Help! My endo wants to cut back my T3!

[HilaryWB]

I have no natural thyroid as it was destroyed 40+ years ago after I went Hyperthyroid afyer my second child was born and diagnosed with Hashimotos and put onto Levothyroxine .I I can say is that those years were dreadful, my GPs kept changing the dose, I was exhausted all the time, so they upped the dose to what I now know was far too high a dose of Levo, which gave me osteoporosis, then when I became jittery and weepy, with palpitations they told be I had anxiety/depression, put me on antidepressants (!!)then they took the Levo down. ..in the end it cost me my marraige

However I persevered, researched, and FINALLY after thos 40+ years I saw an NHS Endocrinologist. H When I gave him my history he told me that I possibly had a faulty genetic component in addition to having no thyroid function at allas it was destroyed with Radioactive Iodine when I was in my late 20's as all my family have Thyroid issues.

So he put me onto 75 mcg Levo and 10mg...... it took a while, but now I have my life back. However when I sae my Endocrinologist's registrar recently he wants to reduce my T3 as my TSH is "undetectable" and was telling me that it coud cause cardiac issues because of my age (74!)He told me I was likely to feel much worse when the T3 was lowered.I at the moment have no adverse symptoms, my weight is stable, back to what it should be, my brain fog gone, skin healthy, exhaustion has gone...even my eyebrows have grown back, gut issues gone, sleeping well, and have never felt better in my life.

Can anyone explain why the Registrar wants to reduce my T3 when I feel very well? I have had ECGs done, and to my knowledge do not have any Cardiac issues, but the Registrar seemed to be panicking that because of my age and since my TSH was undetectable the T3 must be cut back.Is this right?I have researched this and read in Paul Robinson's book "Recovering with T3" ( and also his other book on the management of Thyroid problems ) that it isn't really a problem when people are on T3 and that the cardiac connection with that has not actually been proven.

I just don't want my T3 lifeline reduced (and being warned I would then feel worse ! )when I have never felt better in my life. Surely I am the best judge of how I feel, and as they say, "if it isn't broken, why try to fix it?

So sorry for this long rant, just hope someone can help please, thank you

[greygoose]

Because they don't care how you feel, they're only interested in the TSH numbers, because they don't know any better. Their education in thyroid, and hormones in general, is very limited, and they are terrified of them. Especially a low TSH. They don't know what it is, what it does nor - more importantly - what it doesn't do. They have seen that people with Graves', which means they have very high FT3, and therefore suppressed TSH, have cardiac problems, and have somehow come to the conclusion that it was the low TSH that causes the cardiac problems. But it isn't. It's the high FT3 levels with Graves' that do the damage. But they can't seem to understand that a suppressed TSH due to exogenous T3 when hypo, is not the same thing as a suppressed TSH due very high levels of FT3 with Graves'.

Taking T3 suppresses TSH. That is a fact of life, and it's really time they got used to it.

BTW, my TSH has been zero for many, many years, and now I'm 79, and god help any jumped-up endo that tries to reduce my T3!

[Sparklingsunshine]

Sadly modern doctors are just obsessed with blood tests, ranges and TSH, any concern about symptoms, quality of life etc has gone out of the window, and yet ironically they still dole out antidepressants based purely on symptoms and the patient's subjective assessment of how they feel.

I'm sorry to say but it appears more about covering their arses against censure from colleagues and the powers that be because of your suppressed TSH, than any desire to make us well. Thyroid 101 is that T3 suppresses TSH in many cases. Why dont doctors know this?

[tattybogle]

Lots of reading material on the subject of Low TSH / Risk vs Quality of Life , in these two posts , useful ammunition for 'discussions' with endo/ GP :

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

[jimh111]

Your dose equates to 105 mcg levothyroxine which is not a lot. When TSH has been suppressed for some time it can fail to recover, this happens quite frequently after Graves'. So, your TSH may not be suppressed it may be that the thyrotroph is not secreting as much TSH as it should.Thyroid UK are looking for examples like yours for stories like yours tinyurl.com/tuksharestory so it's worth sharing it.

[TaraJR in reply to jimh111]

jimh111 do you know of any papers regarding a suppressed TSH failing to recover, particularly after Graves? I'm sure this affects a lot of people, but we need 'evidence' to back it up with doctors

[jimh111 in reply to TaraJR]

I have to go out now but if you Google "graves tsh recovery" you will see a handful of relevant studies. Some of them state TSH should not be relied upon.

[pennyannie in reply to TaraJR]

As I understand things in laymans terms -

Graves TSI antibodies - stimulate the TSH thyroid receptors - and these antibodies get stuck on the follicles and push down on the TSH receptor site - and mimic TSH readings -

there is no way of controlling or removing them - but once the thyroid is destroyed they have no effect as the engine isn't there any longer to rev up !!

To quote Elaine Moore - in Graves disease - thyroid function falls under immune system control rather than hypothalamic regulation. elaine-moore.com

I need my TSH to be @ 0.01 - if I'm to be well - whether on T4 monotherapy or any other treatment option - with Free T3 and Free T4 in the ranges :

but in primary care with the over reliance on just a TSH blood tests -

and not even accepting of, or understanding how to read a Private Blood test for Free T3 and Free T4 results -

it seems we continue to follow blindly until we become so ill - we end up asking strangers on a thyroid forum - who do in fact listen and save us from this stupidity. and ultimately end up having to self medicate

Never seen any medical ' evidence ' regarding a TSH in Graves - post medical intervention.

[jimh111 in reply to pennyannie]

The pituitary has receptors for these antibodies, so although there is no thyroid to stimulate the antibodies hit the pituitary and suppress TSH doi.org/10.1210/jcem.86.10.... .

[pennyannie in reply to jimh111]

Thank you - so am I right in thinking this is with rats with thyroids - after AT medication and not post RAI/ thyroidectomy ?

Sorry - but it's all a bit wordy for me today - and I need to go straight to a conclusion -which I don't think is there ?

[jimh111 in reply to pennyannie]

Yes, this was an experiment to reveal the paracrine mechanism. I mentioned it to show that TRAb still have effects after the thyroid has gone. These antibodies can also cause Graves' eye disease and possibly stimulate T4 to T3 conversion.I wouldn't use this as an argument for maintaining your T3 dose because there are other reasons why TSH may not recover after it has been suppressed.

[pennyannie in reply to jimh111]

Thank you so much -

so no research after invasive treatment and just left in no man's land.

Yes - and with Graves it can wax and wane throughout one's life but with the main target of the AI attack removed just seen as ' a nothing ' and of no consequence.

[jimh111 in reply to pennyannie]

There are studies that look at the time to TSH recovering after thyroidectomy for Graves'.

[pennyannie]

Hello Hilary :

Why after all this time and now stable and actually having some peace of mind and relatively well - would any doctor concerned for his patient 's health - suggest reducing their dose -

Just because s/he has to justify their existence, likes the sound of their own voice and has the power to do so.

You have been through so much upset, drank the toxic RAI - burnt out your thyroid in situ and likely left on inadequate thyroid hormone replacement and had to push through as best you could - as doctors have very little knowledge of thyroid and hide behind computer comments and guidelines that are not fit for purpose.

I'm with Graves post RAI thyroid ablation 2005 and became seriously more unwell some 8 years later and after being referred to as a conundrum jumped ship and now self medicate and am much improved staying away from the NHS these past 6 years and looking after myself.

My TSH is below the reference range and my T3 and T4 in range and I'll not be reducing my dose because of a TSH that has no bearing on anything when hypothyroid and taking thyroid hormone replacement- especially when there is no natural thyroid function it's madness.

The TSH relies on the the Hypothalamus - Pituitary - Thyroid feedback loop working well -

but since there has been a medical intervention and RAI treatment - this HPT axis - is now broken - as there is no Thyroid there to complete this circuit feedback loop.

A TSH is a totally unreliable measure of anything once taking any form of thyroid hormone replacement and why we must be dosed ad monitored on our Free T3 and Free T4 readings -

we are not quick fixes nor just TSH readings.

ncbi.nlm.nih.gov/pubmed/306... -

and I'm sure there is more to come as the years go by - though I met no one in mainstream medical who would openly admit anything untoward in this so called RAI ' therapy ' treatment.

elaine-moore.com

[gabkad]

Patient's rights: if they can't show any adversity from your current dose, you do not have to agree to any change. That is your right to say "I do not agree to any change in my current dose." Doctors can't just willy nilly change things without patient input. Informed consent/informed refusal.