Confusion about MPN. Please help

[Macch1493]

I posted this on Reddit and a kind user referred me to this forum, so here I am…

I’m 36 and have had chronically high platelets since my early 20’s (typically around 525k). To my knowledge, I don’t think my platelets have ever been normal. My PCP has never expressed any concerns, as my other bloodwork has been pretty normal for the most part.

I’m not asking for medical advice, but generally speaking, do I likely have MPN or could I just have chronically high platelets bc it’s in my DNA? I’m not anemic, but have been in the past. I have a history of autoimmune disorders (but have tested negative for inflammation) and heavy drinking.

The reason I’m extra concerned at the moment is bc my husband and I are doing IVF and I know that blood disorders can cause miscarriage and complications. I’ve expressed my concerns to my Dr and she’s wants me to take baby aspirin to be safe, but I’d like to see a specialist as well. Problem is that I can’t get in to see a hematologist for several months and my embryo transfer is in a few weeks. Will aspirin be enough if I have an MPN? Again, I have no clue if i even have MPN but I don’t know what else could be causing my chronically high platelets for the last 15+ years.

[hunter5582]

Hello and welcome.

It is not possible for any of use to determine whether you have primary or secondary thrombocytosis. Given the timeframe of your IVF, it is understandable that you would want to know sooner rather than later.

Unfortunately, most PCPs know little about MPNs. You should have been referred to a hematologist when the thrombocytosis was first detected as a pattern. Note that many hematologists have little experience with MPNs. It is very helpful to consult with a MPN Specialist. Here is a list. mpnforum.com/list-hem./

While you are waiting to see a hematologist, one thing your PCP could do is to order a MPN panel like this one if you are in the USA. labcorp.com/tests/489555/i-...

To learn a bit more about MPNs and pregnancy just in case it is relevant, suggest starting with the MPN Voice website. mpnvoice.org.uk/ Look un "Living with MPNs - Pregnancy."

Suggest reaching out to some of the MPN Specialists near you and explaining the situation. Perhaps someone could arrange to consult with you sooner rather than later. You obstetrician should be consulting with a knowledgeable hematologist as well.

While none of us can tell you whether or not you have ET, it is certainly known that otherwise healthy people with ET can have a successful pregnancy. Proper planning and care will ensure an optimal outcome.

Wishing you and your family-soon-to-be all the best.

[JojoWonder]

Hello,

I’m sorry to hear you are going through such a difficult time. Having one of these concerns is stressful enough. I can only speak from my personal experience which is that I had IVF treatment 6 years ago before being diagnosed with ET. My platelets were 800’s so really it should’ve been noticed at some point before treatment but it was highlighted to me at week 27 of my pregnancy. Honestly I had a rough time of it but I now have a beautiful, healthy 5 year old. I was officially diagnosed when she was 3 months old. There is a higher risk of miscarriage if you have an MPN but a successful pregnancy is possible, even without management. That said, in an ideal world it’s best to get a diagnosis first so your haematologist & obstetrician could make a plan. Unfortunately fertility has a ticking clock, I understand that, and there are no guarantees anyway. I just wanted to reach out to let you know that all is not lost. Sending every best wish over to you x

[TwinMom88]

I’m 35, and was actually diagnosed with my MPN (PV) first because of routine bloodwork as I was embarking on IUI/IVF. My reproductive endocrinologist (familiar with PV), hematologist, MPN expert and MFM all encouraged me to continue my fertility journey, noting that I would just need to take some extra steps in mitigating blood clot risks (e.g. Lovenox at a certain point during pregnancy and postpartum, even longer than some of your friends might’ve gotten in the hospital as part of standard C section post surgery treatment).

If by any chance you’re in the NY metro area, I would be happy to give you the names of my team. They managed me through delivery of my beautiful, healthy twins just this past February, and are receptive to me being crazy enough to want another!

Best of luck to you in all of the above. They don’t call it “a journey” for nothing…

[Katy121]

I was diagnosed with (what was then) ET after I fell pregnant via IVF with my daughter (who is now a teenager). The condition was picked up during my maternity checks, with raised platelet levels (which were around the 800 level) and at this point my JAK2 positive status was also identified. During the preganncy I was on baby aspirin and nothing more and had no issues. I was kept in hospital for a week after to ensure there were no additional complications (which there were not) and stayed on aspirin only for the next 9 years without any further complications. As a start, you could ask your PCP for a JAK2 test, which may help as an initial check. I know everyone is different, but hopefully all will go well with your embryo transfer.

[MAP44]

Welcome Macch1493,

I was anxious when I was diagnosis in December 2020 ( Et Jak 2+ now PV) but was really tripping when you 19 yr old daughter was also found to have ET Jak2+.

I heard from a few lovely ladies on here who have had ET for over 30-35 yrs and were being treated with low dose aspirin. They were having difficultlies with pregnancies and needed to be on the low dose aspirin. It made all the difference in carrying to full term. They continued to take the aspirin after and are still doing great. ( These lovely mothers are in their 60’s now).

I am certainly no specialist so do more follow up. This is a very slow moving disease for most of us and we will die carrying it not from it. My daughter had a telephone call with a MPN specialist and a gynaecologist, about what birth control she should use ( very heavy long cycles) and what a pregnancy and babies would look like for her. Mostly an all normal outlook for her but did include the low dose aspirin.

Blood clots, are always a concern in our world.

Good luck!