JAK2 Mutation, Low Iron and High Platelet count

Posted by pattitoo @pattitoo, Nov 25, 2020

I was being treated for low iron – was sent to a Oncology Hematologist- had Iron Infusions – gradually the iron values increased. Only received an infusion two times. The doctor is seeing me every 6 months, Platelets are increasing and I was told I was born with the JAK 2 Mutation apparently never surfaced ever until recently. I was a regular blood donor, and years ago I was needing iron and saw this same type of physician. For raising Platelets, eventually I will be put on a medication, he said my count must be 1.000,000 first (one million).

What in blood work determine a Jak 2 Mutation? I have not given blood since the two diagnoses. Any information of your experiences or knowledge will be appreciated.
Thank you.

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

@mjpm2406

The Exome Sequencing and Whole Exome tests are very expensive and many insurance companies won't pay for them because many genetic tests are considered "experimental". Cornell placed me in a research trial along with two of my daughters because we have a family history of neuropathy going back 5 generations. My daughters are starting to experience the same symptoms as me. But do ask. Not sure there is any connection between my blood cancer and my Axonal Neuropathy. Good luck.

Jump to this post

Do ask your Hematologist/Oncologist to run the molecular panel which looks for the most common blood mutations.

REPLY
@mjpm2406

Do ask your Hematologist/Oncologist to run the molecular panel which looks for the most common blood mutations.

Jump to this post

Sorry, but I just want to point out that if you're considering the exome sequencing tests for your neuropathy symptoms you cannot use your blood because your blood is "contaminated". You'll have to use a piece if your skin that requires a minor surgical procedure. They will use your skin sample to grow chromosomes for analyses. Takes 4 months or more. I'm already waiting 4 months.

REPLY

I would like info on EPO value and how that relates to ET and JAk 2. Can EPO value fluctuate? What are the markers for an EPO test? What treatment is recommended? What do I look at in a CBC test. ?

REPLY
@damari

I would like info on EPO value and how that relates to ET and JAk 2. Can EPO value fluctuate? What are the markers for an EPO test? What treatment is recommended? What do I look at in a CBC test. ?

Jump to this post

Actually my Dr just ordered the EPO bloodwork for me. I have MDS/MPN-RS-T with jak2 mutation. My result was 19. I don't go back to dr for a week so unsure of an explanation. I looked it up and believe it has something to do with anemia, and helps to produce red blood cells and identifies problems. Best wishes.

REPLY
@damari

I would like info on EPO value and how that relates to ET and JAk 2. Can EPO value fluctuate? What are the markers for an EPO test? What treatment is recommended? What do I look at in a CBC test. ?

Jump to this post

@damari, you may find some answers to your questions regarding erythropoietin levels and essential thrombocythemia in this paper:
– Serum erythropoietin levels in essential thrombocythemia: phenotypic and prognostic correlates https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6242882/

And this from Mayo Clinic Labs:
– Test ID: EPO Erythropoietin, Serum: https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/80173

Values differ from person to person. Have you talked with a hematologist about the values in your CBC results?

REPLY
@colleenyoung

@damari, you may find some answers to your questions regarding erythropoietin levels and essential thrombocythemia in this paper:
– Serum erythropoietin levels in essential thrombocythemia: phenotypic and prognostic correlates https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6242882/

And this from Mayo Clinic Labs:
– Test ID: EPO Erythropoietin, Serum: https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/80173

Values differ from person to person. Have you talked with a hematologist about the values in your CBC results?

Jump to this post

I was recently treated with iron supplements for low iron count. Can this affect the EPO number. My number was 2.

REPLY
@damari

I was recently treated with iron supplements for low iron count. Can this affect the EPO number. My number was 2.

Jump to this post

Damari, another good question for your oncologist or hematologist. They can tell you whether you need to stop iron supplements before taking a blood test for a proper reading.

REPLY

I began taking hydroxyurea ( 2 x 500 mg) on Friday and am in day 4. Moderna SARS 2 vaccine boosted my platelet count to 1.369 million. Blood tests will be taken monthly to track the effect on JAK2 genes production of platelets. My oncologist wants to see me in 3 months. Do others in the group has experience with hydroxyurea and the appropriate number of pills that least interfere with the immune system?

REPLY

I was diagnosed with ET and Jak 2 I was taking a baby aspirin daily though platelets are in 600's Then I had a low iron count and was told to take iron supplements.. That worked but soon my hematocrit went past the normal scale. Dr. tested for EPO That value came back low. Now he reclassified me with PV though other values are still in ET range. QUESTION: Can iron supplementation affect an EPO value? Can a low EPO revert or is it permanent indicating a new situation? Doctor is suggesting phlebotomy. How serious is PV . Quite worried!

REPLY
@damari

I was diagnosed with ET and Jak 2 I was taking a baby aspirin daily though platelets are in 600's Then I had a low iron count and was told to take iron supplements.. That worked but soon my hematocrit went past the normal scale. Dr. tested for EPO That value came back low. Now he reclassified me with PV though other values are still in ET range. QUESTION: Can iron supplementation affect an EPO value? Can a low EPO revert or is it permanent indicating a new situation? Doctor is suggesting phlebotomy. How serious is PV . Quite worried!

Jump to this post

@damari, were you not able to get an answer from your doctor regarding iron supplementation and its possible affect on EPO value? I know you are quite worried and think you need to keep asking your doctors questions until you feel confident in the care and understand your condition of PV or ET better.

In the meantime, I wonder if @mjpm2406 @stevehurlburt @pattitoo @helen2209 @levieta @trillium might have more info for you.

Damari, when do you see your doctor again?

REPLY
@dwlowrance

I began taking hydroxyurea ( 2 x 500 mg) on Friday and am in day 4. Moderna SARS 2 vaccine boosted my platelet count to 1.369 million. Blood tests will be taken monthly to track the effect on JAK2 genes production of platelets. My oncologist wants to see me in 3 months. Do others in the group has experience with hydroxyurea and the appropriate number of pills that least interfere with the immune system?

Jump to this post

@dwlowrance, I wonder if you would get answers to your questions about hydroxyurea more readily in this related discussion:
– Side Effects Of Hydrea or Hydroxyurea for ET https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/

REPLY
@colleenyoung

@damari, were you not able to get an answer from your doctor regarding iron supplementation and its possible affect on EPO value? I know you are quite worried and think you need to keep asking your doctors questions until you feel confident in the care and understand your condition of PV or ET better.

In the meantime, I wonder if @mjpm2406 @stevehurlburt @pattitoo @helen2209 @levieta @trillium might have more info for you.

Damari, when do you see your doctor again?

Jump to this post

Thank you for your response. So far, I have not gotten an answer. He will repeat the test in 4 weeks and look at all the rbc values. I still hope someone can answer my question of the iron supplementation before that. New Question: My doctor did a test BNP I was diagnosed in March of 2020 with afib. I am on metoprolol and eliquis. My score one year ago was 58 and now it is 133. He said this is NOT a worry. Can these values fluctuate? Since the afib episodes have happened approximately 2 times a month, he thought this is the reason. His suggestion is to let the cardiologist know. What info can you share?

REPLY
Please sign in or register to post a reply.
  Request Appointment