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Discussion Starter · #41 ·
Sorry if this was too off topic for the forum. I would message them with my contact, but I don't know how. Someone said upper left hand corner I think but I don't see a message option. Thanks.
 

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Hi - I'm also in the list of those with extreme cold intolerance - so Xtreme Cold I'd love to be copied in to your story if I may. I am just so puzzled why doctors don't seem to understand. I personally am convinced there is a link to Thyroidectomy or thyroid medication for in my case I have had the extreme coldness on two occasions - both when pregnant. I never had it before the thyroidectomy despite having had pregnancies then and also during one of my pregnancies my thyroid tumours were discovered which means I had the problem but hadn't yet had a thyroidectomy and wasn't on thryoid replacement medication. Sue (UK)
 

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I've asked for a "sub forum topic" to be added.

Hashimoto and Extreme Cold

Will alert once it has.
 

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If you guys could post in the new section when it becomes available, that would be great. I'd love for your experiences to be public here because it seems like most of you suffering don't have anyone to share with and it might help others in the same situation who stumble across this site.
 

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Discussion Starter · #45 ·
That is awesome. I was thinking how cool would it be to have a three way with XtremeCold and Claudia's niece to share in everyone's experience but I didn't know how to set that up.

I was just out running errands with my mom and its 78 degrees, and of course I'm in two snowsuits, helmet, face shield, gloves and heavy insulated boots and people are like "are you being silly" and me having to answer embarrassingly no. When I told them why, they were just shocked. I wish I could spend the summer out of snowsuits, I thought all winter I might because I was feeling better and stronger. Anyway it will be good to hear others frustrations and solutions.
 

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Sorry if this was too off topic for the forum. I would message them with my contact, but I don't know how. Someone said upper left hand corner I think but I don't see a message option. Thanks.
Look at the very top - right in the middle you will see an envelope. Click on that and you can send a private message.
 

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Discussion Starter · #47 ·
I had to ask my sister if I was going crazy, cause I don't see a 'envelop' anywhere and she didn't either. She suggested we snap a screen shot of what we see.

lovlkn.png
 

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Scroll up to the very top of the page. You'll see it there. It's not within the posts...it's at the very top of the page.
 
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This is just sad I wish there were some kind of supplement that could help with this is it a circulation problem because of a thyroidectomy ??
 

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I had to ask my sister if I was going crazy, cause I don't see a 'envelop' anywhere and she didn't either. She suggested we snap a screen shot of what we see.

lovlkn.png
Are you using a computer or a smartphone.
This old web program needs an upgrade.
I've noticed a lot of problems popping up lately.
 

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Discussion Starter · #51 ·
Are you using a computer or a smartphone.
This old web program needs an upgrade.
I've noticed a lot of problems popping up lately.
A computer.

I see it now, its not anything to do with the posts, its way at the top of the page on the black stripe.
 

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Too Cold - I've been thinking about your situation. Is there no medication they can give you to raise your body temperature? I get that they don't understand the cause but have they not considered trying to force your body to heat up somehow?

And from the various doctors that you've seen, have any of them had any idea at all as to the cause?

I read on another forum by the way that T4 may be linked to cold intolerance and that T4 running at a high normal or too high level MAY have some link to cold intolerance. This was a patient not a doctor offering that view. I've looked at my own numbers and I can't actually see any link between the two episodes of extreme cold intolerance I've had and high T4.

Sue
 

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Discussion Starter · #54 ·
Too Cold - I've been thinking about your situation. Is there no medication they can give you to raise your body temperature? I get that they don't understand the cause but have they not considered trying to force your body to heat up somehow?

And from the various doctors that you've seen, have any of them had any idea at all as to the cause?

I read on another forum by the way that T4 may be linked to cold intolerance and that T4 running at a high normal or too high level MAY have some link to cold intolerance. This was a patient not a doctor offering that view. I've looked at my own numbers and I can't actually see any link between the two episodes of extreme cold intolerance I've had and high T4.

Sue
They have no idea which is scary! I've done some fairly intensive evaluations over long periods at some of the most respected hospitals and nothing has really come out of it, other then Doctors telling me to wear insulated clothing.

I have never heard of a specific association to high T4 levels. I think cold intolerance is a component of a lot of autoimmune diseases in many different ways. Some people have it worse or are more susceptible to extremes then others. I have met lots of people who share in the same diagnosis who are not cold intolerant, or have tremendous weight gain, while others don't. Some have this or that and others have the opposite.

I've been talking to guy on another forum, who I've also been trying to bring here, he has lots more info then I do. He's had this about 20+ years and is doctor ordered into special foam insulated/padded suits in the winter with attached mittens and boots and two-three off the shelf snowsuits in summer. He's actually officially medically ordered to wear all that, plus a full time helmet and some kind of full torso harness that pushes the suits insulation against his torso (major organs) to make it more warm. He's way more sensitive then I have ever heard, but I suppose there will always be someone more extreme.

He said doctors are fairly clueless about autoimmune diseases in general, especially extreme cases. Only Multiple Sclerosis and arthritis have had the most funding and research. I didn't even know MS and arthritis where connected. I feel dumb. He knows three women and two men just like him in the same equipment who all feel that doctors just put them in gear to protect them or require this and that gear to be worn but don't actually provide a medical solution. Many felt the special suits, harness, helmet, etc were temporary while research was conducted, but that hasn't been the case at all. He says doctors just don't know where to start on extremes, especially when it comes to cold intolerance.

He also said he personally feels once doctors knew he was safe with the right gear, he was put on a shelf so to speak and no other research or evaluations have been done on a large scale since, other then every few months he has mandatory checkups at Mayo Hypo-T clinic or Johns Hopkins to make sure he is safe and well protected. He says they take notes but nothing ever becomes of the research they collect. That's not a solution.

Not very reassuring! I hope extreme cold intolerance has stages and does not become worse over time. I have become worse but I'm no where near his level and hope that isn't something I will become. Not to be disrespectful in any way, but his situation sounds just horrible.
 

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Here's what you need to do. Simply start a post wit the topic " Hashimoto's and extreme cold" in the

"Hashimoto's Thyroiditis (Hashi's Disease) Forum
Use this forum to discuss general issues associated with Hashi's Disease."

And that will be s sub topic that will direct people searching hasimoto's and extreme cold to your postings.
 

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