From our friends at MyMPNTeam. Short easy to understand information about the significance of platelet count in MPNs. Be sure to watch the short video about 1/4 way down the page.
Understanding Platelet Counts in MPNs: From our... - MPN Voice
Understanding Platelet Counts in MPNs
Written by
hunter5582
To view profiles and participate in discussions please or .
39 Replies
•
Thanks you, Steve! My current local hem/onc needs to see this!
And I sent it to my egotistical local hem/onc dr and she wrote back about how glad she was to see me finally take an interest in learning about MPN’s. 🤷🏻♀️ 😆
OMG! That is hilarious! maybe you should give the egotistical doc a transfusion of your willingness to learn. 😂🥴🤪
Yes! The ego is BIG with that one!
Good info on the fear of medium high PLT values.
This subject is a point of frequent discussion. By this, those members in the 600s for example, are not for certain at higher risk. But at 1000+, where I was, it's worth addressing but still not necessarily a severe risk:
<<“This association between high platelets and thrombotic events has been looked at in a variety of fashions over the past 50 years now, and really nothing conclusive has come out of that,”...In fact, large studies have shown really no correlation between higher platelet counts and an increased risk of thrombosis. If there’s anything that’s certain, it’s that if platelet counts get to maybe over a million or over 1.5 million, there’s an increased risk of bleeding that occurs.” This means that, even if you have very high platelet levels, your doctor may not be too concerned about blood clots. You may have to take precautions or receive treatment to reduce your risk of bleeding problems, though>>
They say having Jak2 ET is more relevant than PLT to thrombotic events.
This is good, not all Drs work this way:<<“So we’re focusing more on headaches and paraesthesias and quality of life and fatigue and trying to see what types of interventions could potentially help>> vs obsessing with PLT values.
Not entirely up to date <<Interferon drugs such as Intron A...>> This non-PEG INF is no longer used for most MPNs, or anything else, and has just been discontinued.
I can't find or play the video.
The video is right above the header Low Platelet Counts While Living With an MPN.It seems to autoplay but needs the volume turned on.
This article was pretty quick and KISS. Noting Intron is a bit dated as is missing Besremi. Still an interesting summary of what we are hearing now about platelet levels.
Yes very timely. The clear statement on the PLT studies is 1st time I've seen it that clearly. We can refer when a member is worried about marginal PLTs and Dr isn't.
I use Firefox with extra security stuff, and occasionally things don't work, this video is one of them. Sort of like an over-immune reaction to excess meds.
So, if one has ET JAK2+ and is high risk, is this saying that controlling platelets and lowering them is still necessary?
My take from the info is lowering is likely not necessary for preventing the usual worry about thrombosis. But for bleeding it is advised to lower very high PLTs. But they seem less worried about bleeding than thrombosis.
But they say Jak2 status is a known risk for the thrombosis usually (and incorrectly they suggest) attributed to high PLT. Of course we can't opt for a different mutation, so nothing we can immediately do on that.
He does not separate low/high risk disease, it suggests this new thinking applies to all.
--
I got the video to work.
"Just because we can normalize a number, that matters only if it makes the patient healthier, or less thrombotic risk."
We know HCT and likely also WBC are important, but PLT has shown no correlation of PLT to thrombosis. Implication is we should fix high HCT and WBC, but ok to leave PLT alone.(with exception as above for bleeding)
Early studies of the PLT issue pre dated knowledge of mutation types, and mutation is relevant to thrombosis.
Their attitude tends to "Ya your plts are high but I don't really care too much, I'm ok where they are"
His big message is not to endure the risks of the usual meds just to reduce PLT (with reasonable limits) . This is a big change in attitude in our MPN field.
My platelets were running in the 600’s and 700’s while I was having phlebotomies. They jumped to the 800’s in June. In July my HCT bumped up to 44.5. I’ve had a phlebotomy in July and one in August. I honestly think my platelets are rising due to iron deficiency. One more month til I see my new local hem/onc Dr. Cannot come soon enough!
I would say that it is a very high probability that PLTs are increasing due to the phlebotomies/iron deficiency. That is just normal metabolism. My PLT were + 200K due to phlebotomies/iron deficiency.
Looking forward to hearing how the appointment with the new doc goes. Hope your experience is as positive as mine has been.
I think that summarizes it pretty well. That is consistent with what we hear from others, but not from all. Dr. Spivak (my former MPN Specialist) has been saying for while now "Leave the patient alone!"
My own take on this when it comes to platelets is that there is no value to making PLT "normal" for many of us. The evidence simply does not support this as a goal. We are each different in how we present and what our treatment needs are. What really matters is controlling actual symptoms. It may or may not correlate with PLT levels. That is why individualized goals are so important. For those of us with PV, there is a different calculation. Erythrocytosis clearly does matter. Possibly, leukocytosis matters as well.
What matters is controlling actual risks of thrombosis, hemorrhage, microvascular symptoms, and VERY importantly then actual secondary/constitutional symptoms we actually experience. Preventing the progression of MPNs also matters a great deal. The inherent risks of the treatment options always has to be considered. None of the options are benign. We always have to weigh the intrinsic risks to the putative benefits.
This is a great conversation for all of us to have with our care team. We each have to make up our own minds about what we believe the treatment goals should be and what risks we are willing to tolerate to achieve our goals.
All the best.
Agree. I know that my symptoms are less when my HCT is 40 and under!
That is a perfect example of knowing your own body. You know how you respond and what makes you feel better than anyone else.
I have to get a CBC tomorrow. I asked the local ego-ridden Dr if she would add a Ferritin and Iron. Nope. She said there was no need to know what the number is, now.
Don't you know that Ferritin/Iron panels are like gold. They must be hoarded!!
Seriously, my local hem-doc checks the iron numbers periodically without me asking. He is quite aware, even though not a MPN Specialist, that iron metabolism is a central part of PV. He also knows that I felt quite lousy when my iron levels were too low.
Given that you are undergoing phlebotomies, it is safe to assume your iron levels are low. That is the whole intent and purpose of the phlebotomies. It helps control erythrocytosis. You can infer whether your iron levels are rising or falling by looking at your erythrocyte numbers on the CBC (assuming no change in meds).
What really matters the most is how you actually feel. You are the expert on that.
I know they are low, I just wanted to know how low, since the last 10 days I have absolutely felt horrible. Exhausted and short of breath. Which I told her. She still would not order I need to stop complaining about her! Soon I will be rid of her.
GR2BR with that doc! Fortunately you are moving on.Hopefully the new doc will help you for it out.
The fatigue adverse effect is what convinced me to move on to IF-only as my preferred treatment plan. i feel much better with my iron levels higher.
To contrast Dr attitudes, mine is MPN specialist; he respects what I learn (whether he acts on it is another issue) When I asked for another LDH and also a blood type, he said these are not medically needed but no hesitation to do it since I asked.
It's surprising we rarely learn our blood type in routine tests
It is saying that there is more to the issue than just lowering PLT to reduce risk of thrombosis. There is no evidence that lowering PLT in and of itself reduces risk of thrombosis. It does reduce risk of hemorrhage for those with very elevated PLT levels. My take is that what matter more is to control how PLT behave than how many of them there are.
It may be that there are correlations between symptoms and PLT levels, at least for some. The article did not address the issue of inflammatory cytokines for instance. Reducing PLT levels could theoretically reduce cytokine levels since it is suppressing mutated hemopoietic stem cells. This could, in theory, actually be why some people feel better due to cytoreduction.
None of this means that we ignore thrombocytosis. just that we deal with it in a nuanced way. it is not just about the numbers when it comes to PLT.
This is excellent!!!
Thanks for this.
There seems to be a lot of controversy on the control of platelet numbers in ET. Some haematologists recommend <600 some less than <450 and others <400. I think EPguys haematologist recommends less than 360?
I’m happy to be guided by the WHO recommended <450.
My understanding of the significance of keeping platelet counts less than <450 or <600 (depending on guidance) in ET is relevant to ‘high risk’ patients. So, along with raised platelets this would also include additional risk factors, such as age (but not age alone) Jak2 mutational status, previous blood clots and cardiovascular history.
I have read this article with interest. It claims the MPL mutation also has less risk of thrombotic events, this has never been my understanding. Can anyone elaborate further on this
Given how rare the MPL mutation is, there is relatively little information on it. I think that relative to JAK2 the risk of thrombosis with CALR and MPL is less. That is not the same a no-risk. Like many things MPN, I expect that the individual profile of each person is the most important aspect of determining risk.
Here are a couple of articles you may find of interest.
MPL mutations lacked prognostic significance with respect to thrombosis, major hemorrhage, myelofibrotic transformation or survival.
ashpublications.org/blood/a...
JAK2V617F appears to be a risk-modifying mutation and has been shown to increase the likelihood of thrombotic events in patients with ET across studies. As such, it has been included in prognostic models and its presence may influence treatment decisions. The association of CALR and MPL mutations with the incidence of vascular events has been less clear.
ncbi.nlm.nih.gov/pmc/articl...
If you have not seen this presentation, it is worth watching.
youtube.com/watch?v=zHwTIJb...
Thanks Hunter, your response is much appreciated. I have seen those articles too.
Do you know what though, for every article I read on MPNs, there’s another article that contradicts prior information.
In relation to the MPL mutation in ET, I have some vague recollection that I had read somewhere it was high risk for thrombotic events, so I went ‘searching’. I also found what you posted, but I also found this?
link.springer.com/article/1...
Thanks for forwarding the article. I added it to my MPL folder.
It is not always clear and can be very confusing to sort through conflicting data and conclusions. It will take more research and time to reach a clear consensus. I expect we have quite a lot more data on JAK2 since it is the most common of the MPN driver mutations. MPL is the most rare. I expect that it will be a while before there is a consensus on this issue.
This sort of question really speaks to why it is so important to have a MPN Specialist on your care team who is staying up-to-date on the research. It makes a huge difference in quality of care.
You're right about my provider's max PLT. But my Dr may differ from the org. he works at. I know he's not really worried about PLT, but since my 1st treatments it's been in range by all criteria, so I've not yet had occasion to know his detailed thoughts. (started at 1000+)
Regards platelet counts.
My local haematology hospital use <450. This year however, I had a consultation with an MPN Specialist who referenced <400.
I am also in CHR for the last six years on low dose hydrea. I count myself lucky.
Good luck going forward with your treatment, and thanks for all your detailed analysis.
Hi Hunter, This is indeed timely (I have yet to read it) as I got blood tests yesterday and my platelets have plummeted 100 points to 427, but my thyroid is up the spout! Will talk with nurse tomorrow but await the surgery contacting me about the thyroid results. I have no mutated genes, so if my platelets stay or drop at this level, does this mean that I don't have thrombocytosis? Or might the platelet results and the thyroid results be linked?
If I recall correctly you have been diagnosed with MDS/MPN overlap. Also with thyroid and other issues. You present as a complex interesting patient. Don't you wish you were boring? I sure do! My goal is to be "The World's Most Boring Patient." Alas, I have been told "The ship has already sailed on that goal."
The body is an integrated system in which one things can affect another. Even when we have "unrelated" conditions, they can still impact and interact. Sometimes there is overlap in symptoms. Sometimes one condition can exacerbate another. Sometimes the conditions consuse the clinical picture. My default answer is to always look for how conditions are linked. Even completely separate issues are occuring in the same closed system, your body.
I have not looked at thyroid issues much as this is not an issue for me. I did a quick search and found some articles that may be of interest to you. I have no idea what your specific situation is and whether this information is relevant. The short answer is that some thyroid issues can affect platelets.
"In unadjusted analyses, an increase in the serum levels of T4 or T3 was associated with a significant increase in the platelet count and MPV (all p-values < 0.05). In contrast, an increase in serum TSH level was associated with a significant decrease in the platelet count (p-value = 0.05) but had no effect on MPV. "
ncbi.nlm.nih.gov/pmc/articl....
Patients with subclinical hypothyroidism had higher mean platelet volume (MPV) and platelet distribution width (PDW) values than control group, which were statistically significant (p<0.001 and p<0.001), respectively.
pubmed.ncbi.nlm.nih.gov/192...
Please let us know what you learn about this issue. Your experience and knowledge can benefit everyone on the forum.
All the best.
Thanks Hunter! This is a great source of easy to understand information from My MPN Team. I’ve read and digested the main dialogue and will listen to the video. I’ve also read with interest the explanation of ET, the details of which are never discussed with our Haematologists when we are diagnosed. Kind regards, Fran
Thank you Hunter. Update on my Hubby. He is 85, ET, CALR with Platelets up to 950 before being diagnosed June 2022. Platelets came down to 500+ on HU but as I reported here, terrible side affects after 6 weeks. HU stopped and fever, rigors, chills, confusion, extreme fatigue all stopped. His Heme started talking about Besremi. I researched and followed stories on VOICE and we just met with Heme on Monday and have a new plan. (Platelets went back up to 787 and this week 700)Our PLAN: Just like they were talking on the website/link you gave; Watch and Wait approach. On a baby aspirin daily, weekly CBC's and f/u with Heme as needed. His biggest risk factor is his age. BP, Cholesterol and weight undercontrol. He exercises regularly. Eats a mostly organic diet and he has No symptoms (except high platelets). He feels a little tired late in the day but that could just be his age. No headaches, pain and sleeps well.
His Heme suggested cytoreduction but said it was my husband's choice and the Doc would support him in doing whatever he wanted.
I had read some other articles that talked about similar treatment protocols but was so happy to see the video and article supporting our decision. And the Doc was from Moffit Cancer center in Tampa Florida which is where our Hematologist trained
Thank so much again. I love reading your blogs. Will keep you posted on his progress.
I think that sounds like a very reasonable plan. It is great that you have a hematologist who is willing to work in such a patient-centered fashion. Given what you report, it is just as important to monitor for hemorrhage (excessive bleeding/bruising) when his PLT levels get higher. My own experience was that when my PLT got above 800K. I tended to experience some hemorrhage, especially when on aspirin. It is also important to monitor for microvascular and secondary/constitutional symptoms.
If your husband does decide t opt for cytoreduction, then the hematologist likely has a good suggestion. The interferons are the other first-line choice for ET. I started on Pegasys in May 2021. Switched to Besremi in February 2022. My quality of life has improved significantly. My only regret is that I waited as long as I did to start on the IFNs.
Do please stay in touch and keep us posted on his progress. All the best to you both.
Thank you Hunter for sharing the article on Platelets!!
I can’t get the video to play.😞
Some security software will block the autoplay. May need to override/permit.
Not what you're looking for?
You may also like...
What is the Importance of Platelet Counts in MPNs
From our friends ay MyMPNTeam. The interview with Dr. Kuykendall is informative and easily...
Fluctuating Platelet Counts
Hello everyone. I hope everyone is feeling well today.
I am in the beginning stages of being...
Itching & MPNs
From our friends at MyMPNTeam. A nice and quick piece on itching with MPNs.
Yes, it occurs...
Understanding jump in platelet levels
Advice Please!
After two years of PV being managed with venesections and aspirin, I moved into the...
ET but with falling platelet counts
Hi All,
I went for my annual blood test and found my platelet count had fallen from 800 to 250. Doc...
Found this in my other support group. Hope you can open it:
MPNs and MPN Voice featured in The Telegraph Newspaper
Mpns info
DO MPNs RUN IN FAMILIES?
