There wasn't really enough room in the subject box to write a full title of my situation but I've included the most relevant bits.
First, about me - I am a 30 year old man, I exercise frequently, by going to the gym to do weight training and sometimes I'll do sprinting but. Not so much recently though. I am physically very fit. I live in England, UK.
4 years ago I was diagnosed with hypothyroidism. At the time I was going to the gym a lot (by a lot I mean doing full body workouts 3 times a week). I also did not take a break from the gym for about a year. For the first several months I got fitter and stronger but the last several months my health declined and I became very ill. It's only now that I realise this could be a seasonal thing, to do with sunlight, or more specifically the lack of sunlight during winter, but I will take more on that later.
(The main thing I get that really bugs me is this red/dry skin area on the right side of my lip, it's almost exclusively on the right side, though occasionally it happens on the left side for a brief time too. It can lasts for months sometimes and all I know about it so far is that I assume it is related to stress. I am sure that is related to my whole health issue, whatever it is, it would be great if someone knows something).
The latter part of that year of going to the gym I stopped getting stronger in my workouts. Then I started getting weaker, and I felt tired often, and my mood was low and I became irritable. I kept up the exercise, eventually I started to feel horribly physical sick at my workouts, to the point of throwing up. Before long my hair started to fall out. That's when I went to the doctor to ask for help.
They did some blood tests, and when finished they called me in about the results. These were the results, as you can see, my TSH is raised but my T4 is a very good 17.9, normal for someone who is not on thyroid meds.
TSH 10 high (ref range 0.5 - 4.5)
Free T4 17.9 normal (ref range 12 - 22)
They told me I have hypothyroidism. Back then I'd never heard of it, so I had no knowledge on the subject. I asked them what could have caused it and if they can cure it. They told me they don't really know what causes it but in the majority of cases it's an autoimmune disease and there's no cure. They said it's easy to treat though. It seemed odd they would go by assumption that it was an autoimmune disease without a test to confirm it. I asked them if they would test for the autoimmune disease but they refused, they said it is almost ways autoimmune disease so there is no point in testing. I just accepted their word for it.
I know the symptoms list for hypothyroidism is very long. Most of them I do not have, and in many cases I am the opposite. For example people feeling cold, I don't get that, I usually feel too warm if anything. I do have low mood and irritability though.
They put me on a small dose of thyroxine, 25m. I was to be retested every 6 weeks, they also said to take a break from exercise, so I stopped going to the gym.
6 weeks later they retested. TSH 8, free T4 19. They told me this is good, it shows it is working. I didn't feel much different. They raised my dose to 75mg
6 weeks later they retested, TSH 5, Free T4 21. I still didn't feel any difference. Raised dose to 100mg
6 weeks more pass. TSH 3, Free T4 23. I had been reading a lot about hypothyroidism and saw that many with hypothyroidism felt better with a TSH less than 1, so we kept raising the dose. 150mg
6 more weeks. TSH 1.5, Free T4 25. New dose 200mg
6 weeks. TSH <1, Free T4 27
I started going to the gym again now, and I just felt horribly sick again, there was no improvement. All this time wasted taking this mediciation and I was still feeling crappy, getting ill from exercise, and irritable in general.
Throughout all of this I was doing lots of research online, this was 4 years ago though, and there was a lot less information regarding the complexities of thyroid disorders back then, most of it seemed to be about primary hypothyroidism, which I later realised was not relevant to me at all.
Then I found somewhere, there was more to it than just T3, T4 and TSH. I found out and read a lot about reverse T3, and how if high, can cause what I seemed to be experienced, normal t4, mostly non specific symptoms and a slightly raised TSH. I asked my doctor for a reverse T3 test but he had never heard of it and said the NHS don't do that one.
I found a lab that does it privately, they do a full thyroid panel, including both antibody tests to see if you have an autoimmune disease. I paid for the full thyroid panel. I was still on the thyroxine at the time. TSH normal, T4 normal, T3 normal, reverse T3 high.
Now I knew something more, I have high reverse T3. I started to read about how to fix it, all I could really find was that you should reduce stress, and perhaps get a saliva adrenal test. So I paid for the adrenals test. I had to give saliva samples at 4 periods throughout the day. I got the results, they were all bad, my cortisol was very low, way below reference range, throughout the entire day.
Armed with this information, I decided to focus on dealing with stress in my life, and take more time to relax. I did start to feel a bit better from it, but it wasn't a huge difference really, I didn't feel that great. They continued to monitor tsh and t4 every 6 weeks for a long time.
TSH 0.01, Free T4 27+. I had read that perhaps I shouldn't be on thyroxine at all. My T4 levels put me into the range of having an overactive thyroid, I now found I couldn't sleep properly, or for long. If you remember, my Free T4 was normal when they diagnosed me, it seemed odd to give me more T4 if my T4 is already normal.
I decided to stop taking the thyroid meds. First we reduced my dose by half, to 100mg. TSH stayed within range and my free T4 dropped a bit to 22 but still very high. 12 weeks after cutting the dose in half, I stopped taking the thyroid meds completely.
And nothing happened. I started to sleep better but other than that I didn't feel any different.
6 weeks later they tested me again. TSH was like 15 and my Free T4 was down to 13-14, near the low end of the range. I felt OK though, didn't feel any difference at all. My TSH was never this high, 15, but I figured my body adapting to the sudden withdrawal of thyroid meds.
So I waited 6 more weeks for the next blood test.
TSH 7 Free T4 16 - Everything seemed to be returning to normal. I continued to take it easy and waited 6 more weeks.
TSH 5 Free T4 17 - Officially almost within range for the TSH test and my free T4 was completely normal again. I had been on thyroid meds for over a year, and felt no better on it. There was the worry that my thyroid would never return to normal but it was as if I had never gone on the thyroid meds at all.
There was one problem. I still didn't feel that great.
I just accepted that perhaps there was just nothing wrong with me at all, maybe I just had too much of a negative attitude and that's why I felt irritable, so I read a little about being positive and tried that, it didn't help.
My doctor even sent me to an endocrinologist, this endo specifically was a world leading endo on thyroid disorders and had even published on it.
The endo didn't do any tests, he just asked me questions, like a psychologist would. His decision was that I had subclinical hypothyroidism and there was nothing to be done about it, he recommended I go on anti-depressants. I refused.
They continued testing my TSH and T4 for a long time, even though I wasn't on the meds any more. I was hoping my TSH might go back to the normal range naturally. But it never did, it went as low as 4.7, usually hovering between 4.7 and 6. My free T4 always came back normal, between 16-17.
I had practically given up on this, I felt that there was no solution and I just have to accept I am the way I am and that I will probably never know why my TSH is always raised just a little.
I got back into exercising again, at first I was trying to lose fat, so I was dieting and lifting weights. I actually dieted too hard, and cut fats too low. After several months I had lost a lot of weight, down from 13 stone to about 10 stone which is not much for a man. I had started doing this intermittent fasting, and I was combining it with a low calorie intake. I actually lost all sex drive, could not get erections, and just felt weak and exhausted all the time.
Because I had lost my libido I suspected low testosterone so I read a bit about it and realised that I had cut calories and more specifically fats too low. I had my doctor check my testosterone with a blood test and it what as as I suspected, very low. My free testosterone was 5 and the range is 13 to 27. I had the testosterone of a 100 year old man. I told the doctor I would try to fix this through diet and I had already read about what I needed to do if the test confrimed my testosterone was low.
I started eating lots more food, more specifically fatty foods. I got my fat intake really high, I started using virgin coconut oil to cook my foods, I was eating beef and eggs every day, full fat greek yoghurt, avacados, etc. I stopped doing the steady state cardio (walking up hill to burn calories) as I read it is no good for testosterone. I started sprinting instead, one or twice a week, I would do a set of sprints, it only took about 15 minutes each time. I also started to sunbathe, I started to feel a lot better.
6 weeks later they tested my testosterone again. 28! the reference range is 13-27. I was right at the top of the range, 1 over actually. My doctor couldn't believe it. Everything I had done was working. After seeing the dramatic results with my testosterone my doctor suddenly agreed that perhaps I do not have hypothyroidism after all, perhaps it's something about my lifestyle that is causing it. This had fixed my testosterone problem, though the thyroid problem remained unsolved.
The healthiest I have ever been.
It was spring when this happened, about March/April. We had a lot of nice sunny days, as I said I had just started sunbathing a lot. Over that summer, I was the healthiest I have ever been. Anywhere I went I found myself leaping up onto high walls and jumping off. I had so much energy, I looked and felt so good, the best I have looked and felt. I had comments from people about how I got so healthy. It was like a new me, the best me I have ever been, and it lasted all summer, from April until September. There's no way I have an underactive thyroid and yet felt that good and healthy without treatment.
By September I had to stop sunbathing as the weather was no longer suitable. I didn't get much sun at all actually.
One thing I will note, I don't get outside much usually. A few years prior to all of this I had the doctor test me for vitamin D deficiency as I suspect I could be low. It came back low, not extremely low but it wasn't adequate.
By around October I stopped feeling so good, I was gradually feeling worse and that summer high of feeling the best I had ever felt was gone, I was back to my normal, irritable self.
That summer was one year ago, the summer before the one we just had. I tried to repeat that summer with the one we just had and I did have some success with it although I didn't get to the level of how good I felt last year. I didn't do everything the same though. This summer I didn't get so much chances to sunbathe so I had a lot less sun. I was also fasting for much of this last summer, only eating between the hours of 2pm and 10pm (8 hours eating, 16 hours fasting) though I was eating a lot of food, I wasn't dieting. I also didn't have any coconut oil this summer.
It's October again now and the weather is no good for sunbathing. I feel extra crappy in fact, very irritable. That red/dry area on the side of my lip is worse than ever and had been persistantly bad for the last 2 months. I feel very stressed a lot of the time.
I haven't had a thyroid test in a while but I had my doctor check it 2 weeks ago. TSH 7, free T4 15. That's a little worse than usual, but I didn't expect a good result with how I feel.
My doctor had suggested I go back on the thyroid meds. I don't think I should. I went through all this before, it didn't help, I stopped taking them. I actually got the healthiest I have ever been last year and I wasn't on thyroid meds. I don't think thyroid meds are the answer.
From all of the information I have given it should be possible to work out what is going on here. Here is the main differences.
I am not getting much, if any sunlight now, I am probably vitamin D deficient. I didn't get much sun this past summer either.
I am not using coconut oil any more, because it is expensive and I am not sure that was what helped me, it's more likely the sunlight that did it. Right now I can't be certain, or perhaps it was both.
I was fasting these past few months. I have read this can cause high reverse T3, so I stopped fasting too.
That summer I got really healthy I logged everything I did, like a wellness journal. I also kept food sheets detailing the exact foods and quantities i ate every day, with carb, protein and fat amounts included.
This is still ongoing for me, it seems at least that a lack of sunlight is what is causing my health issues, and perhaps my high reverse T3. I have thought about getting another thyroid panel to have reverse t3 checked but it is very expensive so I am not sure if I will.
I am bit stuck with what to do as I think sunlight is the key to my good health and I can't really get much time in the sun now due to poor weather.
I have read that vitamin D3 doesn't have the same effect as sunlight and in my experience it doesn't, so supplementation seems worthless too. It just seems odd that I need a significant amount of time in the sun to be healthy, like that is the key to good health for me, which isn't possible during winter months.
My doctor doesn't seem to be any use with this. As far as he is concerned, my thyroid is the problem. Even though my free T4 is normal and tsh is just a little raised. He just says it means my thyroid isn't working properly the TSH signal is stronger to compensate. That could be the case in autoimmune disease, but I tested negative for antibodies. I am given no good medical advice and left to navigate this issue myself. It also doesn't explain why I get so healthy when I sunbathe a lot.
I hope this information will help someone else.
First, about me - I am a 30 year old man, I exercise frequently, by going to the gym to do weight training and sometimes I'll do sprinting but. Not so much recently though. I am physically very fit. I live in England, UK.
4 years ago I was diagnosed with hypothyroidism. At the time I was going to the gym a lot (by a lot I mean doing full body workouts 3 times a week). I also did not take a break from the gym for about a year. For the first several months I got fitter and stronger but the last several months my health declined and I became very ill. It's only now that I realise this could be a seasonal thing, to do with sunlight, or more specifically the lack of sunlight during winter, but I will take more on that later.
(The main thing I get that really bugs me is this red/dry skin area on the right side of my lip, it's almost exclusively on the right side, though occasionally it happens on the left side for a brief time too. It can lasts for months sometimes and all I know about it so far is that I assume it is related to stress. I am sure that is related to my whole health issue, whatever it is, it would be great if someone knows something).
The latter part of that year of going to the gym I stopped getting stronger in my workouts. Then I started getting weaker, and I felt tired often, and my mood was low and I became irritable. I kept up the exercise, eventually I started to feel horribly physical sick at my workouts, to the point of throwing up. Before long my hair started to fall out. That's when I went to the doctor to ask for help.
They did some blood tests, and when finished they called me in about the results. These were the results, as you can see, my TSH is raised but my T4 is a very good 17.9, normal for someone who is not on thyroid meds.
TSH 10 high (ref range 0.5 - 4.5)
Free T4 17.9 normal (ref range 12 - 22)
They told me I have hypothyroidism. Back then I'd never heard of it, so I had no knowledge on the subject. I asked them what could have caused it and if they can cure it. They told me they don't really know what causes it but in the majority of cases it's an autoimmune disease and there's no cure. They said it's easy to treat though. It seemed odd they would go by assumption that it was an autoimmune disease without a test to confirm it. I asked them if they would test for the autoimmune disease but they refused, they said it is almost ways autoimmune disease so there is no point in testing. I just accepted their word for it.
I know the symptoms list for hypothyroidism is very long. Most of them I do not have, and in many cases I am the opposite. For example people feeling cold, I don't get that, I usually feel too warm if anything. I do have low mood and irritability though.
They put me on a small dose of thyroxine, 25m. I was to be retested every 6 weeks, they also said to take a break from exercise, so I stopped going to the gym.
6 weeks later they retested. TSH 8, free T4 19. They told me this is good, it shows it is working. I didn't feel much different. They raised my dose to 75mg
6 weeks later they retested, TSH 5, Free T4 21. I still didn't feel any difference. Raised dose to 100mg
6 weeks more pass. TSH 3, Free T4 23. I had been reading a lot about hypothyroidism and saw that many with hypothyroidism felt better with a TSH less than 1, so we kept raising the dose. 150mg
6 more weeks. TSH 1.5, Free T4 25. New dose 200mg
6 weeks. TSH <1, Free T4 27
I started going to the gym again now, and I just felt horribly sick again, there was no improvement. All this time wasted taking this mediciation and I was still feeling crappy, getting ill from exercise, and irritable in general.
Throughout all of this I was doing lots of research online, this was 4 years ago though, and there was a lot less information regarding the complexities of thyroid disorders back then, most of it seemed to be about primary hypothyroidism, which I later realised was not relevant to me at all.
Then I found somewhere, there was more to it than just T3, T4 and TSH. I found out and read a lot about reverse T3, and how if high, can cause what I seemed to be experienced, normal t4, mostly non specific symptoms and a slightly raised TSH. I asked my doctor for a reverse T3 test but he had never heard of it and said the NHS don't do that one.
I found a lab that does it privately, they do a full thyroid panel, including both antibody tests to see if you have an autoimmune disease. I paid for the full thyroid panel. I was still on the thyroxine at the time. TSH normal, T4 normal, T3 normal, reverse T3 high.
Now I knew something more, I have high reverse T3. I started to read about how to fix it, all I could really find was that you should reduce stress, and perhaps get a saliva adrenal test. So I paid for the adrenals test. I had to give saliva samples at 4 periods throughout the day. I got the results, they were all bad, my cortisol was very low, way below reference range, throughout the entire day.
Armed with this information, I decided to focus on dealing with stress in my life, and take more time to relax. I did start to feel a bit better from it, but it wasn't a huge difference really, I didn't feel that great. They continued to monitor tsh and t4 every 6 weeks for a long time.
TSH 0.01, Free T4 27+. I had read that perhaps I shouldn't be on thyroxine at all. My T4 levels put me into the range of having an overactive thyroid, I now found I couldn't sleep properly, or for long. If you remember, my Free T4 was normal when they diagnosed me, it seemed odd to give me more T4 if my T4 is already normal.
I decided to stop taking the thyroid meds. First we reduced my dose by half, to 100mg. TSH stayed within range and my free T4 dropped a bit to 22 but still very high. 12 weeks after cutting the dose in half, I stopped taking the thyroid meds completely.
And nothing happened. I started to sleep better but other than that I didn't feel any different.
6 weeks later they tested me again. TSH was like 15 and my Free T4 was down to 13-14, near the low end of the range. I felt OK though, didn't feel any difference at all. My TSH was never this high, 15, but I figured my body adapting to the sudden withdrawal of thyroid meds.
So I waited 6 more weeks for the next blood test.
TSH 7 Free T4 16 - Everything seemed to be returning to normal. I continued to take it easy and waited 6 more weeks.
TSH 5 Free T4 17 - Officially almost within range for the TSH test and my free T4 was completely normal again. I had been on thyroid meds for over a year, and felt no better on it. There was the worry that my thyroid would never return to normal but it was as if I had never gone on the thyroid meds at all.
There was one problem. I still didn't feel that great.
I just accepted that perhaps there was just nothing wrong with me at all, maybe I just had too much of a negative attitude and that's why I felt irritable, so I read a little about being positive and tried that, it didn't help.
My doctor even sent me to an endocrinologist, this endo specifically was a world leading endo on thyroid disorders and had even published on it.
The endo didn't do any tests, he just asked me questions, like a psychologist would. His decision was that I had subclinical hypothyroidism and there was nothing to be done about it, he recommended I go on anti-depressants. I refused.
They continued testing my TSH and T4 for a long time, even though I wasn't on the meds any more. I was hoping my TSH might go back to the normal range naturally. But it never did, it went as low as 4.7, usually hovering between 4.7 and 6. My free T4 always came back normal, between 16-17.
I had practically given up on this, I felt that there was no solution and I just have to accept I am the way I am and that I will probably never know why my TSH is always raised just a little.
I got back into exercising again, at first I was trying to lose fat, so I was dieting and lifting weights. I actually dieted too hard, and cut fats too low. After several months I had lost a lot of weight, down from 13 stone to about 10 stone which is not much for a man. I had started doing this intermittent fasting, and I was combining it with a low calorie intake. I actually lost all sex drive, could not get erections, and just felt weak and exhausted all the time.
Because I had lost my libido I suspected low testosterone so I read a bit about it and realised that I had cut calories and more specifically fats too low. I had my doctor check my testosterone with a blood test and it what as as I suspected, very low. My free testosterone was 5 and the range is 13 to 27. I had the testosterone of a 100 year old man. I told the doctor I would try to fix this through diet and I had already read about what I needed to do if the test confrimed my testosterone was low.
I started eating lots more food, more specifically fatty foods. I got my fat intake really high, I started using virgin coconut oil to cook my foods, I was eating beef and eggs every day, full fat greek yoghurt, avacados, etc. I stopped doing the steady state cardio (walking up hill to burn calories) as I read it is no good for testosterone. I started sprinting instead, one or twice a week, I would do a set of sprints, it only took about 15 minutes each time. I also started to sunbathe, I started to feel a lot better.
6 weeks later they tested my testosterone again. 28! the reference range is 13-27. I was right at the top of the range, 1 over actually. My doctor couldn't believe it. Everything I had done was working. After seeing the dramatic results with my testosterone my doctor suddenly agreed that perhaps I do not have hypothyroidism after all, perhaps it's something about my lifestyle that is causing it. This had fixed my testosterone problem, though the thyroid problem remained unsolved.
The healthiest I have ever been.
It was spring when this happened, about March/April. We had a lot of nice sunny days, as I said I had just started sunbathing a lot. Over that summer, I was the healthiest I have ever been. Anywhere I went I found myself leaping up onto high walls and jumping off. I had so much energy, I looked and felt so good, the best I have looked and felt. I had comments from people about how I got so healthy. It was like a new me, the best me I have ever been, and it lasted all summer, from April until September. There's no way I have an underactive thyroid and yet felt that good and healthy without treatment.
By September I had to stop sunbathing as the weather was no longer suitable. I didn't get much sun at all actually.
One thing I will note, I don't get outside much usually. A few years prior to all of this I had the doctor test me for vitamin D deficiency as I suspect I could be low. It came back low, not extremely low but it wasn't adequate.
By around October I stopped feeling so good, I was gradually feeling worse and that summer high of feeling the best I had ever felt was gone, I was back to my normal, irritable self.
That summer was one year ago, the summer before the one we just had. I tried to repeat that summer with the one we just had and I did have some success with it although I didn't get to the level of how good I felt last year. I didn't do everything the same though. This summer I didn't get so much chances to sunbathe so I had a lot less sun. I was also fasting for much of this last summer, only eating between the hours of 2pm and 10pm (8 hours eating, 16 hours fasting) though I was eating a lot of food, I wasn't dieting. I also didn't have any coconut oil this summer.
It's October again now and the weather is no good for sunbathing. I feel extra crappy in fact, very irritable. That red/dry area on the side of my lip is worse than ever and had been persistantly bad for the last 2 months. I feel very stressed a lot of the time.
I haven't had a thyroid test in a while but I had my doctor check it 2 weeks ago. TSH 7, free T4 15. That's a little worse than usual, but I didn't expect a good result with how I feel.
My doctor had suggested I go back on the thyroid meds. I don't think I should. I went through all this before, it didn't help, I stopped taking them. I actually got the healthiest I have ever been last year and I wasn't on thyroid meds. I don't think thyroid meds are the answer.
From all of the information I have given it should be possible to work out what is going on here. Here is the main differences.
I am not getting much, if any sunlight now, I am probably vitamin D deficient. I didn't get much sun this past summer either.
I am not using coconut oil any more, because it is expensive and I am not sure that was what helped me, it's more likely the sunlight that did it. Right now I can't be certain, or perhaps it was both.
I was fasting these past few months. I have read this can cause high reverse T3, so I stopped fasting too.
That summer I got really healthy I logged everything I did, like a wellness journal. I also kept food sheets detailing the exact foods and quantities i ate every day, with carb, protein and fat amounts included.
This is still ongoing for me, it seems at least that a lack of sunlight is what is causing my health issues, and perhaps my high reverse T3. I have thought about getting another thyroid panel to have reverse t3 checked but it is very expensive so I am not sure if I will.
I am bit stuck with what to do as I think sunlight is the key to my good health and I can't really get much time in the sun now due to poor weather.
I have read that vitamin D3 doesn't have the same effect as sunlight and in my experience it doesn't, so supplementation seems worthless too. It just seems odd that I need a significant amount of time in the sun to be healthy, like that is the key to good health for me, which isn't possible during winter months.
My doctor doesn't seem to be any use with this. As far as he is concerned, my thyroid is the problem. Even though my free T4 is normal and tsh is just a little raised. He just says it means my thyroid isn't working properly the TSH signal is stronger to compensate. That could be the case in autoimmune disease, but I tested negative for antibodies. I am given no good medical advice and left to navigate this issue myself. It also doesn't explain why I get so healthy when I sunbathe a lot.
I hope this information will help someone else.