am I right in thinking my TSH is going to stay suppressed if I start T4/T3 combo therapy?

Are there any research papers which I can use to back up my position which contrast with his position on TSH?

Any advice very much welcome

Thanking you in advance, really appreciated

M x

Ps I am weighing up a complaint about the endocrinologist/hospital procedures of not keeping me informed about my own treatment, but slightly conflicted by not wanting to jeopardise a possible trail of t3.

[TiggerMe Ambassador]

Hmmm.... interesting... so he is a TSH in range chaser but suggesting T3 which as you say will very likely drop your TSH to 0.05 and it may never come back up!

I have an agreement with my NHS Endo with whom I had the same conversation/ threats about low TSH...blah,blah,blah nonsense and we came to an agreement that I am happy to accept the 'perceived' risks of low TSH for the benefits of having in range fT3 & 4 with which I have regained my health... so far so good just over 1 year on!

I would suggest before accepting the trial you get him to agree that he will then treat you based on your free levels and NOT TSH

[malohant in reply to TiggerMe]

Hi TiggerMe thanks for your reply - yes that's exactly what I was hoping for, but I wondered if there was anything I could use to bolster my argument!

To be fair he didn't suggest T3, I asked 🙄

[TiggerMe Ambassador in reply to malohant]

healthunlocked.com/thyroidu....

Good old tattybogle

[Mrst1982]

bit.ly/3NH0pGw

[jimh111]

This is all wrong. I hope to put up a post on this subject sometime but here's a brief summary.

In "Liothyronine - advice for prescribers" england.nhs.uk/long-read/li... it states: -

"In all cases, the patient and the prescriber should take a shared decision-making approach to reach a decision about the most appropriate treatment for the patient, taking into account the patient’s values and preferences."

Click on the link to shared decision-making in this quote and go to the Decision making and consent section. It states: -

"Shared decision making and consent are fundamental to good medical practice." This means it is part of the GMC rules doctors must follow.

The next section Shared decision making to comply... references "The Montgomery Judgement" which states: -

" Whether a risk is material is no longer determined according to the views of a “responsible body of medical men” but by the views of “a reasonable person in the patient’s position”. "

Note: this carries the force of law, it is not an advisory document.

NICE guidance nice.org.uk/guidance/ng197/... section 1.2.20 states: -

"When writing clinical letters after a discussion, write them to the patient rather than to their healthcare professional, in line with Academy of Medical Royal Colleges' guidance on writing outpatient clinic letters to patients. Send a copy of the letter to the patient (unless they say they do not want a copy) and to the relevant healthcare professional."

Your doctor needs to catch up with the times.

(Edited: A doctor takes responsibility for prescribing so they are not obliged to prescribe if they feel it is inappropriate).

[SarahJane1471 in reply to jimh111]

Definitely need a post on this jimh111 👏👏👏

[Sparklingsunshine]

I dont know if anyone else feels thesame as I do, that thyroid patients seem to be singled out for "long term possible side effects in the future".

Virtually every medication from humble paracetomol right through to strong Chemotherapy drugs can have detrimental long term side effects. Doesnt stop them being prescribed however. And many people are on multiple drugs with numerous side effects and interactions with each other.

Whenever I've seen a GP and been prescribed something new I've never had a lecture warning me of long term risks. I always read the PIL in the box myself before deciding on whether to take it.

So why is it thyroid patients seem to get the short straw and end up with BS from Endos and GP's alike about bone density and atrial fibrilation risks when arguing about dose decreases or when trying to get T3? Its enough to make you paranoid 😬

[DippyDame]

Have you had thyroid antibodies TPO and Tg tested....raised levels indicate thyroid autoimmune disease/ Hashimoto's. A positive result can cause hormone levels to fluctuate. A gluten free diet usually helps.

Does this endo realise that your T4 to T3 conversion is poor ( high FT4 with low FT3) and that while he is reducing your Levo dose this may be reducing your FT3 level

For good health nearly every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.

He is supposed to discuss any dose changes with you before altering your prescription

It is essential to optimise vit D, vit B12, folate and ferritin to support thyroid function/ conversion.

The endo's fixation on TSH is not helpful, after diagnosis ( with high TSH/ low free hormone levels, a TSH level fluctuates and is therefore unreliable.

TSH is a pituitary hormone...not a thyroid hormone

The important results are FT3 followed by FT4

This should help..

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

thyroidpatients.ca/2021/07/...

Once T3 medication is initiated both FT4 and TSH levels will fall.

. I asked how he justified not treating my current symptoms on the basis of a possible slight increase in risk of something in the future and he waffled something woolly back at me to justify it (he has to take into account longer term possibilities of different medications blah blah blah)

Frankly this endo is flying by the seat of his pants and is most likely a diabetes, not a thyroid, specialist

You need to optimise essential nutrients and add a little T3 (say 2.5mcg initially) to the 100mcg levo

Test again after 6/8 weeks, the results should point the way forward

Post them, including ref ranges if you wish advice