Hi everyone, first time writing and really blown away with the helpful insight I've found here - thank you!
I'm 32 years old and in February of last year I had a full blood panel and my platelets were almost at 1mil.
I was referred to a hematologist in Denver and had a BMB done in April. Everything was negative as far as jak2 - and the results showed an iron deficiency in the bone marrow.
I had 2 iron infusions 2 weeks apart and my platelets came down to 690 in July. The only thing I was instructed to do was take baby aspirin and a iron pills after.
In October my platelets jumped back up to almost a million and CrossFit was ruled in as being a factor in the high platelets - so I quit cold turkey for 6 weeks but just found out they are still in the 800's.
My WBC and NEU #ANC have doubled since July as well ( still within range but as high as it can go) which indicates an infection but my new hem also doesn't seem to know what.
I would like to get yet another opinion as my best appointment isn't for 4 months- or should I just trust the process? I have a lot of health related anxiety over this unknown of " nothing being wrong in the moment" but would hate to be a ticking time bomb.
Thanks for any insight on your own experience!!!
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Ashweisel
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Hi, Ashweisel, and welcome. I certainly understand your frustration and anxiety. It never hurts to get a second opinion. Having platelets that high is definitely not normal. I was diagnosed with ET Jak 2 in 2008 at age 52, which morphed into MF about 2 years ago. I was also reluctant to change doctors, but because of this site, I found an mpn specialist and she has made all the difference in the world to me. So my advice is, yes, don’t wait.
Thank you SO much for your reply- it means so much. Im for sure not someone to sit around and wait so thank you for validating the second opinion and will look into an MPN specialist in my area!
Maybe if you are interested a well qualified alternative practitioner could be helpfull. Ayurveda uses pulse to see what’s going on plus other things like colour of tongue etc . X
Thank you so much!! My best friend is from Surrey ( sp?) Outside London and she is a homeopath- very helpful from the holistic side and will continue options here too but great call on anti inflammatory foods!!
hello Ashweisel, and welcome to our forum. Completely understand how you are feeling at not really knowing why your fluctuating blood counts, perhaps you could ask for your appointment to be brought forward and explain to the doctor that you are anxious about these changes and don't really want to wait another 4 months to find out why this is happening and if you need any further tests. Best wishes, Maz
Hey thank you so much! Yes I trust my current doctor more than the first one I had with the original tests ( she didn't explain anything) and he walked me through why he thought she did what she did . I am calling today for a second opinion and will post here with the journey I so appreciate everyone here! Beautiful community ❤️
Hi Ashiweisel, welcome to the forum. I am 34 and diagnosed as triple negative ET a month ago. I saw my local hematologist in RCCA (Region Cancer Care Associates) and an MPN specialist in MSKCC (Memorial Sloan Kettering Cancer Center). Both doctors are great.
I totally agree with other folks. If possible please get a second opinion from an MPN specialist. It’s worth to learn their thoughts on the BMB pathology slides. Also did you test for other driver mutations aside from JAK2? Molecular study is a key in MPN treatment and prognosis. This can be done by blood draw.
Hey thanks so much- when you say triple negative do you mean that something wasn't caught 3 times or are you ok? I believe they tested for everything with my BMB - and everything else is clear. My current doc didn't believe another biopsy was in the cards for now but I will see what they say when I get another opinion!! I'll keep you updated so appreciate it!!
Sorry for the confusion... There are three KNOWN driver mutations for ET: JAK2, CARL and MPL. There is a small portion (<20%) of patients who don't have any of these driver mutations and they are called triple negative ET patients. It is a term borrowed from breast cancer. For the triple negative patients, it is either the gene mutation is not discovered yet, or one of the three known mutations it not captured by the test yet. If your BMB doesn't suggest ET, you could have a second option from an MPN specialist who can re-interpret the same BMB pathology slides since it was done not long ago.
I will agree with all the others and say definitely get a second opinion from a MPN Specialist. Do not wait. Here is a link mpnforum.com/list-hem./ .
You noted that you are JAK2 negative. Did they also check CALR and MPL - the other two identified MPN driver mutations? Did your doc consider a full Myeloid Panel such as The IntelliGEN panel? (Note this panel is just one option)
Thank you so much I will absolutely ask these questions and scheduling my second opinion with a university hospital this week. I appreciate this do much .
Sorry I just realized I didn't answer your question. I believe I had a full panel evaluation when I had the BMB and all of my other levels are normal except the rising wbc and neu anc. I have had 3 doctors who all agree that they can't figure out why the levels are so high. I do have a lot of stress in my life too ( my husband is a cop and I worry a lot) and I know stress also has an affect on platelets. ) But still going to keep fighting for answers as I don't think that would be the only cause.
Just thinking high platelets definitely can occur if you have a bacterial infection. My husband had very high platelets when he had E. coli. Then when better they returned to normal. Halved in 2 weeks!
Don’t know about other bloods but worth looking into maybe ? You don’t always get symptoms . Xx
Dr Srdan Verstovsek at MD Anderson in Houston is pretty amazing and a serious expert in MPNs - 713 563 2018. There's also Dr Ruben Mesa in San Antonio, another trusted MPN expert not too far away.
Hello my dear l empathise with your situation and lm real impressed by your tenacity and knowledge about your body. I also have a nerd to know as much as l can about my ET condition and have had to let go of some of my need to know what's going on and what's happening to me. For me the challenge is about trust something l am having to re-learn. Anyway lm sending you positive energy and good luck.Best wishes.
I hope you have found some answers by now. I had strange symptoms for six months and saw five doctors and two natural Paths before finding a diagnosis and getting treatment. My platelets rose from above normal i.e. 700's to about 1,362,000. By then I was falling down and the fatigue was overwhelming along with other weird symptoms. The hematologist did find the JAK2 mutation, but about 50% can have Essential Thromboycytosis and not have the gene. Keep pursuing unless by now you have found an answer. You are you're own best friend and advocate.
Hey thank you so much for checking in! Yes! My platelets went back down into the high 600's - there are no other indicators except for stress at the moment. Thankfully it is a good resting point for now but I am due back in 6 months just to be sure! Again it means a lot and I wish you the best in your journey as well!
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