At 45, have ET, and I've been putting my steadily increasing hot flushes down to the menopause. My periods stopped over 6 years ago. However, 'they' don't seem to think that is what it
Besides, usually a hot flush caused by hormones wouldn't give you an ACTUAL raised temperature, you just FEEL hot.
Mine has been going up for a couple of years now. I'd get a flush, be drenched, and my temp is 37.5. Recently though, it has been even worse at 38.1 degrees. It isn't an infection because it is transient.
It makes me feel horrible; I feel breathless and my heart pounds. It also keeps skipping beats. The ectopics I've had for years, but lately, they are much much worse. I've had a 24 hour ecg, but waiting for a referral for the results is a joke. I've also lost a bit of weight and am having an increase in my migraines. I did have a phaeochromocytoma many years ago.
Does anyone else get these symptoms? I tried asking my haematologist, but she just said to stop taking my temperature. Great advice!! I feel like c*** and am worried, and she says that? God bless the NHS!
Can anyone offer words of wisdom? Thank you my lovelies x
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lynnieb
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Hi, I have exactly what you describe and I also put it down to the menopause even though they were so severe. Unfortunately for me they were the constitutional symptoms of Myelofibrosis. My ET had transformed after 12 years into MF. My weight loss was due to early saiety from an enlarged spleen.
I was prescribed Jakafi immediately. The jak kept my symptoms down but made me transfusion dependent and I am now booked for a stem cell transplant on June 22. I am 50.
of all my symptoms, the sweats which occur day and night are most troublesome. They are overwhelming and now start wi a wave of intense nausea followed by the sweat. I have never taken my temp. My heart also thunders. They leave me utterly drained.
Go and see your hem again or another MPN specialist and get checked out.
I have also developed MF after similar symptoms plus bone pain , am 59. have just started jakafi. am putting off transplant while i can. good luck - 50 is so young - but must give you an advantage in transplant - would very much like to hear how u get on - how about doing us regular posts like jedireject?
Hi, I am 56, diagnosed ET 5 year ago, I have the same symptoms , had all the tests, ecg, 24hr monitor etc and nothing showed up. Doctor put it down to menopause!, After several blood tests, they noticed Platelets high, referred to hospital, who confirmed ET. I am only on low dosage aspirin daily and platelets not increasing so far. I still get palpitations, feelings of dizziness, get really hot, but I now just wait till symptoms pass, I am less anxious about symptoms now, which I believe helps. Also my last visit to haemotogist couple of weeks ago, he asked me if I had any of these symptoms especially extreme hot flushes, he said they are finding this to be a common symptom. There is a lot of research going on just now. Hope you get some answers and an understanding GPS
Absolutely, absolutely have the same....had ET for about 3 years and to start with had to change sheets and night clothes up to twice a night! Think made worse by Hydroxy, as after came off that, did reduce a bit. But still sweats every single night, some worse than others. Definitely worse if eat late and awful if have had alcohol during day! Told to drink masses of water which I do. Also better if not having hot bath or shower before bed. Really sympathise with you. Interesting that when I v v first went to haematologist to get it diagnosed - the first question she actually asked me was "Do you have sweats at night?" so it is obviously part and parcel of the disorder. I gave up taking my temperature and the joke is that we have just discovered our thermometer was faulty anyway!! V best wishes and sympathy too. Tinkerbell13
I am 56 and have almost exact same symptoms as Tigger. Flushes sweats and mild palpitations. Haematology said it is definitely menopausal symptoms and hormone levels confirmed this is probably the case. Periods only stopped last year so even if I didn't have ET I would not be on HRT yet anyway. I am diagnosed ET 1 year but only Asprin needed at the moment. The disturbed sleep is the worst and trying to function at work is difficult when I am dealing with people and dripping with sweat ! Sorry but that's not much help to you Lynnieb. Just sharing and feeling for you, keep positive though it's difficult. xx
Hi, sorry to hear you are feeling like you are. I have PV and go through spells of temps ranging from 36.2 (my norm) to 38 C with no explanation by medics. It is horrible and is accompanied by lots of sweats which are very draining. Hope you feel better soon.xx Aime xx😺😺
Thank you all SO much!! I have been feeling so uncertain about everything lately, (my GP even asked me what I thought was causing my problems!!) as no-one seems to have any answers. Knowing others with ET suffer the same symptoms, strangely puts my mind at rest.
Because I also have neurofibromatosis-1 (tumours on the nervous system) I also have to be mindful that I may have lumps were they have no business being. But hearing all your stories, (distressing as they may be) at least gives me some reassurance that I'm not kicking up a fuss over nothing. I will try and get my haem apt brought forward I think from December; I need to have a discussion. Thank you my lovelies xx
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Glad I don’t have to keep wondering!!
Getting Specialist Help 
Does anyone get ET symptoms when their platelets are elevated?
Still getting PV symptoms...
