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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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janemc | @janemc | Jan 1 9:08am

Thank you, nohrt4me, for your very helpful comments, and for all you've done to facilitate the conversation.

". . . doctors are doing a terrible job . . . " -- sadly true.

ET is poorly understood, especially by general practitioners, and the oncologists are too overworked to listen to our questions.

Not only will we have ET for the rest of our lives, we have to DIY our own solutions.

Hearing what others have experienced and getting research referrals helps me a lot.

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tokyolin | @tokyolin | Jan 3 10:09am

Does anyone else out there with ET have high ferritin levels? My levels are 3 times higher than they should be.
Mine are in the 600's. I am concerned, but my PCP says it is due to the inflammation of the ET itself.
Comments appreciated.
Linda

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7 3:18pm

When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks.

Keep in mind that natural substances can also have toxicities, adverse side effects and treatment interactions. Supplements are not regulated and can be marketed without rigorous clinical testing.

More and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine in programs called Integrative Medicine or Integrative Oncology. Integrative medicince is offered at many cancer centers of excellence, including Mayo Clinic.

Here's a link to more information about Mayo Clinic's Integrative Medicine programs
– Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

If you are interested in complementary medicines, please let your oncologist know.

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eileen11108 | @eileen11108 | Mar 31 7:30am
In reply to @cbabby "I decided to go naturally. I’m not saying that it will work for everyone- seems to..." + (show)
@cbabby

I decided to go naturally. I’m not saying that it will work for everyone- seems to be working for me.
I had an allergic reaction to Hydroxyurea. Chemo pill specifically required for ET (Essential Thrombocytosis)
I found a natural supplement compared to Hydroxyurea, Resveratrol. 1500 mg a pill. I take 2.
My Dr than suggested Anagrealide.
Which will cause fainting, and dizziness. I already at some points experience these symptoms. I’m told is a blood pressure thing.
So!?- if I’m already lightheaded/dizzy. Why would I take a pill that will increase this, and might/could possibly faint.

I searched things to do naturally. I’m found Resveratrol.
Along with Vitamin E- which is a natural blood thinner- and an anti-coagulant.
Both taken together works good for me.

Your blood is a protein. Meat (red) steaks, hamburger, etc are also a protein.
The Mediterranean diet is recommended for people with ET. You want to do anything and everything to get that platelet number down.
You don’t want to increase it.
Leafy greens and vegetables are great source to aide in bringing that number down.
Water! I drink a gallon a day. Not saying you have too.
But water isn’t a great source to flush everything out of your system. Plus, it’s great for your kidneys.
Also- Cranberry juice. Drink regularly.
Salmon, shrimp. Etc. won’t increase your plates counts.

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@cbabby

How are you doing with your natural approach? I am about to start low dose Anagrelide as I am headache prone.

Eileen

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1 reply
lynn22 | @lynn22 | Mar 31 9:18am
In reply to @eileen11108 "@cbabby How are you doing with your natural approach? I am about to start low dose..." + (show)
@eileen11108

@cbabby

How are you doing with your natural approach? I am about to start low dose Anagrelide as I am headache prone.

Eileen

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Ok, symptoms no worse and they don’t interfere with my life but unfortunately my platelets have been slowly rising and now at 790. Haematologist wants to to do blood tests to see if I am still Jak2 negative and also see if any other mutations. She says my age is now the problem (61) and says I will need to go on chemo, I will have to give it a go but as I told her if I cannot tolerate the drugs so far I don’t hold out much hope! I will still keep researching alternatives. I have to say though having spent 6 weeks in Spain in the winter I felt amazing, my symptoms almost all went away, haematologist said a few of her patients have said the same she said it is the vitamin D and that they reported it had lowered their platelets!

Good luck with your Anagrelide.

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sudutoo | @sudutoo | Apr 7 11:47pm

I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I had a blood test done in hospital; treatment has been hydroxyurea and I also take a full size aspirin before bed, chewed. I have blood drawn every three months and hematologist visit every six months. My understanding is they do not know what the cause is; Dr., who is also an oncologist, had DNA done on blood on initial visit and found gene toward leukemia (JAK, I think), but no signs of cancer. The aspirin is something that I have taken for many years and was not prescribed, but my doctor has not said to reduce or discontinue. 700,000+ when found but now are around 400,000 to 530,000. The hydroxyurea is said to be working. If you are not interested in medications, you might discuss it with a professional whether you could donate platelets, if you are on medication this is not allowed, depending on the medication, I suppose. Potential stroke is the rational presented for treatment. I asked if diet could be a potential aid, and was told no.

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4 replies
sudutoo | @sudutoo | Apr 8 12:04am
In reply to @mdterp76 "My platelets numbers were similar to yours in January, plus blood work identified a Jak2 mutation...." + (show)
@mdterp76

My platelets numbers were similar to yours in January, plus blood work identified a Jak2 mutation. I would definitely recommend that you see a hematologist/oncologist/MPN Specialist. I am very high risk with those numbers, also due to age, over 60. I take one baby aspirin per day, one iron (low iron but not anemic), and 500 mg of HU 2x week. Now, my platelets run 500-550, but overall blood work looks better than before I started HU. Take care!
Karla
A friend from Maryland, U.S.A.

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It is like I take 500 mg hydroxyurea 2 X D except two days I only take 1 X D. At the date of concern, count was about 700-720 K. It is interesting that I am on such a higher dose?

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1 reply
sudutoo | @sudutoo | Apr 8 12:12am
In reply to @nohrt4me "If you have dye allergies, tell your pharmacy. They can tell you what dyes are in..." + (show)
@nohrt4me

If you have dye allergies, tell your pharmacy. They can tell you what dyes are in the brand of HU caps that they carry. They should be able to arrange to get you clear gel caps.

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Not mention that the reason that there even is red dye #40 is that red dyes tend to be carcinogenic?

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janemc | @janemc | Apr 8 8:40am
In reply to @sudutoo "It is like I take 500 mg hydroxyurea 2 X D except two days I only..." + (show)
@sudutoo

It is like I take 500 mg hydroxyurea 2 X D except two days I only take 1 X D. At the date of concern, count was about 700-720 K. It is interesting that I am on such a higher dose?

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It seems that different people need different doses. What you're doing is working for you -- that's what's important!

You might want to look back through your lab results to see if you can find your "driver mutation." Is it JAK2? CALR? MPL?

My oncologist says that those of us with the MPL variation seem to need a higher HU dose.

All good wishes!

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1 reply
winmil99 | @winmil99 | Apr 8 8:42am
In reply to @sudutoo "I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I..." + (show)
@sudutoo

I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I had a blood test done in hospital; treatment has been hydroxyurea and I also take a full size aspirin before bed, chewed. I have blood drawn every three months and hematologist visit every six months. My understanding is they do not know what the cause is; Dr., who is also an oncologist, had DNA done on blood on initial visit and found gene toward leukemia (JAK, I think), but no signs of cancer. The aspirin is something that I have taken for many years and was not prescribed, but my doctor has not said to reduce or discontinue. 700,000+ when found but now are around 400,000 to 530,000. The hydroxyurea is said to be working. If you are not interested in medications, you might discuss it with a professional whether you could donate platelets, if you are on medication this is not allowed, depending on the medication, I suppose. Potential stroke is the rational presented for treatment. I asked if diet could be a potential aid, and was told no.

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really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to "donate" I was diagnosed 1 yr ago plts 500..go up to 650..esp if I have infection like a cold... I take low dose aspirin for now..it they hit 700, I will start on HD... whole thing is kinda scary...no reason to get it other than a mutation..I have identical twin who does NOT have this.

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