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  #1  
Old Tue Aug 5, 2014, 05:18 PM
Watsonmom Watsonmom is offline
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Elevated Platelets for 3 years?

I have had elevated platelets for 3 years now. Followed by a hematologist this whole time, the highest being only around 600, but never in the normal range. I've done the bone marrow biopsy, all the blood tests known & no explanation to why it continues. Today I went for my routine visit, my platelets were 500 & my MPV was 6.4, which is low. My MPV has been a little low in the past as well. My doctor said if at my next appt. my platelet count is as high we will do another bone marrow biopsy(it has been 3 years).
Does anyone have any insight or had anything similar to this?
I take a baby aspirin daily & that all. It's a little frustrating not having answers although I know this count is nothing compared to others counts, I just don't want to be missing something?
Thanks in advance.
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  #2  
Old Tue Aug 5, 2014, 08:03 PM
Whizbang Whizbang is offline
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There are many (possible) reasons for high platelets (Thrombocytosis), one of which can be celiac disease... (Gluten intolerance)...

Link to possible causes:
http://www.mayoclinic.org/diseases-c...s/con-20032674

If your blood count is above 500,000, your doctor will likely look for an underlying condition. In most cases, signs and symptoms of the underlying condition help guide the diagnosis. Your doctor may also:
•Check the level of iron in your blood
•Test for markers of inflammation
•Order genetic testing to help determine if you have a blood and bone marrow disorder
•Conduct a bone marrow aspiration and biopsy to collect and examine bone marrow tissue


If you have thrombocytosis, making healthy lifestyle choices can help reduce your risk of complications. These choices include:
•If you smoke or use other tobacco products, quit.
•Avoid secondhand smoke.
•Manage other health conditions you might have, including high blood pressure, high cholesterol and diabetes.
•Avoid over-the-counter pain medications, with the exception of acetaminophen (Tylenol, others). Keep in mind that some cold medications may also contain pain medications, so read the labels carefully and talk to your doctor before taking any over-the-counter pain medications.
•If you take blood-thinning medications to manage thrombocytosis, tell your doctor or dentist before having any procedures done. These medications can increase your risk of bleeding during the procedure.
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #3  
Old Wed Aug 6, 2014, 04:51 PM
Watsonmom Watsonmom is offline
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Yes, I've done all the testing, genetic testing, bone marrow biopsy, platelet aggregate studies, testing for inflammation, JAK2 negative & yet I still have thrombocytosis for 4 years now without explation. My hematologist now wants to do another bone marrow biopsy in 6 weeks if I am still around 500, I range from 450-600 on average. I know that bone marrow can change & that it does take a long time.
I am 42, a mom of 3, active, non-smoker, no other health issues except for migraines. Great BP, cholesterol, & blood sugar.
Just wondering what we might be missing? Tired of not knowing.....
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  #4  
Old Thu Aug 7, 2014, 03:43 AM
Cheryl C Cheryl C is offline
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Hi Watsonmom - have you seen http://www.healthgrades.com/symptoms/high-platelets This website gives you a lot of information and warning signs for high platelets. Sounds like your headaches could be associated with the platelet problem. All the best as you look for solutions!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #5  
Old Thu Aug 7, 2014, 11:27 AM
Marlene Marlene is offline
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It would be worthwhile, if you haven't tried this already, to go gluten free for 3 months. The celiac/gluten tests are not that accurate and the only way to know is to test this out on your own to see how feel and how your counts respond.
Wheat/gluten and sugar cause inflammation and may be a contributing factor.

Just a suggestion...
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Aug 7, 2014, 11:34 AM
Whizbang Whizbang is offline
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I agree, it's relatively easy to do, and I did so for a few months before my BMT, and felt great all my counts started normalizing even before chemo...

Rice Krispies and/or oatmeal for breakfast, and gluten free tortillas with lunch...

My sister has celiac disease, so I figured I'd give it a try...

All the Best, and may God Bless us ALL...

Quote:
Originally Posted by Marlene View Post
It would be worthwhile, if you haven't tried this already, to go gluten free for 3 months. The celiac/gluten tests are not that accurate and the only way to know is to test this out on your own to see how feel and how your counts respond.
Wheat/gluten and sugar cause inflammation and may be a contributing factor.

Just a suggestion...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #7  
Old Thu Aug 7, 2014, 11:41 AM
Hopeful Hopeful is offline
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My sister has Essential Thrombocythemia (ET) with no JAK2 mutation. She has been using medications for 25+ years to keep her platelets down at normal levels without complications. Have you sought out a second opinion to explore treatment options?
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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