At my last doctor’s appointment my GP advised me that my thyroid was working optimally. I felt he was fobbing me off (for last few years and would not refer me to specialist), basically said there’s nothing they can do as bloods are within normal range.
Seen by a different GP today for pains in my shoulder (I believe from GERD) asked her about my thyroid testing and why they had never done a T3 and Reverse T3 test - she advised GP’s are not allowed to request this and could only be done through an endocrinologist. Asked if I’d like an appointment.
My question .. how do you get proper diagnosis and meds if the correct investigations are not carried out?? 🤷♀️
To others in the same situation I would insist on these tests too! Doctors far too quick to fob you off (perhaps a money saving exercise for NHS)
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Mona1966
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I was tested privately at the very beginning of my diagnosis by Dr Toft. He advised that NHS doctors do not do conclusive testing in order to medicate correctly 😬 I feel my levo dosage is incorrect, or could be from my fibromyalgia. Any way I’d like a specialist to confitt et m this. I can’t like with the exhaustion and pain 😢
You are very unlikely to find a doctor to test and treat rT3 dominance in the UK. Most of them are in the US and all of them seem to be expensive functional doctors.
I think rT3 is something desperate people cling to as a last resort. There is no conclusive evidence (only anecdotal) that rT3 messes with thyroid function.
If you take more T4 than you need, any excess will be converted to rT3 and then T2 and T1 and finally recycled.
Not only does rT3 seem to have a half-life of a few hours only, but levels also seem to fluctuate a lot during the day.
Paul Robinson, a UK thyroid patient and author of several books, says there is no special level of rT3 that is problematic.
A few years ago, I visited several US rT3 forums to see if I could find any reliable accounts of rT3 clearance. Some people tried to clear rT3 with T3 only and it did not work. I have yet to come across an account by someone who experienced what a doctor described as: ’Like pulling the cork out of a bottle of champagne; all of a sudden all that T3 that was prevented from entering cells can flood them’. If it really happened like that, I think we would hear about it all the time.
I think it is more important to optimise treatment on levo or add T3 if levo does raise your free T3 high enough.
I have no idea, sorry. But it seems most who have had a comprehensive thyroid panel had to do it privately. I am not sure rT3 can be tested in the UK (I have only read about people ordering the test from the US).
I had an rT3 test done in the US and my retirement insurance wouldn't cover it. I think that one of the admins said that it's not necessary. I will look at Paul Robinson's book, The Thyroid Patient's Manual (a must have for your library) and read about it again. In the meantime, don't spend money on the rT3 test.
GPs can and do test FT3 for us. Mine does it all the time for me. But others seem to pretend it's not allowed! God knows why. You seem to have one of them. Is there a different GP at your surgery to request it from? Full thyroid test of TSH, FT3 and FT4 done at the same time?
They will literally tell us anything. Eventually they will realise we are as capable of looking things up and talking to each other as they are and perhaps their fibs will stop.
I feel the need to correct the above reply since I am an AVID Paul Robinson fan and used his methods to correct my hypothyroidism using T3 only (I have all the DIO1 and DIO2 gene defects he has).
I have all three of Paul Robinson’s books in my hand now (The Thyroid Patient’s Manual, Recovering with T3, and The CT3M Handbook) and while he does say that he hasn’t nailed down exactly how much RT3 is too much for any specific individual, he ABSOLUTELY believes that RT3 is VERY important in addressing one’s hypothyroidism, and that RT3 definitely DOES slow down metabolism acting as a brake on T3 and causing hypothyroidism symptoms. He states this MULTIPLE times throughout his books, but you only need to read page 26 in The Thyroid Patient’s Manual to know exactly what he thinks about RT3.
Granted this is only Paul’s opinion, but it is based on not only his own research but he quotes many studies that back him up.
Even though anecdotal, I personally found that when my RT3 was approaching mid-range or higher, I felt my thyroid meds weren’t working.
The problem with rT3 is that it fluctuates, so you would need to measure it several times a day to know your levels at a given moment. Also, we cannot measure what happens in the cells, so how can we know they have been cleared of rT3? That whole reasoning sounds unscientific.
Also, how would you know exactly how much T4 to take to stop rT3 levels from rising? Measure rT3 daily?
Yes, very unscientific, but I can only relate my experience. For me, each time I raised my T4 from 75mcg to 100mcg, my RT3 would consistently rise from the lower qtr of the range to just above midrange and I would feel worse/more tired. I am a lab nut so would get my RT3 tested with every qtrly thyroid lab test I did (which is apparently easier to do in the US than in the UK). I would also test at 7am each time to try to take some of the variability out.
However, my point to my previous post was mostly just to correct what Paul Robinson’s thoughts are on RT3, since he knows a lot more about it than me.
Well, Paul says on p. 26 in the Manual that low T3 and high rT3 is a marker of slow metabolism. Which makes sense if you are on levo and more of it converts to rT3 than free T3.
But others advocating treating high rT3 claim that rT3 dominance presents with high free T3 as rT3 prevents T3 from entering cells so it stays in the blood (’the T3 pooling theory’). Some will say people with high rT3 have low FT4, others that they have high FT4. There simply seems to be no consensus among ’experts’.
Both camps cannot be right. And it is all the contradictory information about rT3 out there that made me decide that it is not worth paying any attention to.
Think about it: T3 stays in the body for a few days, T4 for up to six weeks. Yet, rT3 is said to stay in the body for 12 weeks or even longer. That is why patients clearing high rT3 are advised to take T3 only for at least that long (longer if they are still symptomatic after 12 weeks…). But how can rT3 stay in the body for several weeks after all the T4 is gone, since rT3 can only be made from T4? And why would all the rT3 in all the cells magically clear at the same time? What would be the mechanism behind that phenomenon? It simply does not make sense.
Also, how are you supposed to know what caused your high rT3? Too much T4? Calorie restriction? Heavy metal poisoning? Gut problems? Estrogen dominance? High or low cortisol? Beta-blockers? Antidepressants? Liver congestion? Vitamin or mineral deficiencies? Or any combination thereof? The list goes on and on. No book or article I have ever read on the subject will help you identify the root cause.
If we assume for a moment that you stay off T4 for 12 weeks, you would need to identify the reason(s) you have high rT3 to begin with, then address it/them in order for rT3 not to go up again when you add back T4.
The failure of all advocates of the rT3 dominance theory to provide clear answers and guidance on that makes me think it is irresponsible to call rT3 a problem and offer a short-term cure, without explaining how you developed it in the first place or how you avoid it becoming a problem again after clearance.
I understand your points and I am certainly no expert, but my very limited experience with T4 and rT3 was enough to convince me that, for me, T3 only was at least worth trying….and I’ve never felt better. I had my rT3 tested before ever going on T4 and it was 10 with a range of 9-24 and it went up to 18 - 20 after getting to 100mcg T4. I suspect in my case my raised rT3 WAS due to too much T4, but certainly that won’t be the case for everyone.
Andy, you do know that 30% of all T4 is always converted to rT3, don't you? Whether it's T4 made by your thyroid or taken as levo. So, if starting levo raised you FT4 level, you rT3 level was obviously also going to rise.
May well be true but some more info from my experience:
When I increased from 75mcg T4 to 100mcg and no T3, both my FT4 and FT3 stayed nearly the same (FT4 stayed mid-range and my FT3 went from 2.3 on 75 (range 2.4-4.2) to 2.5 on 100) and I actually felt worse (even more tired and depressed) on 100 than 75, which is why I converted to T3 only. (I am homozygous for the main DIO1 and DIO2 gene mutations so I evidently convert poorly). I figured it was because my rT3 had increased from 12-13 on 75mcg T4 to 18-20 on 100mcg since I made no other changes other than my T4 dose during this time.
Anyways, no need for me to keep belaboring this …. I just wanted to relay my experience since I spent a lot of money on all these darn labs! 🙂
I think it may be important in some as yet to be fully recognised way. I think you have at least approached this in a scientific way. Even if nothing can come of it (on the face of it) for many patients, it’s a good ‘bank’ of info for you.
It’s a bit like discovering old blood tests which were ignored by doctors at the time and watching your undiagnosed hypothyroidism roll out, whilst they do sweet FA. The more testing done around this issue of hypo, the better in my book. We need more banks of info and the NHS is clearly avoiding that. Ok it’s expensive, but you have at least been able to observe and correlate it with your changes. Genetic testing is expensive too, only to be ignored by medics. We will go on seeking, I have no doubt and rightly so.
It is very complicated! I have yet to find a single person who successfully cleared excessive rT3 by identifying its source(s) and then managed to keep it low enough for long-term/permanent symptom-relief.
The Thyroid Patients Manual was published in 2018. So, obviously written before that. Research has moved on since then. It you want to know the latest thinking on rT3, check out Thyroid Patients Canada:
Just buy your own test. Randox health do a good one for around £29. I too have fibro. My thyroid is within range but not optimal I'm looking into treating it myself to see if it helps
I was under the impression for years how important RT3 was. Being with this Great Forum I've learned from GG and Helvella that it's a waste to do it. Having FT4 and FT3 and TSH with nutrient markers are what is very Vital . It's just one less thing to argue about with the Dr's.
My GP always has my T3 tested at same time as T4 and TSH. Originally, I was told that only one GP knew how to achieve it. Now it seems all at the surgery are able, but you may have to ask. Maybe it’s because they work closely with the endos at the local hospital. And I was told by a private endo to go T3 only. And I have never asked them to prescribe the T3. Originally, I bought it from Germany with an NHS prescription that the GP gave me. Since Brexit, I’ve bought it online. Each time 100x25gsm for about £11+ postage of around the same price.
Perhaps, if you didn’t ask them to prescribe a medication that is so expensive from the NHS, they might be more prepared to be helpful. Mind you, from what I’ve read here, the average GP knows very little about our problems!
I have seen (in person, and in posts/replies) numerous occasions on which a Free T3 test has simply been refused - whether by a GP, or by the lab, and whether it is stated or simply ignored (not performed and no result returned).
Assuming you’re in the UK, you can get your own private blood tests done. Some of the companies will test RT3 if you’re set on getting it done but as others have said, it doesn’t tell you anything particularly useful. Some websites will try to tell you it does but that’s old info and debunked.
I think Sunflower64 was making the point that though you can buy an rT3 test in the UK, it won't actually be assayed here. Other than in the context of research, I'm fairly sure I've never seen evidence of an rT3 test being actually processed in the UK.
T3 will be tested by endo, certainly mine does. And since I now take Levo and Lio, the gp has realised that they now have to test for T3 too. I don't convert T4 so hence the medication.
Mona, you might find this video very useful to watch if you haven't already, that one of our members shared to the forum the other day. This private thyroid Dr explains why nhs Dr's can't or won't test and prescribe t3. She also explains how peri and menopause can affect your thyroids too. She believes all thyroid patients who don't get full symptom relief on t4 should be on combination t4/t3. She also knows how beneficial NDT and isn't scared to paint the finger at big pharma as to why we can't have it prescribed.
This Dr knows her stuff and thank you Tara for sharing it.
All of my thyroid testing forms are requested by the endo and sent through to the gp. These always include T3.
Unexpectedly I had to see my gp for a different problem and she ordered all the thyroid tests as well as the usual work up tests. I was surprised but said little. The gp looked at me oddly as if "why wouldn't you do T3 and get the full picture?"
She is a lovely junior doctor, obviously just doing the gp stint of her progression in medicine.
I do hope nobody tells her differently, for other patients' sake. !
Hi, if this is of any help, it is from Dr. Izabella Wentz (thyroid pharmacist):
As an essential mineral, iron is important for many reasons related to thyroid metabolism. Iron transports and affects the body’s utilization of T3. When ferritin levels are low, this can cause elevated reverse T3 levels, which blocks receptors for free T3 (our active thyroid hormone), resulting in thyroid symptoms. [3] Low iron may also reduce the binding ability of free T3. [4] This can occur even if someone is on levothyroxine, leading to that common dilemma of having thyroid symptoms, despite taking thyroid medications.
Additionally, some studies suggest that iron deficiency can inhibit the conversion of T4 to the active T3 thyroid hormone. [5]
I had rT3 tested once or twice - it showed elevated #s, but neither the endo nor I were concerned about it. It did not change how I felt, which was good. I "educated" the endo I see on the benefits of FT3 testing. Like your country, my experience in listening to other people w/ord's/hashis in US is FT3 testing is waived off by most GPs & endos. I think it is because they don't know what to do w/the test results.
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