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hot and cold

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13 years 7 months ago #22986 by Mark
hot and cold was created by Mark
For all of my life I used to be a guy that “ran hot” – I required a sweater or coat less often than most people, I didn’t need so many blankets, etc.

This past Fall, I spend 6 weeks w platelet numbers near zero, 4 trips to the hospital and finally have a splenectomy on Nov 3 – and since then I am in remission.

Since getting out the hospital I am “running cold” – feeling cold almost all the time, having trouble warming up. Right after the Fall Ordeal, there were various reasons for this- I had lost 25 lbs and had a severe case of insomnia- both of which can affect one’s ability to thermoregulate.

However, for some time now my weight is back to pre-Ordeal levels and I sleep well enough most nights. Yet , I’m still freezing all the time.

Had anyone ever experienced this ? in relation to remission? In relation to a prednisone taper?
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 7 months ago #22987 by Sandi
Replied by Sandi on topic Re: hot and cold
Yes, that's me. It began around the time I started with Lupus symptoms. I sit at my desk at work with a space heater next to me. No one can stand to be in my office.

I'm not saying you have Lupus. Chances are, you don't. There are medical reasons for that, the first one that comes to mind is thyroid. Don't assume it's ITP or splenectomy related. Sometimes a trauma to the body, such as a surgery, can kick start an autoimmune problem or some other sort of problem.

I understand how miserable it is. It's more than just being cold. For me, it's feeling like I'm sick and bone chilled. It takes a lot to get warm.
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13 years 7 months ago #22995 by Mark
Replied by Mark on topic Re: hot and cold
Ha! -exactly.

I have a space heater under my desk- when I turn it on I take out my car keys and place them in my desk so I can't drive home without shutting off the heater. Several times I have walked out to the parking lot only to return to shut off the heater and get my keys. Don't want to burn down the building!

I also often fantasize about hot tubs....
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13 years 7 months ago #22999 by eklein
Replied by eklein on topic Re: hot and cold
That does sound like thyroid.

Recently I've only got two settings - too hot and too cold. It is very annoying at night, no sooner am I warmed up when I am so hot I have to stick an arm and a leg out of the covers to cool off. But I don't have to look far for the reason, I'm a 50ish woman. I hope this goes away soon.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 7 months ago #23001 by Sandi
Replied by Sandi on topic Re: hot and cold
Erica - me too.

I usually remember to turn the space heater off, but did forget one day last week. That was a yikes moment.
13 years 7 months ago #23019 by
Replied by on topic Re: hot and cold
Nope....I am the guy with a fan in every room.
I have one sitting on my desk here at work blowing on me right now. ;)

.
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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13 years 7 months ago #23092 by karenr
Replied by karenr on topic Re: hot and cold
So thyroid can be connected to feeling cold all the time? How does that work? I have a functioning half-thyroid, but doctors have their eye on it because of a large goiter.

I suspect my coldness is not related to ITP, prednisone or tapering of it, or splenectomy.
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13 years 7 months ago #23093 by milly
Replied by milly on topic Re: hot and cold
Hey Karen,
I have no thyroid and can't quiet get the medication right so I am hyperthyroid and that makes me hot all the time, like Jack I always have a fan and air conditioner going if the family don't object too much.
I cannot tell you the last time I had a jacket on, even in the middle of winter and it snows where I live.
There is no practice run in life.
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