I appear to have upset someone...: I phoned re... - Thyroid UK

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I appear to have upset someone...

serenfach profile image
14 Replies

I phoned re the wrong blood test - diabetes, not thyroid, and got the distinct impression I was not supposed to notice. New form is being sent. Can you imagine? Well, we did the blood test, now go to the back of the 9 month queue again just to get a T3 test...

Anyway, today I received a letter from the Endo (diabetic specialit), with a paper attached that he thought I may find helpful, about not allowing patients to have T3. I could take him sending this two ways, especially as he was not interested in the papers I was quoting.

"Use of liothyronine in hypothyroidism: Joint British Thyroid Association/Society of endocrinology consensus statement".

I will now have a search for counter papers and send them to him. I need help! Any suggestions very gratefully received.

It drives me mad that they go on about how taking T3 is dangerous, but will not test it!

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serenfach profile image
serenfach
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14 Replies
shaws profile image
shawsAdministrator

Taking T3 enables my body to function as a human being with everything in its place. I am fortunate to have no symptoms and feel well.

On levothyroxine it was 'like a visit to hell' as both husband and myself hadn't a clue why severe symptoms were occurring - after all I had been given a prescription that we thought would resolve symptoms. Both of us were awake most of the night due to these symptoms I had when on T4 alone and trying to reduce my heartbeats.

p.s. I was also connected to the Cardiology Dept so that they could try to reason why this was happening. I don't think they had any idea or resolution.

I am grateful for T3 as my body feels 'normal' with no clinical symptoms.

Charlie-Farley profile image
Charlie-Farley

DippyDame is on just T3 serenfach and I bet if you have a look at her profile and posts you will find some very relevant posts on papers. Also Bianco seems to be changing his stance on T3 if the face of overwhelming evidence that can’t be gaslighted away.

Some people are able to sufficiently convert to rely totally on mono therapy. Some like Dippy have tissue resistance (think that is what they call it) and require exceptionally high levels off T3 just to ensure some gets to where it is needed. The levels she takes would send us loopy (or worse).

The thyroid, when functioning, produces T3 directly as well as T4. The body in its euthyroid state does NOT rely entirely on T4 to T3 conversion .

You just wonder what part of this they do not get.

I would just ask him if it is about the money? Appalling 🙄

samaja profile image
samaja

Have a look at Paul Robinson's websiteand his blogs. He quotes various papers in these blogs and gives references but I don't think your endo will be persuaded by whatever your provide. He and the consensus statement convenientl ignore whatever research already exists proving the benefits of T3. therewas also recently an article in BJM about the importance of T3 and flaws in the current hypothyroidism treatment which I cannot find now but hopefully somebody else will provide a link.

DippyDame profile image
DippyDame in reply tosamaja

Maybe this...

bestpractice.bmj.com/topics...

Most is behind a paywall but the Summary points to the importance of T3

serenfach

serenfach profile image
serenfach

Thanks. I had a look through DippyDame pages and found some lovely stuff, thanks for the suggestion Charlie-Farley . I also found there had been a discussion here on the paper he sent me, tearing it to shreds, so will bounce that back to him. (rubs hands with glee).

I also got another letter from him today with a phone appointment in January to discuss the blood results (blood test booked Monday). I expect he will cancel it when he gets all the papers to not read!

Charlie-Farley profile image
Charlie-Farley in reply toserenfach

Hi Serenfach

Sounds to me like you are ‘fight fit’. Half the time it is just getting the information and hitting them with it. I have always found the GPs I have dealt with tend to be careful when I made written submissions of things, especially scientific papers. It pins the discussion down and unless they are going to attempt to refute the evidence (very dangerous if it is solid), they tend to roll. Nobody wants to doggedly argue against something and make themselves look ignorant, or just plain stupid in the process.

Science is not an ideology-it does, for the most, part deal in facts, though some have tried to undermine it in recent years (let’s not go there though 🙄).

There is good science and bad science - sadly there has been some ok but average science completely misinterpreted and bad science and then policy has come about as a result.

Oh meant to ask what was the paper and can you paste the link here so I can have a gander on the discussion?

Love a good shredding of poor science 😂

serenfach profile image
serenfach

bmcendocrdisord.biomedcentr...

jci.org/articles/view/118353

thelancet.com/journals/land...

and still looking...

I think they treat us all as if we had no brain. I have two degrees and my son is a Professor of Nuclear physics, so the research chip is strong in us!

Eldest daughter just had her name in the credits of the latest Marvel film, as she made the main costumes. This has nothing to do with my thyroid, just a proud Mum moment.

Charlie-Farley profile image
Charlie-Farley in reply toserenfach

The fruit doesn’t fall far from the tree 🤗♥️

Charlie-Farley profile image
Charlie-Farley in reply toserenfach

and super thanks for the link 😊👍

Charlie-Farley profile image
Charlie-Farley in reply toserenfach

Hi yet again serenfach (you will be sick of me🤣) which was the paper the Endo sent you to justify his stance?

serenfach profile image
serenfach

onlinelibrary.wiley.com/doi...

Discussed here 6 months ago and started by TaraJR . Have a cleaning cloth in your hand so you can clean the ceiling while you are up there...

A taster:-

“Having thyroid function tested is a marker of increased psychological morbidity”.

I am going to reply that "having diabetic tests is a marker of increased phycological morbidity" and see how this diabetic specialist reacts....

Charlie-Farley profile image
Charlie-Farley in reply toserenfach

🙄 expletive (please feel free to insert your favourite)

Oh please somebody turn off the gaslight- it’s getting boring now.

Bearo profile image
Bearo

The ‘Use of Lio….’ statement they gave you - what are its salient points? (I couldn’t get the link to work).

Is it the one saying Lio is not the standard treatment and should not be used without good reason?

serenfach profile image
serenfach

Yes, it does reluctantly admit there are a small group of people who may benefit from taking T3, but then it says if they still dont feel well, take the T3 away! It concludes that the need for T3 is phychological. It states that in lower "deprived" areas, there was a low number of T3 prescriptions, and higher in better income areas, but puts this down to private health care "exploitation" in giving T3.

It starts by questioning how many are misdiagnosed, wanting the TSH to be over 10 for some months, and then if they are not instantly cured by Levo, stop the treatment with T4!

One of the worst conclusions, and this is to guide health professionals, is that it is only necessary to test the TSH. No other tests are needed. We are already seeing this, and I am looking for some research to show why this is not a good idea.

It does not go into NDT much, just saying it is not recommended, and not in the patients best interests.

I hope this is helpful.

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