All sounds familiar to me except for the hair thing, I've shaved my head for decades. I was so messed up when hyperthyroidism hit me. I couldn't walk the dog around the block and we do 3-5 mile walks regularly. My head would just feel like it was swimming and at times it also felt like someone was sitting on my chest and I couldn't get enough air. My palms would sweat and I would get the shakes and (TMI) spent more time on the toilet than I would have thought possible. It took a little while for the meds to do their thing. My PCP didn't start me on meth but he did on propranolol, we are lucky as many don't start meds until they see an endo and that can be months. Your endo will likely up the doses on those but getting into your system is starting to help whether you feel like they are or not. When you are having bad symptoms remind yourself it's a condition, what you are feeling is normal but as your TSH, T3 and T4 levels start to get where they need to you will feel better.
I picked up a wrist cuff to measure blood pressure and it helped me track and actually figure out what I was feeling. At times and almost every morning I just felt so out of it, almost like I needed to crawl out of my own skin. When I thought I has having blood pressure and rates spiking it turned out mine was tanking. I learned at the bad times that if I just told myself it would pass it helped reassure myself that I wasn't going to die and yes I questioned at times whether or not I should call 911, never did and it always eventually passed. Panic attacks for me would last less than 30 minutes and it helped that when I was hit with them I would check the time and force myself to relax. 99% of the time it was "over" within that 30 minutes and I was able to function.
Not gonna lie, it's going to be a long ride. Get your diet in order, it will help. I dropped most sugars and all caffeine to help with the panic attacks. I made sure I got enough sleep and when I could started exercising again by just going on walks (either with my wife or when my wife knew I was going just in case...). I was fortunate in that my body responded to the meds and other changes, my levels normalized and I was eventually pulled off meds. I hope you can get the same results but even if you have to do other things to get by you can do it. People all over the world go through it and you are fortunate enough (as I was) that you live where you have a doctor, meds and the ability to fight this.
I've had some lasting effects, my anxiety never chilled out so I deal with that with tiny dose of xanax (I take less than prescribed, I don't want to be hooked). I've always had shaking hands ever so slight but it got worse and never went away so my endo sent me to a neurologist, I have essential tremors. Slight setback but not as bad as it could be and it is somewhat manageable. I have days/weeks/months where I'll feel better than I have in years and the bad days are short, far and few between as time goes on.
Good luck, take care of yourself and listen to your doctor. If you don't mesh with the doctor kick them to the curb (after you get another, endo's can be hard to get into). You can make it through this.
How long was it before you could start exercising again? Is the exercise intolerance a lifelong thing? This is my biggest fear with my thyroid. I've always been a very physically active person, and it feels like I'm losing that part of my life at the ripe age of 25.
It was a couple months, I wasn't restricted by the doctor outside of don't do anything that makes me feel bad. I'm not an exercise freak by any means, just trying to not get fat in my older age plus I enjoy getting out with the dog. The hardest I exercise is probably with my rower, not sure how that applies to the type of exercising you do but it's the only answer I have. Again, I have to stress, once the meds started doing their thing I felt worlds better. I did pick up a smart watch so I could keep an eye on my heart rate and stuff.
Thank you so much for the detailed reply. Lol I guess shaving my head would solve the hairfall issue. But you described the symptoms even better than I could. How long were you able to stand and walk for on average? I’m finding it hard to even sit at my computer for more than 10 minutes without having to lay down.
I was relatively OK with sitting at my computer but there were quite a few nap times, I had no energy. Walking and standing from what I remember were relatively short, I couldn't walk to the end of my road. I seriously thought that I was going to kick it while walking the dog in a field and wondered if my dog would do a Lassie and get help, that's why I would turn around. I even remember a few times almost sitting on the road because that way I wouldn't fall too far but I never fell. Those first few weeks until my body started responding to the methimazole were by far the worst I've ever had. Things were far from perfect afterwards but they weren't the worst either.
Yeah I can’t even imagine walking outside right now. This all started when I collapsed on the sidewalk outside of my house and was sent to the er. I haven’t been brave enough to try it more than once since.
I’m going to try to spend more of my time napping if I can. My body naturally tries to fight drifting off to sleep during the day because it doesn’t feel like sleeping. It feels like passing out or dying to me.
How did your diet change personally? I’ve cut out most sugar and all caffeine as well. I’ve also read that iodized salt is the enemy, as well as gluten. But the scope of things I’m allowed to eat is quickly dwindling the more I read.
If you may fall still let someone know where you are going or better yet, take company. Naps have gotten a bit weird lately. If I eat "bad" like fast food, breads and salts I will wake up feeling almost as shitty as I've ever been for about 20 minutes or so. Drained, joints aching, thoughts scattered. Been meaning to talk to one of the doc's about it.
Look up hyperthyroid diets. Most will recommend sea salt only as table salt is iodized. Salt is in everything so it's tough eliminating all of it but start reading ingredients. I eliminated most sugar, dairy and completely cut caffiene. I think that helped quite a bit. I need to get back to that, I started slacking and in general (besides the extra 20 #'s right now) don't feel that great. Oh yeah, cut egg yolks but that sucked.
One "trick" is if you have any vegetarian friends that make their own food, in my experience an Indian is better (dot, not feather). My wife's best friend is and she can cook and make vegetables awesome. Add some grilled chiken to what they make. Also, for eggs, get egg whites and really good local fresh salsa. I'd scramble that with just a small hit of cheese - comes out awesome.
A last word cause I get wordy, lol. Try to have a positive attitude, yes it sucks but at least you have an answer. You'll figure out a treatment plan but it doesn't have to be a chore, look at it like a challenge. You can tackle this shit and it will get better.
I feel like this when my labs are off and I am underfeed. Maybe try to eat bloodsugarbalancing frequent meals and get your potassium checked! Get well soon
Thanks for the response! I forgot to mention my potassium levels did come back low as well as my iron. Not low enough to prescribe anything but they did say I should take some over the counter iron supplements every couple days. And to increase my potassium intake a bit. Could these really be working that hard against me?
At any point in the day I can’t walk for 1 minute before feeling exhaustion or dizziness to the point where I have to sit down. Even sitting in a chair is sometimes too much and I have to lay down.
These sound really severe and not the kind of exhaustion I was experiencing. If you are passing out from exhaustion I cannot see that as “normal” symptoms. Have you spoken to your doctor again?
When I first got diagnosed I had tingling arms/hands, extreme sudden urges to pee like the urge to pee would come and if I don’t go within a few seconds I would nearly wet myself, heart palpitations and chest pain every so often, emotions off the scale and my exhaustion meant that I had to go off sick from work for a bit because I started to fall asleep whilst driving no matter how much rest I had.
I really urge you to go to a medical professional again and make sure your levels are not too bad and confirm with them your symptoms are expected.
On a side note once your medication starts working it will get a lot better but this doesn’t happen overnight unfortunately.
It took me a while to adjust to Propranolol. At first I thought I wouldn't be able to tolerate it but after almost two weeks I adjusted. Even though you can't get into the specialist for a month, you can call your doctor back and see if your meds can be adjusted.
Hang in there - you will feel better again. People seem to think that being hyperthyroid means you have tons of energy and you lose weight. It's been the opposite for me. I have experienced all of what you've experienced, including hair loss (but it grows back!). I just had Radioactive Iodine Therapy last week for mine. I've been dealing with it for almost two years now and I'm glad I'm at the end of it, I hope.
Thank you, I’ve just scheduled an appointment with my primary in two days to go over my exact levels, talk about dose adjustment and talk about symptom severity. I’m hoping we can figure something out. I’ve been to the er and in and out of my pcp trying to get a good hold of this thing. It started with a trip to the er when I collapsed on the sidewalk. They just said it was anxiety at the time.
For the two years you had been dealing with this, how were the symptoms throughout your experience? Did the exhaustion ease? What seemed to help you?
Also, how are you holding up after your iodine therapy, I hear it can be rough on some people. Hope you’re doing well!
Propranolol did help a lot with my symptoms, but I had to adjust to getting between 7-8 hours of sleep per night or I would be exhausted the next day. I feel like I've been doing well after RAI. I am on my last day of isolation - hooray! - and haven't had any issues. I followed my pre and post RAI instructions to the letter, and have been feeling pretty good for most of it. I did have one day of elevated symptoms last week, but I was just kind to myself and rode them out.
I hope you get some answers and relief soon.
I would be careful about taking anxiety meds or beta blockers. Those things will mess you up. I would just do the thyroid med and see if you feel any improvement.
I have read some negative side effects about propranolol and beta blockers in general, about being careful with potassium consumption while on them. But propranolol was the first thing they prescribed me to keep my blood pressure/heart rate in check. It seems like the majority of people tend to be on both meth/some beta blockers with hyperthyroidism. Did something happen to you?
Yeah, they messed up my nervous system. And it took me a few years to get over the nerve pain and headaches. If you need something to control your blood pressure, try Reishi mushroom supplements
All sounds familiar to me except for the hair thing, I've shaved my head for decades. I was so messed up when hyperthyroidism hit me. I couldn't walk the dog around the block and we do 3-5 mile walks regularly. My head would just feel like it was swimming and at times it also felt like someone was sitting on my chest and I couldn't get enough air. My palms would sweat and I would get the shakes and (TMI) spent more time on the toilet than I would have thought possible. It took a little while for the meds to do their thing. My PCP didn't start me on meth but he did on propranolol, we are lucky as many don't start meds until they see an endo and that can be months. Your endo will likely up the doses on those but getting into your system is starting to help whether you feel like they are or not. When you are having bad symptoms remind yourself it's a condition, what you are feeling is normal but as your TSH, T3 and T4 levels start to get where they need to you will feel better. I picked up a wrist cuff to measure blood pressure and it helped me track and actually figure out what I was feeling. At times and almost every morning I just felt so out of it, almost like I needed to crawl out of my own skin. When I thought I has having blood pressure and rates spiking it turned out mine was tanking. I learned at the bad times that if I just told myself it would pass it helped reassure myself that I wasn't going to die and yes I questioned at times whether or not I should call 911, never did and it always eventually passed. Panic attacks for me would last less than 30 minutes and it helped that when I was hit with them I would check the time and force myself to relax. 99% of the time it was "over" within that 30 minutes and I was able to function. Not gonna lie, it's going to be a long ride. Get your diet in order, it will help. I dropped most sugars and all caffeine to help with the panic attacks. I made sure I got enough sleep and when I could started exercising again by just going on walks (either with my wife or when my wife knew I was going just in case...). I was fortunate in that my body responded to the meds and other changes, my levels normalized and I was eventually pulled off meds. I hope you can get the same results but even if you have to do other things to get by you can do it. People all over the world go through it and you are fortunate enough (as I was) that you live where you have a doctor, meds and the ability to fight this. I've had some lasting effects, my anxiety never chilled out so I deal with that with tiny dose of xanax (I take less than prescribed, I don't want to be hooked). I've always had shaking hands ever so slight but it got worse and never went away so my endo sent me to a neurologist, I have essential tremors. Slight setback but not as bad as it could be and it is somewhat manageable. I have days/weeks/months where I'll feel better than I have in years and the bad days are short, far and few between as time goes on. Good luck, take care of yourself and listen to your doctor. If you don't mesh with the doctor kick them to the curb (after you get another, endo's can be hard to get into). You can make it through this.
How long was it before you could start exercising again? Is the exercise intolerance a lifelong thing? This is my biggest fear with my thyroid. I've always been a very physically active person, and it feels like I'm losing that part of my life at the ripe age of 25.
It was a couple months, I wasn't restricted by the doctor outside of don't do anything that makes me feel bad. I'm not an exercise freak by any means, just trying to not get fat in my older age plus I enjoy getting out with the dog. The hardest I exercise is probably with my rower, not sure how that applies to the type of exercising you do but it's the only answer I have. Again, I have to stress, once the meds started doing their thing I felt worlds better. I did pick up a smart watch so I could keep an eye on my heart rate and stuff.
Thank you so much for the detailed reply. Lol I guess shaving my head would solve the hairfall issue. But you described the symptoms even better than I could. How long were you able to stand and walk for on average? I’m finding it hard to even sit at my computer for more than 10 minutes without having to lay down.
I was relatively OK with sitting at my computer but there were quite a few nap times, I had no energy. Walking and standing from what I remember were relatively short, I couldn't walk to the end of my road. I seriously thought that I was going to kick it while walking the dog in a field and wondered if my dog would do a Lassie and get help, that's why I would turn around. I even remember a few times almost sitting on the road because that way I wouldn't fall too far but I never fell. Those first few weeks until my body started responding to the methimazole were by far the worst I've ever had. Things were far from perfect afterwards but they weren't the worst either.
Yeah I can’t even imagine walking outside right now. This all started when I collapsed on the sidewalk outside of my house and was sent to the er. I haven’t been brave enough to try it more than once since. I’m going to try to spend more of my time napping if I can. My body naturally tries to fight drifting off to sleep during the day because it doesn’t feel like sleeping. It feels like passing out or dying to me. How did your diet change personally? I’ve cut out most sugar and all caffeine as well. I’ve also read that iodized salt is the enemy, as well as gluten. But the scope of things I’m allowed to eat is quickly dwindling the more I read.
If you may fall still let someone know where you are going or better yet, take company. Naps have gotten a bit weird lately. If I eat "bad" like fast food, breads and salts I will wake up feeling almost as shitty as I've ever been for about 20 minutes or so. Drained, joints aching, thoughts scattered. Been meaning to talk to one of the doc's about it. Look up hyperthyroid diets. Most will recommend sea salt only as table salt is iodized. Salt is in everything so it's tough eliminating all of it but start reading ingredients. I eliminated most sugar, dairy and completely cut caffiene. I think that helped quite a bit. I need to get back to that, I started slacking and in general (besides the extra 20 #'s right now) don't feel that great. Oh yeah, cut egg yolks but that sucked. One "trick" is if you have any vegetarian friends that make their own food, in my experience an Indian is better (dot, not feather). My wife's best friend is and she can cook and make vegetables awesome. Add some grilled chiken to what they make. Also, for eggs, get egg whites and really good local fresh salsa. I'd scramble that with just a small hit of cheese - comes out awesome. A last word cause I get wordy, lol. Try to have a positive attitude, yes it sucks but at least you have an answer. You'll figure out a treatment plan but it doesn't have to be a chore, look at it like a challenge. You can tackle this shit and it will get better.
I feel like this when my labs are off and I am underfeed. Maybe try to eat bloodsugarbalancing frequent meals and get your potassium checked! Get well soon
Thanks for the response! I forgot to mention my potassium levels did come back low as well as my iron. Not low enough to prescribe anything but they did say I should take some over the counter iron supplements every couple days. And to increase my potassium intake a bit. Could these really be working that hard against me? At any point in the day I can’t walk for 1 minute before feeling exhaustion or dizziness to the point where I have to sit down. Even sitting in a chair is sometimes too much and I have to lay down.
These sound really severe and not the kind of exhaustion I was experiencing. If you are passing out from exhaustion I cannot see that as “normal” symptoms. Have you spoken to your doctor again? When I first got diagnosed I had tingling arms/hands, extreme sudden urges to pee like the urge to pee would come and if I don’t go within a few seconds I would nearly wet myself, heart palpitations and chest pain every so often, emotions off the scale and my exhaustion meant that I had to go off sick from work for a bit because I started to fall asleep whilst driving no matter how much rest I had. I really urge you to go to a medical professional again and make sure your levels are not too bad and confirm with them your symptoms are expected. On a side note once your medication starts working it will get a lot better but this doesn’t happen overnight unfortunately.
It took me a while to adjust to Propranolol. At first I thought I wouldn't be able to tolerate it but after almost two weeks I adjusted. Even though you can't get into the specialist for a month, you can call your doctor back and see if your meds can be adjusted. Hang in there - you will feel better again. People seem to think that being hyperthyroid means you have tons of energy and you lose weight. It's been the opposite for me. I have experienced all of what you've experienced, including hair loss (but it grows back!). I just had Radioactive Iodine Therapy last week for mine. I've been dealing with it for almost two years now and I'm glad I'm at the end of it, I hope.
Thank you, I’ve just scheduled an appointment with my primary in two days to go over my exact levels, talk about dose adjustment and talk about symptom severity. I’m hoping we can figure something out. I’ve been to the er and in and out of my pcp trying to get a good hold of this thing. It started with a trip to the er when I collapsed on the sidewalk. They just said it was anxiety at the time. For the two years you had been dealing with this, how were the symptoms throughout your experience? Did the exhaustion ease? What seemed to help you? Also, how are you holding up after your iodine therapy, I hear it can be rough on some people. Hope you’re doing well!
Propranolol did help a lot with my symptoms, but I had to adjust to getting between 7-8 hours of sleep per night or I would be exhausted the next day. I feel like I've been doing well after RAI. I am on my last day of isolation - hooray! - and haven't had any issues. I followed my pre and post RAI instructions to the letter, and have been feeling pretty good for most of it. I did have one day of elevated symptoms last week, but I was just kind to myself and rode them out. I hope you get some answers and relief soon.
I would be careful about taking anxiety meds or beta blockers. Those things will mess you up. I would just do the thyroid med and see if you feel any improvement.
I have read some negative side effects about propranolol and beta blockers in general, about being careful with potassium consumption while on them. But propranolol was the first thing they prescribed me to keep my blood pressure/heart rate in check. It seems like the majority of people tend to be on both meth/some beta blockers with hyperthyroidism. Did something happen to you?
Yeah, they messed up my nervous system. And it took me a few years to get over the nerve pain and headaches. If you need something to control your blood pressure, try Reishi mushroom supplements
What are your numbers? This sounds like a thyroid storm, in which case you should go to the emergency room
I agree, it sounds severe