Article - my thyroid story

[Judcop]

My article for Central Bylines

centralbylines.co.uk/big-ph...

With thanks to members here who helped me to get this published

[ Edited by admin to add newline for link. ]

[TeeDee63]

Hi Judcop,

I read your story with great interest aswell as sadness. Sadness because thyroid disease is so very little understood even by the so called experts, which keeps so many of us so unwell. I’m so pleased that after so many years you are coming out the other side, and feeling well again, and I truly hope this continues for you. I also hope that others may take note of this ( health care practitioners) and it may pave the way for better treatment for all of us on this tough thyroid journey.

Well done to you on your perseverance which must have been so difficult with so many obstacles whilst feeling unwell, and most of us on this forum can relate to the feeling of being unwell, inadequately medicated, wrongly medicated etc. and know how hard it is to advocate for ourselves under those conditions.

Best wishes for your continued good health, and a big thank you for hopefully getting some headway into healthcare practitioners realising that some / most of us need liothyronine aswell as t4 to get ourselves well.

T x

[SlowDragon Administrator]

Very Well done.

Really brilliant summary of the unacceptable situation for thousands of U.K. thyroid patients

[Buddy195 Administrator]

Wonderfully written Judy. Thankyou so much for publishing and sharing with us. 🦋

[tattybogle]

Really excellent and very clear article Judy.

Congratulations on getting that published , it will help a lot of people .

All the important stuff is in there , but without getting overly technical about it , and it stays on point concisely ...which is never easy when trying to explain 'the problem with thyroid treatment ' .

(if i have one pedantic quibble , it is the "antibodies attack the thyroid..." sentence ~ because technically , they don't ....the immune system /lymphocytes do that, and the antibodies are the markers that show the damage has occurred ... but you are not the only person to make this oversimplification ..i've seen it printed in many thyroid research papers ,and in stuff published by thyroid organisations too)

[judycopage in reply to tattybogle]

Thanks for your kind words - and the anti-bodies comment. You are right of course, but in our efforts (me + editor) to keep technical medical detail out of it to appeal to readers, we have oversimplified. I'll make sure I make this point in my next article, which I'm planning as we speak.

[DippyDame]

NiCE advises that T3 should not be routinely offered “because there is not enough evidence that it offers benefits over levothyroxine monotherapy.”

If the naysayers don't look they will conveniently ( for them) find no "evidence"!

This forum alone is permeated with examples of the successful use of T3....either in combo with T4, or alone.

Were NICE to speak to patients and listen to their experiences with the open minds researchers require to have, then perhaps they might recognise "evidence".

Perhaps, if they were to peruse this forum they might recognise " evidence".

Perhaps, if instead of relying on the opinions floating around in thyroid land, they took cognisance of the available scientific facts, they would find "evidence".

Sadly your experience is not uncommon so your piece is hugely valuable in highlighting the problem ...and hopefully in raising awareness and encouragement.

Thyroid disease is much more complicated than most people will ever comprehend!

From someone who needs high dose T3-only to function, which took nearly 50 years to discover.....thank you and good luck!

[Zephyrbear]

An excellent article and one I fully understood! I too have been treated through the Shrewsbury Hummingbird Centre and the endos there tried to take the T3 I had been prescribed in 2010 by my old endo there away from me in 2017. Thankfully, I live just over the border in Wales and they have no jurisdiction there, so I have continued to have my T3 and I have no further contact other than a yearly phone call to sign me off for another 12 months of prescriptions. I don’t know what I would do if I didn’t have that lifesaving drug… probably curl up and die.

[AmandaK]

One of the clearest descriptions I've ever read. Excellent. It should be widely shared and used as an exemplar.

[judycopage]

I am touched and pleased by the responses here. Thank you! I am planning a second article using readers' stories. Please get in touch with me at the email address shown at the end of the article to share your story. (I am part of the Central Bylines editorial team.)

All correspondence is completely confidential. Please also tell me if you give permission to use your story for the article, and anything I use will be anonymous.

That includes the replies here - can I have permission to use them?

Admin please let me know if this post allowed.