ET and Hormone Replacement Therapy

[kacollin]

I am 57 years old with CALR Essential Thrombocythemia, taking aspirin only. I am suffering from a lot of night sweats and hot flashes. My doctor said I should avoid Hormone Replacement Therapy due to the increased risk of blood clots. However, I see that others on this forum are doing HRT. Should I seek a second opinion?

[Mazcd Partner MPNVoice]

hi Kacollin, this might help you mpnvoice.org.uk/living-with...

[BeckyDing]

Hi This is no longer true re HRT, I’m speaking to my gp at the moment as well as have the balance app that Dr Louise Newsam has launched and follow her posts. There is no extra risk of using estrogen patches or gels. Also there is a plant based medication made with yams for progesterone - I am in the lengthy process of trying to get a prescription but now I have long covid issues it’s been put on hold for a bit but definitely keep pushing as for this - I have read that you will be able to buy over the counter at the pharmacist soon without prescription - there really needs to be more support and education about HRT in general never forget people who have complex medical issues like ourselves - good luck and if you need anything else let me know x

[BeckyDing]

Download the booklet called blood clots and HRT from the app site below and discuss with your gp and consultant - my consultant said yes to me and the patches/gel but and to discuss progesterone when feeling better as they didn’t know about this treatment themselves

App site screenshot called balance

[kacollin in reply to BeckyDing]

Thank you for this helpful information!

[RazB]

Hi, I have ET and a family history of breast cancer. I was advised against HRT for years by GP and really suffered with high anxiety, very low mood, feelings of being a crazy, unbalanced woman for years. It really affected every aspect of my life. Finally I decided that life has to be lived and that I’d rather take the tiny increased risk associated with HRT than carry on as I had been. My MPD consultant agreed. I’m on very low dose patches and whilst I’m not feeling 100% myself I feel so much better. I also do as much holistically as I can..river swimming several times a week and lots of tinctures etc. There is a lot of help out there but you have to be willing to dig around for it! If you like the natural approach to help balance things out a bit your local health shop should help. Louise Newham app is helpful. Let us know how you get on…be strong with your GP…sadly we still have to fight for help. 💪💪❤️

[kacollin in reply to RazB]

Thank you so much for sharing your experience with me.

[BeckyDing in reply to RazB]

Hi Great news you are on the patches. That is my goal by the end of the year! I have heard about open water swimming bring great but what are tinctures?

Thank you

Becky

[Lasbrisas1]

I had 2 Blood Clots on my Brain K.....20 years NO REVIEW........THE PLATELETS 765, THEN MPN JAK2.....HORRIFIC. I was on EVOREL PATCH 75 MG.

[kacollin in reply to Lasbrisas1]

I'm so sorry this happened to you. Thank you for sharing your experience with me.

[ainslie]

To minimise any possible risk avoid the oral estrogen, bio-identical cream is better and bio-identical prog capsules, the NHS won’t do it but my partner gets tested to check she is not taking too much or too little, she also takes low dose testosterone,DHEA and melatonin.There is a lot of out of date views on the risks, I can’t remember the stats but being a bit overweight or drinking a few glasses of wine are greater risks, keep fit and healthy and some exercise may well compensate for any maybe additional risk on HRT. There are of course many health and well being benefits to HRT IF done correctly.

[BeckyDing in reply to ainslie]

Hi Please can you advise how your partner is checked on doses and also how to get the low dose testosterone etc - sounds really interesting - HRT is so beneficial to long term health even helping prolong developing dementia and arthritis and heard that testosterone is also beneficial for this - my dad was diagnosed with late onset Alzheimers recently and my mum was diagnosed with osteoarthritis in her 50s when going through the menopause so these risks are obviously in my mind thank you

[ainslie in reply to BeckyDing]

my partner sees a private doc who prescribes and does blood tests, testosterone for women is slowly getting known about but maybe unlikely on the NHS so far.I check my own testosterone levels by buying tests from Medichecks, I dont know if they do testosterone for women but you could check, they certainly do estrogen etc.

there are a lot of private clinics that do HRT now , some good , some well , awful. If you are considering trying that route, feel free ask me , maybe by PM and I can how we did it, we had some. to get prescribed Testosterone or HRT a private clinic will probably want to do their own blood tests. I hope that helps