Hi all. I will explain what I have been told so far, it's not a lot, and see if anyone can give some hints and tips!
I am 38 and suffered a heart attack when I was 33. It was very out of the blue as I am very fit and had no health issues prior. The left side of my heart is damaged and I have been on meds since - aspirin, simvastatin, ramipril & bisopolol . Good health since then, only thing my GP mentioned was my potassium levels were spiking every few months.
Around 4 weeks ago my GP referred me to a haematologist as he noticed my platelet levels were very high. Now, it turns out they have been at that high level since I had the heart attack in 2013. Who knows why he has only now noticed it (I also went for around 3-6 blood tests over the 5 years in a hospital).
Anyway, two days ago the specialist advised that they confirm I have a MPN and I believe she said it was Essential Thrombocythaemia, but I am not 100% sure, she threw a lot at me in the space of 4 mins then I was told to leave as she had a lot of people waiting, Haha.
I have an appointment next week to start on Hydroxycarbamide to bring the platelets down.
Also... as i have been on aspirin for over 5 years and they have not lowered, I am also due to have a scan on Monday on my stomach area as they feel that it may have "changed" or caused a type of lukaemia of some sort.. so, I really don't know what is happening at the moment.
I feel very fit and healthy and I am actually okay with it all. I am a strong believer in science and its progress, and I am also a strong atheist, so I know that these things happen and it's just all natural.
Anyway, enough rambling, I hope everyone is doing well!
Kevin
Written by
Kesslerkev2711
To view profiles and participate in discussions please or .
Hello. As soon as you said your potassium had been spiking every couple months I knew you had high platelets for awhile. Too many platelets can cause pseudohyperkalemia. Basically that just means your high potassium was an artifact due to your high platelets. If you google pseudohyperkalemia with thrombocytosis you will find more info on it. You may want to tell your doctor about that because many doctors don't know about that phenomenon.
(Or it's possible it was a true hyperkalemia.) That's sad that your doctor never took notice of your high platelets all those years but you seem to be handling it pretty well. It sounds like your doctor wants to scan your spleen and may be concerned about myelofibrosis. Welcome and let us know how your scan goes.
Hello Kevin - Welcome! very scary that you had a heart attack at such a young age!
First - aspirin doesn’t lower your platelet count, it keeps your platelets from sticking together and therefore lowering the risks of heart attack, stoke and TIA.
Second - I am very new to this myself. I found out my platelets were high in January of this year, but looking back at bloodwork, it looks like it has been high since at least 2015. I have found reading through all the forums and FB pages that a lot of us found out by accident by a routine blood test or worse, after a heart attack, stroke or TIA.
Third - You must try to find a doctor that specializes in MPN’s. Most don’t even know about this blood cancer, hence why some of us go so long before we are diagnosed.
I am not sure what testing has been done to confirm your diagnosis. But my hem has started by doing bloodwork to see if there are any mutations (JAK2, CALR, MPL), which were all negative for me. I had some more blood tests this past week, and if we don’t get some answers from them, next up is a bone marrow biopsy. It seems like a lot of people insist that a BMB is essential in diagnosing a MPN, but you will find that a lot have not had one.
Again, I am new to all of this...and I am sure the “veterans “ will give you much better information than me!
Thanks Carrie! Yes, the more experienced on here will helps us both I am sure. It's just been blood tests that have gave the specialists my diagnosis. After the results of my ultrasound come back, they may do a bone marrow biopsy on me also. Which will be fun... Haha. Thanks again and all the best
I’d just like to welcome you to the forum. You will find excellent support and advice here. It’s shocking to hear that you had a heart attack at such a young age. It must have been a distressing time for you.
In regards to having a bmb; the diagnostic criteria for Essential Thrombocythemia was reclassified by WHO in 2016 to include a bmb as a ‘major criteria.’ This is to distinguish ET from early Pre- Mylofibrosis. And yet, I was diagnosed with ET in 2016 without a bmb, so presumably not every haematologist follows guidelines!
It appears more haematologists now consider Pegasys the ‘go to’ treatment for younger MPN patients. So, it’s worth having this conversation with your haematologist at your next appointment. Do you know your mutational status?
Check out reputable sources such as MPN Voice (UK) and Patient Power (USA), trustworthy sites!
Hi KevGood sources of evidence based info are, as has been said, MPNResearch and MPNVoice. Tho if you google “diagnostic criteria for MPNs”, or even just go straight to the wikipaedia article on MPNs you’ll find updated research based information. Which you can print off and show to your GP, or your haematologist.
A bmb is important. It gives a baseline if nothing else, and is the only way of diagnosing MF.
The Mayo clinic also has lots of excellent reliable info.
Research names in the MPN field are Profs. Reuben Mesa ( formerly Mayo Clinic) Clare Harrison ( from our very ownGuy’s Hospital) and an Italan Prof from Florence ( can’t) recall his name - apologies - brain fuzz happening.
Also interesting stuff in Denmark and in Paris ( where interferon, pref.
slow release, is much more often used.). If I were your age in your situation I’d want to be tried on interferon - Pegasys - initially.
There is an MPN Voice forum in Oxford on 24 th April in the evening if you can get to it - hope you can.
I found the one I went to in London a couple of years ago very worthwhile.
Do keep posting: if you have to have an MPN now is a good era to have it, as drugs are being developed rapidly. And the underlying biology is getting sorted out.
Thank you Rachel! Very very useful info I can start to take on board. I do have a lot of questions for my specialist next week and you and the others have helped more!
I was really interested to read this as the first indication that I have ET was raised potassium levels - so high that, when he saw the results of the blood test, my GP sent a blue light ambulance for me. I had a spleen scan and tested as JAK2+ to confirm diagnosis.
If you are not being treated by an MPN specialist then you might want to consider asking your GP to refer you to one. We live in Lincolnshire and my partner receives his treatment from Prof Harrison at Guys Hospital, London.
Did they have you do a bone marrow biposy? That is one way to know whether or not you have thrombocythemia, unless you have the JAK 2 gene mutation or another chromosomal marker done via blood tests. Did they do blood tests for these things?
The bone marrow will show if your bone marrow is producing abnormal, large platelettes. If they are normal, it could be secondary thrombocythemia, normal platelettes that are high due to another inflammation going on.
I go on Friday to figure to get my bone marrow biposy results. The biopsy was easy- the dentist is worse! But like you, at first they threw alot of things at me and I was more confused than ever. I have been reasearching which helps. There is also an MPN online support group....
Good Luck! I am a Christian, so I will pray for you. (If that's ok).
Thank you! They have only done blood tests so far. Ultrasound tomorrow and once they get results if that they will decide whether or not to do the bone marrow biopsy. So I still don't know a lot. I am sure I will find out more in the next few weeks or so!
Haha, yes Pray away, it won't hurt anyone!
I wish you all the best for your results on Friday! I hope it's good news!
Hi Kesslerkev2711, i echo mel's (cluabdino) reply to you. It is indeed very sad a majority of us can go many years before doctor's realise theirs a problem with high plts and because a lot of gp's have not heard of mpn's, a lot of people have to put up with niggling symptoms and a general feeling of being unwell before getting to see an haemotolagist and then having to rule out secondary causes before a diagnosis can be made. I'm glad your found the forum and welcome you wholeheartedly and i am sure you will get some good advice and tips and a warm welcome. Sending you good wishes.tina.x🤗
Similar happens in my case. My consultant said my et had started from Nov. 2013. So I had high platelets for years. I also had a scan late last year on my stomach area. My iron was low as well so I had a iron transfusion. Then Hydroxycarbamide shortly after. The slowly brought my platelets downs. My headaches have calmed. I’m not so exhausted as I was but still get tired like before medication.
I’ve an appointment next week see how I’m going. My platelets were good last appointment. So I’m a bit worried they up again. As you never know until you get latest blood test results. I wish you well as I still feel having this cancer is a bit confusing whether it is more confusing. My Consultant said it isn’t.
I wish you the best for the results next week! I have had zero side effects. I am srikk very active, even though I had a heart attack back in 2013, I have never felt better.
However I guess once I am put on Hydroxycarbamide , I may experience some side effects.
I am also considering no medication at all, and just see how things progress naturally. I have been met with some severe disagreement within my family, considering I'm 38. But I will have a good chat with a specialist and take it from there!
Thank you everyone for your support and usefull words!
You might like to have a chat with more than one specialist: you are much younger than the usual mpn patient so you are likely to be on any medication for a long time.
Once you have all your test results, seeing another specialist for a second opinion (and I'd suggest setting up a private appointment , as that's so much quicker and easier and well worth the £200 or so it might cost) will reassure you and your family that you are getting the best available treatment.
That is a lot to get thrown at you in four minutes. Sad that so many docs are trapped in the heavily time-limited interaction with their patients. I am in the process of now coming off HU (called hydroxyurea in the states) based on a consult with an MPN Specialist. Many hematologists only see a handful of MPN cases because they are rare. Some docs are much more knowledgeable about MPNs. HU is therapeutically weak, so the doc has to keep you on the edge of toxicity for it to work. It does lower platelets, but also all other blood cells (red and white - AKA erythrocytes and leukocytes). Current thinking is that leukocytosis is a greater risk factor for clotting than thrombocyctosis alone. There are significant side effects to consider. I have had immune system compromise (mouth ulcers and thrush), compromise to intestinal endothelium (constipation and flatulence) myself. Additional possible side effects include: testicular atrophy/hypogonadism (decreased sperm count and/or Low-testosterone - not always reversible), and birth defects (highly teratogenic for both men and women exposed). Women of child bearing years are not supposed to even touch the bottle unless wearing gloves. Male partners are supposed to use condoms as it does pass into semen. Because of your age, these are things to consider. Additionally, HU is a known carcinogen - it is mutagenic. Additionally, it is potentially leukomogenic. You mentioned possible leukemia, so this would also be something to bear in mind. Despite all of the HU is still a mainstay of MPN treatment. It has been around a long time and the docs are familiar with it. It is also cheaper than most other options. Given my own experience with it, I would suggest consulting with an MPN Specialist to review your case. Also can do your own research on-line - just search hydroxyurea + <side effect you are concerned about> to find the current research available. Hope all goes well for you!
Thank you very much. A lot of good info to consider. I have about 50 questions for the specialists, so I will be sending then their way and start to build a picture of what is going on! Thanks again!
Hi all. Just a quick update on my situation. Seen the specialist yesterday. They advised the ultrasound results show an enlarged spleen, which she says is pretty normal when having ET. All of my other bloods look totally fine. Platelets at 724 on last check. I start Hydroxycarbamide today. I asked why I am on that rather than interferon, as I am only 38, but it's due to the risk of me having had a heart attack etc. I asked to have more information on the decision. So, I guess it's just take it and hope I don't get the worse end of the side effects and back to life as normal!
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.
Platelets slowly rising to 681 over a few years.
Newly diagnosed with ET 
42 years old and recently diagnosed
Newly diagnosed with ET Jak2+
New diagnosed Question
