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JAK2 negative with high platelets
Heart & Blood Health | Last Active: Aug 18, 2023 | Replies (13)Comment receiving replies
Hi all. I’m a 60 y/o female. I have had consistently above normal RBC, HCT, and. hemoglobin for at least 10 years. I saw a hematologist in 2011 who sent me for a sleep study and never saw me again. I started seeing a different Dr this past January because my HCT was 59.8%. Note that since diagnosis I’ve read everything I can get my hands on regarding polycythemia/erythrocytosis and have had at one time or another every symptom listed (and have been to various specialist to resolves some of these symptoms to no avail). After 5 phlebotomies my HCT is at 46.9% but my WBC is raising to nearly above normal. Since my JAK2 test was negative, lowering HCT to <48% is the doctor’s only focus. He will do no more testing—arterial O2, EPO, BMB—even though I have no history of cardiac or pulmonary disease. As long as my HCT is below the magic 48%, no more phlebotomist. He says my complaints of itching can’t be due to blood counts since I not only itch after bathing, but also at bedtime. He says my fatigue, shortness of breath, bleeding gums, and headaches aren’t symptoms of polycythemia. I don’t even have a follow up with him until the end of May! Basically he’s leaving me on my own.
I’ve had my records sent to Mayo Clinic to see if they are willing to see me. I haven’t heard back yet and I have no idea how long it will be before I do hear back. I’m terrified that they’ll say no because I have no where else to turn. There are no MPN specialists in my state. The hematologist I’m seeing now is the head of the Hem/Onc department at the hospital here.
In the meantime, does anyone have any suggestions on what I should do? How do I advocate for myself when my Dr won’t even see me? I’m especially worried because this has been going on as long as it has without treatment. I have no idea what it means for my WBC to suddenly jump up. Quite frankly, I’m feeling so lost right now.
Replies to "Hi all. I’m a 60 y/o female. I have had consistently above normal RBC, HCT, and...."
My hct has been high for 5 years finally after my ocular migraine I insisted on seeing a hematologist. The weird thing is I started taking black seed oil and astazanthin and my HGB went down and my mpv.
It took me several days, but finally found good questions for my PV and Myelofibrosis (9 different rare diseases.)
My doctor wanted to talk about my symptoms LOL! Every one experiences symptoms, mine symptoms overlap each other and it's hard to tell what is what? I hope I don't get in trouble with cope right law.
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
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)
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 or Joint 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).
35% Y/ N Overlapping symptoms of other Medical conditions
Weight Mass:
(Normal weight = less symptoms) Lower/ Higher weightmass = more symptoms
Woman will have more symptoms than men
56% Men are diagnosed with PV then woman
Yoga and Mediation (less sweating and less painful then excise)
Recommended Diets: Anti-inflammatory food list
Severe symptoms shows disease progression
Overproduction of blood will produce produces more symptoms
Stress symptoms interfere with PV symptoms
PV suffers should avoid extreme heat, and protect yourself from the sun. Drink plenty of liquids. Avoid hot tubs, heated whirlpools, or hot baths of any type. Also, tanning beds, sun lamps, and heat lamps can damage your skin PV suffers, guard against trauma or situations where you may be at high risk of injury, such as during sports or strenuous activities. Make sure that there is sunscreen and protective hat which can be available at any time and in arm reach. Keep cool.
In the same boat. JAK2 negative. Now what? My stress and worry are getting the best of me. I don't go back to hemotologist until 7/11/23 - but my numbers swing like crazy - HGB, HCT always high, with yo-yo WBC. Ear ringing and dizzy are most irritating, then the exhaustion and day sweating - I don't at night, or at least I don't think I do. What could possibly be next? I assume she will be looking for a secondary cause. What should I expect?
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Hi @trillium, while many patients with polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF) have the JAK2 mutation, it is possible to by JAK2 negative with PV or ET. Read more in this article:
- Discovery Of A New Mutation In JAK2V617F Negative Myelofibrosis Patients http://www.mpnresearchfoundation.org/Discovery-of-a-new-mutation-in-JAK2V617F-negative-myelofibrosis-patients
I'd like to also bring fellow members @mgrimes5 @thlas1971 @scsimpson @caroldk @jeffc4365 @gjb1 who also have a myeloproliferative neoplasm (MPN) but are JAK2 negative. Read more in this discussion for example:
- Polycythemia Vera https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
According to Mayo Clinic's explanation of PV, the symptoms you're experiencing align. https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
I can imagine your feel lost right now. It takes so much to have to advocate for yourself, but I believe that's what you're going to have to do. And you've already begun by contacting Mayo Clinic. You can always call Mayo Clinic to ask about the review of your records. Have you tried following up?