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.

@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?

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Sorry, I am not aware of EPO. I was originally on Hydroxiria but developed so many “ rare” side effects. Dr wanted me on Jakafi, but I consulted with Dr Palmer @Mayo and we moved to Pegysus. After two months this seems to be working better. I also added a B-12 supplement recently. Wish I had more insight. The only difference between ET and PV has to do with scarring. ET is manageable by pill..PV requires more bone marrow biopsies to monitor scarring.

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My husband was dx with Jak2 about 10 months go when his WBC was high on a few lab tests.He has recently started 1000mg/day of Hydroxyurea for a platelet count of 950,000. In three weeks , the count went down to 265,000 and the dose was cut to 500mg/day… but his hematocrit is still high at 52. Dr did first phlebotomy today (pint) He wants the level to go down to 40 to 45. What concerns me is… his GI Dr happened to test his iron/ ferritin last week and his ferritin is LOW at 17. The hematologist said he ABSOLUTELLY can not take any iron and the ferritin will drop even lower after the phlebotomies ( every 2 weeks ) but not to worry as he hematocrit needs to come down. Thoughts?

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@donlynn

My husband was dx with Jak2 about 10 months go when his WBC was high on a few lab tests.He has recently started 1000mg/day of Hydroxyurea for a platelet count of 950,000. In three weeks , the count went down to 265,000 and the dose was cut to 500mg/day… but his hematocrit is still high at 52. Dr did first phlebotomy today (pint) He wants the level to go down to 40 to 45. What concerns me is… his GI Dr happened to test his iron/ ferritin last week and his ferritin is LOW at 17. The hematologist said he ABSOLUTELLY can not take any iron and the ferritin will drop even lower after the phlebotomies ( every 2 weeks ) but not to worry as he hematocrit needs to come down. Thoughts?

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Hi donlynn, I moved your questions to this existing discussion on the same topic of JAK2 mutation, high platelets and hematocrit and low ferritin. I did this so you can connect with other members like @pattitoo @mjpm2406 @helen2209 @stevehurlburt and more.

Am I understanding correctly that the hematologists primary concern is the hematocrit levels and that it needs to be corrected before the ferritin issue can be addressed?

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My platlets were at over a million and pain in my feet was unbearable. I had a bone marrow biopsy which confirmed JAK-2 mutation and mild scarring so PMF. ( Jak-2 can Not be determined based on blood test, must be a biopsy. Also..while you may have been born with this disease it is normal to not show up until later in life). Three years on Hydrea and only one instance of low iron….had to switch meds due to rare side effects…”cloudy lungs”… now on Pegysus injections and working out dosage but noticed today my iron is lowering weekly. These drugs all reduce hemoglobin and it needs to be considered when working on dosage.
Remember what you have is rare….I have been to three oncologists and two World Class Specialist…there is a lot of misinformation out there. Learn to ask…read and deep research…I have learned more medical terms in four years then I ever wanted to know….but This s My cancer and these doctors are just consultants. Good luck. Steve

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@colleenyoung

Hi donlynn, I moved your questions to this existing discussion on the same topic of JAK2 mutation, high platelets and hematocrit and low ferritin. I did this so you can connect with other members like @pattitoo @mjpm2406 @helen2209 @stevehurlburt and more.

Am I understanding correctly that the hematologists primary concern is the hematocrit levels and that it needs to be corrected before the ferritin issue can be addressed?

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My husbands hematologists ( had 2n opinion ) both said not to worry about the ferritin (17) .. need to get Hct down from 51 to below 45 with phlebotomies. Last week the he was at his primary Dr , I asked him to repeat the ferritin/ iron blood test ( My old primary care Dr ALWAYS repeated blood tests if they were out of range) and sure enough , this time the ferritin was OK and the iron was high… So now I guess one more blood test to determine which one is correct!

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@donlynn

My husbands hematologists ( had 2n opinion ) both said not to worry about the ferritin (17) .. need to get Hct down from 51 to below 45 with phlebotomies. Last week the he was at his primary Dr , I asked him to repeat the ferritin/ iron blood test ( My old primary care Dr ALWAYS repeated blood tests if they were out of range) and sure enough , this time the ferritin was OK and the iron was high… So now I guess one more blood test to determine which one is correct!

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sounds so familiar! Can iron supplementation lead to a low epo value? seems hematocrit went up after taking iron. Now epo is low and attributed to PV scheduled for phleblotomy

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UPDATE on Ferritin… Family Dr ordered a new ferritin/ iron blood test ( after 1st Phlebotomy) … This time the ferritin was in normal range and Iron was high.. This makes NO sense at all …. I guess it goes to show you that blood tests can be incorrect??

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I started taking hydroxyurea prescribed by oncologist on April 23 with a 1.350 platelet count. Saturday, 4 weeks later, my platelet count is down to 600.

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