MPN Specialist, pregnancy miscarriage

[Mood2020]

Dear all

I am 37 years old I have jak2 positive essential Thrombocytosis

I recently suffered a miscarriage unfortunately. As all miscarriages are it was very traumatic, and also the first time I have ever fallen pregnant naturally in 8 years so a great loss to us.

I didn’t manage to get very clear advice during my pregnancy and during my miscarriage as the team I’m under are covered by Locum haematologist and they weren’t completely clear on how to manage a pregnant/miscarrying MPN patient.

I feel if I ever try for another pregnancy I would need a better plan, does anyone know a london team who covers MPN and pregnant ladies (obstetrics). I would like a kind/knowledgeable consultant not a dismissive one who isn’t quite clear on how I should be managed

Thanks everyone any help would be appreciated

[hunter5582]

Sorry to hear about the miscarriage. You certainly deserve support before, during and after a pregnancy, particularly when you have a MPN. Expert care most certainly is needed.

I would expect the MPN Care Team from Guys is what most will refer you to. They are reputed to be one of the best teams around.

All the best.

[Rem31]

Your post is heartbreaking to read.

If it’s London that you’re near then insist either your existing haematology dept or your GP refer you to the MPN team (headed by Prof Claire Harrison) at Guys hospital.

The obstetrics and gynaecology teams are probably at St Thomas hospital but as both hospitals are part of the same Trust the link up between the departments should be good.

Hope this helps.

[Mood2020 in reply to Rem31]

Thank you so much for your kind words and adviceI am in north london so I will def look into your recommendations many thanks.

[Barbiebreath]

I’m so sorry for your loss.

[Emmyroos]

I'm so sorry. Miscarriage is so terribly painful and isolating. If (or when) you're ready to talk about it, you're welcome to private message me. I had multiple miscarriages that my doctor believes were likely caused by my high platelets associated with ET. Finally, a really good doctor found the right treatment for me during pregnancy (Lovenox injections), and I went full term to deliver a healthy baby (at age 40). It is extremely important to get an MPN specialist on board. I wish I knew of any in your area but I'm in the US.

I'm so sorry for your loss. There are few experiences like it. Take good care and be extra kind to yourself. ❤️

[InWonderland80 in reply to Emmyroos]

hi, may I ask you how much platelets you had when you got pregnant?

[Emmyroos in reply to InWonderland80]

I was diagnosed MPN at the end of my first trimester. My OB sent me to a hematologist when my platelets tested around 600k at the first OB appointment. After the hematologist ran an NGS panel, I was diagnosed with an MPN / Jak2+.

[Mood2020 in reply to Emmyroos]

thank you for your kind words apologies I’ve jsur revisited this thread. Can I ask at what point they stated you on the lovenox, was it whilst trying or when you had a positive pregnancy test

[Emmyroos in reply to Mood2020]

I was diagnosed with an MPN at 12 weeks pregnancy. They promptly put me on Lovenox injections once daily and 80mg aspirin. Then towards the end of my pregnancy they switched me to Heparin injections 2x daily.

The mindset was to thin the blood to inhibit micro-clots from forming from high number of platelets. They believed these micro-clots were developing in the placenta in the early days of pregnancy and causing spontaneous miscarriages.

[Mood2020 in reply to Emmyroos]

Thank you for sharing this ❤️

[Meatloaf9]

So sorry to hear of your loss, hoping you have better advice in the future.Best to you going forward.