30 years old. Platelets elevated for around 10 years. All other blood counts are normal. No anemia. No inflammation or infection.
Platelet counts
2008 (Age 17) - 380
2011 (Age 20) - 455
2021 (Age 30) - 437, 495*, 442, 429 (*likely due to stress/eye inflammation)
Met with MPN specialist today. He says that since my driver mutation tests (tested for the most common mutations in JAK2, CALR, and MPL) came back negative and since my platelets are consistently below 450, even though they are close, that it is much more likely that I have a naturally high platelet baseline rather than being triple negative ET. He acknowledged that some people can have ET without being at 450, but since my driver mutations showed negative he is not concerned.
He acknowledged that the tests did not test for all possible variants of JAK2, CALR, and MPL but that it tested for the mutations that cover the vast majority of cases.
He acknowledged that the small chance still exists for being triple negative and said I can have the BMB if I want, but he is not requiring it given how low my platelet levels are. Says platelet monitoring at annual GP visits is sufficient.
His words were “I do not think you have ET based on all the information I have. If a BMB showed otherwise, my mind would be changed, but the odds of you being triple negative with these numbers are very low, therefore I am not requiring it.”
He says I should not be worried about ET.
Should I be pushing for the BMB?
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can you tell me why they were checking your levels when the platelet range is 150,000-450,000? Your numbers seem well within that range and as you said everything else is normal it’s not something I would be concerned about.
The hospital that picked up my high platelets last month defined high platelets as anything above 350,000, and my hematologist (not the specialist) said there’s a push to change the WHO criteria to reduce the normal range since many people are diagnosed with MPNs between 400 and 450K due to genetic testing.
At this point it is more about peace-of-mind that medical necessity, I think the doc is telling you there is no medical necessity. You probably do not have ET. Even if you do have ET, at this point you would likely just take a daily aspirin and monitor. Is there really value to doing the BMB at this point with the attendant risks of an invasive procedure? Particularly in the middle of the current COVID situation? You are the only person who can answer that question.
The tests do check for the common known driver mutations. JAK2v617f and exon 12 are two of the known JAK2 variants tested for in clinical practice. The more rare mutation variants are only tested for in research at this point. The triple-negative mystery will likely be solved someday as the genetic research continues to identify the more rare mutations.
No one could tell you what you should do. That is really based on your priorities and risk tolerance. If I was in your situation, I would opt to monitor-only; however, I would likely want to monitor CBCs quarterly for a while to build a better data base. You could choose on your own to take a low dose aspirin, but I would not do that as even aspirin has side effects. The doc can advise you on that.
Thank you for your response. I highly respect your valuable input.
Would like your opinion on this.
The JAK2 test only tested for V167F. Did not test for exon 12. When I asked about this, he said the exon 12 mutation is exceedingly rare and is nearly exclusively present in PV patients, so my bloodwork did not indicate the need to test for it.
The CALR test only tested for insertions/deletions on exon 9, and the MPL test only tested for mutations on exon 10. Again, the rationale he gave was that these are the mutations the vast majority of patients have, so testing for the alternate forms was not warranted.
Not really. Doing the additional more obscure testing would be more for your peace of mind than based on medical necessity. It sounds like you ended up seeing a really knowledgeable MPN Specialist who really did look at your individual presentation. You are more likely to get a better answer from a BMB, but if I were in your situation I would not do one. I have had a MPN for 30 years and I have never done one. All of my docs have been clear there is no need at this point (not all docs agree with my docs).
Something to bear in mind is that there is no linear increase in risk of thrombosis whether your platelets at 400 or 500. Treating ET, even if you did have it, is about treating actual symptoms. In the absence of symptoms (thrombosis, hemorrhage, microvascular events, etc.) you would not be doing anything different that what you will be doing anyway - monitor. You maybe would be taking a low dose aspirin.
I would suggest an alternative approach. It may be that you are just one of the people who tends to run on the high side of normal platelet levels. Platelet levels can cycle by as much as 100K in s single day in response to events in the body (bleeding, inflammation, injury, infection, etc.). Perhaps take a look at the times you have floated up above 450 and see if it correlates with a known trigger for increased platelets. Continue to monitor and correlate fluctuations with things going on in your body.
It is certainly your prerogative to pursue more extensive testing, but it may not be supported by your health care system. Since you appear to be asymptomatic, it may also not be worth the out-of-pocket expense. You are the only person who can make that decision.
Having managed a MPN for 30 years, my perspective is to control what you can and let go of the rest. We can all understand the worry that comes with not being sure what is going on, but it may just be something you have to accept. You probably don't have a MPN, but can't be 100% sure. Perhaps you can take it as an prompt to take very good care of your body and do everything you can to maintain good health. That will benefit you not matter what.
I think you should trust in the judgement of your MPN Specialist. After all, they have the key knowledge and expertise in the various ways ET presents, and his statement you ‘should not be worried about ET’ is extremely encouraging. For that reason, it certainly makes sense to me not to have a BMB - at least at this stage. Why put yourself through an unnecessary invasive procedure?
As long as you’re going to be screened annually by your GP that should be a sufficient safeguard for you to monitor any changes. Should your platelets rise above 450 consistently then maybe push for a BMB.
This is exactly what I said yesterday. If you can't stop worrying then maybe it's better to do the BMB for your peace of mind. It depends on you!
I would be happy if I were you! My platelets most of the time are lower than yours, but I'm not as lucky as you are as I do have a mutation. So open a bottle of wine together with your wife and look forward to a long and healthy life!
Hmm I don’t know how to answer this question, but I’d like to share my personal experience. My platelet count was 400 - 450 between 2015 and 2020, and finally it became 900 in 2020, so I became really nervous about it. I got a lot of guidances from this forum. I first saw a regular hematologist and had first BMB in October, then saw a MPN specialist and had second BMB in January, I got the true ET diagnosis. I am triple negative, and negative to 600 genes on MSK-IMPACT gene panel.
Thanks for sharing this. What was your platelet count prior to 2015? In other words, were you always at 400-450 prior to 2020, or did your platelets jump to 400-450 in 2015 from a previously lower baseline?
Thanks for sharing. It sounds like your situation is a little different than mine being that you had two defined jumps in your platelets (one in 2015 and again in 2020), whereas mine have been stable since the beginning of my CBC history dating back to age 17.
I agree with the others. If my platelets were 450, I’d be jumping for joy. They are usually in the 5-600 range, except for my last bloodwork where they increased to 720. And that is with medication. Listen to your doctors and keep going to your annual checkups. If there are no other symptoms, you really have nothing to worry about.
I agree with your Haematologist. It’s good that you you can check your levels with annual blood tests. I have CAL-R mutation and my platelets were 1200 when diagnosed, people with this mutation tend to have much higher counts. I haven’t had a BMB and don’t intend to have one unless totally necessary. It’s not because it’s an invasive procedure, although I’m not a sadist - I know it wouldn’t be fun - but because the result wouldn’t change my treatment or prognosis. If I was to find that I had scar tissue all it would do would be a constant niggling that it MIGHT become a bigger issue in future.
If I was you I’d enjoy life, go for your annual blood tests and try not to worry.
In 2019, I first found out I had elevated platelets. Like you, mine are above the nominal range but not super high (ranges from 480-550 or so). My hematologist ran so many tests to rule things out before moving to checking for mutations and then doing a BMB. I was negative for all mutations. My BMB showed and increase in megakaryocytes which is leading to the increased platelets. Even with this, my hematologist is not ready to diagnose me with ET. He took my case to his colleagues at Oxford, so I feel I’m in good hands. I am on sixth month monitoring visits, and he thinks that I might be in the early stages of developing ET or another MPN.
I’m not sure this will be helpful to you, but something to think about. Even with additional data, you might be in a similar situation of wait and monitor. Good luck!
Thanks for your reply. If you don't mind me asking, how old were you when you were diagnosed, and did you have a record of your platelet counts prior to 2019?
I was 42 when we first noticed. I had a huge bruise erupt on my left lower leg without injury, so my GP ordered tests which first flagged high platelets. I moved to England in 2016, and it was the first time I had blood tests here. In the US, I know I had tests, but platelets were never flagged, and it’d been several years since my last complete blood count, so no idea how long my platelets have actually been elevated. However, I donated blood in 2014 with no issues, so I’m assuming everything was okay then.
The FB support group I am in seemed to come down mainly as weird / not my favourite pass-time to some uncomfortable, to a few like yourself. Enough for me to try to ask for the same person if I have to have another - he was a specialist Nurse Technician who knows how to take care - so no junior doctor just having a go - and no blase consultant who thinks they know it all and might have got lazy......
Oh no, I had a doctor and a nurse and they were very kind. They unfortunately had to go in twice because the first sample wasn't sufficient, but the whole thing was painful. I was asked if I wanted to come back another time for the second biopsy but I decided that I would put up with the pain I was experiencing for a little longer to avoid a second biopsy. After all, the pain wasn't gone when the procedure was finished. Perhaps it hurts older people more than younger ones. It has much to do with pain thresholds, too.
Hi in my opinion I would let things lie for a while. The reason being you are young. Find out if he categorically thinks there is nothing wrong. If that’s the case it gives you a golden opportunity to sort you finances. I hate to be a kill joy but getting life insurance to cover a mortgage for example could prove difficult. Max to the limit. House prices go up. We were faced with this with my husband when he was diagnosed with Hodge kinson’s disease. Although he is now cured at the time an extension to life insurance was not an option. Luckily enough the current one we had in his name was and we just had to increase ours.
Why worry about it? You sound as if you want to be diagnosed with a cancer which would only push up travel and life insurance costs as far as I can see!You would not be treated at your age unless there is some other reason for you to be at risk from thrombotic incidents. Take a baby aspirin daily if you are worried about sticky blood - that is all you would be on with a diagnosis.
Thanks for your reply. I can assure you I certainly do not want to be diagnosed with cancer, but rather simply want to know what is truly going on.
Some MPN specialists believe that treatment with interferon immediately upon diagnosis is the best choice as opposed to "watch and wait", particularly for young people with many, many years left to live, to slow disease progression. Therefore, if I am truly triple-negative and go undiagnosed, that is time I could have spent being treated, which could impact my long-term outlook. That is my main concern in this, in addition to the fact that triple-negatives have much poorer outlooks in the event of disease progression to MF or AML compared to those with the common mutations.
I think trust the haematologist and go with annual checks. It sounds as though you already have a foot in the door to expert monitoring, and care if it’s required in the future. More frequent checking is likely to keep bringing your concerns into focus.
My platelets were mid 600s when I received my ET diagnosis and as the current range of testing wasn’t available at the time a bmb was eventually done for diagnosis. I wouldn’t want that done again unless I’m advised it’s absolutely necessary.
If you feel low dose aspirin is necessary then maybe consult with a trusted medic. Following a bump with door frame I’ve had a haematoma on my elbow for the last 6 months. On my last check up I was told that’s an aspirin risk so I’m glad it was my elbow I knocked and not my skull.
Those are really important and practical points others here have made about disclosure for insurance cover.
My count was at 380k in 2009, 430 in 2011 and between 455k-465k up until November 2020. I had a very tough year in 2017 which caused a spike to 503k, but even then my GP was not worried. I continued with annual check-ups as usual.
Eventually, in November 2020 and a count of 623k, I was referred to a hematologist who suspected ET and suggested further tests, including a BMB. My latest count was at 513k.
I was diagnosed with ET (JAK2+) and put on aspirin. My doctor's view was that my GP should have ordered the tests from 2012. I personally feel happy to have lived in ignorance for 9 years.
Everyone is different of course but as others said, higher platelet numbers do not alone define higher thrombotic risk. I am also not a doctor but I do feel these numbers are also increased by stress.
From my experience, even the testing itself (even if it turns out negative) is a procedure that can affect you emotionally. Blood tests, the BMB, the time you wait for the results. I found myself in a vicious circle of having pre-diagnosis and post-diagnosis symptoms which I cannot surely say, if they resulted from my condition or the fact that I got a cancer diagnosis (benign, chronic, indolent...whatever). Before, a headache was a headache, now I am no longer sure about anything. My 4 month journey from one doctor to the other, multiple MRIs/CT etc created so much anxiety, that I ended up being treated for that as well. So I went from drug-free to taking 6 pills a day at some point. I am now getting off benzodiazepines and will have to do the same with beta blockers and SSRIs. If you have (and I am sure you have) made your research online, you must have noticed that even aspirin use is questioned by some. Was it worth it?
Knowledge is power, ignorance is bliss, especially when you are not in a great risk and you cannot do anything drastic to change the course of things. The more you search, the more you find, the more you worry and that can make your life unnecessarily miserable.
I am not suggesting to avoid health checks but to go with the annual checkups and worry when you have to. My humble opinion.
Hi! I’m triple negative and was only diagnosed bc of a bone marrow biopsy. My platelets were in the 600s when I had my first ever CBC .. was treated for anemia, and bloodwork showed negative for the 3 most common mutations... for a few years and my platelets kept climbing. Finally when they hit 900 I had a bmb done and it showed I do have ET. Now they run about 1.4 million
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