My Daydream re the troublemakers in Thyroid illnesses

[marigold22]

I have a fantasy / daydream that diogenes and 4 or 5 other scientists, doctors (Dr Midgley?) who completely understand the current problems regarding both the use of TSH as a diagnosis and the vital role of T3, take part in a debate in front of an unbiased and impartial person – an adjudicator.

On the opposing side would be Professor(s) of Endocrinology, the head of BTA, and all the other ‘top’ people who have caused such incredible misery to patients with Hypothyroidism and Hashimoto’s Thyroiditis.

It should be a totally intellectual debate, with nobody who has suffered either illness, in order to keep it unemotional. Simply plain proven facts and logic.

I would be very intrigued to witness the argument, logic, thoughts of 'the other side'. I would presume (& hope) that the adjudicator would declare 'our side' to be the winner. Then hopefully something could be written in law?

[humanbean]

Just wanted to point out that diogenes and Dr Midgley are the same person.

[marigold22 in reply to humanbean]

Oh WOW - well they can both be at my fantasy debate

[humanbean in reply to marigold22]

Well, if one of them was at your fantasy debate, the other one would insist on being there too!

[DippyDame]

I certainly wish someone would help change the current NHS protocol....mention the word thyroid and a wall rises up. I have a lovely GP but as far as they are concerned there is only one way to treat hypo...it is driving me up that b****y wall!

Did you hear the recent thyro debate in the Scottish Parliament? Excellent, but will it change anything!

My recent levo increase has made no difference (at 150mcg) and I'm pushing for Dr Tofts recommendation of low TSH and high T4...

I have now managed to get more blood tests (tomorrow am) I produced the B Horizon15 test info. and said "this is my next plan"....GP checked it over and agreed most could be done on the NHS. It's progress, but has taken forever.

It beggars belief that so many people are left feeling ill and fighting to have their voices heard. Can anyone think of another illness that is treated similarly?

[Kitten1978 in reply to DippyDame]

Thyroid UK and ITT Campaign are both registered as stakeholders for the NICE guidelines on thyroid treatment. Hoping that "someone" would help isn't going to be very helpful. WE thyroid patients need to help our cause. If you want a job done properly you need to do it yourself...

[marigold22 in reply to Kitten1978]

I don't wish to be disrespectful, but I feel like I have been bashing my head against a brick wall one million times over. The 'bad guys' are a closed off clique which is impermeable to anyone or any body outside their clique. It seems to me to be Mafia style stuff going on. My idea was only saying I would very much welcome hearing their side of the argument, how they condone their treatment of their patients, their interpretation of exactly how the thyroid works. Ultimately their behaviour must be based on financial gain. I myself cannot think of any other reason(s) that thyroid patients are being left to rot. Why did a Professor of Endocrinology at Birmingham QE teaching hospital insist that I came off T3 and went back onto T4 when I clearly told him I felt human again on T3? He nearly killed me - I used to listen to the trains in the valley at 2am and wonder if I could walk there to lie on the track.

[DippyDame in reply to Kitten1978]

Oh, believe me I am trying to help myself, I do not expect everything to be done by someone else. I'm not sure I fully understand your response.

The "someone" (collective) I refer to needs to be in a position of authority and influence who hears, understands and supports those who are crying out for help and often struggling on their own to cope and to have their voices heard. They are on here...perhaps in their hundreds!

If that "someone" takes the shape of the stakeholders in NICE then being aware of the enormity of this issue, and hopefully having a powerful voice, they are at least in a stronger position to fight against the medical, political and financial powers that are preventing change. If this representation is happening then I'm sure they have "we thyroid patients" behind them and hopefully changes will eventually follow. Maybe!!

This is not a fight for the individual as you seem to sugges but we all need to play a small part.

Forgive me if I have misunderstood your point.

Best...

DD

[marigold22 in reply to DippyDame]

DippyDame I think the reply of Kitten1978 was aimed at me

[DippyDame in reply to marigold22]

Thanks @marigold22... her mention of "someone" was directed at me I think...it's a quote from my first response!. No matter...I liked your post and totally agree about the brick wall senario...what other illness requires patients to take on the might of the powerful In order to receive the correct treatment. Grrrrr!

Keep dreaming....dreams sometimes come true!

Best...

DD

[megarub]

It's not a purely 'intellectual' debate though, as power, reputation, professional careers and alliances are the bottom-line emotions running this argument.

Science isn't the objective, value-free enterprise academics or politicians would have us believe. Old clinical ways are slow to change.

Scandals, and money are often the tipping points to policy or prescribing change, after all the science and facts have been there in plain sight for all to see for aeons ..

[marigold22 in reply to megarub]

I know what is ruining it all for us on T3 and the TSH fiasco. I have written about it, and am fully cognisant of all the politics, power and money grabbing. That is the reason it is my 'daydream' to have a purely intellectual debate with the scientific and medical facts fully laid bare in front of an unbiased adjudicator. It was for exactly the reasons you state, that I wish for that debate, to air it all in the public domain.

[crimple]

It is some fantasy, I occasionally had a similar one but I am now so cynical about all NHS dealings re thyroid issues and being under medicated there isn't even the energy for cynicism never mind fantasy.

[marigold22 in reply to crimple]

Please read my new updated profile. I must rush right now; will contact you again tomorrow

[marigold22 in reply to crimple]

crimple Have you had any recent blood tests? I think you are taking T3 from looking at your previous posts. What dose are you on currently? How long ago were you diagnosed?

[crimple in reply to marigold22]

Marigold I am not taking T3 but getting nearer to doing so. My Thyroid results set GP's in a spin cos my TSH is below range, yet T4 and T3 are low in range, so I am not overmedicated 112.5mcg levo per day but still have hypo symptoms. But of course GP's threaten with heart attacks and osteoporosis and want to reduce my dose.

I keep telling them TSH is not a thyroid hormone and only T4 and T3 are of importance, but of course it falls on deaf ears. I need to have another blood test in 6 weeks and no doubt I will still be "overmedicated" and they will try to reduce my scrip.

I am fed up of trying to "teach" the medics what they should have been taught in med school. I am worried that if I do take T3 in the future I might not be able to get supplies.

I have spent the last 4 years since getting Hashi's reading, learning, improving my Vits levels and trying to address my leaky gut issues. The medics are not the slightest bit interested, TSH levels reign supreme and symptoms can go to hell! Rant over!

Fantasy world is where everyone with a thyroid condition is treated as a human being with their own set of symptoms not a TSH number, where medics are open to and will act on new ideas about thyroid treatment and thyroidies can get their lives back and function normally!

[janveron1]

Try Anthony Tofts latest paper- so much on our side! Issue4 Journal of Royal College of PhysiciansEdinburgh !!

janveron1

[marigold22 in reply to janveron1]

Thanks janveron1. I have written a few replies on that Post. And said exactly what I think of Doctor Anthony Toft.