Looking to hear from anyone that has tried t3 only treatment?
It’s been suggested I try it.
I have PCOS which can cause thyroid hormone resistance which maybe explains why T4 at any dose causes awful issues and my t3 doesn’t budge at all.
My t4 before starting levo has always been fine & high-mid range so it seems like it’s my t3 that’s struggling and without meds my thyroid is struggling to consistently produce enough t3 which is causing my symptoms.
I am worried about the cost and potential side effects of t3 use but desperate to give anything a go.
Is there a higher risk of stroke and osteoporosis with long term use of T3?
If this works for me is there any chance that NHS would take over prescribing?
Thank you x
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GreenTealSeal
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The problem I have is that on any dose of levo I have really uncomfortable side effects, they go away when I stop taking it plus without levo my t4 has always been in the upper range. It feels like taking the extra t4 makes me feel worse because it just floats around in my body unused and that’s what causes side effects.
I don’t have Hashis so endo figured that thyroid hormone resistance may be the issue as very common with PCOS.
I am still supplementing and started iron patches too as ferritin always low.
Gluten free for 10 years and dairy free for a few years but made no difference so have reintroduced.
hi again, I just had one quick question if that’s okay…since I’m trying t3 only, would it be possible to then add back in a tiny bit of Levo if it felt I needed it at some point further down the line?
I appreciate I’m doing things a bit back to front but wanted to give what endo thought was best a try first. Especially as side effects from levo alone have been so horrible to manage.
I have PCOS which can cause thyroid hormone resistance which maybe explains why T4 at any dose causes awful issues and my t3 doesn’t budge at all.
That suggests a conversion problem rather than thyroid hormone resistance. With THR, you have good levels of T3 in the blood but still have hypo symptoms.
With poor conversion you have high FT4 and low FT3. Two different problems.
I am worried about the cost and potential side effects of t3 use but desperate to give anything a go.
I take 75 mcg T3 daily and have experienced no side effects - why would there be? It's a hormone, not a drug.
Is there a higher risk of stroke and osteoporosis with long term use of T3?
Depends how much you take/absorb. But just the fact of taking T3 would not increase your risk of stroke or osteoporosis. I've been on T3 only for getting on for 20 years, and I'm 78 and still alive and kicking.
Of course it's worth it! Especially if you've got your endo backing you up. So many endos refuse to hear anything about T3 only, and always want you to add in levo. I can't tolerate levo, either, which is why I put myself on T3 only.
Thank you so much for the reassurance! To be honest I was very very surprised that T3 only was suggested too but I really trust this endo and happy to give it a go. I suppose I can always add back in a tiny bit of t4 if they felt it was needed but I’d be hesitant to as it makes me feel so yuck!
I know exactly what you mean! Several times since I went T3-only I've tried to add in a little levo, but it never agrees with me, and I'm always glad when I decide to give it up.
At least it helped you know for sure what works for you!
I’ve struggled with levo from the beginning so it was lovely to speak with an endo that listened, understood and wanted to help rather than declaring me ‘in range’ and telling me to go away!
The role of the thyroid in polycystic ovary syndrome
I'd suggest that instead of RTH you have impaired T4 to T3 conversion evidenced by high FT4 with much lower FT3
With genetic testing I discovered that I have the Dio2 polymorphism, inherited from both parents. Research suggests that inheritance has a greater impact on T4 to T3 conversion than if it is from only one parent
I have impaired conversion and a form of thyroid hormone resistane
Have you tested and optimised the following to support thyroid function? Vit D, vit B12, folate, ferritin.
Trying T3-only may very well help if you cannot tolerate levo...it is the last resort.
After 20 years on levo I could barely function! It's all in my bio
After much "digging", and trial and error, it turns out that I need 100mcg T3-only daily to function....without RTH that would be a dangerous dose. We aim to take the smallest effective dose rather than the amount we can tolerate
My heart is healthy ( scanned) .....and no broken or weak bones.
Bottom line - you won't know if T3-only works for you unless you try it, but it will take time to find your therapeutic dose...so be patient!
DippyDame, you just gave me a ton of relief. My optimal dose of T3 was 150 mcg daily, with the only negative being a slightly elevated heart rate. I've never heard of anyone else who takes 100 mcg or more of T3. I'm at 100 mcg now (reduced my dose to "ration" my pills due to a backorder issue with brand-name Cytomel). I definitely have hypo symptoms on the reduced dose.
How do you explain your high dose and lab numbers (suppressed TSH and FT4) to doctors?
I am wondering this too Rileyfloof is my GP going to flip out at my thyroid numbers when im on T3 and try to spook me off of it!?
Glad to hear you're doing well on T3 - the more I read the more it seems that needing T3 to feel well is much more common than I've been led to believe.
How do you explain your high dose and lab numbers (suppressed TSH and FT4) to doctors?
T3 naturally reduces TSH and FT4....medics should know that!!
This is roughly how I explained, to my GPs, my decision to go off piste
On high dose T3 test/ numbers don't count....the tests were not designed for such doses. Instead we use good old fashioned clinical evaluation/ signs and symptoms.
I self medicate but have good doctors who at first were horrified by the amount of T3 I was taking (212.5mcg at max),one was convinced I was killing myself! Now they accept that I understand what I'm doing and leave me to it. I offered them a letter which confirmed that I take full responsibility for my use of T3.....they could breathe a sigh of relief!! I also wrote a full explanation of what I was doing, and why, which is in my medical notes.
The endo I saw refused to believe I had RTH and maintained I did not need T3. Wrong on both counts.
My resting heart rate is 65bpm. An elevated heart rate may mean you are ready to further decrease your dose...or not!
As I understand it, a form of resistance exists which reduces the amount of serum T3 that reaches into the nuclei of the cells where it becomes active and attaches to T3 receptors to ensure the body functions
While in the serum, T3 remains inactive. If cellular T3 is low we feel unwell, very ill.....or die!! The stronger the resistance the greater the problem.
To overcome this we need to get more T3 into the cells and this is where patients can have difficulties....medics like my endo may lack knowledge.
Having titrated numerous doses of T4 and T4/T3 with no success I moved to a supraphysiolgical dose of T3....referred to as "the last resort".
In basic terms ( I'm not a medic!) the large dose acts as a battering ram against the cell walls, that force pushes some of the dose into the cells where it is needed. The remaining serum T3 is metabolised and eventually excreted.
We have to calculate the dose by trial and error/ symptoms which can be a very long tiresome process.
It took me over 2 years to slowly move from Levo to high dose T3 and then to establish my therapeutic dose. I had to learn along the way!
Initially resistance must have been very high because it took 212.5mcg to improve symptoms. Over time I understand that some of the T3 receptors which had become dormant began to reactivate and resistance reduced....this allowed me to reduce my dose.
Thank you for replying! I think it's totally me getting confused and mixing up terminologies!
I had a quick skim of the paper and it just makes me so sad that thyroid function isn't more closely monitored, especially in those with other hormone conditions.
I read your bio - you've been on such a long (and frustrating journey!!) very reassuring to read you're feeling improvement with T3 and that your heart and bones are all good too!
My vitamins I am still working on and they're all going in the right direction, some are already optimised. I am having huge problems raising my ferritin as this has been low since my teens. Any iron supplement causing me awful digestive upset so I'm now trying iron patches and have just ordered Better You iron spray as its worth a shot!
I find levo can help a little bit but the side effects are intolerable. They're less bad on much lower doses but still bothersome and lower doses don't relieve my hypo symptoms and make them worse so before I spoke to end I was feeling like my choice was to stop levo and be chronically constipated and tired forever or keep taking and struggle endlessly with the side effects.
Thanks for the heads up about patience with T3, it's definitely something I'm lacking at times! We're starting out with a very small dose of T3 spread out over the day and then doing some small increases each week and review in a month or so.
I try not to think about it too much but I cannot believe how awful the NHS have been with my hormone conditions. Both PCOS and thyroid issues were diagnosed privately as GP's were so dismissive. It makes me so livid that if T3 helps me the NHS will have no part in it. It's just unbelievable and sad.
I agree....in fact I've been contemplating the same thing. If I end up in hospital or in care I'd be up a creek without a paddle....but that's something I've had to put aside. This way, I'm in control
I'm in Scotland and once wrote to every MSP and MP about this T3 debacle.
I only had a few replies...two, I recall, showed any signs of understanding.
There can be no other medical condition that is less poorly diagnosed and treated....yet T3 is essential to life.
Cost is cited, yet I spoke to someone recently who is about to have a shoulder joint replaced ( NHS) it had to been made in America ....costing £20,000. And that's not counting the cost of the operation.
The playing field isn't level!
We need an uprising but at 78 I no longer have the will to go into battle. I know what it's like to take on the clout of political and financial bodies....winning is well nigh impossible.
There are too many, in power, sitting comfortably in high places afraid to risk losing face by admitting they have all been wrong for about 60 years.
Well I hope you have more success this time around, it's certainly worth a shot! I think at the very least it raises some awareness that T3 is a much needed medication!!
NHS Endocrinology as whole seems to be very lacking in my experience. GP only seems to try to be bit more helpful when I mention fertility but shouldn't my quality of life and health matter outside of having a child!?
I have had similar issues with my PCOS NHS treatment , they have tried to persuade me onto cheaper hormone treatments and changed my prescription without asking twice. All because the medication I've found works best for me just so happens to the most expensive version.
Dr John Lowe - scientist/doctor and expert on liothyronine (T3) (in USA) and he took his one daily dose when he awoke during the night. He recommended a 'one daily dose' as it saturated all of our T3 receptor cells and then sent out 'waves' throughout the day.
Unfortunately for us - Dr Lowe had a bad fall that caused a brain bleed, and it caused his demise.
I also have been in T3-only treatment for almost 20 years, except for a couple of miserable periods where my doctors insisted I take T4. The last time I was in a T4/T3 combo medication (NP Thyroid) for 31 days, I ended up in the hospital emergency room. I also have PCOS and insulin resistance, and I strongly suspect I have thyroid hormone resistance. I suspect you have conversion issues, where youe body converts too much T4 to Reverse T3 rather than the active version of T3. Has your doctor ever tested Free T3 and Reverse T3 at the same time? That would be necessary to know the ratio of T3 to RT3 and confirm a conversion issue.
Gosh sounds like you've really been through it! Why don't doctors connect the dots with hormone disorders like PCOS - it's beyond maddening! I hope that you're doing much better now.
I def think I have a conversion issue as on levo my T3 kind of hits a roof and refuses to climb any higher. I haven't had a reverse T3 test but have had my T3 closely monitored privately whilst on levo.
Its mad because I know I have PCOS but I have absolutely no idea if I have (or how bad) my insulin resistance is - I have requested a test several times and am always told this is only for pregnant women and to go away...
May I be nosey and ask...the times when you had to take some T4, was this due to pregnancy? (No pressure at all to answer if you'd rather not get into it!) I'm excited to try T3 but I am worried that down the line this will cause issues when I want to try and have a baby, probs getting very ahead of myself but still on my mind!
When I was very, very unwell - GP phoned me at home to state my blood test was 'fine' - nothing wrong,- except he obviously knew nothing as my TSH was 100.
Absolutely shocking!! I cannot imagine how you must have felt, my TSH hasn’t been higher than 8 (that I know!) but I cannot put into words how ill I felt.
GP told me my results were fine and I shouldn’t have any symptoms so it can’t be my thyroid causing my issues. She prescribed exercise and healthy diet, two things I’ve been doing forever until I was too ill to keep up with exercise…
You are very fortunate to have an endocrinologist who understands and will prescribe T3. I've seen many endocrinologist here in the U.S. who "don't believe" in T3 treatment. I can't even take a thyroid support supplement with thyroid glandular in it without having severe hypo symptoms return.
TBH I was astounded by the appointment yesterday. It was only short but I felt heard, understood and we worked together to find the next steps of my treatment.
It makes me sad to say but the quality of care from the NHS and private is absolutely night and day here in UK. I wouldn't even know I had PCOS without private health care.
I think you are more likely to have a stroke if your t3 is low. T3-only changed my life for the better. I was on t4 for 15 years. Towards the end I could barely function. Dr P told me never to take it again and advised T3 only. It took a while to work out the correct dose but I have now been on t3 for 13 years and have a very full and active life. Are you in the UK? I wish the NHS would pay for mine.
Thank you for sharing your story - it's so reassuring!
I'm sorry you had such a shit time on levo - it seems MUCH more common than Dr's would have us believe!
I'm starting out on a baby dose for the first week and then slowly increasing from there based on my symptoms.
I am in the UK so am concerned about costs but at this point I just want to be well and have my life back! TBH I have to try not to think about it because the NHS has been a let down from day one for me regarding anything endocrinological. Don't get me wrong NHS are great for somethings but when it comes to complex hormone conditions they are next to useless.
If T3 helps me the way I'm hoping when I'm feeling stronger I'm definitely going to contact the NHS and have a discussion (more likely arugment!) about them prescribing it. I'm going to read up as best I can and do it all!! I know they will almost certainly shut me down but it's the principle of it and I just feel like I want my voice to be heard!
Sorry for ranting but I just think this is absolute madness for us all to deal with!!
As others have noted T3 can really help. However in some of us, T3 will cause increased blood sugar via hepatic gluconeogenesis and consequently insulin goes even higher which is the exact opposite of what you want with PCOS. Good luck!
Hi. Thyroid meds Can and often do improve glycemic control. Just a heads up that T3 in particular can raise blood sugar in some people. I’m a dude, but T3 dramatically raised my blood sugar and insulin response. My daughter has PCOS like issues. I felt better in some ways on T3, but definitely gained weight. It can also raise LH and FSH (in men, not sure about women). It increased my testosterone, but also estrogen via increased aromatization. Tricky stuff and not straight forward, at least in my case. It’s definitely worth a shot. Just be aware and keep an eye on things. Wishing you well.
Oops, I'm very sorry -I assumed you were a PCOS lady! Hahaha!
Thank you for the heads up and I will definitely keep an eye on my blood sugar levels and raise this with my endo in a few weeks time.
I'm hopeful that T3 may calm my PCOS issues and hopefully build on the improvement I've seen in my blood sugar - fingers crossed and thank you for the heads up!
I am very fortunate to be fit and symptom-free on T3 alone.
I was diagnosed (by myself) in 2007 and I was eventually very fortunate to find Dr John Lowe (an Adviser to Thyroiduk)) who was also a researcher/doctor/expert on the use of T3. He also took his once daily dose of T3 himself in the middle of the night so that nothing interfered with its uptake.
I had never heard the word 'hypothyroidism' before diagnosis and suspect many of us hadn't heard of it.
Levothyroxine - for me - was a nightmare for both husband and myself as I developed very severe palpitations during the night.
I was then linked to the Cardiology Dept in the local hospital to record palps but they had no answer.
Unfortunately for all of us - Dr Lowe had a severe fall that caused his premature death due to a bleed in his brain.
Fortunately for me my new GP is also knowledgeable and has raised my dose of 25mcg of T3 to 30mcg.
That sounds like an absolute dream and I hope something that is attainable for me too!
That sounds so awful and sad about Dr Lowe, especially as it seems there are so few doctors that fully understand the complexities of thyroid disorders.
I really tried with levo and really wanted it to work but it just got to a point where I couldn’t manage the side effects day to day at all. I know what you mean about the heart stuff, I had two episodes whilst taking it that made me feel like I was having a heart attack.
May I be nosey and ask how much t3 you take per day?
I’m just starting out on a teeny dose spread throughout the day and then building up week by week depending on my symptoms.
I’m quite small so I’m hoping I won’t need a huge amount as I worry so much about the cost of it.
The fact that there's now a selection of T3s and price lower. I hope you find the first one suits you. It is amazing when our symptoms resolve and we feel well again and hope symptoms don't return.
Some people take a split dose throughout the day but Dr Lowe took his one daily dose in the middle of the night when he awoke. He stated that T3 saturated our T3 receptor cells and it then sent out 'waves' throughout the day.
That’s interesting and maybe I can try taking it this way a bit further down the line to see if it suits me too.
Right now I’m paying about £60 for 100 tabs and hope long term that the price may drop or NHS will agree to prescribe if I can build a case to show I need it., worth a shot!
My suggestion to you is definitely do T3 only therapy. Check out Paul Robinson UK his book Recovering with T3 . He has a website. Really, he couldn't take T4 either!
Oh thank you, I recognise the name- must have seen it a lot on this forum! I will look up the book thank you!
Although levo did alleviate some symptoms for me, I couldn’t tolerate the side effects at all and they were really impacting my day to day Side effects persist even on lower doses and if I go too low then my hypo symptoms come back with vengeance! I feel like I just can’t win with levo!
I started T3 mono therapy this weekend and I am so hopeful I will have the success that so many others have on here. Thank you for the encouragement. I know it will still be a slow process to find my perfect dose but I hope I’ll get there!
I desperately miss my career, social life, hobbies, along with everything else and I’m hopeful in time T3 will allow me to back to it all and feel well.
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