Possible Polycythemia Tinnitus, Dizziness, Headache, Fatigue

Posted by angelbeville @angelbeville, Feb 7, 2023

Hi all,

CBC 3 months ago showed high RBC, Hemoglobin, Hematocrit, & Lymphocytes. Repeated tests came back similar, blood smear sent to pathologist was “negative”, whatever that means.

Follow up CBC last week showed levels have increased:

RBC 5.3
Hemoglobin 16.6
Hematocrit 48.5
Lymphs 4.7

I’ve had a constant headache and tinnitus for 3 months. In addition, for the past 7 days, I am dizzy, fatigued, and have difficulty concentrating. My CRNP stated she did not believe my head issues had anything to do with thick blood. At my insistence, however, she discussed with the MD who came in and told me it could be PV and referred me to a hematologist/oncologist for further tests. That appointment is not for 3 weeks.

Meanwhile, my symptoms persist. I work from home on a computer all day, but am finding it difficult to focus. I live alone. I am worried I should be doing something about these symptoms, but when I messaged the CRNP, she did not provide helpful advice, as she does not connect my symptoms with my CBC results.

I know I have no choice but to wait for the hematologist/oncologist appointment in 3 weeks. It would make me feel better if I knew these symptoms were connected to the “thick blood,” that I’m not crazy, and if there is anything I can do in the meantime to help me function.

I sympathize with all of you in your struggles, and am grateful for any insight.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Robyn Scherber, MD - Living with an MPN
Sept. 12, 2019 - Polycythemia Vera Disease Progression
Looked around and researched Question: Hematologist asked question "Where I was in pression of my disease" by angelbeville @angelbeville, This really help me - feel out my rare diagnosis vs Polycythemia Vera
Watch for signs;
97% Y/ N Extreme exhaustion (fatigue)
75% Y/ N Insomnia
65% Y/ N Depression
65% Y/ N Abdominal Pain/ spleen size, abdominal discomfort, bloating (feeling full)
60% Y/ N Uncontrollable itching (after hot shower)
59% Y/ N Inactive
56% Y/ N Night Sweats or Day Sweats (Feeling Hot)
53% Y/ N Dizziness and headaches
51% Y/ N Inflammation
64% Y/ N Contraction / Memory Issues (foggy)
52% Y/ N Restless leg symptoms
50% Y/ N Severe Bone Pain
48% Y/ N Breathing difficulty and Cough
47% Y/ N Craving weird foods
46% Y/ N Chewing and craving ice
46% Y/ N Acid reflux and heartburn
48% Y/ N Weight loss
40% Y/ N Fevers
39% Y/ N Pale Skin Color/ Anemia
38% Y/ N Muscles weakness or muscles soreness
37% Y/ N Chronic infections
30% Y/ N Numbness and tingling
28% Y/ N Inability to keep warm (poor iron absorption and oxygen levels).

Y/ N Headaches
Y/ N Feeling Hot/ Sweating
Y/ N Night Sweats
Y/ N Ringing in the ears
Y/ N Blurred vision or blind spots
Y./ N Dizziness or vertigo
Y/ N Reddish or purplish skin (bruising)
Y/ N Unexpected weight loss
Y/ N Bleeding or clotting
Y/ N Early feeling of fullness (satiety)
Y/ N Itching (pruritus), especially after taking a shower
Y/ N Burning and redness of the hands or feet
Y/ N Tiredness (fatigue)
Y/ N Bone pain
Y/ N Large spleen/ liver
Y/ N High Blood pressure
Y/ N Iron regulatory of weight gain or weight loss
Y/ N Anemia can cause weight gain Hemochromatosis weight lost

REPLY

I had fatigue also but I changed my job from a shift work job to just straight days helped a lot. As for thick blood I take supplements Garlic tablets, Turmeric, Vit E, and a325mg Bayer aspirin all are supposed to thin your blood. I also take Cayenne pepper capsule it is to help reduce blood clots. I had concentration issues for years I believe that was from the onset of my pv development poor sleeping habits and low O2 levels when sleeping. Praying you find answers.

REPLY
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