Current Research Re Thyroid Disease: .......is... - Thyroid UK

Thyroid UK

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Current Research Re Thyroid Disease

15 Replies

.......is stubbornly wed to current dogma that excludes symptoms inconveniently persisting after the ‘cure’ is applied. There are lots of us suffering. I wonder, is there a will within our community to crowdfund some research of our own? We may have members who could do this - or know someone who can?

15 Replies

I doubt that any amount of research could alter the status quo as the result would just bounce of the thick heads of those who could make changes and the public would scarcely notice.

What is needed is publicity and that is free if anybody knows how to get the journalists interested, which is perhaps not as easy as it may sound.

Anybody know a journalist on a national newspaper who has Hashimoto disease?

shaws profile image
shawsAdministrator

Thyroiduk.org.uk is behind Healthunlocked and has been trying its hardest to change attitudes towards us who're hypothyroid or have other problems with their thyroid gland.

They, along with some other support groups, have seen The Lords about the withdrawal of T3 - without notice - to patients who had benefited with it.

You can become a member if you wish - as the 'more the merrier' i.e. the stronger we can become and maybe even get a change in attitudes by the medical professionals.

thyroiduk.org/

in reply toshaws

Thanks Shaws I will do that-it all helps

Hennerton profile image
Hennerton

I should be very happy to contribute. I am so tired of reading studies that miss the point entirely but a plea from me is do not overlook thyroidectomy patients. We are usually completely forgotten, when frankly we are the ones least likely to manage on “ the little white pill of Levothyroxine”.

Marymary7 profile image
Marymary7 in reply toHennerton

That's very true, but I believe that end stage Hashimotos is also practically like being without a thyroid.

We just need more help and understanding on all of these issues.

My friend accused me of being obsessed with it! It's true😂😂

Hennerton profile image
Hennerton in reply toMarymary7

Yes, I know how you feel and once started on a thyroid rant, it is difficult to stop me. Hanging over me at the moment is an endocrinologist appointment, so that he can decide my T3 fate. I have had it for seven years from my GP but the CCG is now interfering and I imagine he will try to stop it. It feels like a death sentence...

Marymary7 profile image
Marymary7 in reply toHennerton

Poor you, I understand the apprehension. You will be able to source your own hopefully still in the future if they play nasty. I don't understand this discrimination when they continue to spend a bomb on other expensive drugs and why in Gods name don't they manufacture it here, NHS being fleeced good and proper!

Hennerton profile image
Hennerton in reply toMarymary7

More to the point and as I said to my GP, why don’t they source it from Europe? I can buy it in France for 2 to 3 euros but we are now selling the house there, so my source will disappear. I am convinced it is because most MPs have shares in pharmaceutical companies. I found a website listing all of them. Of course they want to the NHS to pay a premium...

Marymary7 profile image
Marymary7 in reply toHennerton

Good point. NHS procurement must be a laughing stock.

in reply toMarymary7

Tell your friend that when s/he suffers from a debilitating medical condition (especially one that does not receive optimum relief because of one kind of discrimination or another) then s/he can criticise. Women are too easily pilloried or viewed as just a ‘winger’ when their condition is invisible - before post natal depression was diagnosed, women were accused of all manner of callous self obsession. You’ve got us to have a moan to anytime🥰

Marymary7 profile image
Marymary7 in reply to

Thanks for that, I'd love to tell her that. Trouble is she is on Thyroxine and finds it fine! Had an op on a lump on her thyroid? Probably can't see the problem that others have. Her doctor lets her vary her dose according to how she feels and she goes up to 150mg or above that dose sometimes.

It doesn't do anything for me and I read so much that the various symptoms pop up and I spout off..... that's the thyroid causing that😂. I'm feeling pretty good on T3 only but still look for optimum vitamins and wellness. 😎Keep well.

shaws profile image
shawsAdministrator in reply toHennerton

I believe thyroidectomy patients should have even better treatment as they've no thyroid gland at all.

Gingernut44 profile image
Gingernut44 in reply toHennerton

Also, don’t forget those of us who have had their thyroid destroyed by RAI 😩

Hennerton profile image
Hennerton

Very true, yet rarely does a study mention it. We are bottom of the heap.

Tinkerbell74 profile image
Tinkerbell74

I’m thinking just stop taking this crap. I’ll die or I won’t. I did not think my lab work was that high. I mean, tsh can go all the way up to 10 and be full blown hypo. Mine was only 5.4. I need a different doctor.

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