At last a trial between NDT and T4 therapy, BUT--- - Thyroid UK

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At last a trial between NDT and T4 therapy, BUT---

diogenes profile image
diogenesRemembering
16 Replies

Tania Smith's blog describes the upcoming recruitment of patients for a trial contrasting NDT and T4 in therapy. This is instigated by Allergan who make Armour NDT. I've looked at the trial design and unfortunately it seems to be designed to exclude the very people who would benefit from NDT or T4/T3 combination. This is because it insists on using patients with TSH in the normal range as a control mechanism. We know that often poor converters on T4 have suppressed or below-normal TSH so the very trial design minimises their input which would not of course occur. Go to Tania Smith's blog to see details of the trial design.

thyroidpatients.ca/2019/12/...

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diogenes
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16 Replies
Den1987UK profile image
Den1987UK

Hello diogenes it don't make sense why they do not help hypothyroid sufferers. Which country and or town or city is the trial in?

dolphin5 profile image
dolphin5

How disappointing! We’re already suffering the negative effects of poor quality clinical research!!!

TSH110 profile image
TSH110

Why might they be doing that? To pretend to show armour is useless and discontinue it?

Den1987UK profile image
Den1987UK in reply to TSH110

Hello TSH110 More than likely

LindaC profile image
LindaC

Forest Labs used to make Armour Thyroid, back in the day? Formula was changed several times, I've heard, each time being increasingly complained about.

Allergan... apparently makes a lot of stuff including cosmetic injectibles. Anyone currently using this brand? I used to and had a very good experience with it.

jgelliss profile image
jgelliss

Thank You Diogenes. The reason the NDT's don't work well for many of us no longer is that they all got reformulated with inferior replacements . So "they" are now trying to prove that it doesn't work? It most certainly worked and worked very well for so many thyroid patients with their T4 Levo combination . The old version of NDT gave thyroid patients their lives back. Now they pulled the rug from under us and of cause it doesn't work as it used to . In fact in many cases it causes many symptoms and problems .

It's amazing that the put the blame everywhere except where the blame deservedly belongs.

You can not make this story up .

Den1987UK profile image
Den1987UK in reply to jgelliss

Hello jgelliss I agree with one hundred percent. More likely it's to do with cost and the governent and the NHS and fat cat boss's penny pinching to save money at the expense of the critically ill patients driving down prices by letting people suffer in agony and pain and making our lives hell and selling off the NHS at rock bottom to line their own stinking pockets. That would be my opinion on it the so called fass of a drug trial.

jgelliss profile image
jgelliss in reply to Den1987UK

Yes it's a shame that Big Pharma only looks at the bottom line it's called M-O-N-E-Y . It's all at our *Expense*. With our Well-being and our pocket books.

Den1987UK profile image
Den1987UK in reply to jgelliss

Hello jgellis good evening I agree. It is at all our expense definitely right. God forbid if we actually get really interested researchers who want to introduce proper funding for treatments and medication for thyroid problems. I think everyone will be blowing party baloons.

shaws profile image
shawsAdministrator in reply to Den1987UK

Don't forget all of the 'extras' we get prescribed to try to control clinical symptoms when the purpose of 'hormone' replacement is to relieve all of them, which NDT used to do.

Why do 'they' assume that 'one size fits all'. We are all so different and those who make the decisions to withdraw 'this and that' have no experience of being undiagnosed hypothyroid, or hypo for whom replacement levo doesn't work at all.

The only people with the experience of what suits is the patients themselves. We need a variety of options be it T4/T3, NDT or T3 alone. Our bodies dictate what restores health and relieves symptoms. Interfering with the fillers/binders causes us to be ill with awful symptoms and its a 'whole body experience' not just an arm or leg.

I suggest that those who want to experiment with replacement hormones have their own thyroid gland removed and then go along the 'rocky replacement road'. The fact that nowadays we are only being prescribed one and if we add in the 'extras' it would probably cost far more than a decent hormone replacement. Not including that many may lose their livelihoods altogether and family members may not be sympathetic because the 'patient' is taking prescription medications and still complaining.

I know of one person who took their life and there must be others we don't know about.

Lorraine Cleaver was one who had already told her family she could go on no longer - fortunately - got referred to Dr Skinner who saved her life, as he saved others. What other doctor had 10,000 testimonials that their lives were saved (Dr Skinner). For doing so he was hauled before the GMC more than once, what a strain that must have been but who complained/reported this good doctor. I think we'd like to know the answer.

How did Dr Skinner save lives? He treated the symptoms and healed the symptoms and prescribed whatever one the patient needed, i.e. NDT or T3/T4 or T3.

Dr Skinners' staff have collated all of the scientific data and were hoping to publish but I've heard nothing further at present.

Lora7again profile image
Lora7again in reply to shaws

I have felt suicidal myself because I was bedridden and had no quality of life and felt like a burden to my husband and family. I have just sent a reminder email to my local MP now the GE is over so lets see if she keeps her promise about putting my case to Matt Hancock.

jimh111 profile image
jimh111 in reply to shaws

Dr Skinner's data is part of a study funded by the BTF being carried out by members of Colin Dayan's team. I believe a patient of Dr Skinner's objected to the use of this anonymised data and this has delaying the project whilst this is sorted out. There was an update in the BTF Newsletter recently which (from memory) just said the study was ongoing and they hope to publish this year.

shaws profile image
shawsAdministrator in reply to jimh111

I know that, to publish their findings, it would cost around £10,000. Some members on this forum contributed and we'd love to know when it is published. Dr S didn't pussy foot about, he told it straight and it seems he wasn't popular with some of the medical profession but being loved by your staff and patients must definitely be the pinnacle of your working life.

Gcart profile image
Gcart

Me too Lora , no knowledge from medics as to the affect of a malfunctioning thyroid .

We look to them for help and receive none 😕

Have a life now with the help from this forum . Too late now for me to enjoy a productive life though Sadly lamented.

humanbean profile image
humanbean

Could one of the admins put the link in diogenes' post, please :

thyroidpatients.ca/2019/12/...

SlowDragon SeasideSusie

humanbean profile image
humanbean in reply to humanbean

Thanks, SeasideSusie . 👍😊

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