My hair has been falling out excessively since around March this year, when I was taking 100mcg of levothyroxine only. Even when I increased the dose to 125mcg, then 150mcg, nothing helped. I was taking iron supplements to try to increase my ferritin but that didn't seem to help either. I was hoping that when I added liothyronine in September, that it would finally help, but my hair loss continued and maybe even got a bit worse! All of my other symptoms have completely resolved on liothyronine though so I was surprised the hair loss was still happening.
But the last couple of times I've washed my hair, I've finally lost a normal amount, much less than I have been for the rest of the year. I looked at my calendar and saw that I added the liothyronine about three months ago. I remember reading that hair grows in three month cycles, so could this mean that when I added the liothyronine, the hair I lost over the past month was from a previous cycle, and now maybe I've entered a new cycle that has been influenced by the extra T3 and is now happening in the normal way...?
I thought it would be helpful to post this in case anyone else is experiencing the same thing. It might be worth persevering with the hair loss!
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Zazbag
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Hi Zeebag, I had similar problems. Hair returned on Liothyronine/Levo combination.
I was different to you (my iron dropped out of range but I had very high ferritin). For me my hair loss turned out to be my iron supplementing. It reduced my Levo conversion (making my T3 eventually go out of range), it turned my skin orange and sent my cholesterol sky high which dropped when I stopped taking the iron. The GP and consultant had me taking it for 2.5 years!! They also tried very hard to get me on Statins, which, fortunately, I resisted.
Now I've got my hair back I'm just trying to magic up some eyebrows - when I find the solution! As for the orange skin, most people think it's an all year tan lol.
I'm glad your hair has finally returned and you got someone to give you Liothyronine. Probably the iron supplement was blocking your Levo conversion. I'm no expert though - it's all just trial and certainly error!
Thanks for sharing your experience. My hair was falling out before I started supplementing iron. One of the reasons I started iron was because I thought it might stop the hair loss. I'm still supplementing it now, 420mg per day, so yeah I don't think that's the issue because my hair loss seems to have stopped suddenly even though I'm still taking a large dose of iron. I've never had an issue with too much iron, I've always had the opposite problem of anaemia and low ferritin. T3 has massively helped my ferritin levels actually.
I know hair growth lags events by a few months. So an action taken today will have an effect on the hair in a few months time. So I would think the T3 has done it. What dose have you ended up on? I'm at the start of my combo journey and currently falling asleep!
I'm currently taking 150mcg levo and I was on 25mcg of liothyronine, which put me at the very top of the range, so I lowered it to 22.5mcg but then ran out of 5mcg tablets so I've been taking 25mcg again for the past week while I wait for my next batch of 5mcg tablets to arrive, which they did today so now I'm back on 22.5mcg. I've been told this is a very high dose but I feel great on it. I was on 150mcg levo before adding lio, I lowered it to 125mcg when I added the lio but during the last month I have experimented with increasing it back to 150mcg. I feel better with it at 150mcg, my feet are warmer. It puts my T4 at 74% through the range.
I lowered my Levo from 125 to 100 to start the T3, but I really didn't feel good as soon as it started to wear off. So I've put it back. I didn't have high FT4 anyway.
I'm glad you are doing so well on it. It's good to hear. How many times a day are you dosing your T3?
My belief is that T3 stimulates just about every cell in your body and help is boundless. I’m so pleased for you that your hair has improved. What I also noticed outwardly most of all about my body after being energised so much by T3 was the huge improvement to my skin. I could barely sit up let alone walk. Now I walk miles every day, just because I can. I’ve also lost 4st and just want to punch the air quite often as I feel so so good introducing T3. So pleased for you.
AAAAHHHHHH YES!!!! So glad to hear you're loving life on T3 haha! T3 has given me my life back too, and if the hair loss has actually stopped now then even better 😊
Wow you lost 4 stone. That's wonderful. And you can go for long walks again. I really hope that day arrives for me. I live in a wonderful place for walks and can barely cope going around the supermarket now!
My skin is bad too. So dry, almost dead looking and feeling. Injuries take a long time to heal, my fingers fray around the nails and I have lumps that start like spots and never go popping up on my skin a lot. Arms and legs are the worst. They just feel like fibrous mass when the spot is finished. I hate them.
I've just read your story too. Wonderful. What doses are you taking now? It makes a lot of sense that we might need more as we get more active. I can't believe how well you got using just 5mcg T3 a day with 75 Levo. How long did it take you? I'm struggling with feeling rather tired now, but don't want to rush up the doses.
Hi. I felt the benefit of T3 almost immediately. But getting fit and to the place I am today took about 9 months. I managed to join a gym snd was doing very well. Then covid arrived and put a stop to that. So I keep busy snd walking lots. We love walking. Today I’m putting all the Christmas lights up outside my bungalow. Easy as it’s low. I live alone and can garden and do everything I used to 20 years ago. Honestly I feel 20 years younger. Maybe it’s working well for you me as I did the DIO2 gene test and that came back positive. When I was on Levothyroxine alone, but struggling often, I only needed 75mcg to take my blood results to the top of the T4 range. But my TSH was high and T3 just scrapping in the bottom. I was only converting 8% of Levothyroxine to active T3. Now my T3 is much higher and that’s what I needed all along. Sometimes I don’t know why I’m still on Levothyroxine I’d converting so poorly. But I keep taking it. Although I have to split my 75mcg dose in two, I can’t seem to handle it once a day. I keep trying but I feel terrible each time. So I’m doing it twice a day snd it’s fine that way.
My skin sounds just like yours I’m convinced it was down to hormonal imbalances with my T3 being so low
Yes, 4st and without trying really Walking seems really beneficial for me I did try and diet for a while but found I didn’t need to Infact I felt better eating more as I needed the calories so T3 could burn them off I find if my T3 gets a bit high I feel hungry all the time
I had very low cortisol when T3 was low. As soon as I started T3 within a month my cortisol shot up from 150 to 466 (150-650) and it’s stayed good since. I believe T3 drives cortisol up but if you’ve got adrenal problems this may cause issues.
I too have the Dio2 defect. I had it tested early this year because I needed some answers. Glad I did. GP has dismissed it but at least I know, and the private endo I am using recognised it and gave me the T3 prescription. I've been ill with all this for 7 years. So I think it's going to take some time to feel well again. I hope it's possible. I long to go walking and riding my bike.
You say you split Levo. Do you try to do the "nothing to eat or drink for 2 hours before" thing for the second dose? I'd find that hard as I don't eat breakfast for several hours after I get up.
That’s wrong of your GP. Mine was pleased and scanned my DIO2 report onto my NHS file. I’ve seen it as I have Patient Access. Now the NHS on prescribes me T3, although my NHS Endo dismissed it but that was because he had no clue what it was about. Why don’t you send it to your surgery and ask them to scan it onto your NHS file. In the future it could help your situation. They can’t argue with the facts. My GP explained to me that the NHS file was my file and doesn’t belong to the NHS as it’s personal to me. They can’t refuse for it to be put on your NHS file. You never know one day the NHS might just prescribe you T3. I’m sure you’ll pick up soon. I don’t leave any time between meals really taking Levo. I take it at 12.30, 30 mins before my lunch. Then again at 4.30pm a couple of hours before my dinner. Why don’t you try it. Your body naturally doesn’t make T4 in one hit. Or take half at 4.30 then the other half before bed. As long as it gets in that’s the trick.
I handed him a copy to put on my file. He handed it back. I take them copies of all my private blood tests and every letter from my private endo. and HRT specialist. I don't think they actually put any of them on my file because if they refer back to any test it's always the last one they did, which was probably ages ago and I've done 2 since then.
For now I'll continue buying it and largely ignoring them. But if I can get well, loose wight and look better and get some exercise I'll be down there like a shot asking for everything to be recorded and for T3 on prescription. I have the added complication of being in persistent (all the time) atrial fibrillation. I think it was caused by too low T3 for too long. I've never been below the reference range until this year, but I've never been very high in range either and I think my poor body has just been slowly starved of it's benefits. The GP and the cardiologist just fear monger about T3. I don't get a lot of bother with the AF, but I can often feel it and it's worse at night and in the morning (the longest gaps in medication) and when I take a dose of T3 it just calms right down.
I think I will try splitting Levo. I've been put off by the faff of leaving hours away from food. Even bedtime is no help for me because we eat late due to working hours. But I'd quite like to try it. I'll leave it for a few weeks yet though as I want things to settle down as much as possible. I have noticed I'm a little bit more active today. I'm doing some jobs around the house that have been getting me down but were a bridge too far for me to tackle. I haven't had to go to work today so I've just pottered. It's nice. How do you split your Levo? Equally or more in the a.m. and less later on?
Shame your GP isn’t more helpful. I totally understand. My practice has several GP’s and most of them dismissed me. There is only one Dr who is on my side and does all blood tests I request and helps me. I guess I struck lucky. But I was in a bad way for over a decade. I just slowly got worse and worse. I was putting it down to age. I was 59 when I collapsed at home after years of struggling. I’m now 62. I think I’d be dead without the intervention of my private only Endocrinologist who trialed me on T3. I couldn’t even sit up and piled on loads of weight fast. I detest our NHS and this government for bringing it to its knees. I kept collapsing, not fainting, my muscles just wouldn’t work. I’d start the day sort of ok but within an hour I’d be on the floor. I’d call my GP fir help. He’d say that I might as well be talking to a plumber on two occasions of many as he admitted he had no clue whatsoever. Unbelievable! The hospital virtually said the same. I was admitted three times, each for a week. I got absolutely nowhere with the NHS. Maybe you need three doses of T3 a day. Can you email your private Endocrinologist and check. When I was going the gym I needed a third dose. I contacted my private endocrinologists. I thought I’d need to increase my twice daily dose. He explained that’s not the way to go snd it’s best to have a third dose. He was right with the third dose I could run at the gym and do classes etc without crashing in the evening which I had been on two doses a day.
Today you’re probably feeling better as your not using energy in work and pottering. It really is all about how much energy you expend versus how much T3 you take. It’s an energy hormone, energy to all parts of our bodies. It energises me so much. It lifts my mood too, I’ve never felt so happy. It’s about striking the right balance I believe, eating healthy food and your vitamins being optimal too. I had B12 and ferritin deficiencies too. I now get injections and repeat prescriptions. After getting my ferritin up to 100 I felt a load better too. B12 is always high now with injections. I think this is due to being a vegetarian.
Listen to your body. Balance the T3 intake with your energy output. For me it can take a few days to adjust if I alter T3 or T4 medications. I’m on liquid medication so I can easily take half of 75mcg as you draw it up in a syringe. If you’re in tablets just half it best you can or take one third snd two thirds sorry not sure how much Levo you are on.
What brand T3 are you on. I’m in Sanofi ThyBon Henning 20mcg and cut it into quarters. I’ve tried a few brands now and Sanofi works much better for me. Sigma was the worst as I felt awful and came out in a rash on my torso.
Thank god for this site. I just want to help if I can. I know how awful it can be and know there is a path back to good health.
My heart goes out to you. None of us should suffer with this damn affliction. Drs need to help more.
Yes he did. This made me believe in him. And now I have a good GP relationship finally with him. Honestly just question things without being rude or difficult and you can gain respect from your GP I believe. I did a lot of research about my thyroid condition and he said I’d taught him a few things. Anything I ask to be scanned onto my NHS record they do. Mainly stuff from my private Endo.
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