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 💐!
Awwww that is so kind of you to check in on me! Nope no real answers yet . My platelet still high, climbed a little bit 1138. Had MRI pelvis and it confirmed. enlarged uterus , multiple fibroids and also diverticulosis . Have seen Haematologist, tested negative for Jak, Calr, MPL etc. having BMB in 2 weeks. I am not on any meds yet, Haematologist said he doesn’t want to start aspirin yet because of my uterus and bleeding etc. so he is chasing up Gynaecology. I am back working but feel nervous as I have no idea what my risk of blood clots are etc. I generally don’t have symptoms apart from tingling in hands and feet at times. I dunno……it’s all dragging out and I am rather nervous about it all. Hope you are doing ok! 💐☺️🫶
Hello again. Glad you have some good news re. lack of the three mutations. I can well imagine the wait for clarity is frustrating but you’re starting to get some answers.
Re thrombosis risk - the MPN Specialist I saw (and comments on this forum) said that HcT matters - he wants to see at least 3 consecutive months of that being under 45%. My understanding was that this would indicate that my thrombotic risk is being well managed. I’m a bit fuzzy on how much role platelets do or don’t play in risk of thrombosis.
Best of luck with the BMB and getting help with the fibroids etc.
I m not sure the lack of mutations is a good thing? Read somewhere that triple negative ain’t a good thing. Haematologist didn’t want to get. Into this discussion as he said it’s all just statistics and there is no way of know which way a person will go/what will develop etc. The BMB is to check for early MF as apparently it presents like ET at the start. There is no MPN specialist in NZ, not that I could find and Haematologist told me MPNs are not rare at all just rare in my age group (55). He wants to start me on Aspirin but is reluctant because of my uterine issues and has written to Gyenae to request a Hysterectomy etc. I find that a but scary with my high plateletsetc. It am also hoping that my platelets may come down a lil bit once uterus with all these fibroids is gone 🥹😔😬 ….a bit much going on!
Sorry - I don’t know about triple negative specifics; others here will.
Is your haematologist consulting with Australian / other country specialists? Is there any way you could have an online appt so you could ask lots of questions?. (Sorry if that’s an unhelpful suggestion as I’ve no idea of the practicality or funding issues).
I have been told if fibroids get to the point of surgery it’s do-able but would need multi-disciplinary liaison.
The prevalence of ET in the general population is between 24-30/100,000. (note that these figures vary by study) At 0.00024% - 0.0003%, ET is considered to be a rare disorder. Most with diagnosed with ET are around the age of 60 or older but about 20% of people with ET are under the age of 40.
It would be correct to think that platelets may come down if other health issues are resolved. Inflammation, infections, bleeding and more can cause reactive thrombocytosis.
There are MPN Specialist doctors in New Zealand. there are 5 docs listed here. mpnforum.com/tsr-the-list/
New Zealand Auckland Auckland Dr Richard Doocey
New Zealand Canterbury Christchurch Dr. Ruth Spearing
New Zealand North shore Auckland Dr. Anna Elinder-Camden
New Zealand Waikato Hamilton Dr. Hugh Goodman
New Zealand Waikato Hamilton Dr. Natalia Gavrilova
While treating the uterine fibroids is important, I would suggest not moving forward on a major surgery without consultation with a MPN expert doctor.
There are implications to a triple-negative form of ET. These implications are not altogether clear due to the rarity, but it may be true that the thrombosis risk is lower than ET with JAK2 and there may be a higher risk of disease progression; however, there are other factors that influence your actual outcome, including non-driver mutations and co-occurring health issues. It is important to understand that general statistical projections are not the same as your individual prognosis. There is information in the literature if you care to review it.
Thank you Hunter for your informative reply! I have read soo much that I m at a stalling point as I have overloaded myself with info and trying to figure out what is relevant to me. I have seen the list of “ specialists “ in NZ Yet if I enquire in hospital/s the answer I get is that there are none ? I will keep pressing on with it and yes I won’t agree to major abdominal surgery unless there is a clear management plan between haematology and gynaecology. Thanks again Hunter! I hope you are well 💐
The hospital systems may not even know that MPN experts exist. Some do not like to acknowledge that there are providers with greater expertise elsewhere. Egos do sometimes come into play. Regardless of the ause, accessing the expert care you need is a top priority.
Regarding info-overload, suggest taking a break to give yourself time to process. You likely have plenty of time to make decisions. no reason to rush into anything needlessly.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Not diagnosed
I am very confused. 
Besremi - CBC after the 11th dose kept at 175mcg
RE: 28F, Terrified I might have PV
