2019 and all that: To everyone concerned with... - Thyroid UK

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2019 and all that

diogenes
diogenes

To everyone concerned with this site, my best wishes for 2019. On my scientific side, I'm hoping for significantly greater progress in more people accepting the new concepts of how the thyroid and body work together and what the consequences are for proper diagnosis of the individual and treatment of disease. Already the penny seems to be dropping in the USA where Frontiers in Thyroid Endocrinology are assembling papers for a Research Topic: Research Topic Title: Combination Therapy for Hypothyroidism

Topic Editor(s): Jacqueline Jonklaas, Anne Cappola, Francesco S Celi

This series of papers will look at the circumstances in which combined therapy is advocated and we shall include our paper which has looked at an unselected group of patients on T4 therapy only, and has examined the FT4/FT3/TSH parameters for those contented on this therapy and those who still complained of hypo symptoms. The latter seemed to make a small subgroup of about 20% of the total, and their response (T4-T3 conversion) to the therapy was significantly different from the rest. As we showed before, the FT3 produced from the T4 is the important factor in separating this group from the rest, and TSH has no influence. The paper also shows the futility of combining all together in any statistical analysis; the minority are simply swamped out by the majority. This in turn questions the value of all clinical trials done in this manner as they are not either properly designed or powerful enough to find out what is actually happening. Unhappily I fear the NICE guidelines will simply churn over these ineffective trials and come to the same (non)conclusion.

But I do hope that the likes of Bianco, Jonklaas and Celi will also contribute. They all are impressive thyroid scientists and Celi is certainly happy with T3 therapy in the right circumstances. I look forward to this year as a further advance and acceptance that diagnosis/treatment needs a thorough overhaul.

27 Replies
oldestnewest

A happy new year to you Diogenes and to all at Thyroid U.K. who do so much to help those of us who have this condition. Thank you.

Musicmonkey
Musicmonkey
in reply to linda96

Ditto

diogenes thank you very much for this. I always like seeing your posts as they bring renewed hope on here! I so hope you're right abut the tide turning - I think you are. I for one can't keep up the pace of campaigning to such a level. 2018 was intense being involved with the Lords group as well. We absolutely must win this war though!

Diogenes,

Hope you have an amazing year and thanks ever so much for your contributions to this forum and of course, thyroid science. I really appreciate that a scientist of your calibre takes the time to engage with a patient forum that consists of mostly lay people. I have honestly learned so much from your posts and research papers, so my sincere personal thanks to you.

I'm glad to hear you are optimistic about what 2019 may bring to the scientific community, and I too hope findings will eventually percolate the medical and policy making circles.

Here's wishing you health, success and happiness! X

MaisieGray
MaisieGray
in reply to Kitten44

Well said. Having the opportunity to have access to Diogenes' knowledge in this way, is excellent.

wellness1
wellness1
in reply to Kitten44

Well said, Kitten44. :) Thank you and best wishes for the New Year to diogenes and TUK admins. Wishing everyone a healthy, happy 2019!

A Very Healthy, Happy New Year to You and All Your Loved Ones Diogenes. Many thanks for all your hard work, helpful replies and support for us all.

SeasideSusie
SeasideSusieAdministrator

A happy and healthy new year to you and yours too diogenes and heartfelt thanks for all you do.

Thank you simply doesn’t seem to cover it, Diogenes, but thank you anyway for everything you offer this group. May the year ahead bring health, joy and even more creativity! We are so grateful.

Thank you for your continued input to this forum, it is much appreciated; and for providing glimmers of hope that things 'may' improve.

It’s tremendously heartening to read this post. Many thanks for all your contributions to the Forum. Always helpful.

I second all those comments above. You are invaluable to us. I can’t thank you enough!!!! Happy New Year!!! 😘

Thank you again for all you do in order for thyroid problems to be better understood, diagnosed and treated.

Very best wishes to you and yours for 2019.

Wishing you health and happiness for the new year, Diogenes, and grateful thanks as always for your hard work.

A Happy New Year to you diogenes. Thank you for your illuminating work and very informative posts I look forward to more exciting revelations!

As 2019 has dawned we can only hope that it brings better understanding of what is currently the scandelous state of provision meted out to thyroid patients whose health is not improved by standard T4 monotheraphy.

Thanks solely to all at TUK I have been able to read extensively on the subject and to discover that I have the DIO2 snp/homozygous and that I am thyroid hormone resistant.

As a consequence I have taken control of my treatment,and improvement is now evident....although I'm starting the year with the worst cold I've ever had!!

My health gradually declined for decades until I became very ill yet the only diagnosis I was offered was fibromyalgia and CFS.....and a talking therapy, which I declined! I was never convinced about this and repeatedly suggested "metabolism" - that fell on deaf ears.

I have asked to see an endocrinologist because I wish my clinical need for T3 to be recorded in my medical records..... otherwise I may end up in hospital one day with no record of my need. I'm happy to continue to buy the T3 I need if it saves the NHS some money!

However, part of me resents the amount of support and money spent on people who have been the architects of their own downfall. I agree they need help but it should be on a level playing field!

Despite all the evidence I have to hand I'm not holding my breath on the outcome of that conversation, in a fortnight, with the endocrinologist

We can only hope that in 2019 all those who have their heads so deeply buried in the sand will have the courage to pull them out into the daylight and see this debacle for what it is. Patients must no longer have to battle against ignorance, politics and finance in order to first, be heard and secondly, treated with understanding and respect

Clearly I'm ranting again because I'm only one of very many who find themselves in this rediculous situation.....never the less, one who is immensely grateful to you, your team and everyone at TUK. You are changing lives...for the better.

Wishing you all the very best for 2019 and with the hope that we might be about to enter an era of enlightenment.

Fingers crossed

DD

Thank you so much diogenes - small groups of good people can really make things happen to make that difference for many... almost like 'the freeing of slaves', as some feel/are right now.

Wishing you a Happy New Year and here's to a much brighter future. :-) xox

Happy New Year to you Dear Diogenes and to all the wonderful members . I'm thinking positive and looking forward to a *New* and *Improved* ways thyroid patients get their **Optimal Care and Treatments** . I'm also hoping that thyroid meds companies don't short change patients with their reformulations and Shortages and Back Orders . If Aint Broke Don't Fix . Please make our meds Optimal and Affordable . We are counting on you !!!

I would love to suggest if someone can come up with a thyroid home test kit as the diabetics have . So that we can test instantly our own FT3 FT4 TSH . I'm sure it can be done . If we can put man on Moon this should be an easy task to accomplish .

May we be Blessed in 2019 and have many accomplishing advances with our thyroid *Optimal*Journeys .

Adding my wishes to you. Thankyou for all you do

Diogenes

May your new year be happy and healthy, and many thanks for all your hard work.

Thank you for all that you do for us Diogenes and I endorse all that you say about latest research and hope 2019will be a much better year for all Thyroidies.

I hope for great advances in 2019 too. It is clear that there is much to reveal. As a T3 only user, my concern over Bianco et al is that they are pursuing development of a slow release T3 prior to accepting T3 as part of the solution, with the mindset that T3 dosage has to mimic the body's production pattern. I can't explain why my body happily digests 40mcg in a single dose per day without initially spinning like a top and then gradually winding down until the next one is due. Perhaps I am doing myself great harm. I do know that without it I would be dead - and better off dead.

Hillwoman
Hillwoman
in reply to loueldhen

I'm concerned too about the obvious commercial interest in the development of slow release T3.

I'm also one of those people who appears to have peripheral resistance to thyroid hormone and I need anywhere between 87.5mcg and 150mcg of T3 in a single dose, on waking, to make any real difference. Multi-dosing just doesn't work for me.

diogenes
diogenes
in reply to Hillwoman

That is the whole point! It's no use simply substituting a new standardised treatment (however much better) in place of another, redundant one. Lesson: a) people are individual in how they originally expressed their health thyroid-wise. b) in illness therefore the approach to treatment has to be equally individual. Likely it will be T4 alone, because most can use this acceptably. But for those who can't, there is not and cannot be one unique solution. It may be combination T4/T3, T3 alone or NDT or any combination of these (not leaving out the influence of different responses to different makes of the same thing). What the medical profession in this area has to do is to treat the patient as themselves and not another cog in a standard wheel.

Hillwoman
Hillwoman
in reply to diogenes

Well yes, I think that is the point I was trying to make too - perhaps not very well though.

DippyDame
DippyDame
in reply to loueldhen

I take 75mcg T3 at bedtime....and rising. I don't fear any problems and carefully monitor my daily temp and heart rate for signs of over medication

I have the DIO2 snp/homozygous and thought I had found the answer but nothing really improved until I learned about thyroid hormone resistance and the need for one single - higher than usually accepted - dose.

Until blinkered medics ditch the one -cure-for-all approach thyroid treatment will remain (for those who do respond to T4 mono-theraphy) an uphill battle.

We did not come of a production line like robots, thankfully we are all individuals , and we need to be treated as such.

Someday maybe....

Diogenes thank you for all your valuable and committed support. Wishing you and all the other committed members hear on health-unlocked A Really Happy New Year for 2019.

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