Elevated Platelet Count With Extreme Fatigue

Posted by kbrown613 @kbrown613, Mar 7 6:01pm

Hi,
I’ve been diagnosed with high platelets, but not Thrombocytosis. They have bounced around from 460-580’s for the past two years. My GP caught this and have been keeping an eye on them until last year when I was referred to an oncologist. They ran all the tests, no gene mutation, iron was on the low side of normal, ferritin also on the low side of normal, and no autoimmune flags. I have a very physical job, so my inflammation is always higher than normal. I told him I’m bruising very easily, getting daily headaches, and have severe fatigue.. He basically said I’m fine and to come back in a year.

I decided to get a second opinion. I was put on iron supplements which did not work, so I had two iron transfusions. Numbers are normal now, but I’m still super fatigued. My GP said I should have been bouncing off the walls after both transfusions, but I went home to nap. So, she ran more tests. Spleen is normal, abdominal ultrasounds are normal, and sleep apnea test was normal. No one can figure out where my fatigue is coming from.

The fatigue is so bad that I’m napping on my days off, nodding off while sitting at a computer, in the shower, and during meetings. My family lives in another state, and I can no longer drive home because it’s so hard to stay awake while driving.

I’ve tried everything. My body feels so heavy and drained. I contacted my hematologist and she said she doesn’t believe it’s blood related. I’m at a complete loss on what to do next. I don’t want to create something that isn’t there, but I’m having a hard time coping. Has anyone else experienced this type of fatigue, and has anything helped. Any information is greatly appreciated.

~Kelli

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eloise999 | @eloise999 | Mar 8 8:20am

It can be difficult to get a diagnosis. Have you been checked for narcolepsy? Did you have a bone marrow biopsy? I have ET but I am triple negative. I lack the 3 known driver bone marrow stem cell mutations. Keep at your doctors to evaluate your situation.

janemc | @janemc | Mar 8 9:03am

I'm so sorry for what you're experiencing, Kelli.

Fatigue and headaches are classic symptoms of MPNs such as ET . . . which, as eloise999 points out, can occur without any of the three "driver" mutations.

Has any treatment been suggested for reducing your platelet count?

kbrown613 | @kbrown613 | Mar 8 9:14am

In reply to @eloise999 "It can be difficult to get a diagnosis. Have you been checked for narcolepsy? Did you..." + (show)

@eloise999

I have not had a bone marrow biopsy. I haven’t been tested for narcolepsy. Other than being tired on a normal basis, the extreme fatigue I feel isn’t constant. It comes and goes. I will ask my doctor though. Thank you!

kbrown613 | @kbrown613 | Mar 8 9:24am

In reply to @janemc "I'm so sorry for what you're experiencing, Kelli. Fatigue and headaches are classic symptoms of MPNs..." + (show)

@janemc
Doctors don’t seemed concerned about the level of my platelets. I really want someone to sit down and explain what is going on. Neither doctor has mentioned MPNs or any gene mutations to me. Everything I’ve learned is from the internet. Which we all know is all over the place. Thank you so much for your response. It’s nice to know others know what I’m going through.

nohrt4me (Jean) | @nohrt4me | Mar 8 11:34am

Do you have a firm diagnosis? Sounds like the oncology tests were inconclusive, no genetic markers for ET or another MPN, just elevated platelets. A bone marrow biopsy might be the next step in getting to the bottom of this. If you have ET, the bone marrow biopsy would show some misshapen megakaryocyte (cells) in the bone marrow. Fatigue is part of ET and other MPNs, but it is also a symptom if many other ailments. So a good diagnosis is important. Best of luck!

janemc | @janemc | Mar 8 12:07pm

While your platelet count isn't astronomical, Kelli, it's been well above normal for two years. In my opinion, your doctors shouldn't be disregarding it.

Could you ask your hematologist for a referral to an MPN specialist? Although they are blood specialists, what ordinary hematologists don't know about MPNs is shocking.

As nohrt4me says, a bone marrow biopsy could yield essential answers.

It's awful to be a medical mystery, especially since doctors tend to dismiss problems they can't figure out.

You know there's something wrong. Debilitated by headaches and fatigues, still I let a doctor gaslight me for two years. Finally I demanded a referral to an oncologist, who diagnosed my ET right away.

Be braver than I was!

1pearl | @1pearl | Mar 8 1:45pm

Hi Kelli,

I have no fatigue, but high platelets and saw general hematologist/oncologist who diagnosed me with essential throbscytosis 1/2025 which she changed to primary myelofibrosis 2/2025. I do have CAL1 gene mutation, no enlarged spleen, and no symptoms. I changed my insurance 1/2026 and asked to see a MPN specialist as it does seem like I have some type of blood cancer. I did lab and again my platelets are high as usual. I do take low dose aspirin. I will call on my referral to verify that I would be seeing a MPN specialist through UCSD. I do agree that is the best type to see as general type really does not know much about it as rare.

kbrown613 | @kbrown613 | Mar 8 6:18pm

In reply to @janemc "While your platelet count isn't astronomical, Kelli, it's been well above normal for two years. In..." + (show)

@janemc
Thank you! I will ask about a MPN specialist. The only doctor I have in my corner is my GP. She’s amazing. She’s actually the one who has requested all blood testing, abdominal ultrasounds, and sleep study test. I’ll talk to her about the specialist.

kbrown613 | @kbrown613 | Mar 8 6:25pm

In reply to @nohrt4me "Do you have a firm diagnosis? Sounds like the oncology tests were inconclusive, no genetic markers..." + (show)

@nohrt4me
Thank you! I do not have a firm diagnosis. My hematologist/oncologist mentioned a bone marrow biopsy last year, but said to try iron supplements/iron infusions and come back in a year. But, janemc mentioned a MPN specialist. I’m going to look into that!

janemc | @janemc | Mar 9 7:15am

Platelet production can be stimulated by extreme blood loss (as from an injury); heavy drinking; or anemia. This is "secondary" ET. Trying the iron supplements/infusions was to rule out anemia as the cause for your high platelet count.

With the blood cancers, one of the three proteins (JAK, CAL, MPL) that govern platelet production goes wonky, pushing the bone marrow into manic over-production mode. Or the platelet count soars even though all those proteins remain normal ("triple negative ET"). This is "primary" or "essential" ET.

Analysis of our blood can reveal whether those proteins have mutated, but a bone marrow biopsy provides the most complete information about what's going on.

I do want to give emphasis to nohrt4me's comment that headaches and fatigue are not unique to MPNs.

Your problem could be something else entirely. But to me your high platelet count is worthy of investigation.

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