1. < Blood Cancers & Disorders

Essential Thrombocytosis symptoms

Posted by lynn22 @lynn22, Apr 5, 2023

Having had high platelets since 2017 and doctors could not find a cause I paid to see a haematologist and I was diagnosed with ET in 2019. With a platelet level of 723 I was put on baby Asprin but unfortunately it did not suit me. I was then put on Clopidogrel but had an allergic reaction to it. I have refused to have a biopsy so far but said I will if levels go over 800. The haematologist made it quite clear that I am at a high risk of having a stroke. So I am taking Arnica homeopathy twice a day to thin the blood which helps the headaches which I have suffered with for years and take 2 paracetamol a day, usually when I wake-up as that’s when I get most headaches and sometimes it is like having a massive hangover. I also get tired and lightheaded and since January I am suffering with constant tingling hands and feet which according to the internet is another side affect. But as of two weeks ago I have tingling lips and tongue which is not listed as a side affect and I am wondering if anyone else also has these symptoms tingling symptoms. Having tried to see a doctor the surgery have said I can have a routine appointment which is weeks away. My doctor has agreed that I have a blood test every 3 months to monitor, at the moment it ranges from 750 to 800. Any advice gratefully received.

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rhollis | @rhollis | Jan 19 10:03am
In reply to @rhollis "Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist..." + (show)
@rhollis

Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist at Massey Cancer Center.

I was initially treated at a regional cancer center where blood work confirmed a CALR mutation. The Dr assumed due to elevated platelets I had ET
and I was treated for quite some time with hydroxurea, although ultimately it did not keep my platelets down the way the Dr hoped, so he took me off of it due to side effects.

At this time I sought a second opinion at Massey, and a bone marrow biopsy was recommended. This is apparently the only way to determine whether the issue is ET, Polycythemia Vera or Myelofibrosis. They have to analyze the bone marrow.

It was determined from the bone marrow biopsy that I have MF.

Based on my experience, I would recommend that you see a specialist to confirm your diagnosis.

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Just as an addendum, my platelets have consistently been over a million and did not respond to hydrea. I also have had low red blood cells and at times, slightly elevated white blood cells.

REPLY
1pearl | @1pearl | Jan 19 10:38am
In reply to @rhollis "Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist..." + (show)
@rhollis

Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist at Massey Cancer Center.

I was initially treated at a regional cancer center where blood work confirmed a CALR mutation. The Dr assumed due to elevated platelets I had ET
and I was treated for quite some time with hydroxurea, although ultimately it did not keep my platelets down the way the Dr hoped, so he took me off of it due to side effects.

At this time I sought a second opinion at Massey, and a bone marrow biopsy was recommended. This is apparently the only way to determine whether the issue is ET, Polycythemia Vera or Myelofibrosis. They have to analyze the bone marrow.

It was determined from the bone marrow biopsy that I have MF.

Based on my experience, I would recommend that you see a specialist to confirm your diagnosis.

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Thank you for your reply.
I would like to receive a second opinion; however, I have Kaiser and I would only get another doc in their system who I doubt would challenge the diagnosis I got from the doc I have. I forgot to ask her how many patients she has treated like me for ET. I did have to inform her that Keytruda was recommended for triple negative breast cancer my sister had and she was my sister’s oncologist. She get get it approved and added to her treatment along with other chemo infusions. That was over three years ago and my sister has no evidence of disease now and is in remission but she is always fearful of recurrence. I just changed to Kaiser recently when I became 65 as I had no diagnosis on my right ring finger joint enlargement using my husband’s work insurance he paid quite a bit monthly for me to have. I though maybe I would get an answer since it has a large pool of docs. Instead, I got no answer on it and a diagnosis I of ET and hypertension too! I am just very concerned and confused at this point.

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rhollis | @rhollis | Jan 19 11:54am

You need a hematologist who specializes in myeloproliferative disorders. Maybe you can find one in network?

Many of the research hospitals have specialists in this area: Mayo, MD Anderson, Duke, etc.

If you don’t think you’ll be able to seek a second opinion, I would ask your Dr whether you have a CALR mutation that is causing ET, and if so, whether she has considered ordering a bone marrow biopsy to confirm her diagnosis.

You might also ask her if she can specifically refer you to a specialist.

I sought a second opinion because I was asking questions that my Dr did not seem to be able to answer. It clearly was beyond his expertise.

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1 reply
1995victoria | @1995victoria | Jan 19 12:03pm

I'd rather take my chances with HU, then take risk of having a stroke or heart attack from elevated platelets, but that's just my opinion, everyone has different risk tolerance. I'm old and three years ago my platelets were over 800, then 1,000......so like I said I'd rather not take risks

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janemc | @janemc | Jan 20 6:37am
In reply to @rhollis "You need a hematologist who specializes in myeloproliferative disorders. Maybe you can find one in network?..." + (show)
@rhollis

You need a hematologist who specializes in myeloproliferative disorders. Maybe you can find one in network?

Many of the research hospitals have specialists in this area: Mayo, MD Anderson, Duke, etc.

If you don’t think you’ll be able to seek a second opinion, I would ask your Dr whether you have a CALR mutation that is causing ET, and if so, whether she has considered ordering a bone marrow biopsy to confirm her diagnosis.

You might also ask her if she can specifically refer you to a specialist.

I sought a second opinion because I was asking questions that my Dr did not seem to be able to answer. It clearly was beyond his expertise.

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I am so sorry for all you have been through.

Thank you for your extremely helpful advice.

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lyno29 | @lyno29 | Jan 20 3:17pm
In reply to @lyno29 "Did blood work two months ago and my platelets had gone down 10,000…better than nothing but..." + (show)
@lyno29

Did blood work two months ago and my platelets had gone down 10,000…better than nothing but still over a million. Cholesterol was significantly lower.
Drew Blood again yesterday and see my doctor on Monday so more info then.

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Bloodwork results. Platelets remained around the same from a year ago when I started on the homeopathic Arnica.. Cholesterol is down. Dr just warned me to watch for blood marrow scaring.

Sent from Yahoo Mail for iPhone

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lyno29 | @lyno29 | Jan 20 3:20pm
In reply to @sregiani "Hi, any updates? My platelets are now 746, my highest. Seeing my Heme Doc on Tuesday..." + (show)
@sregiani

Hi, any updates? My platelets are now 746, my highest. Seeing my Heme Doc on Tuesday and don't want to take HU due to side effects of skin cancers. I've had enough of those already and I enjoy being in the sun daily. Any anecdotal experience you can share might be helpful for all of us. Thanks!
Sherry

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Bloodwork results. Platelets remained around the same from a year ago when I started on the homeopathic Arnica.. Cholesterol is down. Dr just warned me to watch for blood marrow scaring.

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clickpaw | @clickpaw | Jan 20 3:43pm
In reply to @loribmt "Welcome to Connect, @clickpaw. There are diets posted online to potentially lower platelets by reducing inflammation..." + (show)
@loribmt

Welcome to Connect, @clickpaw. There are diets posted online to potentially lower platelets by reducing inflammation in the body. But understanding the reasons behind elevated platelet counts is essential for determining effective strategies for reduction.
Are you working with a hematologist to find out the underlying cause for your elevated platelets? Have you had any genetic testing done to check for acquired mutations in genes such as CALR or JAK2 which can cause Essential Thrombocythemia (ET)?

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Hello and thank you for reaching out, I live in Canada and no my hematologist has not done any tests. I was diagnosed back in 2019 but all he told me was my platelets are high and did I want to take meds for it, he did not tell me the seriousness of it, then my family DR sent me back to him in September 2024, that is when I started looking into what it was, and what hydroxyurea was, I do not want to take it. I live within 8 miles of a nucurlar plant. My platelets where 807 in September and with diet I got them down to 749 in early November, all I eat is oatmeal, brown rice, fish, dark chocolate, ginger, mushrooms, onion, garlic, berrys, whine, coffee and rasins. January 15 they where 739, they diden't go down much because i started drinking lactose free milk, creamchees, and cream. I am only 95 pounds, so i need more food.

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1995victoria | @1995victoria | Jan 20 6:00pm
In reply to @1pearl "Hi, I am in the USA and no bone marrow biopsy was done on me to..." + (show)
@1pearl

Hi,
I am in the USA and no bone marrow biopsy was done on me to confirm ET. I have high platelets, elevated white blood cells, negative JAK2, no elevated C-reactive protein, normal sed rate. I also have no symptoms. This is all very confusing and concerning to me. Why is there not a definitive way to diagnose?

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A bone marrow biopsy and aspiration should clarify diagnosis, a simple blood test isn't always enough to confirm your diagnosis.

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stickball1 | @stickball1 | 5 days ago
In reply to @1pearl "Hi stickball 1, I recently was diagnosed with ET because of high platelets. Hematologist recommends I..." + (show)
@1pearl

Hi stickball 1,
I recently was diagnosed with ET because of high platelets. Hematologist recommends I take 500 twice per day which seems high to me when she said she was starting me on low dose. I weigh 106 pounds. I already have had three basal cell carcinomas removed prior to this, so concerning to me Hydrea perhaps will cause me more of them. I had no symptoms prior to going to doctor for enlarged joint in my right ring finger proximal interphangeal phalange. And BCC removal. No diagnosis received on my finger joint which is similar to when I had it evaluated by hand orthopedist in 2023 with MRI. All this is very confusing and stressful to me and now my BP spikes occasionally when I am talking about my situation. Normally my BP is fine and I have been taking it at home everyday for three weeks now. At doctor visits my BP is high on diastolic and BP which earned me an Rx for liprinosil on top of everything else!
How high were your platelets when you were diagnosed? 350 is fantastic now.
Thanks for sharing and have a blessed Sunday.

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My platelets were over 600 and approached 1000 before being diagnosed with ET /JAK2.
Initial dosing was 500 mg/day of HU. After 6 weeks my count went to 350 and my hematologist lowered the dose to 500 mg four times a week. I’m holding at that number for over 6 months. All other blood counts, RBC, WBC are normal. No side effects except for two squamous cell eruptions on the top of both hands. Not sure if this is HU related as I’ve had issues with skin cancers in the past. Not sure how my immune system will respond if I get a URI or any other type of infection.
I was informed by my GP that this years flu shot is the wrong one for the current virus, so wearing a mask in public places is a good idea,

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