I am on mono t3 (as I cannot get on with T4 only or even T4 in combo with T3).
My latest blood results from my doc with the reference ranges are:
TSH < 0.02 [0.38 - 5.33]
Free T4: <3.3 pmo/l [7.9 - 14.4]
Free T3: 7.1 pmol/l [3.8 - 6.0]
It makes sense my TSH is suppressed due to it not being needed to work the same due to artificial supplementation, same with the T4 being low as it is not needed. but I am so anxious my endo will take T3 away from me that I fought so hard to get when they see the results, especially the TSH.
Advice from those on T3 monotherapy> Am I overmedicated? I certainly do not feel hyper - quite the opposite, in fact, which is why I had recently upped the dose from 60 mcg over two doses of 30 mcg 12 hours apart to a little more.
Any advice please as I want to have the info to argue my corner where necessary for my appointment with my endo soon? Thanks
ps. It is thanks to advice/info from the group that I was able to argue with the NHS endos (what a scenario) and address their counter arguments and finally get it. I was in tears when they said yes. So thank you.
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Pinkpanther2022
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I'm guessing your endo is a TSH freak? Well, reducing the T3 by enough to get it back into the FT3 range wouldn't have the slightest effect on the TSH. It would still be suppressed because that is what T3 does. And, you know that that is because you don't need it, your body is getting all the thyroid hormone it needs exogenously so not point in your pituitary trying to stimulate your thyroid. And, you don't need it for anything else, either. TSH has nothing to do with hearts or bones. If you suppress it you will not automatically have crumpbling bones, and neither will you suddenly drop dead of a heart attack.
The idea that we need TSH to prevent heart problems and osteoporosis comes from bad science and lack of understanding of which came first: the high T3 chicken or the low TSH egg. I call it putting the cart before the horse - which the medical profession is very good at! The problem is they can't see the difference between a suppressed TSH due to long-term, extremely high Free levels due to hyperthyroidism/Graves' - which would increase your risk of heart and bone problems, but due to the high FT3, not the low TSH (the two go together) - and, suppressed TSH caused by slightly over-range FT3 when taking exogenous thyroid hormone replacement. In the latter case, the FT3 would not be high enough to cause those heart and bone problems. And, in any case, the risk is only slightly increased, it's not a given.
What's more, we're only talking about levels in blood here. And while it's still in the blood, the T3 doesn't do anything. It has to get into the cells. And there's no way of testing what gets into the cells. So, a lot of that T3 in the blood could be being converted into T2 or simpley excreted, not having had any effect on anything whatsoever. If people only feel well when their FT3 is over-range, one has to consider that they may have a certain degree of thyroid hormone resistance, and the T3 just isn't getting into the cells.
And, finally, we have to consider: what is a 'range', anyway? Is it really significant? And to answer that question - both for yourself and your doctor - I can't do better than give you this link to an article on the subject:
The normal range: it is not normal and it is not a range
My endo is NHS, and they have their hands tied somewhat in criteria etc from the higher-ups who all seem to be TSH freaks. That they have prescribed me T3 at all is a miracle. I am extremely "lucky" to get it at all, I know that much, it took me many years of fighting and it's bound by postcode lottery.
I felt amazing on it for the first couple of months and then didn't after about 8 weeks. The endo said that might be because of the placebo effect ... not the fact my body may have got used to it and I should up the dose or anything...
Placebo effect! Pft! They would make me laugh if they didn't make me want to cry. Given that a healthy thyroid naturally produces T3 and a healthy body naturally converts T4 to T3, how could it be a placebo? What an ignorant thing to say. But, then, I shouldn't be surprised because I've heard so many ignorant things coming out of the mouths of these supposedly intelligent people. Makes you wonder, doesn't it.
But, your body doesn't 'get used to it', either. What happens is that when you first start taking it, the body is so relieved to be getting any at all that you feel well for a while. But, after a while, it becomes obvious that you're not taking enough and the body wants more. With all hormones it's essential to start low and increase slowly. With T3 that means starting on 5 mcg and increasing by not more than 5 mcg not less than every two weeks, until you reach your 'sweet-spot'. When that happens, you won't feel the need to increase anymore.
It's criminal that we have to fight so hard to get something that is essential for life. But, it's all down to ignorance. They wouldn't treat diabetics like that with their insulin!
Ah, but according to one endo I saw to whom I put that comparison, diabetics will die without their insulin… I won’t if I don’t get my T3 as the wonderful, marvellous, magnificent, phantasmagorical T4 will do the job of keeping me alive! He was trying to take my T3, almost monotherapy, away from me and put me back on T4 only which had kept me like a zombie for the first 7 years after being diagnosed hypo. Thankfully, he was based in England and I live in Wales where he has no jurisdiction and I kept my T3!
Well, if your T3 is too low, as it is in people who don't convert well, it will cause heart problems and such like, that will kill you. Eventually. It would just take longer and be more miserable and painful, that's all.
Well, if your T3 is too low, as it is in people who don't convert well, it will cause heart problems and such like, that will kill you. Eventually. It would just take longer and be more miserable and painful, that's all.
It kills me without it. Like I have no life. And on a few occasions I feel so chemically low, I have been suicidal.
The problem is, they don't care how we feel! I always thought a doctor was there to make you better. But, where thyroid is concerned, apparently not. And, if you tell a doctor you are suicidal, they'll whip you off to a mental hospital and say it's all in your head! They have built up a system around thyroid where the patient can never win.
Also try telling a doc I know the difference between an inexplicable-by- factors/thoughts chemical low compared to "normal" depression/stress. They are more than happy to throw antidepressants at you
Oh they love prescribing antidepressants! They always try to slip those in. And yet refuse to supply our natural antidepressant: T3. But, it's all to do with money, not the patient, I'm afraid.
I always thought a doctor was there to make you better.
I really wish I could remember where I read this...
A patient was saying to their GP how their prescribed meds (I can't remember if they were thyroid or something else) didn't make them feel any better. The GP's reply was "We aren't here to make you feel better, we are here to fix your blood test results."
Good lord! That's unbelievable. Well, it would be in any other universe. I suppose that just about sums it up in this one. But why would one even want a job like that? Making people well is noble and satisfactory. Fixing blood test results must be like working in a factory. Soul destroying!
Yes, I've hoped that the pedestal the medical profession stands on crumbles very soon, and we can have more honest relationships between doctors and patients.
The problem for me is that many of my ncbi links stopped working ages ago, and I haven't managed to fix the problem, so I always have to look for alternatives.
The idea that doctors are here to fix blood test results is confirmed (for me) by all those appointments I've had with doctors that boiled down to ...
"Good news Mrs HB, your blood tests are all normal" followed by a big smile and an expectant look while the doctor waits for me to touch my forelock, say "Thank you", and then leave.
Yes, I know that attitude. Other good ones are: your thyroid is stabilised! What the hell does that even mean when I still feel like something the cat dragged in?!? Or: Perfect! Your TSH is exactly in the middle of the range! lol Why middle of the range is such a magic number I really don't know. Oh, well...
Oh yes, for example doctors were happy that my TSH was stabilised between 5 and 6 for years. In fact so happy were they that they never talked about it. I only found out when I got copies of some blood test results in 2011.
Based on my TSH never progressing upwards I was assumed to be a healthy, drug-seeking whinger, and that attitude bled into every appointment for any reason whatsoever, not just thyroid-related.
They are so narrow-minded! They can't see further than the end of their noses and completely lacking in diagnostic skills. They give the impression that they hate and despise their patients. Why do a job where you hate the people you have to deal with? As far as I know, nobody forced them to become doctors.
The endo did say that about the first few months magic quality of life (I was actually able to do stuff and walk a little) being placebo - a placebo that I have been literally fighting years for ... but they kind of contradicted themself by my bloods (a few months) ago and seeing the magic TSH had gone down from near 10 to under 0.05 in a few months which kind of shut them up. My bloods and the loss of swelling in my legs and hands are not placebo.
They also told me to split the T3 last time due to its half-life to raise my FT3 which was low (going by the NHS range) last time so they are trying and do know something compared to other endos.
They also told me I was badly hypothyroid before. Which was great to hear from an endo because all the docs before think a TSH under 10 is not that bad really. The endo also agreed with my go-by-hypo-symptoms-over-TSH argument (try telling a GP that!)
I should not have to be in tears anticipating the argument at our next appointment though...
They also told me to split the T3 last time due to its half-life to raise my FT3
Well, no, once again they are showing their ignorance. Admittedly it is best to split the dose the day before the blood draw, but over-all that is not going to raise your FT3 if you're still on the same dose because there should be a gap of 8 to 12 hours between the last dose and the blood draw. The half-life of T3 is around 24 hours - not 6 hours or something that many of them seem to think. But what gets into the cells - which is the most important point, and unmeasurable - stays there for about three days. And, do they even know what a half-life is? lol
No, you should not have to be that fearful before an appointment. It's criminal what they make us endure through their ignorance.
Hi GreyGoose, have there been any studies done which counteract the "low TSH is bad mantra"? I'm on two grains of Armour a day, my TSH is 0.008 with FT4 middle of range and FT3 near top of range and I feel great. My thyroid doctor said my bloods look spot on and not to be concerned about my low TSH. I'm on Rachel Hill's Invisible Hypothyroidism Facebook group page and whenever my very low TSH might come up in conversation, I get a load of comments about how my bones are going to rot, I'm going to get a heart condition and my thyroid prescriber is completely irresponsible. To the point where moderators even turn off the comments to prevent me from responding. Is there a paper that you would use to counteract this TSH mantra?
Yes she's not medically trained. She's a hashimotos patient advocate. She wrote the book "Be Your Own Thyroid Advocate". Her Facebook group has 100k followers so she's quite influential. I like her work and she's quite open about being on Armour and the benefits of it. She writes great, informed and concise blogs about a variety of things to do with hashimotos. She has moderators on the Facebook group though and they are very fierce about shutting down any discussion about low TSH not necessarily being problematic. Although I don't know if that's what Rachel actually thinks!
I am also in the process of switching to T3 only. I have been doing it 4.5 months. My results on 75mcg (total day) are nearly exactly the same as yours: TSH near 0, undetectable FT4, FT3 slightly above range (taken 12 hours after last T3 pill).
I feel very very good during the day on this compared to T4. It is like night and day. I can walk reliably, great energy, mood and far better outlook compared to the misery of the last decade.... and I say this whilst definitely out of any placebo/psychosomatic phase after doing this 4.5 months. Many other metrics have improved too, such as eGFR (they thought I had stage 3 kidney disease, I do not, it was just impaired renal flow from being chronically hypo on levothyroxine).
I also had the situation that I would increase the dosage, feel great, then feel flat again, until I did the next dosage increase. I don't believe that is placebo at all. I think it has been my body desperate for more T3. Now I feel pretty good after being on 75 for a month and the feeling of wellness does not seem to go away.
I feel that blood test results just aren't that useful on T3 mono, and symptoms are far more useful.
I haven't got it quite right just yet, because I have blanket insomnia and hugely elevated morning cortisol which starts to peak about 6 hours too early and wakes me up like a shotgun.
I guess I should make my own post about my own situation soon to ask for help, but just wanted to contribute because I feel I am at a similar stage and at similar levels I just feel... good (aside from the insomnia / hypercortisolism).
I also have terrible insomnia.. ever since hitting the menopause, long before touching T3.
My liver and kidney things and other things like inflammation markers also went down on T3, like you. It is not just the thyroid bloods that look better on the "placebo".
I have been trialling T3 for past 14weeks, after many years of fighting for it on the NHS. My endo is also a TSH freak and I have been told the trial will be stopped, if the TSH stays suppressed. ( my TSH has always been suppressed) So thank-you for all this fabulous information It will help me so much to fight my corner. Felt great on T3 for the first nine weeks, but not all of my symptoms have left me. Still have a lot of skeletal and muscle issues, I do know my private bloods show Both T4 &T3 60% through range TSH suppressed. which I thought was good, now awaiting results for NHS bloods, to find answers for my muscles and bones.
Are you supplementing key vitamin levels that are low or deficient - ferritin, folate, B12 & D3? Thyroid hormone doesn't work well unless these are at OPTIMAL levels.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
I'm going to bookmark this question with the replies, as I have a very similar one that I've been meaning to ask for a while now. My TSH is similar to yours, and my T4 is even lower at <1.4 pmo/l. In fact, the last 2 blood tests I've had, my GP surgery have had an actual GP phone me in a total panic asking if I'm taking my thyroid meds (and seemingly not understanding that my T4 is going to be pretty unreadable because I'm on T3 only medication!).
I've forwarded my results to my NHS endo, and he hasn't contacted me in a panic (which I'm taking as a good sign). Like you, I had to really fight to get my T3 prescribed. Now that it is, and it's moved over to my GP prescribing it, my endo doesn't seem to care (his first question to me during our last phone call was who is funding your T3!). It probably helps that my GP surgery is in a different ICB to the hospital where my endo is.
I've been slowly increasing my T3, in fact have just made a small increase today. Up until then I was on 70mcg, split into 2 (unequal) doses, and it wasn't really helpful. Everything has been slow, I've played about with changing to 3 doses, but that didn't help so have gone back to 2.
I suspect I have some kind of thyroid hormone resistance, but it is scary when you're on T3 monotherapy, as the advice gets less and less, and every time I add 5mcg I get a bit worried.
Compared to how I felt on levothyroxine, and T4/T3 combined, I'm much better than I was, but I'm nowhere near better. I've spent a long time doing all the things recommended on here (making sure vitamins and iron are in a good place, going gluten free, doing a dairy free trial, and more recently, checking my cortisol). All that's left for me to do is find that 'sweet spot' with my medication. I really hope it doesn't take too much longer.
Anyway, thank you again for asking the question (saves me a job!) and to everyone that has replied. Going to read all the replies thoroughly.
TSH measurements should therefore be interpreted conditionally and differently in subclinical hyperthyroidism and thyrotoxicosis. (from sciencedirect.com/science/a...
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