I was hoping to find out if anyone has been diagnosed with ET with only slightly elevated platelets or has anyone had the experience that they just creep up over time?
My doctor mentioned I had slightly elevated platelets just over 400 around 2 years ago while investigating possible causes for several miscarriages.
I recently went to the doctor a few months ago as I have started having what I think is vertigo and funny vision and just feeling very fatigued I have also suffered migraines with auras and headaches for many years. My doctor mentioned it may be due to being low in iron so I was provided with an iron infusion, my iron levels are now great however I am still suffering the above. The latest platelet level was only 440 so only a little elevated but my doctors has referred me to a haematologist and talked about the potential of having ET.
I guess I’m a little confused because from what I have read I would need higher platelet level for this to be the case. If anyone has experiences anything similar that would be amazing to find out more about
Thanks
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kase28
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I am guessing the doctor is suspecting ET because of your reported symptoms and platelets being slightly on the high end of normal range. But since ET is so rare, and not many doctors know about it, it’s surprising that your doctor even brought it up, almost like he/she has seen a case before. I usually don’t post but my story may help you. I was always anemic due to fibroids and starting last year I had to have iron transfusions for 2 months (Hemoglobin 3.4 April 2019) before I can get my iron to a normal range to remove 1 fibroid. Long story short, my RBC was slightly increased above normal after the last transfusion for 2 months. Then January 2020 my fibroid was removed after 3 surgery attempts. I was put on continuous birth control since January. Then July 2020 I went to the doctor because I started to have a facial rash and body itch. My blood work came back hemoglobin=16, RBC=5.79, hematocrit =50.3%, I was referred to a hematologist with PV suspension. Further investigation from the hematologist showed that I was Jak2 negative, and all blood results came back normal, although my EPO was very high. So, it was a false alarm. I sincerely have to credit this amazing forum for helping me calmed down after going through 1 month long of a rollercoaster of emotions. If you have time, read the stories, they are truly incredible. Are you on any medications that may have caused the slightly high normal platelets? Some people on here said melatonin increased their platelets. I am not sure if you have met with your hematologist yet, but I truly you can find out more about your health soon.
Anything above the normal level, which I believe is 450, COULD be diagnosed as an MPN. It is good that your doctor is watching your gradually increasing levels. It may be just normal fluctuation, but additional testing can confirm this. In my case, my platelets gradually increased over the course of one year from around 460 to around 500. Although I had no other symptoms, my gp then had me consult with a hematologist and had other bloodwork performed which resulted in my diagnosis of ET, JAK2 positive. For several years I was prescribed only low-dose aspirin, as my platelets gradually rose, before "graduating" to hydroxy. Each of us is individual, and if you are already having symptoms, your treatment may be quite different. Please don't fret, but be happy that your doctor is on top of things.
It’s good that you’ve been referred to a Haemo. I had early 400s quite regularly along with aura migraines and TIAs for years before I went up to 600s and was then diagnosed.
Important to remember that aura migraines and TIA aren’t only linked to ET but certainly seemed to be a big factor for me. Since diagnosis & treatment I can count the migraines I’ve had on one hand .
Let us know how you get on. ET Etsy very straight forward so I’d suggest you press for one .
Thank you, I haven’t always had the auras they only started maybe 5 years ago now. It actually would be somewhat of a relief finding out a reason for them as I have always been told it’s normal.
Hi. I’m so sorry about your miscarriages. They’re devastating. Has your doctor done any blood work to test for gene mutations? That’s usually the first diagnostic tool used. Many folks with ET have what’s called JAK2+ which just means they have that gene mutation. If your doc hasn’t tested for genetic mutations do you know if that’s planned? In the early stages of diagnosis there’s often confusion about which MPN patients have if any. The genetic tests can find a number of genetic mutations besides JAK2. You’re fortunate you have a proactive doctor. And I know others on here had numerous miscarriages before their diagnosis. Please keep us posted & as someone earlier said, ET is the most benign of the MPNS. Best of luck. Katie
Thank you, I have since had a beautiful little boy and he was worth the wait. But I don’t think I have been tested for gene mutations but I have had so many tests over the years I will ask her next time I am there.
Hi,
I was diagnosed with ET Jak2 last September and am having lots of symptoms including migraines, achy and itchy legs and fatigue. My levels are currently in the normal range at the moment but when I was diagnosed they were around 600.
I have had to deal with 8 miscarriages and 2 ectopic pregnancies but have the most gorgeous little girl now who is 5 through IVF. My platelet levels were never high during this time, they were only high after pregnancy?
I’m sorry to hear about all your miscarriages! That’s interesting that they only went high after x
I wonder why you were anaemic in the first place. Are you vegetarian? If you eat meat/ eggs etc and have been having trouble absorbing iron then there is a good chance you haven’t been absorbing other nutrients either and there are several that could result in the symptoms you described .
Has your GP checked: vitamins B12 & D, folate, ferritin, TSH,fT4, fT3, thyroid antibodies, if not I would request them.
I was low in a lot of vits and saw rapid, amazing improvement when I corrected these.
Sorry I should have mentioned I was anaemic due to having a baby, he took everything from me haha! My levels are fine now though and didn’t seem to change my platelets as I have been told my iron could have been the cause for higher platelets. I will follow up on the other things you mentioned 😊
After requesting copies of my medical records, I saw ALL of my blood test results over a 10 year period showed platelets between 450 and 650 which were recorded in the report as HIGH.
During that period I had a heart attack with no obvious cause and eventually (a few years later) had a rare type of stroke leading to my diagnosis of ET Jak2+.
The platelet count at diagnosis was 550.
The initial symptoms of the stroke were severe headaches and vision problems for over a week, leading eventually to loss of power in one leg. The headaches and vision problems were due to high intercranial fluid pressure (spinal fluid)
I am now on 1000mg Hydroxy with platelets stable around 300 and an anti coagulant indefinitely.
Recognising you have a consistent high platelet count, even if it is on the low side of high, and investigating the need to mitigate the risk of thrombosis is the key to avoiding potential severe problems. Good luck...
Do be sure to follow up with a hematologist who is familiar with MPNs. Not all are as these are rare disorders. Here is a list of docs with MPN expertise.
Something to note: iron deficiency can cause thombocytosis. Also: some MPNs have deregulation of iron metabolism as part of the disease. It is really important to have a thorough analysis of everything going on. I learned from my own experience this should include a complete nutritional analysts too. Your assessment should also include checking for the JAK2 mutation at a minimum. Some docs will now start with a myeloid panel (e.g. InteliGEN Myeloid Panel) that looks at a number of different driver and non-driver mutations.
Given what you describe, it could be anything at this point. The good news is that it does not sound like there is any immediate risk and your numbers are still quite low. You have plenty of time to sort things out and get to the bottom of what is going on.
All the best to you and hope you get answers soon.
Hi, I just received copies for all of my tests over approx ten years and they are ranging from approximately 380 to 460. I have an appointment booked for November with a haematologists so I’m hoping to find out more 🤞🏻
Yeah, I've had slightly elevated platelets for 16 years. My platelets have never gone over 550. I'm usually around 450-500. I'm CALR positive. My ET seems perfectly happy to just be lazy and never progress and that is fine with me. Although my numbers are on the low side I do still have symptoms unfortunately.
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Had f/u with Hematologist 
New ET member
lowered platelets
Is this a sign of progression from ET to MF?
So much for BUPA medical
