A discussion on T4/T3 therapy

[diogenes]

This review discusses trends in the use of combined therapy. It still clings to normal TSH as a must and also makes the mistake of trying with therapy to get the "right" FT4/FT3 ratio (as euthyroid) as a symbol of success, when it is known that for athyreotic patients it isn't possible. Nevertheless the fact that it is given a review of some length shows increasing interest in this. Downloadable.


Current Medical Research and Opinion

Volume 37, 2021 - Issue 12

Triiodothyronine alongside levothyroxine in the management of hypothyroidism?

Ulrike Gottwald-Hostalek & George J. Kahaly

Pages 2099-2106 | Received 30 Aug 2021, Accepted 20 Sep 2021, Accepted author version posted online: 23 Sep 2021, Published online: 12 Oct 2021

•doi.org/10.1080/03007995.20...

[helvella]

Note this statement from that paper:

Nevertheless, better-standardized FT3 assays, with measurements made before ingestion of the day’s thyroid medication may provide a useful adjunct to thyroid care for patients without concomitant, non-thyroidal disease (such as many of the large population of younger patients with hypothyroidism).

Not entirely clear whether they mean the "before" applies only to those on combination treatment - or to all taking thyroid hormone medication.

And while "better-standardized" testing might be desirable, lack of that should not undermine trying combination therapies. Consistent within lab is probably sufficient if the patient can always be tested at the same lab.

[diogenes Remembering in reply to helvella]

Agree, assuming that a given FT3 assay is not variable in itself.

[Poniesrfun in reply to helvella]

What is needed is a home based point of care device to measure FT4/FT3 similar to a glucometer. I have made several forays over time seeking support from various manufacturers of innovative home testing devices with little response. I'm sure it would be a money maker for someone and the technology does exist. I would purchase and use one even without FDA (or European equivalent) approval - much like the keto meters now available, and even if the test strips were expensive. (For example, an iStat cartridge, used in hospitals and some doctors offices, costs an average of $15-$25US.)With proper education we are not stupid - if a diabetic child can monitor and adjust with their insulin doses, a properly educated adult can't monitor and figure out their T4/T3 needs? Despite what some would like us to believe, it is NOT rocket science.

[helvella in reply to Poniesrfun]

I very much agree - in principle.

Currently, we are seeing rumours about the Apple Watch expected towards the end of the year. Some claim a blood glucose facility. Also suggested is a body temperature measurement. And, possibly, other things like blood pressure. They already have blood oxygen, heart rate, single line ECG, etc.

Even if it is not possible to develop a reliable FT4/FT3 sensor at that scale (with or without consumables), we might see a collection of other measurements which together are indicative of thyroid hormone issues.

Obviously, other companies are also working on such ideas.

[tattybogle]

very encouraging . thankyou diogenes.

[Musicmonkey]

Well this might not be entirely on point, but as you say, raising awareness is important in itself.

[Hennerton]

Thank you, Diogenes for posting this and at last I see it suggested that patients without a thyroid might be treated differently to straightforward underactive thyroid patients. Why has it taken so long, when clearly someone without a thyroid is in a more precarious position every day of their lives than someone whose thyroid is woefully low in producing T4 but is nevertheless still intact?

[Musicmonkey in reply to Hennerton]

Careful Hennerton ....not all underactive thyroid patients are straightforward either. As far as I know I have a thyroid, however it certainly doesn't function as it should. I don't have autoimmune hypothyroidism. I don't seem to have Primary hypothyroidism. I know I have at least one faulty gene. I need the addition of T3 to feel somewhat normal.

Having said all of that I agree that people with no thyroid need to be treated accordingly, taking that into account.

[Hennerton in reply to Musicmonkey]

Yes, I do understand but if, for instance, you are rushed into hospital, you do not need to fear that doctors will not know you have no thyroid and/or will fail to treat you properly with both hormones, because they are convinced that Levothyroxine is all that is necessary, or worse, have never really understood what T3 is all about. One of the doctors in my practice tried to convince me that T3 was turned into T4 by the body. I pointed out that it was the other way round but it did not fill me with confidence.

[Musicmonkey in reply to Hennerton]

On the contrary! I have spent 5 years fighting to get an NHS prescription for that very reason. My 1st appointment with an Endo led to him asking me to self-source T3. I was very concerned that should I need to go into hospital, the staff would not give me the T3 I had privately sourced (I know of someone that had happened to). All I'm saying is being thyroidless is not the only concern. Having poor conversion leads to similar outcomes.

[knitwitty in reply to Musicmonkey]

I agree completely. I have been self medicating with T3 for 3 years following the advice of the NHS endo. I too worry what would happen if I needed to go into hospital in an emergency. I would not be medicated with t3 because I buy it myself.

[Hennerton in reply to Musicmonkey]

Quite agree about poor conversion and I have that too. It was the only reason I managed to get a T3 prescription on the NHS. My blood test showed I was well under range in T3 but over range in T4 - classic scenario for poor conversion.

[Musicmonkey in reply to Hennerton]

😢😢

[waveylines in reply to Hennerton]

I do indeed worry that the medics wont understand thsts its important to give me my thyroid dose daily and before food. My thyroid was not removed, however it does not work. I am on a full replacement dose amd have been for over 15 yrs. Im also on a ndt that the medical proffession just do not understand any more.

Whenever I have to stay in hospital I insist I take my own thyroid meds. Last time I went in they expected patients to self manage all their own meds previously prescribed. And they got patients to sign a disclosure form. I presume releasing them of all liability. So little is about mecicine these days- so much is just about covering their backs.

[Hennerton in reply to waveylines]

I am delighted to hear that we are expected to manage our own medication, as I have a box all ready to take with me if I need to be rushed in. But what happens if we are “away with the fairies” on strong medication, or so unwell that we cannot possibly look after ourselves? Who remembers my medication? Not the nurses for sure, as they are much too busy.

An additional worry that someone medically qualified may understand is that I believe our body reduces T3 production in times of severe illness. There is obviously a very good physiological reason for this. Do I carry on taking it if I am well enough, or do I try to emulate what my lost thyroid would have done? I think that is probably a rhetorical question, unless Diogenes picks up on it.

[waveylines in reply to Hennerton]

If you signed the form you are liable for managing your meds....if u don't manage it then they are not liable. Otherwise you have to hand it over.

Re lower T3 in illness. Never heard of this. My oncologist wanted my ft3 high in range to fight my illness & included recovery from operations not low. He was appalled when a private endo wanted to get my levels low. It doesn't make sense to me but then I'm not a medic! I just did what the oncologist said & that worked very well!

[Poniesrfun in reply to Hennerton]

I have already encountered a hospitalist who had not bothered to find out that I do not have a thyroid. If I followed his advice I'd be a blubbering idiot, if not dead.

[RedApple in reply to Hennerton]

Hennerton 'at last I see it suggested that patients without a thyroid might be treated differently to straightforward underactive thyroid patients'

I have quickly skimmed through the paper but must have missed that bit. Can you clarify where this is suggested please (by copying and pasting the relevant bit here perhaps)?

I also don't understand why having autoimmune thyroid disease, or any other form of so called 'underactive thyroid' is straightforward? A 'dead' thyroid can't produce either of the thyroid hormones under discussion, any more than a non-existent thyroid does. So why would treatment need to be different?

[Hennerton in reply to RedApple]

I seem to have inadvertently stirred up a number of members, which was never my intention and of course I apologise.

It is simply that almost all studies I have read refer to patients with a thyroid and please believe me when I say not having one is a source of constant regret and fear for me. In fact I told the last endocrinologist I saw, who was fabulously sympathetic, that it is the greatest regret of my entire life that I so gullibly went along with my former endocrinologist’s suggestion that as I could not get the dose of carbimazole right, and as I was wildly overactive with Graves’ disease, the best route was a thyroidectomy. How naive I was in those long ago days. He promised the “little white pill” would sort everything. We all know the truth.

Of course I understand all your issues too but why do most studies refer to patients with thyroids? It is rare for patients with a thyroidectomy to be included, so I was simply delighted that someone had recognised our needs at last.

In the end, we are all reading from the same page. We need kindness, understanding and some good studies to ensure that never must a patient endure a doctor telling him or her that the TSH blood test and the little white Levothyroxine pill are the answers to a healthy life with an ailing or non existent thyroid.

[RedApple in reply to Hennerton]

Hennerton, 'I was simply delighted that someone had recognised our needs at last.'

But where is that written in the paper? Please point us at it so that we can better understand what you're referring to. 🙂

[Hennerton in reply to RedApple]

It is under the section Limitations: Potential for abnormal T3 homeostasis.

[Hennerton in reply to Hennerton]

Hello, Red Apple, just wondering if you have tracked down the section on thyroidectomy in the study Diogenes posted?

[RedApple in reply to Hennerton]

Sorry Hennerton, have been busy with other admin duties and forgot to come back to you!Yes, I think this is the bit you're referring to:

Limitations: potential for abnormal T3 homeostasis

LT4 is essentially a prodrug for T3, the thyroid hormone that acts on target tissues in the brain and the periphery, as described above1. It has been shown in one study that TSH-driven treatment of thyroidectomized patients with LT4 was able to produce normal T3 levels, although the level of FT4 was elevated18. Conversely a prospective study of 133 subjects following total thyroidectomy showed that mildly-suppressed levels of TSH (0.03–0.3 mU/L) were required to stabilize other thyroid hormone levels to their preoperative levels19. Elsewhere, the conversion of LT4 to T3 in athyreotic patients was highly variable, with reduced FT3, suggesting that the deiodinases in peripheral tissues were unable to normalize the level of FT3 in the absence of physiological T3 secretion from the thyroid20,21.

tandfonline.com/doi/full/10...

[Hennerton in reply to RedApple]

Do you not find it interesting? It is for me and the last description of patients is definitely me. I was a total mess until one of my clients, who had recently had a thyroidectomy and was seeing a private doctor in London, mentioned the magic words T3. I had never heard of it but she was so positive and could see I was so ill, that she persuaded me to ask my GP for a blood test of free T3. A week later he phoned and said, “ you are quite right. Your T3 is well under the reference range”. “Oh,” said I, innocently. “Well can I have a prescription for T3, please?”“Oh no, I cannot give it. You will have to see a private endocrinologist”

So I did see one privately and he gave me my first ever private prescription. Next time I was at my surgery I casually asked if I could have an NHS prescription and the amazing answer was yes.

How life has changed. It is such a disgraceful situation for very unwell thyroid patients.

,

[TSH110 in reply to Hennerton]

They often do research on young men with no thyroid disease - how bonkers is that? You get to understand thyroid disorder by not studying it but looking at fit young males without thyroid disease - well only the men in White coats (keeping us ill) could come up with such a absurd study design.

[Poniesrfun in reply to Hennerton]

Hennerton - on the thyroid cancer boards I volunteer on I do often mention that it is "different" for someone without a thyroid vs thyroid dysfunction. But mainly that is because the "advice" sometimes given on some sites (not this one) contains (IMO) quite a bit of woo and information which, even when accurate, is not applicable to someone without a thyroid. (And this is even separate from the "cancer" issues.)

[Localhero]

Interesting, diogenes .

I’m glad to see more interest in this, even with the usual blindspots. Thanks for sharing.

[jgelliss]

Thank you Diogenes. This sounds hopeful and I hope promising 🙏 too.

[waveylines]

Thanks Diogenes. Always appreciate your posts. Baby steps but st least a move in the right direction for a change! Frustrating that they're still hanging onto 'normal'TSH level. It doesn't make sense & that's why its so hard to argue back!