As the British Thyroid Foundation has been mentioned several times recently, I went for one of my occasional visits to see what has changed. Not a lot!
But I did notice that the current issue of The Endocrinologist is a special thyroid issues.
Yes, I read that Unsurprisingly, Vanderpump is arguing to adherence to the guidelines of prescribing T3 where warranted. It very much seems that it is this part that CCGs sending out (premature) letters of intention to de-fund T3 seem to be overlooking!
It's still too woolly, it talks about a trial of combination therapy but who decides who gets a trial. What if a patient wants a trial but Endo doesn't? Who decides? Where is real patient choice? Also, getting a referal to an Endo can be difficult in the first place. It's still all too difficult. I don't see why 60 years of age has to be a cut off for T3 either. If you need it, it doesn't alter just because you've had a birthday does it!? What about all the 60 year olds who's thyroids natually pump out T3, who's going to put the stoppers on that??
Especially annoying because it is a disease that is more common in women as they get older or as in my case, isn't actually diagnosed until you are in your 50's and a stones throw from deaths door, after decades of suffering, then you might get less than 10 years to wring T3 out of them just to have it taken away. I never even managed that but was left to rot feeling dreadful on Levothyroxine. What option is there but to self medicate with the fiasco that is thyroid medicine? It is a disgrace.
I thought of you when I read this on the BTF site:
Research Award Application
About the BTF
The British Thyroid Foundation (BTF) was set up in 1991 and is dedicated to helping people with thyroid conditions. Our aims are to:
provide support for people with thyroid disorders and for their families
provide information to people with thyroid disorders and to the medical profession
establish regional support groups
raise funds for research
About the research award
The BTF offers an annual award to support a one-year research project into thyroid function or thyroid disorders. This year’s award is up to £20,000 and has been funded by a legacy. It will be known as The BTF Doris Godfrey Research Award.
In view of the more restricted nature of this year’s award, if applicants are uncertain of the suitability of their proposal, they may submit a 150-word overview of their proposal for informal feedback from the BTF prior to submission of a full application, by contacting us at research-award@btf-thyroid.org
(I very much realise that the conditions would appear to preclude you/your team. But I couldn't help chortling at the mere thought of the BTF helping to pay for the research effort which brings their existing treatment paradigm crashing down. )
diogenes fat lot of good that is as far as I'm concerned if they won't give T3 to anyone over 60 - it is ridiculous, as if your body suddenly transmutes into not needing T3 when you reach a certain numeric age. 3 decades of suffering undiagnosed then the horrors of levothyroxine monotherapy with a nice final slap in the face like that. It is a meaningless reassessment for many of us if 60 is going to be T3 cut off. But it is ok to steal our pension money and force us to work till 67 or 68 (claiming we had equality when it was still legal to pay men more that women for the same work) feeling dreadfully ill due to inadequate thyroid hormone replacement therapy. I call it injustice
Well said TSH110 when did we ever get paid an equal wage and now they want to remove the tiny little hope of recovery to help us creep or creak toward that ever more distant pensionable age. Why don't they just slap us in the face to boot???
I had the misfortune to have an appointment with the writer of the article, I would add I only saw him once, I had a lecture on adjusting to being chronically ill and being a menopausal women - I should accept this was it.
There was me thinking it was the medical professions job to restore health where they could, not encourage acceptance.
I have since found an enlightened endocrinologist who found I have a double mutation of DIO2, prescribed T3 and I am on the road to recovery - such a contrast.
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Appointments to see an endocrinologist
Thyroid from under active to overactive
My visit to the Endocrinologist
