I am trying to find out as much as I can. Had to have a blood test in January due to 3 months of very heavy peri/post menopausal bleeding. My iron was low and platelets at 1140, everything else normal. I was given a prescription for iron tablets and my blood test last week showed iron now normal but platelets still very high. I now have to have further tests (genetic? JAK?)
An ultrasound of my uterus revealed several fibroids, some cysts etc, I am awaiting a biopsy of my uterine lining. There was also a mass behind my cervix.
Unfortunately I have already waited 3 month as the waiting lists in New Zealand are really long and potentially have to wait another 2 months.
Due to my high platelets IHave been grounded from work as I am cabin crew, so the stress of it all has almost put me in this freeze state. I have looked for data re heavy menstrual bleeding /fibroids and platelets and have found very little info.
I tore my rotator cuff at the start of the year ( shoulder)
Would anybody have any information if indeed this could be more a reactive Thrombocytosis due to fibroids, bleeding and shoulder injury or does it lean more to ET?
I guess to me it makes no sense to have all these tests when my uterus is enlarged and has stuff growing in it, needing investigating but they want to look at genetics.
Thank you all so much for your time and sorry about this huge assay!
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Manaaki
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Sorry to hear about the multiple medical issues piling up. That is very stressful. It sounds like you have been doing some of your own research. You are correct to think that reactive thrombocytosis is likely playing a role in your current platelet levels; however, it would not be safe to assume that is all that is going on with the level of thombocytosis you are experiencing. While iron deficiency, injuries and bleeding all cause reactive thrombocytosis, you need confirmation of whether you have a MPN.
Assessment and treatment for MPNs is optimally done in consultation with a MPN Specialist. Most doctors, including hematologists, have little experience with MPNs due to how rare they are. There are MPN Specialists in NZ, which you can find on this list. mpnforum.com/tsr-the-list/
The test that would make sense at this point would be a MPN Myeloid panel. This is a blood test that looks for the three MPN driver mutations, JAK2, CALR, MPL. The presence of one of these driver mutations would shed light on your diagnosis. The absence of these mutations would likely lead to a recommendation do a bone marrow biopsy to rule out a triple-negative MPN. A BMB may be done to confirm your diagnosis regardless.
Thank you Hunter for your warm and informative reply 🥹. My emotions run really high just now, the waiting and the unknown are crushing. I feel totally helpless……just gotta wait and breathe. I am so glad I found this forum. Dr Google is fear inducing so I think I take a break from googling!
Dr. Google is not a competent provider. It is far more helpful to rely on credible source, particularly until you have the context to screen what you are reading. Once you know whether you need to learn about MPNs, rather if you need to learn, you will have plenty of time to learn what you need to know.
I'm sorry you're going through all of this. It's good that you're getting genetic testing to check for the gene mutations that causes MPNs. It seems possible that it could be reactive thrombocytosis but it would be good to rule out MPNs since your platelets are so high.
Thank you Brightlys ❤️ yes absolutely, good to have tests done but nerve wrecking either way. All this waiting! Our health system in New Zealand is struggling so wait times are very long.
Hi Manaki. Sorry you’re going through this too. The stress and frustration of the wait is hard; I’ve just been through the same thing .
Our experience has been similar (I’m in the UK). I did the same research as I have fibroids, am menopausal and recently had a hysteroscopy and biopsy. Low ferritin for years and raised platelets though to be in reaction to iron deficiency.
My understanding is that it is possible to have secondary thrombocytosis due to fibroids. The genetic testing is so important though. I would have continued long term in a risky state if I hadn’t had a weird migraine aura / TIA which led to a (fortunately) delayed MRI which picked up a later tiny stroke. The stroke and platelets prompted the Stroke Consultant to organise my jak2 test, which was positive.
There are possibly differences in our stories - I was symptomatic for years. I also had long term raised haematocrit and high normal haemoglobin - Hunter5582 has helpfully explained that the thrombotic risk relates to erythrocytosis rather than / more than thrombocytosis.
Wishing you all the best and that the wait passes quickly.
Awwwwww thanks for sharing this RoundTheWorld ❤️! Yes I am currently waiting for that biopsy, glad you have had yours finally! It does seem to make sense that when you bleed heavily for weeks on end that platelets would be going nuts. I am slowly having more moments where I m not in freeze, shut the door mode. Just gotta keep going through the process, physically I feel ok. Have started to apply a natural progesterone cream which has made a big difference in helping me to rest and get some sleep. Thank you so much for taking the time to reply!
Hello, Sorry you’re going through this. I can relate to some of it. I’m 44.5 years old. Female. 3-5 years ago I think it was my period started changing to heavy, on and off, spotting.
Then like 6mo I think it was period now on and off through the whole month, every month.
Hematologist had my iron tested and think ferritin too and very low. Had me get a trans vaginal ultrasound. It showed I have 1.2in thick uterine lining. Also said a benign appearing cyst on left ovary, and a benign appearing nabothian cyst on/in cervix.
My acupuncturist/Chinese Med Dr said this is often common with women in my age due to Peri menopause. Same as period longer and heavier is.
Hematologist said go to Gynocologist to get checked and see what she says.
Def get the genetic tests related to MPNs, and JAK2 test too. I’m JAK2 and first Hematologist said ET. Second Hematologist said I am ET bc high platelets, but may also be iron deficient PV.
Meaning that although my labs said red blood cells aren’t high that can be bc of iron deficiency, likely deficient from heavy frequent period/vaginal bleeding.
He thinks this bc June- Sept I took iron supplement every day and my red blood cells got too high. Think he did say when iron levels go up, platelets are supposed to go down.
I’m bothered not knowing if also PV but he said don’t take iron bc then likely RBC too high then will likely have to sit at machine taking blood to remove and lower RBC which will also further lower iron and is not a comfortable experience.
I’m trying to figure this out. I only found out about all this horrible mess, ET April 2023 in ET for severe vertigo type issue.
Brain CAT Scan normal. I and ENT think maybe vestibular migraine but who knows.
I will say def also get tested for Epstein Bar virus with titers and antibodies. I’m finding out many/most ppl with EBV whether current or had in past now with antibodies generally have an MPN and/or blood disorder.
My holistic Dr is the one who figured this out.She used to work at Mayo Clinic with blood and viruses.
Despite what we are incorrectly told, eating animal products can and does raise platelets levels, and usually RBC and WBC levels too.
No animal products but a healthy organic Whole Foods plant based diet 3 mo lowered platelets count about 100 points or so.
Also get a full hormonal panel blood test and cortisol. I was told to get this bc period change issue and did.
There’s a GREAT group for MPNs on Reditt app/website. On it there was a post not too long ago about I think at least 3 women all with high platelets that all said the same thing about heavy period bleeding longer and heavier than they ever had.
I also think bc the body is very intelligent and will try to save itself if and when it can that maybe some of the very heavy bleeding and longer on off is also to lower our plateleys, RBC, etc. Like a way to lower chances of a thrombic problem.
Also like you said I’ve wondered even with JAK2 could this still be a form of reactive ET from the heavy long on and off periods?
Its logical to agree the heavy bleeding and longer bleeding even if not an actual period is the body recognizing too many platelets, RBC, are a problem.
WOW! You Definitly have been through it! Good on you for looking into everything and I like how you say that the body tries to save itself etc. Our job is to help our bodies to find that harmonious balance again in which it can heal/stay as well as it can! Thank you so much! You have given me a lot of info and th8ngs to think about! I am very grateful for your reply 💐!
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First Hematologist visit
MPN specialist says I “most likely do not have ET” and is not mandating BMB - need your thoughts 
Test Results - good news for now
RE: 28F, Terrified I might have PV
new member with p-vera exon 12
