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Hi and my name is Chris, I'm 22 and I'm from Syracuse NY.

I was diagnosed with Hypothyroidism seven years ago and while I don't have any of the atypical signs, I'm getting more and more severely cold intolerant every 2-3 years. I have gained no weight, I remain tall and skinny (not anorexic or anything like that). I actually want to gain weight but I have tried everything with zero success.

Here's the embarrassing part, I have become so severely cold intolerant I can't function outside of a snowsuit, literally. I live in them year round. I can't go outside without a lot of gear. Being in a room with A/C on is like Antarctica. I am currently wearing two one piece snowsuits over each other, two pairs of insulated long cuff gloves each tucked under the sleeves of a suit, 1000 oz insulated rubber winter boots, etc. All this to go outside in a bit. I am currently wearing all this indoors, both suits zipped all the way shut with no A/C on and I am completely comfortable. One piece insulated snowsuits are all I wear now, and its ruined my social life and made me insecure to go anywhere because I'm made fun of. These suits are really noisy and not possible to cover up the fact that I am wearing a snowsuit. Even when I explain my situation people still ridicule me. I could move someplace warm all year and possibly never need this kind of clothing, but I don't want to move away from 'home' or family.

I'm hoping to find some others who are dealing with this or some form of it. Its very frustrating. I have been to NY Presbyterian hospital, Cleveland Clinic, University of Penn and Mayo...all top clinics to see if I have something else wrong and all say its likely a rare form of Hypothyroidism and to order me to dress as I am. Its frustrating to not have any info anywhere to research.

Anyway this is my story.
 

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Do you have any lab work to share? TSH Free T4 or Free T3? Are you currently on any hypothyroid meds?

Don't feel embarrassed. Last summer I would wear 200 weight fleece to the office cause I couldn't take the AC. The one that everyone (including all the women) complained was too warm. And I wasn't sweating when they all were.
 

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Welcome to the board Chris!

Labwork would be helpful - please post result and ranges.

Are you currently taking any medications or supplements?

Have you ever had an ultrasound of your thyroid? Antibodies testing such as TPO, TSI and Thyroglobulin?
 

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Hello!

As noted, labs results would help...but I wanted to say I get all my treatment in Syracuse. I think my endo is pretty good. I can PM you her name, if interested.
 

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Honestly, sometimes I think air conditioning should be outlawed, especially in grocery stores. But I digress...

Have you considered wool or SmartWool long underwear (on top and bottom) and socks instead of the snowsuit?
 
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Discussion Starter · #6 ·
I don't have those numbers at the moment, I know my tests range all over the place. I remember one had low TSH and very high T4 and then it was something else. I will find them or call my doctor.

I was told by my local doctors and the various speciality clinics (was referred to) to be safe, and basically medically ordered to wear the snowsuits, etc. I left that part out because its extremely embarrassing to be medically ordered in a snowsuit, let alone two. I am not on any medication except a low dose of Strattera because I developed some episodic hyperactivity. The specialist doctors say its all connected. I am also, though not officially, but told by doctors to wear helmets with face shields because they trap heat in the best which is true. I wear these open face helmets that are called novelty helmets because they are much smaller in circumference to a regular helmet due to the lack of DOT required safety foam. They are made out of the same materials and I have a full face shield. When I leave the house to go anywhere, even down the driveway to get mail both snowsuit hoods are cinched tight around the helmet so only the face shield shows. It is so crazy typing that out in a description yet there is nothing else I can wear that keeps me protected.

Last year I wore two one piece snowsuits all winter, then switched to one suit in early spring to June, then to bib insulated snow pants and jacket till mid September and then back to a one piece suit. That was all doctor required, otherwise I wouldn't have worn bib snow pants in summer. This year I am a lot more sensitive and doctors told me to keep wearing both suits all summer. I fear if I become worse, then what?

Thanks for the offer Lovlkn, I have a good local doctor but because of my rapid increased cold intolerance she referred me to these other clinics which I still go to on a regular basis. I'm at Cleveland and Mayo several times a month and its a lot of deal with. I absolutely hate going through airports and planes dressed like I am. I can't go anywhere silently which really bugs me that all this clothing has to be so noisy.

Anyway I get stressed and majority embarrassed all the time. There is no way I could do this face to face, only online. So thankful forums like this exist! And I wish there was someone out there going through the same that I could talk to. I know there is a teen girl from my local doctor, but I think she and her family moved to be closer to Mayo. I don't like Mayo, they're all about experimenting with this and that, no matter how crazy…and they have asked me to do some crazy things.

I just really would like to know whats going on, I fear a future where I am ordered in these suits or something else, actually ordered into the helmets and possibly medically ordered not to go outside certain times of the year. People ask me all the time if I I'm restricted to go out in winter. This morning I had to go drop something off and its like almost 70 degrees and I'm dressed like its -20 plus my helmet under my snowsuits hoods and my face entirely covered by the shield. People were freaking out around me. I hate that, people need to mind their own business.
 

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Discussion Starter · #7 ·
Honestly, sometimes I think air conditioning should be outlawed, especially in grocery stores. But I digress...

Have you considered wool or SmartWool long underwear (on top and bottom) and socks instead of the snowsuit?
Hi Octavia, there is no way I could survive without the suits. I absolutely despise how noisy they're but I have also tried just about everything and nothing seems to be warm enough.
 

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Discussion Starter · #8 ·
Having written my description out makes me think about it all differently. I mostly think about my insecurities because I deal with it on a daily basis everywhere I go or whatever I do.

I wonder if wearing all this gear is hurting me in the long term because, my body doesn't fight to warm itself anymore, just my clothing does. The more clothing I wear, the less my body has to do. By wearing all this gear, I wonder if I am somewhat paving my future to require them more? I don't know if that is the way it works or not.
 

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I would wear long underwear most of the year as my legs would feel cold.

I still feel a little cold but much better since changing to desiccated thyroid.

I was told it was not just from cold intolerance but also from peripheral neuropathy.

Being hypo for a long time can cause nerve damage just like diabetes does.

I would cover my legs with blankets because they felt cold and wake up with sweat soaked covers which would make me feel even more cold.

I would also get pins and needles in my toes but not that much anymore.

Do you have Hashimoto's ?

If so this insidious disease causes hypersensitivity too..........

Have you seen a neurologist ?
 

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HI Too Cold

I feel very sorry for you. I have had similar. I have lost two pregnancies through cold intolerance. For my own health doctors decided to terminate on two occasions. I have only had these cold intolerance spells when pregnant and then my tolerance is normal (though I'm always chilly) when not pregnant. But when I was pregnant it was unbearable. The first time it happened it was summer. I was in boots and a ski jacket sitting on a beach and FREEZING. And I mean freezing. And everyone would look at me, so yes I know how you feel. I had to fly home from holiday due to the cold intolerance and was nearly told not to board the plane because seeing me in my ski jacket and two blankets on top and it was August, the crew thought I was slightly mad.

Anyway having suffered two bouts of this extreme intolerance of cold I have only found a couple of things that made any difference. I'm sure you know what I mean when I say that when it's really bad you get finally warm in your extra clothes and rooted to one spot (usually curled up in a ball on the sofa). But then you have to move a hand for a cup of tea, or your legs to go to the loo and then it becomes unbearable. When I got those moments the only thing that would help is standing under a hot shower. I would do this for about 20 minutes and this would give me about 30 minutes of temporary relief. The other thing that helped was sitting in front of an open oven. People told me to try hot water bottles but that only heats one tiny part of your body.

If it's any use to know, I had my levels measured as I'm on medication having had my thyroid removed and my levels were normal!!! So I was experiencing hypothyroid symptoms and yet the levels were normal so 'on paper' I should not have been feeling this.

I have discussed it extensively with an obstetrician, a cancer specialist and an endocrinologist and no one can come up with an explanation.

Keep hoping that people here will shed some light, and keep talking to the doctors.

Sue
 

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I'm sorry for your losses Sue. And I am just prompting the conversation, since I don't know and was only ever that bad when I was very hypo, but were antibodies in play during this time? I know that TooCold has gone to Mayo, but did either of you have really outrageous antibody results? (and Sue, I know you said you had a TT, but still wondering)
 

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I'm curious...what is your body temp when you are feeling so cold?
 

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Motorcycle riders wear heated gear/clothing sometimes. Check this stuff out: http://www.revzilla.com/motorcycle-heated-gear

Edit: if the link I posted here doesn't work for you, just google "heated motorcycle gear" and several online stores will display in the search results.
 

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Hi,

On my part I didn't have antibodies tested at the time and didn't take my body temp either. When you are that ill you often don't know what to do so I didn't do the obvious. Sue
 

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Discussion Starter · #15 ·
Sorry its taken a few days to respond. I was scheduled to go to Mayo the week after next, but they called a few days ago to see me this week instead due to the holiday. Scrambling to do that last minute + other things was a bit crazy.

Anyway, I will answer every ones questions...
 

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1. Do you have Hashimoto's ?

If so this insidious disease causes hypersensitivity too..........

2. Have you seen a neurologist ?
1. Not that I know of. I am still in that phase where lots of tests are being done to determine what exactly is going on. My accelerated intense cold intolerance has everyone scratching heads which scares me a bit.

2. Yes, many.
 

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Discussion Starter · #17 ·
HI Too Cold

I feel very sorry for you. I have had similar. I have lost two pregnancies through cold intolerance. For my own health doctors decided to terminate on two occasions. I have only had these cold intolerance spells when pregnant and then my tolerance is normal (though I'm always chilly) when not pregnant. But when I was pregnant it was unbearable. The first time it happened it was summer. I was in boots and a ski jacket sitting on a beach and FREEZING. And I mean freezing. And everyone would look at me, so yes I know how you feel. I had to fly home from holiday due to the cold intolerance and was nearly told not to board the plane because seeing me in my ski jacket and two blankets on top and it was August, the crew thought I was slightly mad.

Anyway having suffered two bouts of this extreme intolerance of cold I have only found a couple of things that made any difference. I'm sure you know what I mean when I say that when it's really bad you get finally warm in your extra clothes and rooted to one spot (usually curled up in a ball on the sofa). But then you have to move a hand for a cup of tea, or your legs to go to the loo and then it becomes unbearable. When I got those moments the only thing that would help is standing under a hot shower. I would do this for about 20 minutes and this would give me about 30 minutes of temporary relief. The other thing that helped was sitting in front of an open oven. People told me to try hot water bottles but that only heats one tiny part of your body.

If it's any use to know, I had my levels measured as I'm on medication having had my thyroid removed and my levels were normal!!! So I was experiencing hypothyroid symptoms and yet the levels were normal so 'on paper' I should not have been feeling this.

I have discussed it extensively with an obstetrician, a cancer specialist and an endocrinologist and no one can come up with an explanation.

Keep hoping that people here will shed some light, and keep talking to the doctors.

Sue
Thanks for your kind words Sue. It is great to have input from all sides, including yours. I have tried or experimented with lots of other things but sadly nothing works for me as well as snowsuits.

I was just at Mayo and told them I was sick of wearing one-piece snowsuits 24/hours all winter and wanted something different for the summer. They told me to bad basically.... "For my safety" I was medically ordered into the snowsuits and helmet this summer, which I think is bogus. I would wear them anyway because I can't survive without them but the order feels like they are babying me just because I said I was tired of one-piece suits. The specialist team I am working with even said I need to drastically cut down the amount of times my suits are unzipped in a day. They want me to wear diapers which I said I'm not doing. That's crazy! Mayo always has great advice and then goes over the top. If they order me to do it, I'm still not going to. If I have to wear snowsuits year round fine, but I have to drawn the line somewhere. Besides I really don't see how that is an improvement to my well being.
 

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Discussion Starter · #18 ·
I'm sorry for your losses Sue. And I am just prompting the conversation, since I don't know and was only ever that bad when I was very hypo, but were antibodies in play during this time? I know that TooCold has gone to Mayo, but did either of you have really outrageous antibody results? (and Sue, I know you said you had a TT, but still wondering)
I have, yes.

I asked one of my specialists about my TSH, T4, T3 and other stats and she said I am all over the place which makes true diagnosis interesting and a challenge. She said numbers fluctuate sometimes by extreme differences...I don't know how that makes sense considering all the research I've done. Does anybody else have this?
 

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Discussion Starter · #19 ·
I'm curious...what is your body temp when you are feeling so cold?
I don't know. Its not something I monitor. If I were to ever get hot, the theory is that I could easily pull the extra pair of mittens off and unzip and remove the top snowsuit, but that has never happened. I am so bundled up and never get hot.
 

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Discussion Starter · #20 ·
Motorcycle riders wear heated gear/clothing sometimes. Check this stuff out: http://www.revzilla.com/motorcycle-heated-gear

Edit: if the link I posted here doesn't work for you, just google "heated motorcycle gear" and several online stores will display in the search results.
That's a very neat find Octavia! To bad it needs a power source from a car or motorcycle. I would LOVE to shed some of bulkiness wearing two snowsuits has for something thinner, but I don't have a power source that I know of that can come with me everywhere. To bad they don't have batteries. Maybe the future will bring such a thing?!
 
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