I'm looking for an independent hypo, hashimoto, thyroid forum

[trelemorele]

Does anyone know or is a member of an independent thyroid forum without ties to NHS or any other health organization?

Please can you send me a link, advise in PM. UK or any other English speaking country and any social platform.

Thanks, much appreciated

[Cooper27]

This forum isn't tied to the NHS, as far as I'm aware. It is linked to thyroid UK, but mostly just in name! Most of the advice you receive is independent (patient to patient). You can always try posting your question to see if anyone is able to advise!

[Angel_of_the_North]

What's wrong with this one?

[Marz in reply to Angel_of_the_North]

See below ...

[shaws Administrator]

We belong to Thyroiduk.org.uk which was started by Lyn Mynott due to her being so unwell. Most of us are members of Thyroiduk.org.uk as the purpose is to change attitudes of the Professionals and TUK have researchers/doctors who are aware that the NHS's awful guidelines and trying to change attitudes.

Thyroiduk.org.uk is independent and isn't connected to the NHS. Thyroiduk.org.uk are working to change the attitudes of the Endocrinologists and doctors who appear to be the poorest trained Professionals. This forum is on Healthunlocked and the illnesses within HU (as far as I know) isn't connected to any of the Illnesses within it.

You can join Thyroiduk.org.uk who is the NHS's forum for advice/help re dysfunctions of the Thyroid Gland.

thyroiduk.org.uk/tuk/member...

thyroiduk.org.uk/tuk/About_...

TuK also have a list of doctors/endocrinologists (private).

thyroiduk.org.uk/tuk/about_...

I am one who has recovered through TUK's help/advice before the forum began.

Many of our members have also been helped to recover their health or have it much improved.

If you wish to have a private test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies and one of our private labs has a special offer at present:-

thyroiduk.org.uk/index.html

All tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day.

All members have dysfunctions with their thyroid glands

[StitchFairy]

I'm not on Facebook but I'm sure I've seen people mention thyroid forums on there. I'm curious as to why you've asked this question though.

[Marz in reply to StitchFairy]

Could be linked to an earlier post that is no longer there .....

[trelemorele in reply to Marz]

Marz

There’s that but also much more. This forum is definitely better than nothing and has easy access too.

I need REAL peer-to-peer forum free of medics (licenced and otherwise) and home-grown scientists repeating slogans on par with the one spouted by GPs.

I want to learn on peoples experience living with this condition who aren’t afraid to speak up what’s working for them and aren’t shut down by mainstream opinion on the forum.

There will come rare gem on here from time to time; someone comes and shares valuable information – this is often shut down, they go away discouraged and I often feel like I and other in the same position are missing on, valuable experience and life based, information. Hence the need to join a forum [B]without a pressure group on “what we repeat on here is the only correct WAY”[/B] and also without links to any medical organisation - so completely unbiased.

I’ve got a couple now, so thanks to all who contacted me on PM

[helvella Administrator Thyroid UK in reply to trelemorele]

Perhaps you'd care to share which these other forums are?

Seems only fair to let us all know which forums there are which are completely unbiased.

[shaws Administrator in reply to trelemorele]

All of us on this forum do know that "one size doesn't fit all". Nearly everyone varies in their dose or clinical symptoms.

Blood tests only tell us where the 'dot' falls, it doesn't reflect the clinical symptoms people have or can have or the ones they've manage to resolve.

We don't shut down anyone unless the language is improper and no information is permitted on the open forum of where to source other than levothyoxine but this can be shared between members through a private message.

Neither are we medically qualified. We are qualified through either not being diagnosed: not prescribed sufficient hormones: being kept on a dose despite disabling symptoms: cannot get a prescription for other than levothyroxine even if we feel awful on it. The professionals fail to do the necessary blood tests to enable us to return to good health or prescribe alternative thyroid hormone replacements.

[helvella Administrator Thyroid UK]

If you prefer private health organisations to the NHS, try this one:

patient.info/forums/discuss...

[loueldhen]

Gosh you must have had some strange encounter. I’ve been on this forum for years without any ‘interference ‘. I stopped taking t4 and am t3 only for years. But your doses are at the outlier end of experience. I can only guess people were trying to help.