Newly diagnosed with “Thick Blood”. Should I be concerned?

Posted by faithgirl30 @faithgirl30, Nov 25, 2020

My primary care doctor in reviewing several years worth of lab work this past week noticed a pattern – high hematocrit, high red blood cell count and low lymphocyte count. He diagnosed me with what he called, “thick blood”. This was unfamiliar terminology for me. Should I be concerned?

I am new to Mayo, seeking help for severe, overwhelming fatigue, chronic daily headaches, and nearly 60 pounds unplanned weight loss. Should this new diagnosis regarding “thick blood” be included in the conversations I am having with Mayo doctors? I know no one on this site can diagnose, I am just trying to decide on the list of things we are concerned about right now where to place this new observation about my health. Thoughts about the term “thick blood”?

Maybe a higher Platelet count could be considered "thick blood" – I have a higher count and was told to take an low dose aspirin daily – I take it at night. Best wishes for getting answers to help you understand your issues. Blessings.

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Hi @faithgirl30, we meet again. 🙂
When your doctor diagnosed you with "thick blood," I wonder if he or she may be referring to polycythemia vera (https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850)? It is sometimes called thick blood disease and is associated with some of the symptoms you mention. I strongly recommend that these findings from your primary care physician be shared with your Mayo doctors. You may not have polycythemia vera, but it is worth a discussion.

Here's more in depth information from NORD https://rarediseases.org/rare-diseases/polycythemia-vera/
For your situation, I think these points are important to note:
"The symptoms of polycythemia vera usually develop slowly over many years. Often, the disorder is found incidentally on a blood test as part of a routine exam before noticeable symptoms occur. Occasionally, affected individuals may report vague, nonspecific symptoms that eventually lead to diagnosis of the disorder. … Eventually, affected individuals may develop fatigue, fever, frequent infections, pale skin, night sweats and unexplained weight loss."

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@colleenyoung thank you for this really helpful information. It does does sound like my doctor may have been referring to this, and it’s at least worth asking more questions and making sure the lab work he was looking at gets before the Mayo doctors for discussion. Even if I don’t have PV, it would be nice to know if abnormally high levels of red blood cells and a high hematocrit might turn into something like Polycythemia Vera later, and if there is anything we can do to prevent this.

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@faithgirl30

@colleenyoung thank you for this really helpful information. It does does sound like my doctor may have been referring to this, and it’s at least worth asking more questions and making sure the lab work he was looking at gets before the Mayo doctors for discussion. Even if I don’t have PV, it would be nice to know if abnormally high levels of red blood cells and a high hematocrit might turn into something like Polycythemia Vera later, and if there is anything we can do to prevent this.

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Hello @faithgirl30 I am a volunteer mentor here at Connect and am impressed at how well you are wading through this crazy medical experience. It seems like you have received adequate information and support for the moment. Good luck with upcoming appointment and preparation. It was such a positive to know how well you are preparing for this appointment. I would like to add one thought that has been sometimes overlooked as people prepare. It is normal for us to try to make decisions about what the doctors need or want to hear. I suggest organizing history as you are doing, then put it out there for the doctors to make that decision. They are very good at asking questions that might eventually draw that information out. But giving it to them as they form their thoughts and questions can be very helpful. I hope that you get back to us as you can be helpful to others on this pathway.
Peace, Nancy

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@Nancy. Thank you for this affirming comment. However, I wanted to add one correction. I don’t actually have any upcoming appointments. I met 10 days ago with an endocrinologist at the Mayo Clinic in Scottsdale for about 20 minutes and no she didn’t ask a wide array of questions. Instead, it was one of the most disappointing experiences I’ve ever add. Her bottom line was, “I don’t think you problem is endocrine. I don’t know what’s wrong with you I just don’t think it’s related to anything I treat.” There has been no recommendation for follow up by any one else at Mayo, so everything you’ve read is for appointments that don’t yet exist. It’s mostly me trying to work things out on my own, and trying to figure out where to turn next.

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Oops. Just realized I got the wrong name @1nan (see note posted above in response to your comment). Thanks, however for your generous response.

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My husband has been diagnosed with Multiple Myeloma and so many of the symptoms are similar to yours. Please follow up with an oncologist. They will be happy to dismiss you if it is not a cancer diagnosis. Wish you well.

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@pghparrothead

My husband has been diagnosed with Multiple Myeloma and so many of the symptoms are similar to yours. Please follow up with an oncologist. They will be happy to dismiss you if it is not a cancer diagnosis. Wish you well.

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@pghparrothead, welcome. You're advice to @faithgirl30 is wise. "They will be happy to dismiss you if it is not a cancer diagnosis."

There are several members in the group talking about multiple myeloma. You may be interested in joining these discussions:
– Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/
– Tear Drop Cells and Ovalocytes: Anyone had these in lab reports? https://connect.mayoclinic.org/discussion/1nan/
– Mobility during multiple myeloma treatment https://connect.mayoclinic.org/discussion/mobility-during-multiple-myeloma-treatment/
– Multiple Myeloma: Not a candidate for chemo, what's next? https://connect.mayoclinic.org/discussion/multiple-myaloma/

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@pghparrothead

My husband has been diagnosed with Multiple Myeloma and so many of the symptoms are similar to yours. Please follow up with an oncologist. They will be happy to dismiss you if it is not a cancer diagnosis. Wish you well.

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@pghparrothead thank you for this helpful suggestion. I have wondered about this but don’t know enough, so the threads will be helpful reads as well. I am meeting with a hematologist in January who reviewed my recent lab work and has asked me to come in to discuss his observations. I am eager to hear what he has to say. If that is a dead end, I will pursue an oncology referral. I am grateful to the other patients, family members, and moderators on Connect for the way they offer their wisdom and personal experience to the benefit of others. Thank you!

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