Thursday, July 19, 2012

Hot/Cold/Miserable: Hypothyroidism and Temperature Regulation

This week, I have been at a terrific annual meeting for the environmental education program for which I consult. The people (from 25 countries) are amazing. The work inspires me. The opportunities thrill me. What kicks my ass? The temperature. They keep it so cold that yesterday, I simply shut down. I was so freezing that while everyone else was at lunch listening to a talk on communicating climate change, I was in the room in which I was teaching, lying in a fetal position, aching, barely able to move, and trying not to throw up from the misery. My nails and skin turned blue. I hurt everywhere. I wanted nothing more than a very hot bath. The trouble is that while I would have benefited greatly from that hot bath, it might have gotten too hot and then I would have been miserable in the heat.

One of the most insidious symptoms of being an EZH*, is that your body can't regulate and adapt to temperature changes. You think you're going along fine. You think you can handle whatever is going on and then you get too cold, or too hot and BAM, you are miserable and feel like you have gotten the flu.

It takes me a while to get to the too cold state. I really will keep going for a long time and move or stretch or run in place to keep warm, but when the cold overtakes me, I am lost. EZHs typically have a lower resting body temperature than normal people. And our thyroids kick our butts by not letting us adapt easily when the external temperature is at an extreme or when it changes quickly.

Oh, how I'd love it if I didn't lose my ability to function when I am too warm. But, I do. I absolutely do. I get flu-like symptoms and would welcome a quick death. When I get too cold, like yesterday, I add layers (I bought a university sweatshirt from the bookstore and wore it the rest of the day. I practically kissed the feet of the students who had the store open.). But, when I am too warm, there are only so many clothes I can remove before I get arrested. I used to power through and just deal with it, but that has become less of an option for me. Now, I have to stop and take care of whatever it is that is making me either boil or freeze. 

And that's the important point here: EZHs have a special problem with temperature. We don't just feel a little cold. We turn into human popsicles, like Luke Skywalker on the Ice Planet Hoth. We don't just feel warm. We melt and have the same mental and physical acuity as liquified butter on a mid-summer's day.

When it starts to happen, step back, get warmer if you are cold and colder if you are warm. Take care of yourself, first and foremost. Stop trying so hard. Just because you can turn yourself inside out to get something done, doesn't mean you have to do that. I get that it's vulnerable to admit, publicly, that you have an issue, that you need help, particularly because there are no real outward symptoms. People can't tell how miserable you are by looking at you and so don't know that you have special needs.

The advice here: take it easy on yourself. Because we have an invisible disease (and not just invisible to others but often to ourselves as well), we might try to carry on regardless of how crappy we feel. We tend to feel like we ought to be able to do whatever it is we are trying to do and so we keep pushing. Our endocrine system can not take the strain and while other people who try too hard might be exhausted from the effort, we might end up curled up on the floor, barely able to move or worse, passed out or at worst, in a coma. This downward spiral will end in agony.

There is a lot to be said about our own perceptions of how much we should be able to do while living with this disease. Often, because it is invisible, we push ourselves further than is healthy. We don't necessarily let other people know and even if we do, few people have the knowledge to appreciate just exactly what EZHs go through. That makes it tougher to be honest and to communicate our situation properly.

Every time you get on an airplane, the flight attendants always give that spiel in the beginning. One of the things they say is, "When the oxygen masks drop down, put your own on first before taking care of others around you." Truly, those are golden words. If you don't help yourself, if you don't take care of yourself, you will be no good to anyone else.

Be honest with them and more importantly with yourself. Educate yourself and others. Assess your needs. And ask for help. It is crucial to your well-being and might even be vital to your survival.

If you enjoyed this post, please consider sharing it. Until next time, Izolda. http://izoldat.com

*Exhausted Zombie Hypothyroidics

12 comments:

  1. Thank you so much for this post! I have felt so alone and so irritated with how out of control my body has been. Feels good to know I am not crazy!

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  2. You are most welcome. You are neither crazy nor alone. Good luck and stay healthy.

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  3. I just started to look up this issue I'm having , it started about mid 2008 I had two seizures from not taking my meds ( xanax ) which I need and have been taking it prescribed for 13+ yrs. Let me tell you that was the worst and craziest thing that I've been through not to mention its one of the few drugs you can die from with withdraw! It took about 3 months to get right mentally and some physically but to get to the point during a seizure I fell out and hit the corner of a table and split my chin where I hit the corner of the table, I came to and lost complete control of walking straight thinking and so on now years later I'm still having major problems with my core temp. When I'm outside now or inside working, walking ,or standing even sitting I will sweat profusely and some cold but mostly heat , when everyone else is fine I'm dripping with sweat I mean raining down my face and I can not stop it in fact I keep a small fan beside my chair and turn it on and off all day . I never had a problem with heat until I had the seizures and withdraw , I'm 33 now July 2013 and really starting to worry I know it not normal for the simple facts 1) I was fine before the incident 2) no one I know has this problem and to the degree serious no pun intended. Has anyone heard of anything like this

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    1. Hello. Unfortunately, I never have heard of this problem. Have you been checked out to make sure your Thyroid isn't overactive. They don't call it the Master Gland for nothing. It regulates so much. I wonder if it is possible that rather than having an underactive thyroid (not being able to regulate your temperature on the cold side of things) if you have an overactive one.

      I wish you all sorts of luck. Please keep me posted on how things are going.

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    2. Do you see a neurologist for the seizures? If not, you should find a good one, and if so, go back and tell him of your new symptoms. It sounds too much like my story. I have MS, which (in me) has caused seizures, hypothyroidism, poor temperature regulation, and many other symptoms.

      So far, there is no solution for my lack of temperature regulation. I can deal with the cold, but I get so hot (even when its cool) that I sweat profusely, cannot think, and literally feel as if I might die, it is such a severe reaction. I carry a fan with me, and it helps a lot, but I would prefer a solution to prevent the overheating.

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    3. Do you see a neurologist for your seizures? You should get checked out by a good neurologist. Your symptoms are much like mine, and I have MS which has also caused seizures, lack of temperature regulation, trouble walking, etc.

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  4. This post is so great! My mother linked me to it as I'm really struggling with the heatwave we're having in England right now. I've mentioned & linked to this in my recent blog post. I don't write about my health very often, but if you want to take a peek you can find it here - http://www.beinglittle.co.uk/2013/07/real-life-heat-and-chronic-illnesses.html

    Thanks for writing so honestly!

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  5. Hello Lyzi. Thank you for your kind words. I will definitely check out your post. I do terribly in the heat as well. Be well.

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  6. This has made my day. I just had an episode yesterday. Got overheated. Couldn't get cool. Vomiting came on pushed myself to walk where I needed to be to drive home. My family thinks I'm crazy. I think I'm going crazy and you describe it perfectly. Not diagnosed yet but my latest TSH came back at 4.42. Unfortunately where I live normal is to 4.5-5. I will be fighting. I can't deal with this. The extremes of hot and cold and not being able to regulate and then getting ill. It isn't working. Your description if what happens and not being able to continue well it made me realize I'm not going crazy:)

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    1. You are definitely not going crazy. Good luck on determining the correct course of action for yourself. It feels so bizarre, doesn't it, to have such a lack of control of your own body's responses. Be well.

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  7. Hello and thankyou so much for sharing. So I'm not crazy! I went undiagnosed with Hashimotos for 33 years and by the time I insisted on a thyroid test my TSH was 124. The doctor was so shocked. My levels are now normal BUT the crazy hot cold situation has left me literally bed ridden. I've since been diagnosed with CFS but I know my problem is that I fight every minute of the day to regulate my temp. The difficult part is that I live in remote Central Australia where the temp is over 40C for eight months of the year, and then in winter the temp drops to below zero. In the "week" we get of spring and autumn my life changes and I emerge from literal hibernation. Is there no treatment other than taking care of myself? There is only so much I can do in such extremes of temp. My husbands work prevent us from moving. Trust me if I could I would have done it years ago. Thanks again Izolda. Kindly Frances

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  8. I have had my thyroid checked and it was normal but I still get so cold that my fingers turn blue and I shiver. Then the furnace kicks in and the temperature literally rises 2 degrees and I'm so unbearably hot that I feel like I'll throw up.

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Please Note

Welcome to Natural Thyroid. This blog details my process of treating my hypothyroidism naturally. Please note: I am not telling you *to* do or not to do anything with my posts (remember to work with your medical practitioner, whether it's an allopath or an alternative medicine practitioner).