Should HRT be taken if you have ET?

Hi All. I'm 44 years old, with JAK2 pos ET, and it looks like I may be peri-menopausal... :-( (Based on symptoms and recent test results for FSH levels). Off to see my GP next week to discuss what happens next. I've read that HRT is not a good idea if you have ET. Does anyone have any experience or advice on this? Thank you, Lou xx

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  • Good Morning Loubielou, , now being a guy, but more importantly not being medically qualified Im no expert on HRT - LOL - But because you have ET I guess by taking HRT there could be a possible increased risk of Thrombosis but putting that aside I would aim to avoid taking it if at all possible and seek a natural route. .

    My lovely wife was peri-men from her early 40's and did not want to take HRT as her older sis took it and it didnt suit her. I bought her a book titled 'Natural Alternatives to HRT' which contained alot of interesting stuff, which for some ladies would mean some lifestyle changes with diet etc. My wife managed to get through it though it lasted about 10 yrs all told as she, like you, started early. It did ebb and flow mind and sometimes her symptoms were quite mild.

    So I'd say the best thing is to not only chat with your GP but also your Hem before you make your decision and of course see what input the good folks here can offer.

    Best Wishes to you. JR

  • Hi

    My sister has ET and is not allowed to take HRT.

    Paul

  • Good morning JR..how are you up there in sunny Blackpool??.you are so good at the advice to the ladies,I hope they all do appreciate your taking time,.

    My own drug trial on ruxolitinib is swings and roundabouts, acid reflux is the latest sleep invader,,and bloating, did your doctor consider giving you this new drug yet?

    Hope your well. Twinkly. X

  • Thanks for the replies chaps! Looks like my options may be limited by the ET then. But I will look into your suggestions JR - thank you! :-)

  • I had been on HRT for 6 months when diagnosed with E.T. 9 years ago. I was told by the consultant to come off it straight away.

  • Hi Guys, I am on HRT but have PV not ET. Haem seems quite happy to leave me on it. Regards Aime

  • Ha, well Loubielou I had a wee thought that this subject would throw up some divided opinion as it's a tricky one for sure. I'm just ever so grateful that I don't / haven't experienced the hormonal changes you ladies have to cope with in tandem with serious health issues. Fair play to you all. So it seems to hinge on how your health advisors will view it but it's your call when the dust settles. To quote the guardian of the Holy Grail in one of the Indiana Jones movies 'Choose Wisely'. . .

    Twinkly - Alls calm here ont coast. Thank you for your kind words. One trys ones best to help fellow peops in need. Im sorry to hear that your Rux is givin you reflux - hope it settles down. When I first read it I thought Twinks doin well she been boating, but when I put me spex on I see it's bloating- oops. Im still waiting to start Rux but Im hoping to press ahead with it soon. Cheerz

  • Once I was diagnosed with ET, at age 53, I was put on estrogen patches and progestogen tablets to keep my arteries supple I was told. I had no thrombosis problems. I also had almost no menopause problems. My platelet count at that time was 650-700 and I was symptom free. We are all so different, who knows what will be best for each one of us. It would be good to get a world class experienced endocrinologist and a similarly great haem together over each one of us but even so everything can't be known. Good luck with whatever you come up with.

  • Yes it seems from what people are saying that the advice varies so much for each of us.... If only we each had that personal healthcare team of world experts - what a wonderful idea. LOL xx

  • I was given an absolute NO for HRT from my haematologist. Or a yes if I was determined to expose myself to the risks. I decided on the no! As per usual it seems we get different advice. Who said medicine was an exact science?? Some of the "natural" alternatives come with some risks to us too so do lots of research before you finally decide on a course of action. Good luck with it.

  • My Consultant supports taking HRT if you want to. Although I am not taking it at the moment I am considering it, However, I keep putting it off as I think I am probably scared to. I have ET Jak2+ take Hydroxy and aspirin. :)

  • Hi Loubielou, Like you I have ET and was on HRT. I'm afraid I had to stop it immediately I was diagnosed much to my disgust as I really missed the energy it gave me. However, I took the view that obviously it could cause complications and that I can do without so stopped it the very next day. That was 3 years ago and my ET is still under control and that is the main thing. I wish you all the best for the future.

  • Hi Loubielou

    Really felt for you when I read the Question - I too am peri-menopausal, have JAK2 ET,45, and off to visit GP next week, what are your current symptoms? I currently have night sweats (some nights) hot flushes which sometimes hang around for a couple of hours on/off, anything hot kicks them off, heating, hot food,hot drinks, anxiety, excercise, weirdly they are worse in Winter, but what I really wanted to ask, has anyone had any real problems taking HRT since being DX, like blood clots,etc or even suspected HRT may have caused them problems? My current feeling though is I totally agree with jediR, and others as i remember having blood clotting issues when taking the pill a couple of years before I discovered the ET. let us know Loubielou how you go on

    Best wishes Marie

  • Hi Marie,

    I think my symptoms are not dissimilar to yours - night sweats and hot flushes, plus dry skin, perpetual headache, achy joints, etc. I don't have any history of blood clots, was diag 5 years ago with ET and my platelets seem relatively stable around the 650 level. My GP tested my FSH level and it came back at 88 - which I believe is high and may be indicative of menopause? Thanks to everyone's input on this forum, I will have a long list of questions to run through with her at my appointment on Wednesday!

    Thanks everyone! xx

  • Hi Loubielou

    what was the outcome of this?

    i have Et age 48 and just started to look into hrt.

    take care

    Sherry

  • Hi Sherry

    In the end it was a balancing act of the risks and benefits. My FSH level indicated I am post menopause. Aged 44 this meant my risk levels for cardiovascular problems, osteoporosis etc were increased dramatically. My haematologist was reluctant about HRT, but advised that the absolute lowest dose of oestrogen only HRT patches would be the safest option. So I'm now on these until I reach 50 which is obviously closer to an expected age for menopause.

    I wish you well, there are no easy answers for this.

    Best wishes x

  • Hi Loubielou &Sherry2 - After much deliberation, I took the plunge and began HRT 4 months ago. My FSH & LH levels indicated I too was menopausal. I started to feel so much better within a week of starting the HRT tablets. My Consultant and named nurse both support this. I have ET Jak+, Hydroxy 2x 500 capsules daily and aspirin. I admit its a risk and I was scared when I made the decision, but the feel good factor outweighs the risks for me. Best Wishes :)

  • thank you both. let's see what the heam says

    take care

    Sherry x

  • Let us know how you get on. x

  • Hi Loubielou, I was 47 in 2007 when I got my diagnosis of ET, Jak2 positive. I was on HRT at the time as I was menopausal. The doctors took me off HRT straight away and told me it increased my risk of blood clots. There was no weening-off period, just no more HRT immediately. As I said, that was in 2007, maybe it's different now. Best wishes, hope things go well for you.

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