New Article by our Advisers in Frontiers in Endocrinology

[lynmynott]

Thyroid UK advisers have had another brilliant paper published which shows that the current way of treatment patients is wrong and should be discarded for a better way.

The article is entitled Recent Advances in Thyroid Hormone Regulation: Toward a New Paradigm for Optimal Diagnosis and Treatment and can be found here:

frontiersin.org/articles/10...

The terminology is a bit tricky but Dr John Midgley, one of the authors, has said that in layman's terms, the article says:

1) Everyone is an individual and unique in how their thyroid works, how that interacts with the body converting T4 to T3, how efficient T4-T3 body conversion is and how sensitive the body's cells are to T3.

2) Because the thyroid is no longer working, its direct T3 production that helped you keep well is no longer available, so if you take T4 only the body conversion has to work harder to produce the T3 you require. This requires more T4, and this suppresses your TSH. Thus TSH levels in health are not appropriate to T4 therapy. With T3 only or combo this is not so true but TSH can still be misleading.

3) FT3 must be measured in whatever therapy to control your level of health and response.

4) When you become ill and go on to a particular therapy (T4 only, combo or T3 only) for a long time, your body adapts to the treatment.

Many patients are now being asked to come off T3/NDT and move back to levothyroxine and Dr Midgley feels this is wrong He says, "However, changing the treatment then is dangerous, because your body won't respond quickly if at all. This is called allostatic epigenetic transformation, where your gene readouts have been permanently altered from normal health and can't easily be restored back again exactly to what they were. This often happens if you become critically ill close to death and partially recover. If your doctor simply thinks that you can change things early and quickly respond, then this is a dangerous, wrongheaded thing to suggest and has been scientifically condemned and could cause you permanent harm."

Please share this paper far and wide. Take it to your GP/endo/CCG etc. if you are being pressured to come off T3.

[Hidden]

Thank you for the update... Interesting information.

[crimple]

Wish there was a way of condensing the info. I suspect most GP's will say they haven't time to read and learn! Still I will try taking it to mine when he next wants to argue about reducing my levo because my TSH is around 0.05! but my T4 and T3 are low in range

[Summer64]

Who are thyroid UK Advisers? Are they medical people because if they are not I don't think GP's and CCG's will listen.

[shaws in reply to Summer64]

I believe they are scientists/researchers. Someone will correct me if I'm wrong.

[diogenes Remembering in reply to Summer64]

2 of the 3, the one not being me (biochemist/physiologist/inventor therefore lowest of the low in medics eyes), are medically qualified endocrinologists and doctors who in one case was and in the other is, head of a prestigious unit diagnosing and treating thyroid patients. The leader of our group is Prof Rudolf Hoermann, sometime head of the Nuclear Medicine/Thyroid department in a German Hospital. The other is Dr Johannes Dietrich who heads an important group in a hospital in Bochum, Germany. The medics can't get out of it by dismissing our group as nonmedical eggheads. There is also in our group the present medically qualified doctor in Germany who provides us with the data we need for analysis.

[Summer64 in reply to diogenes]

That's brilliant then. Is there any way we can have a copy with their names and roles on? I've been trying to do my complaint to the ombudsman today but just can't get my head round it. It's an online form and you can only add the most recent letter from the CCG which they have twisted to suit themselves.

[humanbean in reply to Summer64]

Summer64 Thyroid UK's advisors are listed here :

thyroiduk.org/tuk/About_Us/...

They weren't all involved in producing the paper being discussed.

[Summer64 in reply to humanbean]

Thanks, at least I can quote the ones that did the paper then.

[shaws]

Thanks Lyn,

Definitely copies to the GP surgery. Could it be that those who've had their T3 removed and are unwell again can sue to NHS or would it be the doctors in the surgery - after all they made the decision to withdraw it with maybe catastrophic clinical symptoms returning.

[Summer64 in reply to shaws]

I wondered that too. The ombudsman website states they won't deal if there is a chance you can take legal action and I feel we should be able to. I've been ill on and off now since they stopped my T3 in August. I switched to T4 like they said and became ill, bought the German Thybon and after two months on that had vertigo, went back on T4 only and became ill again so now on the French T3.

[Hidden in reply to Summer64]

Summer64 the remit of the PHSO is to defend the NHS at all costs. I've been through the complaints process and quite frankly it impacted upon my health.

Their conclusion was that there was nothing wrong with GPs repeatedly misdiagnosing me, leaving me housebound, unable to work, sleeping 18 hours daily and actually losing the ability to speak as I couldn't remember any words. They are pondlife.

Some reading for you:

phsothetruestory.com/about/

phsothefacts.com/

Read their Twitter feed and Facebook too.

I approached a no win no fee company, upon hearing my tale of woe they declined to take it on.

And of course NHS doctors know fine well that they have no accountability, the power-crazed loons amongst them take full advantage.

[Summer64 in reply to Hidden]

Oh heck, that's awful.

[Hillwoman in reply to Summer64]

Summer64 I'm afraid Hidden is right. The PHSO is notorious for its very poor treatment of complainants and habitual findings in favour of the NHS, regardless of evidence and circumstance.

If you are able to do so, explore the route of legal action.

[Summer64 in reply to Hillwoman]

Thanks.

[weescone]

Very interesting. I’m about to go from taking NDT & small amount of T3, back to Levothyroxine, as my NDT source has dried up. So, Dr Midgley states this is potentially dangerous, if I read that correctly? Due to allostatic epigenetic transformation. What now? 😨

[humanbean in reply to weescone]

There is more than one source and more than one brand of NDT. If you need a new supplier write a post asking for new sources to be sent to you via private message.

[weescone in reply to humanbean]

I’m on my last 2 days worth of NDT, so wouldn’t be able to get a supply to go to in time. What worries me is what Dr Midgley said about AET

[humanbean in reply to weescone]

You'll have to go back on to Levo to keep body and soul together, but get some NDT as soon as possible.

[diogenes Remembering]

As I said some time ago, humans are not like some easygoing car that can take diesel or petrol according to your whims. On any therapy, over a sufficient time, the body adapts to it and your whole being, top to toe, becomes in a sense differently set. You want to, and have to change. Sorry, but to achieve that is not an instant solution but a slow, even impossible destination against the body's resistance. The one thing we've learnt is that the body furiously defends itself against change. If change has to come, forced by longterm circumstances, then it will but it will defend the new situation with equal vigour. So you can see to go back to the original state is a huge ask.