ET and temperature control

Does anyone else suffering from ET, suffer from feeling very cold, or sometimes hot? Not sure if it is an ET symptom.

[Cat1001954]

hi yes I’m very hot at times my palm of my hands are always hot

[Hidden in reply to Cat1001954]

Thanks for your reply. Do you know if it is an actual symptom of ET. I am still a bit new to this.

[Cat1001954 in reply to Hidden]

before I was diagnosed I was asked if I had not got nnight sweats I said no but I’m often hot as night and can’t have blanket on me and hot in the day with hot palms and sometimes bottom of my feet x

[LaalRobbo in reply to Cat1001954]

I am exactly the same as you, haemo always asks about night sweats, I get unbearably hot through night but not sweaty and hot through the day, it's odd and bottom of my feet burn sometimes x

[Cat1001954 in reply to LaalRobbo]

yes me too bottom of my feet and hands are always hot and my palms are always hot and red

[Ratton]

I get extremely cold suddenly - (I am an elderly woman late 70s)

Then for short time get hot --but coldness seems to linger. ? Becos I don't always remember to ask questions (my apptmnt is by phone)its usually when I've hung up I remember things !

[Cat1001954 in reply to Ratton]

Hi write your question down and leave by phone

[J-fd]

I get hot but mainly when I first get in bed I even have a fan on , but ok once I go off to sleep ,

[quanglewangle]

If you are being treated with Hydroxycarbamide then side effects that involve the nerves are commonplace - Erythromelalgia - pains and or hotness/ redness of feet, Peripheral Neuropathy - Pins & Needles, pain in and numbness of toes and possibly more.

I get all of these at times - fortunately pretty mild - alongside other effects -Pruritis and Actinic Keratosis. Depending where you read, most of these 'side effects' can occur with ET anyway without the 'help' of Hydroxycarbamide so maybe could be classified as symptoms rather than side effects.

[Threestreams in reply to quanglewangle]

ET CALR .. yes I am similar .. hot tingly feet .. can have a sweat during the night .. not so much coldness but feel heat

[Sandymacp in reply to quanglewangle]

I have all of what you mention and have had for quite some time. I'm 82, diagnosed with ET at 61, Sometimes, by the end of the day, my feet will be so hot and swollen I can hardly walk.

[Caryopteris]

Yes I do have periods of feeling cold. This is normally at the same time as a burst of tiredness. After 13 years of taking hydroxy I try to just shrug it off as hydroxy seems very good at controlling blood platelets.

[Hidden in reply to Caryopteris]

Thanks to everyone for the replies. It does seem that what I am suffering is a symptom of ET. I only take aspirin, so it's not hydroxycarbamide side effects. My consultant haematologist has left the hospital, so I'm left with nobody to ask any questions. All I am left with is an email address for the haematology dept admin.

[Piipero]

Hei! Minulla on etenkin öisin tunne kuin palaisin sisältä.On todella kuuma.Lääkäri mukaan se on ET:hen kuuluvaa.

[AndyKay]

Hi. Im not sure if it’s from ET, but I’ve become very sensitive to the cold or heat.

[Wyebird]

hi I used to be really hot at night but not the sweats. I’m now on a low dose of estriol for something else and my body seems to be much more controlled heat wise.

[Trocken]

Im 43 with ET and on hydroxy. Ive always struggled with temp control , i have a very warm body (suffered with night sweats for years), but at the same time I can also have extremely cold hands and feet (Raynauds) with many digits being white / blue. I was originally started on Hydroxy to see if getting my platelet count down would help, sadly this hasn't helped. My blood cells are on the large side which I doesn't help with the blood flow was how my haemotologist described it. I have recently started HRT to see if this would also help, but unfortunately its not done any thing for the night sweats or Raynauds. But depending on your age it may be worth exploring?

[Richinspirit]

Yes - my other half has night sweats so badly that we installed air-con .... he even uses it in the winter. But, recently he has started on HRT gel that I rub onto his shoulders every three days and it has made a huge difference.