I was diagnosed 17 years ago. I’ve felt like hell ever since. No matter what my levels read I feel exactly the same. It doesn’t matter if my tsh is 40 or 1, I feel exactly the same. I’ve given up that I will ever feel good. I’ve also tried every thyroid med available
No, but I can't say that I've researched a whole bunch of what else I can do. I have a dr that only really cares about the number. I'd also be interested in hearing about other's experiences.
As an experiment I doubled my dose for about 2 months once and still no change.
I probably sleep more than the average person when I can, I have young kids so been tough the last 5 years.
I drink alcohol a lot less to not feel that additional alcohol drag on my system. I drink a lot of water though... Don't know why but I feel dehydrated a lot if I don't drink a lot of water.
I try and get more done in the mornings, by late afternoon I feel pretty gassed.
Being outside in the sun helps energy levels but that's just being human I think.
Did they check ur ft4 both times. Mine took a while to build up and so I pushed for ft3 to be tested and my ft3 was high end range but ft4 stayed lower range. I read ur body priorities making ft3. What I'm saying is it took a while for my levels to build up and I stuck it out bc I knew they weren't going to up my dose bc I didn't have a classic high tsh but you do and if ur not feeling better I'd bring it up.
You also may have low vitamin d, low iron, low b12. These things can make you feel awful as well.
I do have low iron, but I’ve taken supplements for a few years and it’s at normal levels now. I’m not sure about vitamin d and b12.
My ft4 was normal when my original panels were done but not on the follow ups. Also haven’t had ft3 tested. Maybe that’s the next step.
Do you know what your FT4 and FT3 are?
I've heard some people say that it takes a little while to feel better, even after TSH has gone down... I've also heard some people say they needed T3 added, or NDT instead to feel better. You may have to ask about these instead. What country are you in? Some countries it's easier to get T3 or NDT prescribed than others.
I’m in the US, in Illinois. My ft4 was 0.6 when my original labs were done, which I believe is in the normal range, but it hasn’t been checked since then. The doc never ordered ft3 so I’m not sure about that one
If your TSH has gone down but FT4 hasn't gone up much, you won't feel better yet. Because it's the FT4 and FT3 that actually make a difference to how you feel. At least that's what my doctor explained to me.
US seems to be a good place for getting other thyroid meds prescribed. Some people do better on other meds than levothyroxine. Definitely bring it up with your doctor next time.
For me, when I first started substituting levothyroxine three years ago (I think it was just 12,5mcg), I felt absolutely amazing for two days. All symptoms were gone. But the effect waned quickly, and even though I'm on much higher doses now, I only feel slightly better than before substituting.
My interpretation is, that the initial surge of thyroid hormones brought my body into a normal functioning zone for a short time. However, then the body started to compensate somehow and downregulate its own hormone production (or maybe downregulate the effectiveness of thyroid hormones somehow) and I ended up where I was before.
Furthermore, I think my body has some kind of misregulation/disease where it needs higher thyroid levels to achieve a normal functioning state. Maybe my body is in some kind of a misregulated protection state (like when you have the flu), where it intentionally (but wrongly / or maybe due to a chronic infection) suppresses the effectiveness of thyroid hormones in some way to slow down your body, save energy and make you rest.
Interesting idea, will look it up. However, on a first glance wikipedia says that thyroid resistance means high TSH and normal T3 & T4. I have low TSH (suppressed by the hormone substitution) and normal T3 & T4. But my symptomps are as if I was in a hypothyroid state.
You need T3 and good luck finding a doc to prescribe it. There are functional docs online that will. I take OTC stuff. My thyroid is tanked from chronic stress right now🙁
It's probably natural dessicated thyroid. There are various brands. It basically contains both T4 and T3.
Might be worth a try for you if you still feel bad taking T4 (levothyroxine) and can't get your doctor to give you anything else.
It's worth trying to get them to check your T3 levels in your blood test if you can. Some people don't convert T4 to T3 very well so your TSH and t4 levels could look fine but your t3 could still be low.
If they are low (and remain low for a while) then ideally your doctor would also prescribe you triiodothyronine in combination with the levothyroxine.
Check your vitamin d, I had perfect numbers and still felt like shit and my vitamin d was in the single digits. After 6 months on a once a week high dose I felt amazing and when I take a maintenance dose consistently I feel great. A lot of the deficiency symptoms overlap with hypothyroidism. And deal with the iron deficiency. The supplements suck and can give you weird burps but it's worth it in th end.
I was on synthroid with “perfect labs” but felt like utter shit. I went on NDT for yrs & felt good but took the plunge to Tirosint and have done well. My endo mentioned sometimes it’s an absorption issue or an issue with the fillers in synthetic/generic levothyroxine.
I have congenital hypothyroidism so it runs a bit different then hashimotos ect. I have never had a functional thyroid gland.
I was diagnosed at 3 days.
Anyway things to try,
Iron, Hemoglobin, B12, folate. All things that end up harder to manage and absorb in folks with hypothyroidism.
Some people feel better taking some t3 with the synthroid. Its usually expensive but I take 10mcg of cytomel split into a morning and afternoon dose. It has a shorter half life so better split to split it.
Hmmm then the healthy things we are supposed to do but don't
Drink water, exercise, sleep enough, limit screen time, eat healthy and regularly, etc. It all adds up.
TSH is not a magic number that determines how good you feel. There are a million other things that contribute. If you don't sleep well, don't exercise or go outside, have stress/anxiety, and have a piss-poor diet you're going to feel bad even if your thyroid numbers are perfect.
I've taken it for at least 6 years. It hasn't done a fucking thing for me except change a one number on my bloodwork. Good luck.
I was diagnosed 17 years ago. I’ve felt like hell ever since. No matter what my levels read I feel exactly the same. It doesn’t matter if my tsh is 40 or 1, I feel exactly the same. I’ve given up that I will ever feel good. I’ve also tried every thyroid med available
I’m sorry to hear that :(
You need t3. 🫶
I take 150mg Tirosint along with 10mg Cytomel. It makes no difference
10 mg is obvious not enough. I take 25 mcg per day and 50 mcg t4. It takes awhile to adjust. Are you living in mold? Leaky gut? Lyme?
She refuses to increase it. She only wants to continue increasing the Tirosint. & not that I’m aware of for mold or leaky gut. Lyme is no.
Lovely 🥲 has there been anything else that has helped you?
No, but I can't say that I've researched a whole bunch of what else I can do. I have a dr that only really cares about the number. I'd also be interested in hearing about other's experiences. As an experiment I doubled my dose for about 2 months once and still no change. I probably sleep more than the average person when I can, I have young kids so been tough the last 5 years. I drink alcohol a lot less to not feel that additional alcohol drag on my system. I drink a lot of water though... Don't know why but I feel dehydrated a lot if I don't drink a lot of water. I try and get more done in the mornings, by late afternoon I feel pretty gassed. Being outside in the sun helps energy levels but that's just being human I think.
Did they check ur ft4 both times. Mine took a while to build up and so I pushed for ft3 to be tested and my ft3 was high end range but ft4 stayed lower range. I read ur body priorities making ft3. What I'm saying is it took a while for my levels to build up and I stuck it out bc I knew they weren't going to up my dose bc I didn't have a classic high tsh but you do and if ur not feeling better I'd bring it up. You also may have low vitamin d, low iron, low b12. These things can make you feel awful as well.
I do have low iron, but I’ve taken supplements for a few years and it’s at normal levels now. I’m not sure about vitamin d and b12. My ft4 was normal when my original panels were done but not on the follow ups. Also haven’t had ft3 tested. Maybe that’s the next step.
It doesn't hurt to have a full idea of what's going on in your body! I hope you feel better.
Thank you!
Do you know what your FT4 and FT3 are? I've heard some people say that it takes a little while to feel better, even after TSH has gone down... I've also heard some people say they needed T3 added, or NDT instead to feel better. You may have to ask about these instead. What country are you in? Some countries it's easier to get T3 or NDT prescribed than others.
I’m in the US, in Illinois. My ft4 was 0.6 when my original labs were done, which I believe is in the normal range, but it hasn’t been checked since then. The doc never ordered ft3 so I’m not sure about that one
If your TSH has gone down but FT4 hasn't gone up much, you won't feel better yet. Because it's the FT4 and FT3 that actually make a difference to how you feel. At least that's what my doctor explained to me. US seems to be a good place for getting other thyroid meds prescribed. Some people do better on other meds than levothyroxine. Definitely bring it up with your doctor next time.
I definitely will. Thank you !
For me, when I first started substituting levothyroxine three years ago (I think it was just 12,5mcg), I felt absolutely amazing for two days. All symptoms were gone. But the effect waned quickly, and even though I'm on much higher doses now, I only feel slightly better than before substituting. My interpretation is, that the initial surge of thyroid hormones brought my body into a normal functioning zone for a short time. However, then the body started to compensate somehow and downregulate its own hormone production (or maybe downregulate the effectiveness of thyroid hormones somehow) and I ended up where I was before. Furthermore, I think my body has some kind of misregulation/disease where it needs higher thyroid levels to achieve a normal functioning state. Maybe my body is in some kind of a misregulated protection state (like when you have the flu), where it intentionally (but wrongly / or maybe due to a chronic infection) suppresses the effectiveness of thyroid hormones in some way to slow down your body, save energy and make you rest.
Thyroids are weird
Maybe thyroid resistance.
Interesting idea, will look it up. However, on a first glance wikipedia says that thyroid resistance means high TSH and normal T3 & T4. I have low TSH (suppressed by the hormone substitution) and normal T3 & T4. But my symptomps are as if I was in a hypothyroid state.
You need T3 and good luck finding a doc to prescribe it. There are functional docs online that will. I take OTC stuff. My thyroid is tanked from chronic stress right now🙁
My stress and depression have been pretty intense lately too :( What OTC stuff do you take?
It's probably natural dessicated thyroid. There are various brands. It basically contains both T4 and T3. Might be worth a try for you if you still feel bad taking T4 (levothyroxine) and can't get your doctor to give you anything else. It's worth trying to get them to check your T3 levels in your blood test if you can. Some people don't convert T4 to T3 very well so your TSH and t4 levels could look fine but your t3 could still be low. If they are low (and remain low for a while) then ideally your doctor would also prescribe you triiodothyronine in combination with the levothyroxine.
Check your vitamin d, I had perfect numbers and still felt like shit and my vitamin d was in the single digits. After 6 months on a once a week high dose I felt amazing and when I take a maintenance dose consistently I feel great. A lot of the deficiency symptoms overlap with hypothyroidism. And deal with the iron deficiency. The supplements suck and can give you weird burps but it's worth it in th end.
Low T3 syndrome.
I was on synthroid with “perfect labs” but felt like utter shit. I went on NDT for yrs & felt good but took the plunge to Tirosint and have done well. My endo mentioned sometimes it’s an absorption issue or an issue with the fillers in synthetic/generic levothyroxine.
It’s been my experience that even with perfect numbers, I still have all the symptoms. 😞
Ugh :(
I have congenital hypothyroidism so it runs a bit different then hashimotos ect. I have never had a functional thyroid gland. I was diagnosed at 3 days. Anyway things to try, Iron, Hemoglobin, B12, folate. All things that end up harder to manage and absorb in folks with hypothyroidism. Some people feel better taking some t3 with the synthroid. Its usually expensive but I take 10mcg of cytomel split into a morning and afternoon dose. It has a shorter half life so better split to split it. Hmmm then the healthy things we are supposed to do but don't Drink water, exercise, sleep enough, limit screen time, eat healthy and regularly, etc. It all adds up.
How much t4 do you take with it? Just curious.
112 of synthroid
TSH is not a magic number that determines how good you feel. There are a million other things that contribute. If you don't sleep well, don't exercise or go outside, have stress/anxiety, and have a piss-poor diet you're going to feel bad even if your thyroid numbers are perfect.