NDT, atrial fibrillation, and a self-proclaimed 'thyroid guru' in hospital pushing the T4 and TSH narrative

[Astridnova]

Whilst I was an inpatient with atrial fibrillation, and had spiked a high T3 reading and caused panic in the heart unit about my use of Natural Dessicated Pork Thyroid (NDT) medication (prescribed by my GP who was on holidays), to reassure my cardiologist (who really cared) I agreed to see a consultant endocrinologist in that hospital. For me, I would have liked to have seriously discussed the best way to resume NDT (which had been temporarily discontinued, with my consent) or even some compromise with other meds. I needed to discuss dosage. I didn't hold out much hope and my pessimism was well-founded.

The endocrinologist did not try to find out what I already knew or my educational standard. He never asked me about my concerns, never tried to find common ground, despite the seriousness of my illness. There was no chance of a true consultation. Instead he greeted me with an angry smile and launched without pause into what soundled like a spiel written by Glaxo. Firstly he announced that he was a thyroid specialist, then he actually added, "I am a thyroid guru." (I thought, how old does he think I am, 5? )

Then he told me three lies: 1. There is no controversy about thyroid treatment based entirely on TSH scores, with very rare exceptions where people need T3; that my GP looked at T3 (rather than TSH) because he has a bizarre theory all his own; that there is no science supporting that theory.

I also mentioned to the endocrinologist that my mother had nearly died of myxodema, whilst treated conventionally, and he responded by saying that myxodema was not caused by thyroid problems.

Given that I was quite ill, it could have been very traumatising for me to hear the allegations that my doctor was pushing a mad theory all his own. The casual calumny did shake me a bit, but not as much as it might have.

Since I am a social scientist and familiar with scientific publishing and editing, I am well aware that big corporations, like manufacturers of synthetic thyroxine, have enormous influence (via finance) on what research is funded, what gets published, and what gets promoted (in publications, in hospitals, in medical schools etc), and also what gets promoted popularly in the mass media. There are huge profits to be made by pushing thyroxine with a narrative that says to only look at TSH. Synthetic T3 is very unstable and inconvenient to use, so it doesn't get pushed much and a narrative saying that T3 is rarely needed suits the manufacturing situation. (If a drug manufacturer comes up with a stable synthetic T3, it will suddenly be promoted as essential for a very common deficiency.)

I came to the conclusion that the synthetic thyroxine and TSH school have redefined hypothyroidism to exclude most of the things that many of us here find are helped by knowing and supplying T3 (often in the very stable form of NDT. So you and I are talking about a different disease definition from them.

If I had been tempted to argue with this Guru (who has probably been nurtured by thyroxine manufacturers, as in being often published and promoted, being invited to be a guest lecturer etc, and spoken of as a 'guru' to young doctors (my cardiologist said, 'But he is a guru! Doctors come from all over the place asking his advice!'), I might have said, "Look, I have a problem, obviously not a thyroid problem (according to your TSH diagnostics), that responds to NDT. Can you help me with that?"

Towards the end of my hospitalisation my cardiologist said that he was not even sure that my atrial fibrillation had anything to do with my thyroid, and he started to refer to 'This thyroid madness,' when talking about my interactions with the endocrinologist. Fortunately I found an endocrinologist who treats people with NDT and or thyroxine, and have an appointment in April.

Finally, I did work out that there may well be a component of too much NDT in the origins of my atrial fibrillation. (Or there may not.) Two years ago I lost 16 kg but I remained on the same dose of NDT. I have now dropped the dose and feel okay with that. However, there could be other reasons (including cancer) for my problems, which have still not been exactly diagnosed and included pericarditis and pleural effusions and ascities, with the pleural effusions the most persistent.

[arTistapple]

OMG please keep us posted. Having a similar problem myself. However in a worse position in that I tend to be more introverted in my thinking and not half as articulated about my situation as you. The very word ‘Guru’ gives me the willies. I would never give a chance to someone labelled Guru. Even more importantly I would never touch anyone with a barge pole who described themselves as a Guru!!