Essential Thrombocytosis

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RE: et

by CindyN on Thu May 25, 2017 08:14 PM

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I would consult a doctor who has experience with ET, or one that is a expert on erosive gastritis. Wouldn't aspirin hurt you if you have gastritis? My daughter's platelet's high as 1,800,000 and she didn't take aspirin or anything for years and is fine. Everyone is different. Get second opinion's.

RE: et

by Ivan1111 on Fri May 26, 2017 04:37 AM

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On svi 25, 2017 7:56 Ivan1111 wrote:

I have been diagnosed ET - JAK 2 positive a month ago,I am 35,male.

How the story began.

During routine blood test found platelets 550 000 a year ago.I ask my primary doctor what I should do with that?She said ,it is Ok,if platelets is bellow 600 000,you don't need to do anything.I have thought all the time that something is not OK and did every month blood test in private lab.Platel "" target="_blank" rel="nofollow">http://lab.Platel " target="_blank" rel="nofollow">lab.Platel ets were from min.470 000 to max.570 000 .

I decided to visit specialist and ask for opinion.He "" target="_blank" rel="nofollow">http://opinion.He " target="_blank" rel="nofollow">opinion.He said that I should perform sam tests and with results return to him for diagnose.That "" target="_blank" rel="nofollow">http://diagnose.That " target="_blank" rel="nofollow">diagnose.That tests include:gastroscopy,colonoscopy,JAK 2 test,abdominal x-ray,lang x-ray and heart x-ray.Everyt "" target="_blank" rel="nofollow">http://x-ray.Everyt " target="_blank" rel="nofollow">x-ray.Everyt hing Ok,exept Jak 2 positive and erosive gastritis.

I visited again with results specialist and he said due to JAK 2 positive it is ET and ask me to take 100mg aspirin/daily.In the mead time I started to use medicine for erosive gastritis.

First confusing thing,in according with aspirin documentation,it can't be used in case of erosive gastritis.

Second confusing thing,I found on few sites that erosive gastritis can lead to high level of platelets up to 600 000.

Third confusing thing,some people with normal level of platelets have JAK 2 mutation positive.

I am interested in opnion is my type of Essential Thrombocytosis primary (chronical) due to JAK 2+ or  maybe secondary (reactive) due to erosive gastritis.

I think if it due to gastritis everything will be fine when I cure gastritis or maybe not?

Pls opinion.

 

RE: et

by Mitch1967 on Wed Jul 26, 2017 04:47 AM

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Hello. Have been reading these posts for a long while and thought I would ask a question. I was diagnosed with ET about 6 years ago at 44yo with platelets at about 600. JAK2+. Level has been slowly going up. Now just over 900. I seemed to started getting symptoms around 800 - headaches most days and fatigue. Sometimes ok sometimes awful. Does anyone else get symptoms at these levels. Also yesterday after standing ironing for 3 hours, about an hour later my foot was sore. Had a lump appear on top of my foot, about the size of 3 peas. Then it became bruised. Last night and today the whole top of my foot is a deep bruise. Quite tender. GP said this is what can happen with ET and is a hematoma. Wow - I didn't knock it or drop anything on it!! Wondering if anyone else has had this?? M

RE: et

by Margo48 on Wed Jul 26, 2017 01:29 PM

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Hi Mitch, you should get a referral to see a haematologist. Those headaches are a sure sign that you need proper medication. I had headaches at that level as well and actually they developed into small strokes. I was placed on hydroxyurea and this medication worked very well to keep the platelets under controle. I had no noticeable side effects. All the best. Margo

RE: et

by ElenaH on Wed Aug 16, 2017 12:27 PM

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Hi everyone! I am so happy to have found this site. My daughter has just been diagnosed with ET at 13 years old. Her highest platelet count recorded was 2,300,000. I am very scared, but have found peace reading through some of your experiences. I have a question regarding potassium levels in blood work. In addition to her very high platelet counts, my daughter's lab work is coming back with out of range potassium levels, which is very dangerous for the heart. My daughter's hematologist believes that her potassium numbers might be coming up high because of her high platelet count. He thinks potassium is not high in her blood stream, but at the time her blood is in the lab and being tested, the potassium acts a certain way because of the high platelet content in the sample and giving a high potassium reading. Is anyone here with platelet counts in the millions having high potassium results as well?

RE: et

by ElenaH on Tue Aug 22, 2017 05:05 PM

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Hello! I am very new to ET as my 13 year old daughter has just been diagnosed. Her platelets are always around 2 million. Her hematologist has no experience with ET and the other specialist he consults with has only one patient suffering from this blood disorder.

I would like to take her to a specialist who really understands ET especially in young, young people. Could you please give me names of doctors who really know about ET?

RE: et

by boisid on Tue Aug 22, 2017 05:11 PM

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On Aug 22, 2017 5:05 PM ElenaH wrote:

Hello! I am very new to ET as my 13 year old daughter has just been diagnosed. Her platelets are always around 2 million. Her hematologist has no experience with ET and the other specialist he consults with has only one patient suffering from this blood disorder.

I would like to take her to a specialist who really understands ET especially in young, young people. Could you please give me names of doctors who really know about ET?

Hello Elena,

First and foremost, do not panic. Essential Thrombocytosis is pretty easily manageable, and considering your daughter's youth, she likely will be monitored without being medicated.

In order to be able to recommend a doctor/specialist, it would be helpful to know where you live, i.e. city and state.

Best regards

Barry

RE: et

by ElenaH on Tue Aug 22, 2017 05:26 PM

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Barry,

Thank you so much for the encouraging words. 

We live in El Paso, Texas, but thanks to good insurance, we are in the position to travel pretty much anywhere as long as it is within the US.

RE: et

by kentuckyrain on Tue Aug 22, 2017 05:28 PM

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Hiya, ElenaH,

Where are you from, try find a peadiatric specialist for your daughter. Has she had a bone marrow biopsy to confirm her diagnosis.

Its hard not to panic, is your daughter JAK+?  My daugher has ET Jak+, we are in Dubin, Ireland. My daughter is ten, she was four when diagnosed. Her platelets stay between 700-900 and she is on no treatment. She has a bone marrow biopsy every 2yrs to check her bone marrow for scarring.

As a mother its a shock to the system, i think it took my 2 full yrs to accept my daughters diagnosis. If you have any questions or would just like to talk and compare notes private message me!

RE: et

by CindyN on Tue Aug 22, 2017 05:31 PM

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My daughter was dx at 13 also, she is now 21 on no meds and doing fine. Her platelets were 1.5-2.5 for years. She was on HU for 3.5 years and I took her to see Dr. Tefferi at Mayo Clinic in MN at he took her off all meds. She has developed Von Willebrand so cannot take aspirin. Dr. Tefferi believes in treating symptom's not platelet count. We just see a local onocologist and she keeps Dr. Tefferi's office informed. We live in Bluefield, VA a small town.

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