I have been reading random posts on MPN voice but have not posted yet. So, this is my first post.
Here goes.
I always go for regular checkups with my Primary doctor. Starting in early 2021 my doctor told me that he was a little concerned about my platelet count. For about 9 months he was testing me and found platelet count was on the high side but not very alarming as they would range between 500 and 600. I didn't think about it then, but I received my first and second covid vaccines right around the same time the platelets started to elevate. My first covid vaccine was in February 2021 and the second vaccine a month later in March 2021.
By the end of 2021 on my last doctor visit of the year in November, my platelet count was still in the 500-600 range.
In December 2021 I received my first Booster shot. By the way all vaccines were Moderna.
So, I go to my doctor in late January of 2022 for another blood test. Now my platelet count shoots up to 1 million. My doctor tells me to start a baby aspirin everyday immediately. He also referred me to a Hematologist.
I go to my first doctor visit with Hematologist in February 2022. He does complete blood work and tells me that my blood in all ranges are perfect. RBC, WBC, and everything else is fine except platelets. My platelets were 1006 at that visit. This specialist did not want to treat me at this point, so he was monitoring me once per month for the next 3 months. In those 3 months the platelets were stable at 900k-1 million.
Next step was a bone marrow biopsy which I had done in May 2022. The lab comes back with no Gene mutations, but they stated they see some scaring in the marrow. The lab has not said I have ET, nor Myelofibrosis. The lab stated that they were leaning towards Myelofibrosis but did not 100% confirm this or ET for that matter.
Now my Hematologist throws his hands in the air and tells me I don't know for sure. He refers me to another specialist that is very good in this area. I appreciated that he referred me to this new specialist because he also wanted another opinion. He stated I have a very rare case.
I took his advice and made appointment with the new specialist. This doctor took my biopsy and sent it out to another lab for comparison with the first lab. Well, the second lab had exactly the same remarks as the first lab.
The new specialist said I have a rare case. He called it a triple negative which means there is no driver, no mutated Genes causing this to happen. I asked him, what does this mean for me.
He told me I will not treat you at this point, just monitor the condition every month. So, I went back in a month and platelets were still about 1 million. He ordered an ultrasound to check my spleen, liver, kidneys, pancreas, and stomach. Everything came back normal thank God from that test.
Now my next visit a month later my platelet count goes to 1.3 million. All other blood results are good. He suggested to start me on Hydroxyurea at 1000 mg per day. I start taking the pills and after 2 weeks of taking them I get another blood test. Platelets are now 795k. I thought in only 2 weeks that was a very fast drop. Now I am still on pills a total of one month and have another appointment in early December to re-check platelets again.
I have to be honest, I don't know what to think at this point. I do not have symptoms other than a little tired at times. Sometimes I think could any of this been tied to the vaccine shots?
I guess anything is possible since there has not been enough time to study this vaccine or any effects it could cause. When I ask all 3 doctors that question, they all reply I don't know, it is all to new yet. I guess that would be the best response to protect them from any legalities.
Well, that's it for now.
I just do not like living with a big question mark hovering over my head.
But what I have learned is, I keep living my life as normal and try not to think about it much.
Keep attitude and spirit up.
Thanks for listening....
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Director1157
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You are, indeed, a rare case of a rare disorder in having a triple-negative MPN. There is active research into the triple-negative MPN issue. Here is a bit of what is in the literature. SOme of it is a bit technical. You may find it helpful to build a base of knowledge to really understand it.
The good news is that you can count on having plenty of time to learn about MPN at your own pace and to the depth you wish to learn it.
Given your age and level of thrombocytosis, cytoreduction would be recommended by most docs. Hydroxyurea is one of several choices. Pegasys (or Besremi) is another first-line treatment option. Jakafi and anagrelide are potential second-line treatment options. We each resond differently to these treatment options. It is good to know that you have multiple options for treating the MPN.
Here is a bit about hydroxyurea just in case you have not seen it.
I also appreciate the links you have provided for me to browse.
I will look into them a little at a time. I am still working 10 hours a day and my time is so limited. I greatly appreciate meeting you, and I hope to learn from you and others on this site. Will talk soon. Have a great night...
That is interesting that you mention studies about the vaccine and rising platelets.
I have searched the internet and have found such studies as well. Only thing is most of them state they found a reduction in platelets. I did find three, that saw a rise in platelets.
I never went to a functional doctor. But I do know they will find root cause of the issue instead of masking and treating the symptoms. I will look into that.
good morning Iv read your story and it’s like me writing my story I’m convinced jabs had something to do with my result. Triple negative essential thrombycemia. It’s amazing how much we have all n common I was only diagnosed in august this year after BMB was done good luck on your journey I’m on on hydroxycarbamide and clopidogrel blood thinner as I’m asthmatic and I’m 68
I recollect some members have noted temporary elevated counts after the Covid shots; I did not. I had the AstraZeneca and Pfizer shots though.
The positives are, it seems as though you have an excellent care team behind you. You have also responded well to hydrea. It will be interesting to see what your counts are in early December. With close monitoring your hydrea dose will be titrated accordingly.
Take time out to do some research - always from reputable sources. Check out all of the drug options available to you. Just because you’re on hydrea now doesn’t mean you have to stay on this particular cytoreductive therapy. I have been on hydrea for six years, it works well for me; however, many choose the interferons for their potential to induce a deeper molecular response. This is something you can discuss further with your team.
I am very interested in my blood work coming this December as well.
I have no medical experience, but I do have expertise in diagnosing problems in my line of work. So needless to say, I have been trying to diagnose myself. I have done quite a bit of research before I joined here. In my heart I do not think the vaccine caused this, but I do think it had an effect on accelerating it. That are just my thoughts but could be very wrong.
Thank you for asking. I am good. I have to go for follow up blood test first week in December and I will bet platelets are even lower. I say this because of the way I feel. I feel better and normal again. Have energy and not light headed. I hope this continues. I pray to God it does. I hope you are doing well also.
On PLT levels from the vax, you're right a reduced level is most prominent in a search.
From a quick look, the Moderna/Pfizer type (mRNA) seems less associated to low PLT than the AZ and J&J types (adenovirus) In fact this "Vaccine-induced immune thrombotic thrombocytopenia (VITT)" is one reason the AZ, JJ are no longer offered.
But there is a separate issue of "platelet activation" from vaxes that does not affect PLT levels but rather PLT function after vax. This should not change the PLT results as we see them.
My take is a very high 1 million+ PLT is not likely to be from the Moderna vax, but nothing is 100%.
On your BMB did you get detailed results? Or just Dr's summary?
Also did they give you NextGen Sequencing? This looks for mutations beyond the main three that you don't have (Jak2, CALR, MPL) There is not a lot to do with this info yet, but it will very likely be useful info in the future. Triple Negative can have the "non-driver" mutations that may be found this way.
Your PLT drop is similar to what I experienced in that time. The decrease rate should slow down later.
I've had all the covid and flu vaxes. But I am now dealing with a botched flu vax, you can see my post. Lesson is be sure the caregiver uses the right needle and puts it in the right place, I never gave it any thought before.
To answer your question as best I can, yes I did get detailed results. Bioreference labs sent the detailed results to me before my doctor got them. If I remember correctly, they checked the 3 common genes you have mentioned but a lot of others. Thirty-two genes to be exact and found no mutations in any of them. In the lab test they stated no mutations in any genes. Blood work was very good. About the bone marrow they said they see slight scarring. They did not confirm on ET or MF. They said favoring MF.
Yes, the vaccines here are as follows, first shot and second shot are one month apart. First booster starts 6 months after second regular shot. Then booster every 6 months.
You have shown that the 2 month apart reacted with a steep hike of your blood platelets.
We hava Pzfier here but from January as some requested others were introduced.
I'm staying on same throughout.
I'm ringing to find out if the 5 January one will be available as I go tottering off in my camper and explore and escape my village.
I'm looking for No. 5 or booster 3 but they are all the same.
I will enquire if I can have an innunity test.
cheri JOY
Earlier when my ex was in hospital it got to 2nd week end and no diagnosis. Then forever waiting he immerged. He told me his trouble in there. I asked have you told the nurse. No was the answer. That part was ultrasounded. Surgery next day and a potful of pus was extracted. He had a ulter at the bottom of his spine. Red corpisles high. Dignosis Strepticocci aurues? On a drip fed antibiotic for 2 months.
The lesson tell everything because that's helpful information. He was bent over walking with the pain.
hi and welcome. I’m thrilled you are now receiving treatment. I get very cross when I read ‘ we will see’ before sending to a haematologist when it is perfectly obvious your platelets are abnormal. The normal range is below 400-450. To have monthly tests and no referral is playing with fire.
So glad you are now under a specialist and that the platelets are on the way down. You are on a low dose of meds. I do hope it continues.
Yes, I will continue follow ups with specialists and regular doctor. I am the type of person if I am not getting results or if I think my specialist is dragging his/her feet then I will get another specialist. Afterall it is our choice to get medical treatment by whom we choose. It is our life they are dealing with not theirs.
I took the JJ and one week after taking it my platelets were elevated on a cbc for a routine physical. Not saying it caused it but I never showed high platelets before it. What followed were countless blood tests and a bone marrow biopsy.
Long story short, a little over a year ago I was diagnosed with ET with a calreticulin mutation (CALR). I regret taking that shot every day because I’ll never know if that was the culprit. I thought I was being smart by taking the most traditional style of vaccine (adenovirus as opposed to mRNA) but the reality is that none of these have the data to support taking them. Not to mention the covid mortality rate for my age group (38) didn’t support taking the shot either. I let the fear of dying and not being able to raise my children manipulate me into rejecting what my eyes could see.
Ultimately we can’t go back and change it, so we learn to accept it. This forum is great and there is a lot of good information and there are many knowledgeable people on here. Treatments for mpns are improving and developing all the time and hopefully in our lives we will see a cure.
I regret taking the shots also. Your story sounds just like mine. I am hearing more and more stories similar to ours lately. My reason for taking the vaccine was because in March the year before they had the vaccine my brother-in-law passed away from covid and he was only 59.
Hi, these diseases can behave in many strange ways it seems. I was diagnosed with Jak 2 ET in 2017-18. In 2021 about a month after my second pfizer vaccine, all of my blood counts shot up and my diagnosis was changed to PV. Was it related to the covid vaccine? Was I always PV and not really ET, I don't really know. I suspect there is a natural progression from ET to something else if we live long enough. I really wonder about the effects of the covid vaccine on some mpn patients. I hope you find the answers to your questions and live a long uneventful mpn life. Best.
I think with everyone uniting on these types of sites and pulling all our resources together as one, will possibly create some answers. I believe there is knowledge in unity. Large companies call it brainstorming and it does yield results. Let us all keep feeding this site with good information and maybe someday we will find the answers. I am planning to post any changes in my blood tests as time goes on and will look forward reading others doing the same. Pleasure meeting you Meatloaf. Good luck to you...
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