Thyroid video: Why the Hesitancy in Recommending... - Thyroid UK

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Guineapiggy profile image
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Why the Hesitancy in Recommending Combination T3/T4 Therapy?

Kaniksha Desai, MD; Antonio Bianco, MD, PhD

May need to register with Medscape to watch. medscape.com/viewarticle/98...

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Lalatoot profile image
Lalatoot

The link is for the video and text of an interview of Bianco.

PixieElv profile image
PixieElv

I saw that too. and according to Bianco ‘if your TSH does not go up, then there’s nothing wrong with you’.

As someone with secondary hypo, this makes me want to cry…

Alanna012 profile image
Alanna012 in reply to PixieElv

From reading things he's said and the tone I pick up, I'm not a fan. Sorry to be a Negative Nancy.

He's said that he doesn't agree with the TSH being suppressed. He recommends only titrating T3/T4 till that point. He isn't against NDT but finds it problematic to manage due to different potencies and doesn't recommend it but will treat patients who are on it already. The tone in regards to NDT (as I read) sounds disparaging.

He doesn't appear to give credit to those who came before him

We have a situation where giving patients T3/combo is very much disapproved of. That has left too many people suffering. There is a second danger though....mainstream doctors and endocrinologists starting to accept that T3 can be safe and effective for patients that don't recover their health on T4 only, but then assuming dogma and putting it in guidelines that still results in patients remaining sick, with the result that their remaining symptoms must now provably be assumed to be 'something else,' because after all, you were given adequate levels of T3 and you are still reporting symptoms. We might agree that it is due to inadequate conversion of T3 if you were on monotherapy, but now you have been on a substantial dose of T3 and you are still not better, it's dangerous to increase your dose any further as your TSH will be suppressed ,and it is unlikely to make a difference yad yada.

Outcome the same, only now it's even harder to find someone willing to prescribe you the amount you need than it would have done before.

It actually might be more difficult to get adequately treated if the above assumptions hold total sway, than the situation currently where after a fight or scrapping funds to go private one can get treated till symptom resolution.

It might make it even harder unbelievably, to argue for a course of NDT.

PixieElv profile image
PixieElv in reply to Alanna012

I could not agree more. The insinuation is that if your data is ok, you must be ok. Irrespective of how you feel. It’s all in our heads…

TSH110 profile image
TSH110 in reply to PixieElv

I am NOT a number!

PixieElv profile image
PixieElv in reply to TSH110

😂 so true, but listening to our doctors you could think we are…

TSH110 profile image
TSH110 in reply to PixieElv

Or a disembodied thyroid, not a person!

healthkiwi profile image
healthkiwi

I read the transcript last nightmedscape.com/viewarticle/98...

and I actually found it positive, and potentially very useful. Yes, I know there are points against, but I can imagine patients who really need more than just Levo being able to print it out and take to their doctors, to get the discussion going.

I myself made a bullet point list of all the good points he made, because I was going to post it here - before I saw this morning that Guineapiggy so helpfully posted the video.

In fact my bullet pointed list got so long, I decided couldn't post it.

I think the transcript merits reading more than once. FULL of useful nuggets. I think every GP should be given a copy when treating any patient with hypothyroidism, and it's essential reading if patients continue to have residual symptoms after treatment with Levo alone.

It may not be 100% perfect, but it's a great overview.

And in some places, it's golden:

"why not listen to your patients and give them treatment they prefer?" ( !*#*!*#* BLINDING FLASH OF LIGHT - why not indeed! )

PixieElv profile image
PixieElv in reply to healthkiwi

I politely disagree. The quote in your last sentence is the issue. He makes it sounds like a choice. Like we could have Levo and be ok, but prefer something else and the good doctor generously agrees to it to keep us happy. Sad truth is, many of us don’t ‘prefer’ NDT or Combination therapy. Much rather Levo doesn’t work for us. I, for one, would much rather have Levo that is paid for by the NHS and not spend £130 per month plus private Endo consultation fees. But I can’t, if I want to lead any sort of ‘normal’ life.

But good if some of it was useful to you 😊

healthkiwi profile image
healthkiwi in reply to PixieElv

I agree with you, it's outrageous that for the substantial number of people for whom Levo is simply not an answer, their needs have been ignored, or worse belittled and dismissed. The waste of time, money, medical resources and most importantly people's lives is a tragic disgrace. (And if anyone wants their blood pressure raised, you could go to the comments by medics underneath the Medicare article itself - the resistance to hearing patients is still live and kicking 😡). But my reading of the podcast transcript is that Bianco is saying that the science / knowledge is expanding, he's changed his view and believes there is indeed a large patient group for whom Levo alone will never make them feel well. I like the fact that he seems to concede HE got this wrong in the past, and suggests that more research should be done to address the right questions and give us more knowledge on why NDT/DTE , or T3/T4 combos, get good results for patients. And meanwhile Dr's should think about helping their patients feel better.

Again, just my take on it, but Bianco has for better or worse been influential at the top of the hierarchy of Thyroid experts. So if this piece can bring even a small shift of perspective among the Thyroid Associations and their recommendations for investigations and treatments, it seems to me highly welcome. (I'm always impressed when an expert says I've learned more and I got it wrong .) Heaven knows we may need many more opinions like this to turn around the Levo-only juggernaut and improve the current deplorable ignorance among the medics on the front line.

Alanna012 profile image
Alanna012 in reply to healthkiwi

Dr B admits in a transcript I read, that he has had thyroid patients tell him he is wrong about TSH suppression, tell him they only got well when they dosed according to symptom resolution, that the thyroid pituitary axis no longer has much value after the introduction of T3.

But he has chosen to ignore them. He dismisses them very casually. So what happens when he has a patient in front of him who can't tolerate synthetic T4 (as I still cannot without side effects despite trying every year) even with T3 and/or whose TSH depresses faster than others?

In my case a mere 2 1/2 grains Thyroid S NDT suppresses my TSH. I no longer bother to pay attention to my TSH when taking T3. Just 15mcg added to levo will result in suppression. Am I necessarily well? No. There is no correlation between the two. But you see, I had a private GP phone me whilst on the thyroid S, to say I was getting into a 'thyrotoxic state' and needed to cut back on my dose. All based on my TSH. Fortunately he wasn't prescribing it for me, it was laughable as I literally had only started being able to walk around the local park without collapsing in exhaustion. Now if he was prescribing it for me and I was relying on him alone, I would have been in trouble.

Both fortunately and unfortunately, thyroid disease has grown increasingly trendy in the supplement, naturopath and alternative medicine world. You have doctors who are sincere and others who, to at least a certain degree, are chasing clout. Or to be more charitable, want to continue being mainstream doctors so aren't prepared to follow the evidence if the conclusion means they may be excluded.

PixieElv profile image
PixieElv in reply to healthkiwi

I guess you are right. Even a small movement on the doctrine is good.

Guineapiggy profile image
Guineapiggy in reply to PixieElv

That was my thought.

gabkad profile image
gabkad in reply to PixieElv

Prefer might not be the best word he could have used or the best expression. However, acknowledging that a patient's quality of life is of quality when taking NDT or comboT3/T4 is the point even if his choice of the word 'prefer' seems superficial.

TSH110 profile image
TSH110 in reply to healthkiwi

Inadequate dosage of thyroid hormones no what they are are not going to lead to good health

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