How to persuade TSH-obsessed Endo I'm not over-replaced (on T3-only)?

[lolapops1978]

Hello, I am posting because I'm hoping for some advice for an Endo meeting on Tuesday. There is a possibility that the NHS Endocrinology team at my local hospital might just be contemplating 'widening' their approach to T3 (historically for me, a violent slam in the face 'NO! Get off T3 immediately or you will die', etc).

After a five year gap, I approached them again last month about T3 as I've been having some difficulty with my private supply, the NHS price has come down 60-70% since my last attempt, and the updated NICE guidelines from May 23 seem to be worded less ambiguously in favour of trying T3 for patients unresponsive to T4 alone. As usual I told my story, waved the guidelines around, and got the usual 'we don't prescribe T3' response. HOWEVER, 6 hours later the endo phoned me to say that my visit had 'sparked a department-wide discussion on our current approach to T3', that 'the point was made that more and more people like you are going to be coming in waving these updated guidelines', and 'give us a few weeks to discuss this and get back to you", but "I warn you, they won't be comfortable prescribing T3 on it's own / at such high doses / while your TSH is so suppressed'. I've now been called to a consultant meeting on Tuesday, and am preparing myself to defend T3 only / my 'high' dose / and my 'dangerously low' TSH.

Thanks to advice from this brilliant forum I have successfully gotten my health and life back in spite of lack of NHS support, through 8 years of careful self guided experimentation with different doses/brands of levo, levo +t3, and T3 only. The latter is the only thing that works for me (I felt awful until I ditched the levo), and I've been on self-funded daily 50mcg T3-only for 3 years: fit, healthy and (joy!) symptom free. My unapproving GP does at least do all the blood tests I ask for.

My T3 is always within range (usually around 60-75% of range), T4 negligible, and TSH suppressed (0.05-0.08). I supplement with iron, B12 , vitamin D and selenium. My BP is low, my resting heart rate is low 60 bpm. I did struggle with a 19kg weight gain because of insulin resistance, but ditching the gluten and refined carbs solved that and I'm now a healthy weight. I have no AF, palpitations, anxiety etc, have never broken a bone (and am having a DEXA scan next week), I regularly swim, run, climb, do yoga and can actually keep up with my 6 and 8 year old kids at the park. I am 45. In short I feel better than I have since my 20s, and have no clinical signs whatsoever of over-replacement.

The endo team already know all of this, but they keep on going back to the suppressed TSH and insisting that it always means I'm over-replaced, irrespective of my T3 being in range! What more can I do to prove I am not over-replaced, and that forcing me onto T4 / lowering my T3 will make me massively unwell again? Would this not be against the Hippocratic oath to do no harm?

My best hope at the moment is quoting the guidelines which state T3 monotherapy is acceptable only in exceptional circumstances, such as "proven allergy or intolerance to levothyroxine" as confirmed by a consultant, or proven inability to convert. Until I stopped the levo I was so shattered I was receiving NHS Chronic Fatigue Syndrome Therapy and was actually under the care of an NHS Neurologist with brain MRIs etc because my brain fog, memory, balance and co-ordination were so dreadful I kept falling and bruising myself and failed their basic function tests. All that stopped as soon as I came off levo, and my mood lifted massively too, and I have been well ever since. Is this enough to qualify for 'proven intolerance' even if it's not an allergy? And can my previous high T4 with low-T3 results on levo be considered evidence that I do not convert well? I feel I have a chance here with a (historically) T3-adverse Endo team but need ammo.

Any thoughts much appreciated as always, thanks for reading x

[TiggerMe Ambassador]

I'm not T3 only but when my NHS Endo starts on about low TSH (0.05) I request that we look at actual thyroid hormone levels as I have not had any tests done on my pituitary function... so far I have been able to keep my prescription for the last 15 months even when the GP insists on a reduction the Endo just says " though it would be desirable she accepts that the patient may disagree"

I'm like you in that I feel the best I have since starting on this journey 6 years ago and all my stats are good

Hopefully if they had a proper discussion they also realized the utter nonsense treatment based on TSH is 🙏🤗

Well done for getting this far 🎖️

[HealthStarDust]

May I ask which NICE guidelines from May 23 you are referring too?

Good luck. It seems like a step in the right direction.

[TaraJR in reply to HealthStarDust]

The BTA/SfE consensus statement on T3 was written in May 2023.

The NHSE guidance was issued in August 2023

The NICE thyroid guideline was published in November 2019

[Star13]

I went through similar with my local Hospital who had a TSH driven Endo. My difference was they were prescribing my T3 but kept threatening to stop unless I reduced my dose. In the end I just refused point blank as I said she was making me ill. She agreed to a “higher” opinion, which was sending to a London Hospital. I don’t know where you are based but are you under a health authority where there is a large regional hospital? If so would it help if you think the meeting is starting to go backwards to ask for this higher opinion? They must have links to specialists who give opinions to them?

I’ve found they are normally more open, probably because they see more complex cases and know that TSH is not the be all, also they don’t do the prescribing. At least it gives you something up your sleeve you could pull out if all else fails that might keep the door still open. In my case it led to my GP taking over prescribing.

[pennyannie]

Lolapops - no advice as I stay away and self medicate NDT and now much improved from how the NHS would have me -

but well done on your management of your own health and well being - if they bother to check your medical records it should be self evident.

Good luck - though it shouldn't be down to this :

[Fluffysheep]

My NHS endo is very twitchy about this as well, he hates that my TSH is under range, and won't listen to me when I tell him it's basically down to my T3 medication (monotherapy).

In spite of that, I've managed to get him to prescribe T3, and go up to 60mcg a day. However, I had my check up in January, and asked him to up my prescription to 80mcg a day, as that's what I'm actually taking.

The poor bloke nearly had a heart attack, point blank refused, and went through all the things we usually hear from endo/gp - you're going to give yourself atrial fibrillation, osteoperosis, it's too much, it only has a half life of an hour, etc etc.

Every time I tried to speak he cut me off, although I did manage to get him to agree to refer me for a Dexa scan to check for any potential problems.

I'm still waiting for my letter to come from the clinic, and hoping it's not too awful. To be completely fair to him, we do usually disagree at every single appointment, but his letters to the GP don't mention this at all and are actually very supportive. So I'm hoping the letter will say to keep my prescription at 60mcg, and I'll just keep topping it up with an extra 20mcg.

[SlowDragon Ambassador]

you write very eloquently

Suggest you give endocrinologist something similar as a detailed outline of your thyroid journey

Do you wear a fitness watch ideally with ECG recording ability

Keep good digital records of resting heart rate

Activity levels etc

Plus vitamin results too

[Pippah45]

Well done you for helping them to open their eyes!

[lolapops1978]

Many thanks to everyone for your helpful replies. Sadly it was in vain, the Endo meeting was brutal. Every conversation went back to "suppressed TSH is completely unacceptable in every situation bar life-threatening cancer" because of the "proven dangers". I did of course counter with much evidence, and argued shouldn't my future be my choice, if I accept the (unproven, hypothetical) risks, but she didn't care. She didn't care what the guidelines or research said or what my individual case is, because as she kept reminding me, ultimately she has the final veto as "the endocrinologist may refuse to prescribe T3 if they are not comfortable". Which is of course true, but should not not be used an an excuse to justify ignoring all evidence of clinical need. Which is exactly what she did.

@slowdragon I did as you suggested and wrote an outline of my thyroid journey, I tried to show her my months of Fitbit data proving low heart rate etc, but she refused to look at any of it. She wouldn't even look at my DEXA scan results from the day before (which the radiologist kindly let me photograph) proving my bones are in good health. She stated unequivocally that "there is nothing whatsoever I could show her that would ever make her agree to a suppressed TSH, or agree to T3-only".

With total dismissal of my intolerance to levo, the only option she would give me is combination therapy of 10mcg Lio + levo and was very clear that no matter how I responded "10mcg is the maximum dose of T3 I ever permit, under any circumstances'. This is 80% less T3 than the 50mcg I currently take, and is the only thing I feel well on. I brought up the well (NHS) documented Chronic Fatigue Syndrome therapy and Neurological Function problems I had while on combination therapy, she said she has "no evidence of that" because I wasn't under her care at that time.

I asked what about people who are allergic to levothroxine, she said she'd never encountered anyone with a 'genuine' allergy to levo. Eventually she booted me out saying I had already made her late for her next appointment (I was in there less than 20 minutes). I've read enough on this forum to know that this kind of endo response is far from unique, but the sheer brutality of it has left me quite upset. I have never met a doctor quite so heartlessly and openly disinterested in whether I'm well or not. As the daughter of two NHS doctors (cousins, aunts and uncles too), I feel angered that UK doctors can still get away with abusing their positions of power to ignore national guidelines. I don't have the energy to complain.

I suppose it's a step up from their previous 'no T3 ever!' approach, but it doesn't help me as I won't make myself ill again on levo. At least I gave it another shot. Rant over. And breathe.