Hi - many thanks for everyone's responses to my questions last night. Things have got worse today after my visit to the GP so I wanted to ask a specific question. Thanks to this forum and Dr P, I've been on T3 only therapy (Dr L's protocol) for around 10 years now - 75mcg. My original symptoms indicated hypo.
When I went to the GP last week for something else entirely they found my heart rate was very high. They also did blood tests and found that my TSH was suppressed and T3 very high. Of course, with T3 only, your TSH *IS* suppressed and T3 very high. But the GP is panicking about this and wants me to come off T3 completely because she reckons this is what's causing my high heart rate.
So my question is:
*What happens if you've been on T3 only therapy for so long and come off it suddenly?*
I asked the GP whether my body will automatically start producing TSH, T4 and T3 again and she has no idea! Any advice please? I'm very scared about this. And, from the forum, it looks like Dr P is no longer practicing so I have no-one to ask.
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CarolineC57
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Am afraid this GP sounds like many others ! Scared of T3. As mentioned on your other post I was recently very unwell with HIgh BP and made my first trip ever to A&E. I missed the dose the next day and BP reduced. I re-started at 31.25mcg and no ill effects whatsoever. It was during the heatwave so probably needed less. Also a change from a very busy Greek life to a quiet one on moving back to UK in 2019. Less energy - so less requirement for T3
Phone acting up ! Your T3 result will be high as we need to leave at least 8 hours netween last dose and test. I would reduce your dose and monitor your BP - in both arms x 3 and average out. If you are brave - skip a dose 🌻
Yes, this is what I think is going to happen to me. But the doc is adamant that the T3 is causing the high heart rate and that I'll have a heart attack if I don't stop it. I just don't know how to persuade her otherwise.
When I was on levothyroxine, I had many 'middle of the night palpitations' that even the Cardiologist couldn't figure out what was going on. At times it was over 144.
When T3 was added to T4 I felt an improvement immediately and I therefore went onto T3 alone. I had no need for the Cardiologist after taking T3.
I am now fit and well and symptom-free and take T3 alone. I am fortunate to have it prescribed.
I have had some stupid comments from one of the GPs at the surgery and once I told him 'I'm 'sorry doctor that is incorrect you are wrong". He couldn't respond .
I’d tell her I would rather have a life where I felt well and accept the risk of it ending sooner than living a longer life of sheer hell becoming increasingly unwell and wishing it would end sooner!
Where have you heard this? Dr Peatfield certainly didn't die "a few years ago", he retired as he was in his 80s and not in good health, but nobody has heard that he has passed away.
You are right and I had also consulted with both - Dr Peatfield as well as Dr Skinner.
I am aware that Dr Skinner died at his workplace and that his employees were devastated and they had also collated all of their 'history of thyroid etc' and hoped to publish their scientific evidence and said that it would shake up the whole of the method of diagnosing/treating patients.
I definitely don't think you should take this doctor's advice! She has no idea what she's talking about. Stopping 75 mcg cold turkey is not a thing to do. The reaction probably wouldn't be instant, but your hypos symptoms would pretty soon return. How could you take the advice of someone who cannot answer such a basic question???
Well, let's just say: it all depends. Your thyroid, given the right circumstances, will eventually go back to making as much T4 and T3 as it is able. But, given that you were diagnosed hypo, that won't be much. And it will be hampered by lack of TSH, because the TSH will not instantly jump back up again. In fact, as it's been suppressed for about 10 years, it might never rise again, because the HPT axis will have become down-regulated. And, without the TSH to stimulate it, the thyroid won't make up hormone. And, if she can't work that out for herself, then she really isn't the one to be giving you advice on your dose of thyroid hormone!
Your high heart rate might be due to a high FT3, but it cerainly won't be due to the suppressed TSH, which is probably what she's thinking. If the heart rate bothers you, try reducing your dose of T3 a little - you could cut a tablet in half and go down by 12.5, see what happens. But, it's very unlikely that your TSH would rise, so don't let her push you into reducing so far you make yourself ill. She might feel less panicked but it's you that has to live with the consequences of an FT3 that is too low to make you well.
I totally agree, Greygoose, but I just don't know how to convince her of this. To make matters worse, she's going to consult an NHS endo - and I dread to think what they'll say about it.
Just say no. Tell her you will reduce your dose slightly, but you refuse to come off something that is keeping you alive. Do you buy your own or is it prescribed?
Thanks. I agree! I'm having my covid booster tomorrow so I should be able to go to Spire and have my bloods done in a couple of weeks or so. I do have some test results which the doc has just done. I could post them here for you if you are able to advise? Or should I start a new thread with that?
The problem was that I wasn't expecting the doc to test for TSH and I wasn't expecting her to find these heart palpitations - I didn't know I had them until my heart started racing at the docs! Honestly, I wonder if I've just suddenly developed a fear of doctors or something - I could feel it start to race when I went in there today too. Anyway, I have some results (not vit D though) - BUT I'd eaten that day and taken my T3. Would it be best to wait until I do a proper test - fasting and leaving the T3 till after - before I post them here? Sorry for all the questions, and thanks so much for your help.
See my reply to Marz below about the booster - to be honest, I wonder if my worries about being so unprotected from covid are what's brought on the palps in the first place. I think I have to risk the booster, even though I know it's a risk. I'm going to relax now, do some meditation and try to get my heart rate to settle ahead of the appointment tomorrow. After that, I'll sort out my test results/supplement and post them here for folks to look at/advise. At the moment, thinking about all this is making my heart race again.
If it was me I would delay your booster until thngs settle down. Both the virus and the v@x can have side effects relating to the heart. I had a coughing virus 2019/2020 and my heartbeat went off for days/weeks - had to reduce dose then. Took a long time before feeling well.
Yes, I did ask the GP about this but she said go ahead - but then she doesn't seem to have much idea about all this anyway. I'm not sure things are going to settle down soon the way things are going. I know the vax can cause heart problems, but my previous 3 haven't and, to be honest, I've been so scared that I'm unprotected against covid these last few months with so many people not masking (last booster was Nov 2021) that I wonder if that's what's brought on these palpitations. I think I'm going to risk it - though I know it's a risk. Thanks!
If your VitD is over 100 your innate immune system will be doing its best to protect you. 95% of hospital ICU deaths had very low VitD. Have just listened to Dr Myhill chatting on the topìc.
Hello, I can give you some feedback about when I stopped T3 abruptly. I did it under the instruction of Paul Robinson. For the first week, I was OK. Second week a bit worse off and then suddenly I went into an adrenal crisis and had to be admitted. I couldn't tolerate light, food or sleep. It was hell on earth, took me months to recover and copious psychiatric drugs. If you ever do anything with hormones, my humble advice is to taper very gently. I don't want to scaremonger and it doesn't mean this will happen to you, but thought I'd give you my first hand experience of stopping T3.
No, please don't apologise. I'm scared enough of what this GP is trying to do and I totally agree with you that it isn't sensible. That sounds horrendous and I really need to find a way to show this doctor what is likely to happen.
honestly, if your t3 is very top of range and you have heart palps maybe just lower your dose a tiny bit for 2 weeks and see. You might have lost weight or something may have changed in your body where you need less hormone. Are you doing keto or a special diet?
T3 is above range but then it always is when you're on T3 only. The palpitations are new. I think there must be something else causing them but the only thing the GP can see is the high T3. To be honest, I'm wondering if the fact that I had lowered the T3 a bit is causing the palpitations - I'm more inclined to go back up again rather than reduce. Goodness knows what the doc would think of that though. I haven't lost weight or doing any special diet, so nothing's changed as far as I'm aware.
ah yes I forgot that about t3 only. Hmm. I’m afraid I’m not really experienced enough at this point - aside from suggesting adrenal testing as this was what caused my palps. Others will help though I am sure. I hope you feel better soon x
Thank you. One further question about adrenal problems if you don't mind. I've recently stopped taking adrenal cortex as I thought that might be causing the palps. Is it too much or too little cortisol (is that the right thing?) that caused yours? I'm not sure if I should go back onto the adrenal cortex again. Thanks - and sorry for so many questions.
Well, I can only speak to my own experience. I am very aware that everyone reacts differently, however for me I believe that being in ketosis initially raised my cortisol and adrenaline levels which is often what happens when blood sugar levels are chronically low. After this prolonged period of time in a state of starvation mode my adrenals began to give up as they were also trying to prop up a malfunctioning thyroid condition that I didn’t really understand and wasn’t medicated properly. So I believe ultimately it was low cortisol that prompted the palpitations and other symptoms that arose. This was later backed up by saliva test.
Sorry if anyone else has mentioned this. “T3 is above range but then it always is when you're on T3 only”. Not sure where you’ve got this from. Or maybe I’ve misunderstood you. Whether you’re on t3 only or a combination your fT3 should never be particularly over range. It can cause hand tremors, palpitations and all sorts. It means you are going hyper rather than hypo. If you took your t3 before a blood test that absolutely may be why you’re over range. But it’s worth checking with another blood test without taking t3. If you’re still over range then slightly reducing your dose is sensible. Then test in 4-6 weeks time. That way you’ll know if your palpitations were linked to going slightly hyper. It’s happened to me. I cut down again slightly and they disappeared. Ignore the TSH talk. Mine has been suppressed on t3 for years. Dr’s just panic. They really need to learn more about thyroid health. Optimal is perfect. If you’re better high end of the scale like me that’s fine. But I’d not recommend staying over range unless it was just an anomaly from taking t3. I hope you manage to get to the bottom of it soon 😊
Thanks, everyone - you're all saying just what I'm thinking but I don't know how to persuade her otherwise. Is there any article you can direct me towards which I could show her please?
Also, I have actually cut down my T3 from 75mcg to 50mcg in the hope that this would sort my heart rate - but it hasn't. Wondering if it's actually made it worse? It's worth mentioning too that I don't think I was ever optimally dosed on 75mcg (or even 100mcg which I was on originally when starting this) as only some of my symptoms resolved. It now looks highly likely that many of the worst "hypo" symptoms I had were actually caused by Sjogren's syndrome instead. According to the NHS, I never have been hypo and, of course, now this GP is thinking I'm hyper.
Last Thurs when the doc first found palps. Do you think I should go up again? I know that's totally against her advice but then I don't like her advice anyway!
If you think that you were potentially underdosed on 75 µg, then potentially it is your adrenals causing the palpitations. I think the only way you will find this out is if you do a saliva re adrenal cortisol test. Additionally, I may be slightly out of my depth here but I remember reading that palpitations come in different forms. So for example my low cortisol palpitations sounded like “ub-dub” with a very strong emphasis on the second part of the beat, which apparently is characteristic of a lower adrenal palpitation. Additionally, the adrenal palpitations sometimes weren’t even necessarily always fast but just a very hard pulse. And the rate of the pulse would rise and drop sporadically, where is an overmedicated palpitation would tend to be continuously too high but a lighter beat, more of a fluttering kind of quick beat – if that makes sense? I hope that if I’ve got this wrong someone may correct me but this is based off some small reading that I did and personal experience.
If we take T3 and are having a blood test - which should be at the earliest appointment - fasting (you can drink water) and do not take T3 until after your appointment not before.
Normally, yes. But I had no idea the other day that the doc was going to do a blood test so I'd eaten and taken my T3. I didn't know she was going to find palps either as I hadn't noticed them until I went into the docs!
I think she's completely unaware of how we can get the best result.
You can tell her that you'd just taken T3 befor blood draw so your result would be incorrect and probably caused your palpitations.
If she wants another blood test ensure you have the earliest possible appointment, fasting (you can drink water) and allow a 24 hour gap between last dose and test and take dose of T3 afterwards.
I too take 75mcg T3-only and would not let any medic interfere with my thyroid care because in my experience most are clueless about T3 to the extent it scares the life out of them. I maintain after 77 years I know my body better than any of them!!
My GP similarly had a panic and thought I was killing myself! Sounded my heart and discovered a heart murmur so sent me off for a heart scan.....all fine. Apparently it's benign and I've had it since birth....doubtless no connection to T3.
My GP now accepts my right to Patient Autonomy and leaves me to it.
Sadly and rediculously it leaves me and people like me without the safety net of the NHS.
The heart needs a lot of T3 so stopping it would be very unwise, symptoms would return and the consequence,, potentially fatal!
You could try dropping the dose to 50mcg.....I did that once from 212.5mcg on doctor's orders and before I knew much about T3!
TSH and FT4 falls and FT3 rises on T3-only.....you are correct.
Maybe your body now needs less T3 as T3 receptors that had fallen dormant due to reduced T3 levels have slowly "wakened up" again. This happened to me and now I need a much smaller therapeutic dose.
Don't be scared ....you have 10 years experience, rely on that and listen to your body, not to people who are transient and less ill informed.
I am not in a position to tell you what to do ....all I can do is point out the importance of T3 to the body.
Just a personal anecdote and my memory of the details is fuzzy...
When I was first struggling with self-treating my thyroid I experimented with T3 only and got up to a very high dose. (I didn't actually have a clue what I was doing at the time, so bear that in mind.)
Despite the high dose of T3 I still felt dreadful and so I decided to try Levo or NDT again, and decided to stop my T3 cold turkey. I had been on T3 only for long enough that my Free T4 was very, very low - almost non-existent. I discovered within a few hours of missing out my T3 that I couldn't walk properly - I was staggering badly, and I could barely talk because I'd almost forgotten all my vocabulary.
These days I would never do anything like that. I would make any changes gradually.
Like DippyDame my need for T3 is now lower than it used to be (in my case a lot lower). At one point in the early days of taking T3-only (nearly 10 years ago) I got up to about 200mcg per day. When I came off that very high dose I was never able to tolerate such a high dose again, and never needed to. I don't regret it because I think I did get some benefit from it.
These days I take about 90mcg of Levo per day (on average) and take 12.5 mcg T3 per day. I think the massive dose of T3 I took early on woke something up that had "gone into hibernation" because of low thyroid hormone levels over most of my life.
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