Has anyone any suggestions about the best way to 'prove' there is a clinical reason to try T3 treatment.

[flamingjune]

GP wants to be able to justify expense. I was ok on 200mcg t4 and annual test came back 'over medicated'. I reduced to 175mcg and da -da 6 weeks later felt worse and had virus then 7 weeks before ok-ish again. Long history p. thyroidectomy at 17 and my 20's spent either ill and dreading going to GP yet again OR trying to get on with my life and all the other things involved with LIVING. now 47 so thinking 30 years might be enough and want to address this. Also considering D102 gene test. He said come back when you are feeling unwell and we will run a full range of tests...? Do thyriod antibodies only show up when acutly ill? He seems skeptical but reasonable... I have cetainly met worse over the years.

[puncturedbicycle]

Any chance you're having trouble converting (high t4, low t3)? That's a simple way to justify it. Or when they use it to suppress tsh in certain cases of thyroid cancer.

In my experience, antibodies, if you have them, seem to have their own rules and can be high when you feel well and low when you don't.

Really, if gp wants to say 'there is no evidence' as mine did, then I suspect they won't want to go to the expense to test you if they don't recognise your symptom relief as a good enough reason to prescribe, which is why so many people self-medicate.

[flamingjune in reply to puncturedbicycle]

The whole anti body thing made me cross - Surely they would have tested me at aged 16.. I researched what I could at the time and and my memory has never been THAT bad. Recently, T3 was middle range at 200mcg thyroxine and on low border line after reduction... The Gp is however willing to suggest 'mystery' possibilities but a bit elusive about what they might be.. For a real rant - my surgery only has an 0845 number and I only have a mobile - if and when I afford the expense of calling for an appointment it is a triage system first I have to explain to the receptionist why i would like to see a doctor. Its very hard not to use sarcasm in all its subtle and wonderful forms to respond.

[Aurealis]

Its a hypothesis that can be tested by GP prescribing T3 - they do this all the time, if you don't feel better with T3, then you don't need it - just be careful that you try a high enough dose to properly test the hypothesis. You could point out how many appointments you're using up!

[puncturedbicycle in reply to Aurealis]

My gp would call that the placebo effect.

[Aurealis in reply to puncturedbicycle]

So does mine! But a lot of medicine is a placebo effect.

[flamingjune in reply to Aurealis]

Steven Fry on the placebo effect ' When 1 sugar pill works well, 2 work better'. Thank you for replies - I didnt see response for a while, I was expecting it to show up in the 'my activity' bit

[shaws Administrator]

This is a link and in it Dr Lowe explains that for some taking T4 or T4/T3 and keeping medicating according to the TSH 'within the normal range' keeps many unwell or develop other more serious diseases. It is from Thyroidscience and these are two excerpts:-

1.

Thyroid hormone treatments other than replace-

ment therapies are in widespread use among hypothyroid patients—mainly those who previously failed to benefit, or benefit enough, from T4 replacement. The therapies are in widespread use for one reason: they work for hypothyroid patients after replacement therapies failed them.

The most effective of these therapies involves

adjusting patients’ dosages of combined T4 /T3 or T4 alone according to several indices other than TSH and thyroid hormone levels. Those indices are signs, symptoms, and various objective measures of tissue response to particular dosages. When patients’ dosages are titrated according to these indices, dosages

that prove safe and effective are typically TSH suppressive.

2.In the studies at issue, endocrinologists used thyroid function test results as the exclusive criteria by which to titrate patients’ thyroid hormone dosages.

Despite denials, this is precisely the method used

by endocrinologists at large to titrate patients’ dos-

ages. This method (which I termed “extremist medical technocracy” inThe Metabolic of Treatment Fibromyalgia) varies from that of the clinician using the protocol I describe here. This clinician uses thyroid function test results as an aid to clinical judgment—an aid that is integrated with other aids, such as objective measures of tissue response to thyroid hormone. Thyroid function test results help this clinician form an opinion as to the patient’s pre-treatment

thyroid status. After he establishes the patient’s thyroid status, however, he seldom uses thyroid function test results to reach treatment decisions. His reason for not using them to titrate dosage is that most of his patients have previously failed to benefit from T4 or T3 /T4 -replacement therapies, in which, of course, physicians adjusted dosages according to the patients’ TSH and/or thyroid hormone levels. Only by this clinician not using the replacement method for titrating

dosage are most of these patients able to recover from their symptoms, signs, and objective measures of tissue hypometabolism.

The fact that so many patients have recovered

from their symptoms, signs, and tissue abnormalities

with this alternative to replacement therapies compels a proposition: T4 -replacement therapy previously impeded these patients from recovering their health.

web.archive.org/web/2012081...

[shaws Administrator]

The fact that your GP adjusted your dose from 200mcg down according to your TSH, you now feel unwell. Read second question down (as well as the first question):-

web.archive.org/web/2010103...

An excerpt from Dr Toft who was President of the BTA which shows that no-one in that sphere of medicine takes notice of very important statements. This was to the British Endocrine Societies Joint Meeting 2002

Harrogate, UK 08 April 2002 - 11 April 2002:-

However, a significant minority of patients only achieve the desired sense of well-being if serum TSH is suppressed. Furthermore, patients rendered hypothyroid following treatment of thyrotoxicosis and taking a dose of T4 which maintains a normal TSH, gain more weight than those who do not become hypothyroid. Studies in hypothyroid rats suggest that it is only possible to restore universal tissue euthyroidism using a combination of T3and T4. In patients in whom long-term T4 therapy was substituted by the equivalent combination of T3 and T4 scored better in a variety of neuropsychological tests. It would appear that the treatment of hypothyroidism is about to come full circle.

thyroiduk.org.uk/tuk/resear...

We haven't yet, 12 years later reached 'Full Circle'.

[humanbean]

This doesn't strictly answer your question, but it is worth mentioning to your GP. If he is prepared to prescribe on a Named Patient basis then liothyronine (T3) can be prescribed substantially cheaper than the NHS-approved version of the drug.

I don't know the details, but I've read about people getting prescribed T3 from a French pharmaceutical company that works well and saves your GP's budget a lot of money.

[puncturedbicycle in reply to humanbean]

Wow, this is crazy. Why don't we all know about this? It could make getting a t3 script much easier. Honestly, the bureaucracy makes my heart sink.

Great suggestion.

[Aurealis in reply to humanbean]

Excellent, can anyone send me more details about this, in case I need it please

[humanbean in reply to humanbean]

I found this thread in which nobodysdriving goes into some detail about how this is done and what the cost was about a year ago :

healthunlocked.com/thyroidu...

[Aurealis in reply to humanbean]

Thanks hb

[flamingjune]

Thank you so much for your replies. Had to walk away from computer twice over last two days because of brain overload. I have Dr Peatfields book and was origially treated by him in 90's. I now need to research and learn all over again because i'm not willing to accept treatment that is dissmissive and patronising. I have lots of quotes from GP's my favourite because it sums it up is ' these things often have no resolution'. My tests in December were : FreeT4 - 27, Free T3 4.2 and TSH 0.03 feeling very well. After reduction T4 - 17.5 T3 - 3.4 and TSH 1.05. The gene test may not help - being new (jiscmail.ac.uk/cgi-bin/weba... but family on both sides with various thyroid treatments including sister on T3. I'm off to read your very kind replies and follow links. I need to understand what tests to ask for - ie reverse T3?

[mickstability]

There's some anecdotal evidence that suggests if you're taking T4 only for life support, it may become less well converted after 15 years or so. If you could get the test, high rT3 may confirm this, otherwise I don't see how else you could prove it clinically. Switching from T4 to T3 is a fairly long drawn-out affair, with quite a few switchbacks in my experience, until, as Aurealis says, you reach the sunny uplands of adequate T3 dosage. If you've had a TT, any measurable TSH would indicate that you're undermedicated, I think, otherwise why would the pituitary be calling for thyroxine?

[flamingjune in reply to mickstability]

I had partial thyroidectomy. It was one of the MANY questions thrown up as I've been reading. I have seen people saying they have had or are about to have total thyroidectomy. My own thyroid 'worked' for 13 years afterwards in that my tests came back within limits while I sat on the stairs crying because I coulndnt physically climb back up to my flat after taking my son to school. About to research reverse T3 and need to understand reactive arthritis and graves for my mother who is quite unwell. I am also taking ibroprofren for aches in arms and legs and need to check this is ok on a daily basis. Thankyou for the info about reduced convertion after time. Will add it to my list. Got to get sugared up small child to calm down and go to sleep but thanks again everyone for your time.