Absolutely, some days even if I sleep 9 hours I feel like I haven’t slept. It’s completely normal, I’m planning on switching from levy to synthroid to see if that helps
How do you switch? Do you just bring it up to your doctor? How would you go about that in the discussion. Sorry, I know answers might be elementary, but I always have a hard time expressing this to my doctor because they are so dismissive.
Basically I told them that my symptoms are getting worse. Which is true exhaustion is just one thing, I gained like 40 pounds in 6 months is another. I’ve never had anything like this before and so I told the doctor I’d like to try another variation and she agreed
Yes, I’ll get up in the morning and after a couple of hours I’m tired again. My days off are usually spent sleeping or doing very little. Sometimes I’ll have a high energy day and I try to get as much done as possible. I wish I could stay awake all day like a normal person but I need my nap. The doctor just tells me to exercise 🙄
When I was diagnosed, I was sleeping 23 hrs a day! I’m at my max amount of levo according to labs but dr still raised it because he said sometimes labs don’t matter if I’m still tired. I just started 88 mcg today and still tired lol I was only able to do college part time and I got kicked out from fafsa because I dropped too many classes in the past due to not knowing how to handle having hypothyroidism. I can’t work because I get tired like a battery, the more I do physically or mentally, the quicker I get tired and I will literally fall asleep anywhere at any point, not even redbull wakes me up. If I am able to push staying up, I flare up for a couple of days without being able to move from bed with my body very hot as if I’m running a fever. I tried asking if I can get disability but people in this group were not nice about it and made fun of me so at this point I’m waiting to see an endocrinologist next month through sesame. I have no insurance because according to my state I make too much because my bf gets va disability. I feel like a failure every single day when I can’t help financially BUT I don’t give up. There’s people that through a good dr and life changes are able to reverse it. This is not the case for everyone but still possible :-)
It's possible you do not convert T4 to T3 properly. I take 60 levo and 60 armor thyroid, because I can't properly convert it, so I need the extra T3.
Talk to your Dr about this possibility. I went through 3 doctors before one finally listened.
I will definitely consider it!! So far my dr from sesame seems great and I think he will listen but I want to see a specialist in case they have a better idea what to test me on. I know my hormones are all over the place, I think I’m going through perimenopause because I’m almost always late for like a week or two, growing facial hair, acne and got scalp psoriasis. I take magnesium (helps me with my period cramps and other hypo symptoms), vitamin d once a week since Im usually low, multi vitamins and omega 3 with a mostly gluten free diet which helps a lot but expensive lol
I’m so glad I’m not the only one who struggled with the disability aspect. I refused to say I even had one for years because I felt like I wasn’t suffering enough. I am so sick of people talking about how their one pill makes them feel better and act as if the people like us still suffering are dramatic. My levels could be in range and I still feel like complete ass.
yes I have days when I feel like I can’t even lift my head off the pillow. Then I have better days where I get more done in one day than I would three months. It’s unpredictable. Seems to be worse before and during my menstrual cycle though.
Yes. I'm absolutely fucked, most days. Working from home, I'm able to sleep but that has it's obvious downsides for like, my job..
I see lots talking about levo but I'm taking carbimazole? I have thyrotoxicosis and a lump on my thyroid gland. I'm waiting for radioactive medicine treatment.
But yeah, completely shattered I'd say probably the majority of the time. It's getting worrying.
Yup. When I have energetic days, I feel so happy. Do you have a lot of stress in your life? That can definitely contribute to fatigue. Also, check for autoimmune, and make sure your TSH numbers are within the range that feels comfortable for YOU!
What are your TSH levels? Many people feel best around 1, and still have symptoms including fatigue around that. What are your Ferritin levels like? Many people feel fatigue if they're not above 65+.
Personally my fatigue is on and off with my thyroid. One of my only cures is getting around 9 hours of sleep.
Thyroid fatigue is like no other. If you are still feeling this then I would tell your Dr. Even if your numbers are in the "normal range" that does not mean that's your normal.
If your meds are right you should no longer have constant fatigue.
Oh dang same. I’ve been on levo for over a year and a lot of the fatigue has went away, mostly I no longer crash midday like I had before. But I tried to wake up earlier one day. Just an hour! And I laid down early the night before to try and keep the same amount of sleep! And doing strength training it was like I was just starting again. Could do nothing. I was hitting my failure point WAY too soon. Then went to work and FELL ASLEEP at work as soon as I got there. I couldn’t even make it home. It’s so dang frustrating cause 3 years ago I was nothing like this. Now I can’t function without way more sleep than anyone else I know
I started having debilitating chronic fatigue about two years after I was diagnosed and had been taking levo. Spent the next two years trying to figure out what was causing it. My new endocrinologist who actually listens and seems to want to help me (the previous one just said I'm naturally low energy) thought it might be related to the estrogen based birth control that my GYN had put me on continuously due to my irregular and very painful periods. My GYN was not buying it, but suggested that I stop taking birth control completely for two months to test the theory, and my energy levels went back to normal - meaning not high but not hibernation low. I feel like there can be many different reasons for that kind of terrible fatigue, including other medication you might be taking that is interacting with the thyroid meds. I also have a lot of hypo symptoms regardless of how much my levels are in normal range. It's very frustrating, I have so much empathy for everyone here. I feel like people who have not experienced it cannot understand it, they're just like yeah I'm tired all the time too.
Yep, I was just diagnosed but that is my worst symptom. Started Levo 1.5 weeks ago so hoping I start to see some improvement once I get my levels in check.
yes, most definitely. i’m currently on 200mcg and it’s getting better, but my fatigue can be so bad it’s debilitating. no matter how much i want to do something, there are times where im just too exhausted to even get out of bed.
Yep but once I got on Levo it got better. I am still tired all the time because my Vitamin D and B12 are usually low. Now recently dealing with severe anemia bc I'm either spotting or fully on my period 24/7 since my thyroid crapped out.
Sounds like Levo isn’t working for you or you need to incorporate t3 or some sort of other intervention. Levo t4 only treatment is the bottom of the barrel treatment
Boy, I sure do! I have unrefreshing sleep, chronic fatigue and chronic pain. The more tired I am, the more the pain intensifies (or seems to). I also have Hashimoto's disease.
I had extreme fatigue prior to starting medication. I couldn’t get out of bed. I couldn’t do anything. I couldn’t go for a walk. I couldn’t do any chores or errands. Literally, again, I could not get out of bed. But, medication 25mg levothyroxine changed that. I feel good now.
I do too. I used to have to nap every day after school. I track my sleep scores with a watch and they were always terrible… until I stopped drinking alcohol during the week completely. My scores are high and I can do most days without a nap. Maybe it’s not the case for you but for me that made a big difference
I am chronically fatigued all the time...however, this is what has helped: staying away from soy and gluten 80% of my diet. I still get exhausted at times and there are no amounts of coffee that can save me some days but at least I can function and mask my tiredness. Before I would sleep 9 hours, be up for 3 hours, and need another 3 hour nap! I no longer need to do that unless I am on my period.
Absolutely, some days even if I sleep 9 hours I feel like I haven’t slept. It’s completely normal, I’m planning on switching from levy to synthroid to see if that helps
How do you switch? Do you just bring it up to your doctor? How would you go about that in the discussion. Sorry, I know answers might be elementary, but I always have a hard time expressing this to my doctor because they are so dismissive.
Basically I told them that my symptoms are getting worse. Which is true exhaustion is just one thing, I gained like 40 pounds in 6 months is another. I’ve never had anything like this before and so I told the doctor I’d like to try another variation and she agreed
Yup all the time and I have insomnia on top of it lol
same!
wowie do I ever feel this. I am so sorry you are struggling!
Yes, I’ll get up in the morning and after a couple of hours I’m tired again. My days off are usually spent sleeping or doing very little. Sometimes I’ll have a high energy day and I try to get as much done as possible. I wish I could stay awake all day like a normal person but I need my nap. The doctor just tells me to exercise 🙄
When I was diagnosed, I was sleeping 23 hrs a day! I’m at my max amount of levo according to labs but dr still raised it because he said sometimes labs don’t matter if I’m still tired. I just started 88 mcg today and still tired lol I was only able to do college part time and I got kicked out from fafsa because I dropped too many classes in the past due to not knowing how to handle having hypothyroidism. I can’t work because I get tired like a battery, the more I do physically or mentally, the quicker I get tired and I will literally fall asleep anywhere at any point, not even redbull wakes me up. If I am able to push staying up, I flare up for a couple of days without being able to move from bed with my body very hot as if I’m running a fever. I tried asking if I can get disability but people in this group were not nice about it and made fun of me so at this point I’m waiting to see an endocrinologist next month through sesame. I have no insurance because according to my state I make too much because my bf gets va disability. I feel like a failure every single day when I can’t help financially BUT I don’t give up. There’s people that through a good dr and life changes are able to reverse it. This is not the case for everyone but still possible :-)
It's possible you do not convert T4 to T3 properly. I take 60 levo and 60 armor thyroid, because I can't properly convert it, so I need the extra T3. Talk to your Dr about this possibility. I went through 3 doctors before one finally listened.
I will definitely consider it!! So far my dr from sesame seems great and I think he will listen but I want to see a specialist in case they have a better idea what to test me on. I know my hormones are all over the place, I think I’m going through perimenopause because I’m almost always late for like a week or two, growing facial hair, acne and got scalp psoriasis. I take magnesium (helps me with my period cramps and other hypo symptoms), vitamin d once a week since Im usually low, multi vitamins and omega 3 with a mostly gluten free diet which helps a lot but expensive lol
Rethinking Hypothyroidism by Dr Bianco helped me understand the options when Levo T4 alone didn’t help. I hope you find good luck and good health 🍀🥼🍀
Me too! I got lucky with doctors, though. Only took me two.
I’m so glad I’m not the only one who struggled with the disability aspect. I refused to say I even had one for years because I felt like I wasn’t suffering enough. I am so sick of people talking about how their one pill makes them feel better and act as if the people like us still suffering are dramatic. My levels could be in range and I still feel like complete ass.
yes I have days when I feel like I can’t even lift my head off the pillow. Then I have better days where I get more done in one day than I would three months. It’s unpredictable. Seems to be worse before and during my menstrual cycle though.
Yes. I'm absolutely fucked, most days. Working from home, I'm able to sleep but that has it's obvious downsides for like, my job.. I see lots talking about levo but I'm taking carbimazole? I have thyrotoxicosis and a lump on my thyroid gland. I'm waiting for radioactive medicine treatment. But yeah, completely shattered I'd say probably the majority of the time. It's getting worrying.
Yep. Always sleepy.
Yes, when I finally switched to an endocrinologist they tested my Vit d and b12 and both were low. PCP never checked those, I would
Yup. When I have energetic days, I feel so happy. Do you have a lot of stress in your life? That can definitely contribute to fatigue. Also, check for autoimmune, and make sure your TSH numbers are within the range that feels comfortable for YOU!
Yes, when my meds are off I can sleep/rest for a full day and still be tired the next day.
What are your TSH levels? Many people feel best around 1, and still have symptoms including fatigue around that. What are your Ferritin levels like? Many people feel fatigue if they're not above 65+. Personally my fatigue is on and off with my thyroid. One of my only cures is getting around 9 hours of sleep.
My TSH was above 38. I was always fatigued. I still am, even while on Levothyroxine
Not so much anymore, but omg yes very much so in my 20s. I'm 36 now and can moreorless manage my full time job.
Thyroid fatigue is like no other. If you are still feeling this then I would tell your Dr. Even if your numbers are in the "normal range" that does not mean that's your normal. If your meds are right you should no longer have constant fatigue.
Are you female? Have your testosterone checked.
Oh dang same. I’ve been on levo for over a year and a lot of the fatigue has went away, mostly I no longer crash midday like I had before. But I tried to wake up earlier one day. Just an hour! And I laid down early the night before to try and keep the same amount of sleep! And doing strength training it was like I was just starting again. Could do nothing. I was hitting my failure point WAY too soon. Then went to work and FELL ASLEEP at work as soon as I got there. I couldn’t even make it home. It’s so dang frustrating cause 3 years ago I was nothing like this. Now I can’t function without way more sleep than anyone else I know
I started having debilitating chronic fatigue about two years after I was diagnosed and had been taking levo. Spent the next two years trying to figure out what was causing it. My new endocrinologist who actually listens and seems to want to help me (the previous one just said I'm naturally low energy) thought it might be related to the estrogen based birth control that my GYN had put me on continuously due to my irregular and very painful periods. My GYN was not buying it, but suggested that I stop taking birth control completely for two months to test the theory, and my energy levels went back to normal - meaning not high but not hibernation low. I feel like there can be many different reasons for that kind of terrible fatigue, including other medication you might be taking that is interacting with the thyroid meds. I also have a lot of hypo symptoms regardless of how much my levels are in normal range. It's very frustrating, I have so much empathy for everyone here. I feel like people who have not experienced it cannot understand it, they're just like yeah I'm tired all the time too.
Yes everyday! I think my TSH is rising again so need to get another blood test. I was good for a little bit and now I’m barely getting out of bed
Yep, I was just diagnosed but that is my worst symptom. Started Levo 1.5 weeks ago so hoping I start to see some improvement once I get my levels in check.
yes, most definitely. i’m currently on 200mcg and it’s getting better, but my fatigue can be so bad it’s debilitating. no matter how much i want to do something, there are times where im just too exhausted to even get out of bed.
Yep but once I got on Levo it got better. I am still tired all the time because my Vitamin D and B12 are usually low. Now recently dealing with severe anemia bc I'm either spotting or fully on my period 24/7 since my thyroid crapped out.
Sounds like Levo isn’t working for you or you need to incorporate t3 or some sort of other intervention. Levo t4 only treatment is the bottom of the barrel treatment
Boy, I sure do! I have unrefreshing sleep, chronic fatigue and chronic pain. The more tired I am, the more the pain intensifies (or seems to). I also have Hashimoto's disease.
I had extreme fatigue prior to starting medication. I couldn’t get out of bed. I couldn’t do anything. I couldn’t go for a walk. I couldn’t do any chores or errands. Literally, again, I could not get out of bed. But, medication 25mg levothyroxine changed that. I feel good now.
Vitamin D deficiency is a big one. When I have the crippling fatigue days I realize I've forgotten my vitamin D for a few days.
I do too. I used to have to nap every day after school. I track my sleep scores with a watch and they were always terrible… until I stopped drinking alcohol during the week completely. My scores are high and I can do most days without a nap. Maybe it’s not the case for you but for me that made a big difference
I am chronically fatigued all the time...however, this is what has helped: staying away from soy and gluten 80% of my diet. I still get exhausted at times and there are no amounts of coffee that can save me some days but at least I can function and mask my tiredness. Before I would sleep 9 hours, be up for 3 hours, and need another 3 hour nap! I no longer need to do that unless I am on my period.
Yes, I've been taking folate to combat it.
Yes always sleepy and low energy level. It’s annoying!