Unknown condition, overheating / heat stroke. Any help?

Posted by skidmarkwarrior @skidmarkwarrior, Jan 3, 2019

Hey guys. I am getting desperate and I don't know what else to do! Maybe if my story can spread around the internet, someone might be able to help.

TL;DNR: For the past 20-something years, I have been extremely sensitive to heat and my body overheats with even the slightest bit of physical activity, even when ambient temperature is cool. I've had many blood samples drawn over the years, and tested for all kinds of thyroid/endocrine conditions, and everything always comes back normal. My condition is getting worse, I feel like crap every day, and I now have extreme fatigue and exhaustion to the point where I can't stay awake at work. Depression is hitting me hard because I just can't do anything with my life because of this condition. Thank you for taking the time to read this. Here's my story in detail:

I am a 36 year old male, 270 pounds, born and raised in California. As a kid, I was "husky", but not obese, though I started leaning out around 12 years old. When I was about 14, during summer vacation, I was in my back yard playing basketball with a friend. It was hot out, being summer in the dry, California high desert, 95+ degrees, but hey, I've been here my whole life; I'm used to it. The garden hose was nearby, and we were spraying each other and drinking plenty while playing, and my mom would always make sure there were pitchers of Gatorade powder mixed and ready to drink when I come inside. Well, this one day hit me extra hard, and shortly after having dinner, I was in bed, shivering and barfing my guts out. I was in bed for almost 2 days. It felt a lot like a severe flu, but it was clearly not a viral infection. Ever since that day, I have been WAY too sensitive to warm weather.

I am comfortable in shorts and a t-shirt when it's in the 50s and 60s, and once the weather weather gets into the mid-70s, I get pretty uncomfortable. 80 degrees and I get cranky, and once the weather gets above 90 degrees, I literally can't do anything but sit in front of the air conditioner. Just walking across the mall parking lot to my car in the summer will make me dizzy and nauseous. I get a pulsing dull headache, my muscles become weak, and if I'm out in the heat much longer, cognitive abilities start to decline.

Now, I am typically an active person (or, I would be if I didn't feel like I was dying). I love weight lifting, Brazilian Jiu Jitsu, Yoga, and hiking. Ever since my first experience with heat stroke, though, I have just steadily gained weight. This, of course, just made my condition worse. I still wasn't getting like morbidly obese or anything, but I did have a bit of a spare tire in my prime. Through my 20s, I stayed as active as I could, but the heat always put me out of commission, and I could never seem to keep my weight down. In my early 30s, I lived in a ski town and worked as a valet/bellhop at a 7 story hotel. That job kept me VERY active, having to use the stairs when elevators were full of guests, carrying people's ski equipment everywhere, and running through the underground garage to bring cars up to the lobby. While working this job, I was Practicing Brazilian Jiu Jitsu and Yoga 2-3 times a week, weight lifting 2 times a week, and a couple times a month outside of ski season, I would go for hikes out in the mountains. Even with all of that, I could never lose weight and get in shape. I had quite a gut at this time, and could never get my weight under 220 pounds. And during all of that physical activity, I would ALWAYS feel totally drained and on the verge of vomiting. Overheated and weak, I had to end my session with a cold shower, otherwise I would get really sick. I have passed out when overheating many times.
Now that I'm getting older, this condition is getting worse, and I am getting fatter. I'm stuck in a vicious cycle, and there is absolutely no clue as to why I am like this. I overheat so badly now, just walking 4 blocks from home to the post office and back, in 60 degree weather, I get nauseous, headache, dripping with sweat, and have to immediately take a cold shower, then pass out for a couple hours.

I have seen 4 general practitioners, 3 endocrinologists, and 1 cardiologist in just the past 4 years. I've had complete blood work done 4 times in those 4 years, with every single test showing normal. I am over $2,000 in medical debt.

I can't take this any more. And if I get sick just taking a walk in the middle of winter in Los Angeles, I dread the thought of what the L.A. summer will be like.

I just want to know if anyone has heard of these symptoms before. I have spent many hours researching these symptoms, and nothing is ever a close match. Thyroid conditions are always the ones coming up in my searches, but my blood panels always show T3/T4,etc. levels perfectly normal.

Well, if you made it this far, thank you for reading all of that! Any help and guidance would be appreciated. Right now I have Kaiser Permanente medical insurance through my work, so anything I could do through them would be great.

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

Not sure if this can help you but I live in NYC where we experience all types of temp and weather. Ever since I went on corticosteroid eye drops, i have dealt with a cortisol hormone disorder where it is elevated. I tend to notice that I get dizzy and uncomfortable when temps get above 90+ and/ or it is humid. My BP will go up by around 15 systolic /5 diastolic. Not sure if you sure focus in to your cortisol levels

REPLY
@nycdave7

Not sure if this can help you but I live in NYC where we experience all types of temp and weather. Ever since I went on corticosteroid eye drops, i have dealt with a cortisol hormone disorder where it is elevated. I tend to notice that I get dizzy and uncomfortable when temps get above 90+ and/ or it is humid. My BP will go up by around 15 systolic /5 diastolic. Not sure if you sure focus in to your cortisol levels

Jump to this post

@nycdave7 Thank you for contributing!
Your condition sounds just like mine, except it starts at 80 degrees. But I have done a 24 hour urine collection to test cortisol levels twice in the past year, and both times was completely normal!

REPLY

Hey guys. I am getting desperate and I don't know what else to do! Maybe if my story can spread around the internet, someone might be able to help.

TL;DNR: For the past 20-something years, I have been extremely sensitive to heat and my body overheats with even the slightest bit of physical activity, even when ambient temperature is cool. I've had many blood samples drawn over the years, and tested for all kinds of thyroid/endocrine conditions, and everything always comes back normal. My condition is getting worse, I feel like crap every day, and I now have extreme fatigue and exhaustion to the point where I can't stay awake at work. Depression is hitting me hard because I just can't do anything with my life because of this condition. Thank you for taking the time to read this. Here's my story in detail:

I am a 36 year old male, 270 pounds, born and raised in California. As a kid, I was "husky", but not obese, though I started leaning out around 12 years old. When I was about 14, during summer vacation, I was in my back yard playing basketball with a friend. It was hot out, being summer in the dry, California high desert, 95+ degrees, but hey, I've been here my whole life; I'm used to it. The garden hose was nearby, and we were spraying each other and drinking plenty while playing, and my mom would always make sure there were pitchers of Gatorade powder mixed and ready to drink when I come inside. Well, this one day hit me extra hard, and shortly after having dinner, I was in bed, shivering and barfing my guts out. I was in bed for almost 2 days. It felt a lot like a severe flu, but it was clearly not a viral infection. Ever since that day, I have been WAY too sensitive to warm weather.

I am comfortable in shorts and a t-shirt when it's in the 50s and 60s, and once the weather weather gets into the mid-70s, I get pretty uncomfortable. 80 degrees and I get cranky, and once the weather gets above 90 degrees, I literally can't do anything but sit in front of the air conditioner. Just walking across the mall parking lot to my car in the summer will make me dizzy and nauseous. I get a pulsing dull headache, my muscles become weak, and if I'm out in the heat much longer, cognitive abilities start to decline.

Now, I am typically an active person (or, I would be if I didn't feel like I was dying). I love weight lifting, Brazilian Jiu Jitsu, Yoga, and hiking. Ever since my first experience with heat stroke, though, I have just steadily gained weight. This, of course, just made my condition worse. I still wasn't getting like morbidly obese or anything, but I did have a bit of a spare tire in my prime. Through my 20s, I stayed as active as I could, but the heat always put me out of commission, and I could never seem to keep my weight down. In my early 30s, I lived in a ski town and worked as a valet/bellhop at a 7 story hotel. That job kept me VERY active, having to use the stairs when elevators were full of guests, carrying people's ski equipment everywhere, and running through the underground garage to bring cars up to the lobby. While working this job, I was Practicing Brazilian Jiu Jitsu and Yoga 2-3 times a week, weight lifting 2 times a week, and a couple times a month outside of ski season, I would go for hikes out in the mountains. Even with all of that, I could never lose weight and get in shape. I had quite a gut at this time, and could never get my weight under 220 pounds. And during all of that physical activity, I would ALWAYS feel totally drained and on the verge of vomiting. Overheated and weak, I had to end my session with a cold shower, otherwise I would get really sick. I have passed out when overheating many times.
Now that I'm getting older, this condition is getting worse, and I am getting fatter. I'm stuck in a vicious cycle, and there is absolutely no clue as to why I am like this. I overheat so badly now, just walking 4 blocks from home to the post office and back, in 60 degree weather, I get nauseous, headache, dripping with sweat, and have to immediately take a cold shower, then pass out for a couple hours.

I have seen 4 general practitioners, 3 endocrinologists, and 1 cardiologist in just the past 4 years. I've had complete blood work done 4 times in those 4 years, with every single test showing normal. I am over $2,000 in medical debt.

I can't take this any more. And if I get sick just taking a walk in the middle of winter in Los Angeles, I dread the thought of what the L.A. summer will be like.

I just want to know if anyone has heard of these symptoms before. I have spent many hours researching these symptoms, and nothing is ever a close match. Thyroid conditions are always the ones coming up in my searches, but my blood panels always show T3/T4,etc. levels perfectly normal.

Well, if you made it this far, thank you for reading all of that! Any help and guidance would be appreciated. Right now I have Kaiser Permanente medical insurance through my work, so anything I could do through them would be great.

REPLY

Hi @skidmarkwarrior you may have noticed I moved your post to the discussion you started in January. You mentioned in late January that you had a normal brain scan. Have you had any other tests since then?

REPLY
@ethanmcconkey

Hi @skidmarkwarrior you may have noticed I moved your post to the discussion you started in January. You mentioned in late January that you had a normal brain scan. Have you had any other tests since then?

Jump to this post

Hello, @ethanmcconkey . Yeah, I'm getting desperate for any help, so I did copy and paste my original post into a different category, hoping it would get a larger audience.

So far, no other tests have been done, but I am scheduled for a 48 hour heart thing. Forgot what it's called, but I guess they stick some things to my chest and monitor my heart for 2 days. Aside from that, my current doctors kind of.... stopped talking to me.

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