Sorry if I have asked this before my head is mashed.
Anyone had successfully healthy pregnancies with et? My haematologist says higher chance of miscarriage but I'd be closely monitored. I am wanting to plan another baby. A lady in the other group says there are lots of risks and maybe my haematologist doesn't know or is up to date with the risk? This has really worried me
I have asked my doctor at guys the same question.... she has confirmed that there is nothing wrong with you trying for a baby.... you will be monitored more closely
If you are taking hydroxy then it’s a defiantly no no.... not if your on peg then it’s safe.
I had two pregnancies. All went excellent. Not a minor complication. Other friends of mine, had complex pregnancies,but mine was sooooo smooth!
Hi Irishgal12,
I have a healthy 9 year old and have ET. I had extra monitoring esp for blood flow to the baby and developmental milestones but otherwise had a pretty smooth ride. In fact my specialist and GP called it a state of superhealth. My platelets almost dropped to the normal range and everything settled out down during the pregnancy. I stayed on my medication (Clopidogrel) for the pregnancy and breastfeeding. They didn't really know what this would do for the developing baby but the risks without it were worse. Turned out fine in my case. I had hormone level results that came back suggesting that there would be genetic abnormalities (1 in 2 chance which is really high) but on amniotic fluid genetic testing everything was fine. They think my liver processes some hormones differently as it is enlarged and has different blood flow due to ET complications so gave false test levels.
There are of course no guarantees and everyone is different but it can be successful. I had one pregnancy and no miscarriages.
Good luck with whatever you decide to do.
Cheers,
SilverET
Hi Irishgal12,
I was diagnosed with ET when my daughter was 3 months old in 2019 after enduring an awful pregnancy likely to have been complicated by my undiagnosed condition. I only now realise how unwell I was and am super grateful that we both came out of it unscathed. It is extremely important that you consult with your Haematologist about having another baby so they can provide you with the best possible care. Knowledge is power.
I had one mystery condition after the other during my pregnancy, horrendous swelling to my legs but very unusually my thigh area meaning to walk felt like my skin would tear, I was ‘diagnosed’ with various ailments that then turned out to be unresponsive to meds, x-rayed for DVT’s as the swelling seemed to indicate this - thankfully not - and spent many hours in Hospital baffling Doctors with why I was in such a mess. I had placental issues, very unusual vascular bleeding within the placenta. My Husband asked the Obstetrician if the issues that we were discussing were rare and he declared that he’d never seen anything like it before - he retired the next week - no joke! I was asked just before my c-section for permission to write a report on me using my scans because of how unusual everything was. I then bled heavily during my c-section and was told afterwards I was borderline blood transfusion. There are more but these are the most dramatic ones! Of course we’ll never know if all of these issues were caused/affected by my ET but my feeling is that it was a big factor.
I also had a miscarriage before having my daughter and I understand since my diagnosis that this is more common in women with undiagnosed ET.
My reality is that I probably shouldn’t have had a baby, I had IVF, I had platelets of 1200 at the highest (I’m CAL-R mutation) and for 2 years of regular blood testing no one noticed my platelets were off the scale until I was 7 months pregnant. It’s quite incredible really. I won the lottery to have a beautiful healthy little girl and for me to be reasonably fit and well now. I have been told that due to being on HU, although I’m now not taking it, just peg interferon alone, that I wouldn’t be able to have anymore. This makes me sad (or if you ask my friends and family mad for considering it!) but grateful I have my little family.
This isn’t a story to try to scare you off but simply to make sure that if you make the choice to extend your family that you are guided, helped and supported through it. Like some other ladies on here I’m sure you’ll be just fine.
Best wishes,
Joanne x
Sorry to hear of your complications hope that's because u were undiagnosed x
Honestly, I never think about it now unless it comes up. Too busy! 🥴 But also best not to dwell on what could’ve been and best to count your blessings.
Good luck with everything x
That was well explained Joanne. I’m so glad that you’ve got your little girl. There is never a pregnancy without risk and having any physical problem increases that risk. I had autoimmune problems. Women that do AI problems and have babies, usually crash somehow after the birth. Postpartum and also loads of different health problems are known show up as they did with me.
My ET started when my daughter was 5 or 6. She’s 16 now. I’ve just started menopause, I think. I’m turning 55.
You mentioned the feeling of tearing skin and that caught my interest. For 3 months now, I’ve had the tearing/ perhaps burning feeling in my buttock, thighs, knees when I squat. It’s at that time that my menopause started. Now it’s even more. The tearing has spread to my belly and sides. My arms are also getting sensitive. Was your situation similar?
I think what I am getting at is ET (CALR) and ladies’ hormone changes and if there is a connection here.
Would be grateful for some more info on this.
Thanks in advance,
Anag
Hi Anag,
Thank you for reaching out.
In my case the burning sensation was to do with just how swollen my legs were. I didn’t ever consider that to lift your leg the action starts at your thighs really and because the skin was so tight across the swollen area it felt like it might tear and was agony. The oedema was so bad on my thighs that a fingerprint could still be seen after 10 minutes. I’m not sure it was connected to ET or maybe just one of those things.
When I went to the London ET conference in November there were people who mentioned sensations similar to what you are describing as part of there symptom burden to varying degrees. I’m fortunate I don’t have this as an on going issue. It’s maybe you worth writing a separate post so people see it to ask how to tackle this as well as consult your Haematologist at your next appointment.
Best of luck x
Yes Johann,
Thanks for the info! I will write a separate post.
I’m so sorry you had so much swelling. I hope there was no thrombotic even at the time. That’s when the leg swells and becomes reddish. Perhaps it cleared on its own. Oedema is really uncomfortable. Legs are worse.
Thanks for your reply,
Anag
I had a normal pregnancy with my son. I miscarried my second pregnancy. My third pregnancy was normal with my daughter. I wasn’t diagnosed with ET for many years later.
Hi my lovely, I tried for 12 years to get pregnant. I got pregnant after treatment on two occasions but lost both of the pregnancies very early on. I then tried IVF and got pregnant with twins but again lost the pregnancy. I have since discovered that when you have an MPN your blood thickens and the small vessels that attach to the baby are to small to allow the thick blood get to the baby. I don’t know what prescription you are on to treat your ET but you must discuss this with your consultant. I wish you all the very best.
Thank u I am only on aspirin where u on that when preg? Sorry to hear about your losses xx
Hi! I didn’t know that about the blood flow. Thanks for informing me. I am only on asprin. I have ET and tested positive for Jak2.
Before I was diagnosed with PV I was wrongfully diagnosed with Hughes Syndrome which makes the blood thick and sticky.
This was many years ago so I do believe I had PV back then. It was to late to have aspirin and after my twin miscarriage I said enough was enough, I had spent 12 years of my life having one fertility treatment after another. I developed a huge cyst on my left ovary which was drained in the Ultra Sound department. It was the first time my gynecologist had done this and he said it was the last. There was so much fluid in the cyst I had to have repeated stabs with a very thick needle. The cyst came straight back so I had to undergo surgery to remove it. Another cyst appeared so I made the choice to have my left ovary removed. I firmly believe this was caused by all the fertility drugs I had put into my body. Psychologically I couldn't do it anymore.
I did get over the childlessness but it is now, when all my friends have become grandparents, that I am feeling the impact and I am angry that nobody thought to offer me a low dose aspirin after the first two miscarriages.
If your haematologist advises against trying for another child just shower your first child with all the love you can. You have been given an amazing gift.
Good luck
Jill
x
Thank u so sorry to hear about your difficulties
Thank you for sharing all of this with us Jill.
I know I’m very lucky to have my little one and it does help me stay positive about my ET. Fertility treatment is brutal and I admire your tenacity for going through 12 years of it. My journey was only about 20 months from start to finish and that really was hard enough. Best wishes to you my friend.
It’s maybe worth mentioning since AdaJane has mentioned Pre-eclampsia that I also had it. I’m not sure if ladies with ET are predisposed to this condition or that this is just a coincidence 🤷🏻♀️
Hi,
I'm 57, and just been diagnosed with ET. I have been attending clinic about 10 years, on watch and wait. I have no idea how long I have had ET and whether it is possible that I have had it a very long time. Is this possible? I just wonder, as I had a child when I was aged 23. While pregnant, I had pains every month and spotting, so thought I was at risk of a miscarriage, so I took things very easy and rested up, took time off work when I didn't feel right. I also finished work at the earliest possible time. I got to 34 weeks and began having symptoms of high bp and seeing flashing lights. Fortunately, I had a check up with the nurse that day, and she picked up on the issues and I was sent into hospital. I was diagnosed with pre-eclampsia and did have a seizure at one point. So they delivered the baby by Cesarean. They had to watch me closely for 48 hours afterwards, but I recovered ok. My daughter was taken to Special baby Care unit where she stayed for two weeks and then was allowed home. So all ended well. I didn't want to risk another pregnancy though, I think we were very lucky. As I say, I've no idea whether my pre-eclampsia and problems could have been due to me having ET back then? or maybe some condition that precursors ET? but thought I would share my experience.
Thank u
Hello again, I have had ET for 27 years and have had 2 healthy children who are now 18 and 15. I was monitored by a high risk obstetrician throughout and both births were induced 2 weeks early.
Happy to answer any more questions.
Lisa
Essential thrombocytosis 
