Thyroid UK - Results of their in dept... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,443 members10,641 posts

Thyroid UK - Results of their in depth survey:

MaryF profile image
MaryFAdministrator
9 Replies

Thyroid UK undertook a huge survey on Hypothyroidism, this is terribly important, as often people are not tested, the TSH test is not reliable, also there is a lack of choice for full testing and also a choice of medication. So many people with autoimmune problems and Hughes Syndrome end up with a Thyroid problem. This is quite a long and detailed survey and one which I embarked on doing myself the minute it was up on line.

thyroiduk.org.uk/tuk/TUK_PD...

It is a fantastic piece of work that they have done, and I hope it will help bring about change.

MaryF

Written by
MaryF profile image
MaryF
Administrator
To view profiles and participate in discussions please or .
Read more about...
9 Replies
valwood profile image
valwood

As with most illnesses it seems Drs need to listen to their patients and not presume they are right. An interesting article very informative.

MaryF profile image
MaryFAdministrator in reply tovalwood

Thanks, I am glad I took part, it is through Thyroid UK that I educated myself in the right direction. MaryF

daisyd profile image
daisyd

Hi Mary, I asked my GP if I could have hypothyroidism, he said I have been tested 8 times in the past, I asked him if I had been tested for T3, his answer was we only do that if the T4 is out of range, I thought this was wrong. I haven't got the strength to argue anymore. Hughes syndrome has taken it all out of me.

I have all the symptoms of hypothyroidism any suggestions please

MaryF profile image
MaryFAdministrator in reply todaisyd

I am sorry, it is the same for so many of us or we are told it is 'FIbro' or 'their age' or 'the menopause'. I did some private tests, and regularly still do. I can only suggest you see a different GP or do some alternative testing. MaryF

panda60 profile image
panda60

I still remember how long it took my mother to be diagnosed in the 1960s and how bad she was. I can understand why it is misdiagnosed in the early stages as many of the symptoms are similar to fibro which I have but not in the later stages. Mum's heartbeat and pulse were abnormally slow and she was suffering from breathing problems alongside other symptoms. In those days it was often diagnosed by a locum GP. Fortunately me and my sisters have not inherited the thyroid problems.

MaryF profile image
MaryFAdministrator in reply topanda60

Good for you. MaryF

emmaj profile image
emmaj

Mary how do we get tested for this, I've had my levels tested and they say it is OK,but funnily enough a friend of my mother in law has been working alongside a controversial researcher for years and he was 'hushed' and ridiculed and researching funding taken away,but he was in fact ahead of the game and believed a lot of people had problems with thyroid and said a long time ago that doctors weren't looking at the right results,and testing wasn't taken seriously enough. I don't know enough about it but he was famous and has since died x

MaryF profile image
MaryFAdministrator in reply toemmaj

Join Thyroid UK on this platform, you can use same log in and also name.. and their actual charity pages carries up to date information of how to get tested. There are two companies, which I will not list on here as it goes against guidelines... but the clue is I did a finger prick test, it is a scandal, nationally so, that even when doctors request the more detailed testing, including T3 and Reverse T3 it is ignored..... the charity is linked to this platform like we are on here... They carry modern and up to date information.....

MaryF

emmaj profile image
emmaj

Thanks Mary x

Not what you're looking for?

You may also like...

Thyroid results

Got my thyroid test results: Free T4--.89 (normal 0.89-1.76ng/dL) Reverse T3--11.6 (normal...
ndstephens49 profile image

A thoughtful petition

Hi, Many people with Hughes Syndrome/APS end up with some sort of Thyroid problem. There is a...
MaryF profile image
Administrator

Differences between LMWHeparin and Warfarin, how they work, side effects and suitability.

Hi all, I've been looking at the different anticoagulation treatment given for different...
jp83 profile image

The difficulties of having autoimmune disease either one or several

I have had some truly great care over my life time, but some that has been equally appalling,...
MaryF profile image
Administrator

Great article - written for Thyroid UK for their quarterly 'Harmony Magazine' by Professor Graham Hughes

Thyroid’s “fellow travellers” In a recent issue of your magazine “Harmony”, a correspondent in the...
MaryF profile image
Administrator

Moderation team

See all
HollyHeski profile image
HollyHeskiAdministrator
KellyInTexas profile image
KellyInTexasAdministrator
MaryF profile image
MaryFAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.