Hi everyone! I've been reading some older posts and am already feeling better, as everyone seems so supportive. It's also nice to feel like you're not alone with this rare condition.
I'm 30 years old, and newly diagnosed with ET (jak2+) in December 2020. I learned of my diagnosis when I was 4 weeks pregnant, after having to beg my doctors to refer me to a hematologist for elevated platelet levels over the previous 4 years. Several doctors wrote my higher platelets (upper 500-mid 600 range) off as dehydration and told me to come back in six months for more blood work. Luckily, my gynecologist referred me to a hematologist when I learned I was pregnant, and I was tested and diagnosed with ET.
Unfortunately, I miscarried at 8 weeks, and have been really struggling with understanding my diagnosis just in general, but also in relation to my ability to have children. I have been on a daily baby aspirin since I was diagnosed, but have not really had any follow up with my hematologist since then, and my only "appointments" have been over the phone or over a zoom call. I feel like the stress and grief from my miscarriage has intensified my symptoms of ET, as I'm extremely tired, often feeling sort of out-of-body, blurred vision, headaches, etc. I'm having a hard time concentrating at work because of these symptoms as well. My hematologist is very highly recommended, and my brother-in-law actually sees him for ET as well, and my sister-in-law saw him through her breast cancer treatment. I'm sure the aspirin is enough to treat the ET for now, I'm just feeling kind of down about all this and not sure what to do next. I also feel like a crazy hypochondriac thinking every little sore ache (I am rehabilitating a torn hamstring also, lol!) or ailment is a blood clot, or worsening symptom of this disorder.
Has anyone struggled with the almost vagueness of this condition after being diagnosed? Have any younger women had success in having children with this condition? I'm sorry if this post seems like I'm rambling or unorganized, I've just been overwhelmed and unsure of where to turn. Thanks for reading
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emily914
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Hi I was around your age when things all started to happen for me too. I was about to get married so I understand how a different stress just adds to feeling overwhelmed. Miscarriage and marriage are opposites but both huge adjustments. I can reassure you that I have 3 children so your miscarriage is not necessarily anything to do with the ET. Feel free to message me. It’s a scary time at first but you’ll get through it. Try not to read too much into the way you feel. A headache could just be a headache. It’s hard not to put everything we feel down to our MPN. Try to focus on what you ARE doing rather than what you AREN’T doing. Keep a diary to log how you’re feeling if you find it helpful. I’m sure you’re doing great. You’re young - what are your plans for the summer? X
Hello! I’m 37, platelets run around 1.4 million, triple negative ET diagnosed after a bone marrow biopsy last year. Currently on aspirin only. I’d had high platelets for a few years (that I know of) before the biopsy so I’m sure I’ve had ET for many years.. I have 3 health kids (10,8 and 5) and honestly have very few issues at all bc of ET.
I was diagnosed with ET about 30 years ago. The ET progressed to PV about 7 years ago. I have lived a rich life and continue to do so. I am the father of two great kids and one precious granddaughter. There is a lot more known about MPNs now than 30 years ago when I was first diagnosed. Treatment options are far better. Chances are that you may need nothing more than aspirin and monitor for a very long time. That was my treatment plan for most of 30 years.
The good news is that there is a lot you can learn about ET and how to manage it. There are excellent and reliable resources available. You will have plenty of time to learn more. Some of the vagueness will become more clear as you learn more. Just as a starting point, here are some great presentations.
Be sure to watch the MPN Molecular Biology presentation at some point. It is important to understand.
It is very important to see a MPN Specialist as part of your care team. MPNs are very rare and even very highly regarded oncologists often have little experience with them. Here is a list of MPN expert docs. mpnforum.com/list-hem./ You can check and see if your current doc is on the list. It is always OK to ask docs about their experience with MPNs if the doc is not on the list.
It does sound like you may be experiencing some MPN-related symptoms. Fatigue and migraine (with visual aura/scotoma) are known to be associated with MPNs. It can be hard to sort out as many MPN secondary symptoms can be caused by other things. That is part of why it is so important to consult with a MPN-expert doc. Unfortunately, many people with MPNs experience a sense of getting "fobbed off" regarding symptoms they experience. This can be more of an issue for women, particularly younger women. That is why the folks at MPN Advocacy established a Women and MPN program mpnadvocacy.com/women-mpns/ .
It is very important to advocate for yourself to receive the care you need. Assertive patients receive higher quality care. Passive patients do not,
I hope that helps to answer some of your questions. Please stay in touch and let us know how you are doing.
Hi Emily, I’m so sorry about your miscarriage. I understand your brother is using a hematologist for hie ET but have you considered seeing an expert who specializes in MPNS to get you started on the proper treatment for you? That can be helpful for many. Sending positive wishes your way. Katie
Hi Emily,I’m so sorry for your loss. What your are experiencing at the moment is very overwhelming, all these huge life events very close together. Make sure you’re kind to yourself and give yourself a break. It may take some time to reconcile everything you are feeling but you’ll get there 💗Unfortunately there are also lots of hormones flying around too which also complicate matters.
I was diagnosed when my daughter was 3 months old after difficult pregnancy beset with lots of complications I now believe, as does as my Haematologist, to be associated with my undiagnosed ET. I also had had a miscarriage 3 months before this pregnancy. Unfortunately there is a higher risk of miscarriage when you have ET, you’ll find the specifics on the MPN Voice website, but there are a great many ladies on this site who have had successful pregnancies and had no issues at all. The good news is that you now know what you are dealing with and can be managed through your future pregnancies.
I’m not ashamed to say after my diagnosis I went for counselling. I found it very useful and helped me calm my brain down a bit. It’s a good thing to consider if you feel it might help.
I’m now 2 years post diagnosis, I have a beautiful 2.5 year old and my condition is stable. I’m older than you and had IVF to conceive. I also had stubbornly high platelets that needed treatment including Hydroxy to bring down meaning I wasn’t able to have more children. I’m sad about this but eternally grateful for the little girl I have. Day to day I feel completely fine and the main thing ET has brought me is an appreciation for life and to try not to sweat the small stuff. This forum is awesome and there are many, many people living long and fulfilling lives on here although they have an MPN.
I’m sending you so much love and please feel free to reach out if there’s anything I can help with.
hi Emily914, welcome to our forum, I am pleased that you have found reading the various posts has helped you. I am so very sorry about your miscarriage, and completely understand that you are feeling anxious about having children. I can see that the lovely people who are part of this community have given you some great advice, particularly to read the information on our website, which I hope will help you.
It is very daunting when you are first diagnosed, trying to understand ET and what it means for you in the future, and not made any easier for you in having your consultations over the phone or via zoom, hopefully the situation will improve in the coming months so that you can see your haematologist in person.
Welcome to the Group,We certainly are here for you♥️ I am so sorry for your miscarriage and hope with time your grief becomes easier to deal with.
I was diagnosed in my early 40’s but believe I had ET way before that. I had a blood clot when 6 months along with my first child. She was born without any problems. I went on to have two healthy sons and no more blood clots.
I also have Factor V Leiden deficiency as well as Hemochromatosis. Not certain if any of that or possibly the combination of it all caused the blood clot during my first pregnancy.
I have read and learned so very much here on this forum. I only found it a year ago and sure wish I’d found it earlier! I too felt anxious and lost when first diagnosed over 23 years ago. So much has changed in the treatment and diagnosis of the disease since then. We all can be expected to live a normal length of life.
I wish you much joy, few complications and less worry in your life. You’ve got this Emily and we are with you to support you whenever you need us.
Hi Emily, so sorry to hear of your miscarriage. E hugs and thoughts are with you. The others have given you great advice about your condition and you can see you will get a huge amount of support from the lovely people on this forum. Keep posting, kindest regards Aime x😻
Hi Emily, welcome to the group! I'm sorry to read about the tough time you're going through. I'm in a similar boat, I'm 36, JAK2+ and waiting for a final diagnosis. There are many thing I've learned in the last couple of weeks and I want to share with you what seems most important to me.
1. Even if you have a Dr. you trust, please seek advise from an MPN specialist at least once! This is important for the course your illness will take in the future.
2. If you haven't already, get a BMB done! Even if your Dr. tells you it is not necessary, because it won't change anything. There is no way to establish an ET diagnosis without a BMB. ET is a diagnosis of exclusion, the other 2 MPN can mimic ET as well, but treatment and outlooks are different. Moreover you'll get a baseline for the future.
3. It is possible to have children with ET. I'm sure you'll find others here, wo had successful pregnancies. Moreover there are lots of groups on fb with many younger women. Shortly before my second pregnancy I had a CBC done and my platelets were high for the first time (403). I didn't think about it and nobody said a word. I had a normal pregnancy without any problems, but didn't know I had a MPN back then. This was 2018.
4. As a younger woman please consider the possibilty of Interferon due to its disease modyfiing abilities. There are many approaches on ET treatment, one of them is "watch and wait", but others prefer to treat the disease early in its course to slow down progression (google Prof. Silver, Prof. Hasselbalch and many more). It's up to you, but just make sure you know everything about your possibilities.
I wish you all the best! Please forgive me my mistakes, I'm not a native speaker.
Welcome to the forum. You are dealing with a double blow of loss of your baby and ET diagnosis, so don't be afraid to ask for help from your medical advisers and here on the forum. Would you be able to have a short break from work, or perhaps work part-time for a short period, if you feel either of those options would give you more space for recovery?
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