I am 49 and was diagnosed with ET in 2008 but probably had it earlier as high platelets with first pregnancy in 2003. My initial playlets were 800 but have remained around 600-700 since.
My condition does not really cause me much problems - I suffer tiredness and headaches/ migraines but never sure if they are linked to ET as have had headaches most of my life. My problem now is I started peri menopause since January 2020 - symptoms have come and gone over last year but now the night sweats and hot flushes with lack of sleep are exhausting. I can have 10-15 episodes during the day and 6 at night. I really would love to try HRT but I know it is not normally recommended with ET. My consultant said in Feb if so was struggling with menopause symptoms to go back to her but I’m interested to know if anyone with ET on this forum has taken HRT and did they have problems with it.
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Rebelred
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I know someone who was advised to take HRT and has successfully controlled horrible symptoms of peri menopause. Without HRT . She consulted a herbalist . Herbs adjusted as symptoms changed .
Thank you Mostew, I had considered herbs as an alternative but was only looking at over the counter ones which made me nervous. Maybe a herbalist might have better advice.
Hi, I have ET and was diagnosed aged 39. For the first few years on aspirin only. Aged 44 my GP confirmed I was post menopause after years of symptoms. She pushed for me to go on HRT until I reached the normal age for menopause. My haematologist was not keen. In the end - as often is the case for us all - it came down to a balancing act of all risks and benefits. I’ve been on the lowest dose patches since then, 7 years. Due to come off soon and they’ve been fine for me. I wish you well, hopefully between your GP and haematologist you can get some good advice based on your individual circumstances, and make an informed choice. X
Thank you Loubielou, nice to hear of someone who has taken it and been ok. There has been a lot of talk about menopause in the media lately and there seems to be some long term benefits of taking HRT also for those not at increased risk. I think you are correct it is a balancing act.
Hi there. I have PV - diagnosed two years ago, I’m now aged 76. I have been on HRT for 33 years to deal initially with heavy periods, but in recent years because my menopausal symptoms return every time I have had a break from the HRT. My haematologist has no problem with me continuing to take the HRT and it does keep the sweats and flushes under control. I wouldn’t be without it. Btw, I’m on HU to control my blood counts.
Hi Rebelred,I have ET diagnosed when I was 18 and I am now fourth something heading towards the end of 40. I take Pegasys interferon and thyroxine. I started becoming Perimenopausal when I was 38 held on for 2-3 years as they gradually disappeared altogether. I have been taking HRT now for about 5 years, I choose to use the Patches as was noted that they can carry less risks especially around clotting issues. I can honestly say I have had no issues whatsoever ever. I change the patch 2 x weekly and go about my life, like you I was apprehensive it I think you have to do what you are comfortable with and happy to do, for me I wanted to try HRT and it has worked out just fine
Thank you Mandy-moo74, you were very young when diagnosed. I’m sure much less was known about your condition then. Thanks for advice on patches. I feel more ready to talk to my Consultant now having heard the encouraging stories of others who have done ok on HRT. I only take daily aspirin now as my condition is very stable thank God.
This is so encouraging. I just started Provera to control heavy periods caused by my PV. This first month has convinced me I am going to try HRT when the time comes.
Hi, it’s exhausting for you.I’m 66 still get a few menopausal flushes . Do you have an MPN SPECIALIST?Are you on meds? I’m curious because if your platelets were lower your headaches and fatigue may reduce. As for the night sweats I have a fan next to my bed. It helps enormously.
Thank you for your reply and sorry I’m so late replying I only saw it now, yes I have a MPN specialist. I am on aspirin 75mgs daily but nothing else. I hope to talk to specialist tomorrow to get her advice. I am going to buy a small fan today as it’s the night time that is the worst at the moment.
So good to read the responses to your question, I’m having the same issues as you - the night sweats are awful, and I am so sleep deprived as just never get more than 1-2 hours at a time. The combination of having the ET sweats and hot flushes is impacting heavily on me, I’m feeling for you! I’ve got an appointment in couple of weeks and am hoping hrt will help. Anything that will help basically! Can’t carry on like this. I have read, as mentioned, that topical hrt, cream or patch, is better for us than taking orally. In taking all the benefits hrt brings other than hopefully reducing the sweats/flushes, I will be trying it.
I’ve had night sweats for many years, diagnosed with ET jak2 last year, and been on Hydroxy since then. It’s not reduced my ET symptoms in any way sadly, still also get bone pain and fatigue.
Thanks Minu68 - it is nice to know we are not alone. I agree the sleep deprivation is very difficult. I am luck I do not suffer ET sweats as only on aspirin and as far as I know they are more linked with Hydroxy - I may be wrong. I definitely feel more empowered to discuss HRT options with Consultant having received the support on here. I hope you get the support you need regarding starting some form of HRT.
Thank you - I do find I have some brain fog also. Not sure if it is from lack of sleep, headache or just a menopausal symptom. I hope your symptoms settles on the lower dose
Oh lol, I recognise this, 'drifting around' is a great description! I will be having to go back to looking for work once recovered from my operation, and am wondering how I am going to manage! Can lose much time drifting around at home....😂
I am 60 still menopausal and suffering night sweats really badly, I can't take oral hrt, just trying to get appointment with go to discuss patches. After watching Davina menopause & methere is no way I am going to carry on suffering. In my own case the benefits out way any risks.
Ciye I agree, I think the benefits have been forgotten by some doctors, I have a long number of years to go yet on this journey and don’t want to wonder in a few years why I never did anything about it.
Hi Rebelred. My first hematologist told me only topical HRT, but I have switched to an MPN specialist and will ask again when I see her in a few months. Insomnia is one of my symptoms, but I have read that a large percentage of MPN patients suffer from sleep disorders, so it may be hard to distinguish whether or not it is due to menopause.
Jmctrek I have to say I sometimes wonder if symptoms are due to my ET or other issues. Looking at this forum so many people have different journeys with ET it can be hard to know. I think I’d be happy to try topical HRT to start with and see how so get on
I was chatting to the haemo Dr who took my bloods for the Covid/vaccination/immunity trial today. We both had our examples of when it is best not to blame ET for everything !
Mine, that I had leg problems a few years before ET which were down to peripheral arterial disease (8cm stent in my femoral artery) - I am glad it was diagnosed and not assumed to be an ET symptom if had developed now!
He said a lot of people with athritis symptoms - which can easily be tested for - refuse the test (and therefore appropriate treatment) by insisting it is down to their MPN !
Interesting - My hip replacement was due to my ET having exacerbated my arthritis - went from mild to needing a total replacement in 2 years, with no real strenuous activity to speak of. Likewise my thumb arthritis, getting bad, and he says it is the ET causing it, as it over reacts to inflammation and that then worsens it.
I just wrote a long response and it was lost. Shoot. I was your age when I started HRT. I had longstanding headaches like you. It was assumed to be migraine related. Migraine medications worked too. Because I had headaches my Dr. said to take a baby aspirin twice daily. I was diagnosed with ET at 65 years of age. I continued taking the aspirin and all the clinicians were on board. I had surgery a couple of weeks ago. Evidently a questionnaire I filled out led to the discontinuation of my HRT. It will be restarted by my primary care provider.
I did find out by my doctors office that genetic testing for how our bodies metabolize drugs can show if a specific defect is present that makes birth control pills or HRT risky. I don't have that defect and have done swimmingly.
I learned HRT not only deals with hot flashes but also affects multiple systems. I hate to say "Vagina" (I really don't) but HRT can be VERY important in maintaining gynecological/urological systems.
I also agree to avoid herbal remedies. I don't know if Pharmacogenetic testing is done often in the UK. I am so happy I had my profile done. I am far away near Portland, OR.
Hi Pkm52, thank you for your reply. I live in Ireland and I’m lucky to have a MPN specialist in the hospital that I work in. I had never heard of the blood test for detecting risk from hormone based treatment- I will ask my consultant.
Yes I agree many systems affected so hoping some HRT patches might help them all. I met my GP today and she is leaving decision to specialist which I’m happier with.
Can I ask if you migraines/headaches improved on HRT or was it much the same. I am really hoping that mine are hormone related and not ET.
Just want to flag up that Chinese medicine can be really helpful for menopause, but make sure to go to a proper Chinese medicine doctor who will combine the right herbs for you, it does mean you have to boil them up every few days. I heard it's risky to start hrt after age 60, but ok to be on it and continue. Jo
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