Polycythemia Vera

Posted by atir @atir, Nov 30, 2018

Have been diagnosed with polycythemia Vera recently, Any feed back

@thlas1971

@simple27 I took my promethease jak2 variant information with me to my Dr appointment. I’m showing three areas of increased risk. I’m now waiting for Jak2 lab results. Blood was drawn last Thursday (feb14) at Mayo, any idea on the turn around time for results there?

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@thlas1971 Hi there! Sorry for the late reply. I uploaded my 23 and Me raw data onto livewello and these are my JAK2 results…

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@simple27

@thlas1971 Hi there! Sorry for the late reply. I uploaded my 23 and Me raw data onto livewello and these are my JAK2 results…

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Results meaning…

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@thlas1971

For everyone’s info, I messaged through the patient portal and was told up to 10 days for Jak2 results. But the nurse suggested I check in at 7 days in case it is available. Wonder why it takes so long.

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@thlas1971 My results took 4 days…

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In reply to @simple27 "See dates..." + (show)
@simple27

See dates…

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I came back negative for jak2 v617f, CALR and MPL. I’m waiting for directions on next steps.

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Hello all.

I am a healthy 26 y.o. male. Last week, I went to my doctor for my annual check-up and a CBC was run. RBCs (6.13), hematocrit (50.3%), and hemoglobin (18.4) values were all slightly elevated. WBCs, platelets, and all other lab values were normal. The doctor mentioned that this could potentially be hemochromatosis or PV, and referred me onto a hematologist for further evaluation.

Is it possible that these lab results were due to lab error or dehydration when the blood was taken? My CBC from last year had very similar results in these values, yet WBCs were elevated at that time as well. Also, would blood values be expected to be a lot higher than what mine are to become a concern for a PV diagnosis?

Thank you for your time!

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Hi @goldpeak93 and welcome to Connect. You may have noticed I moved your post to this existing discussion on polycythemia vera so that you can connect with others with this diagnosis. Simply click VIEW & REPLY in your email notification to get to your post.

That must be frightening to suddenly have a potential blood disorder diagnosis. I wanted to introduce you to fellow Connect members @thlas1971 and @simple27 as they have experience with this and may be able to share their knowledge and offer support.

Back to you @goldpeak93 how long until you see a hematologist?

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Hello, I am currently looking for research for my mother and our family. She was diagnosed with Polycythemia Vera/PV in 2017. She thought she had an upper respiratory infection and went to the local urgent care. They informed her that her oxygen was at a 69 and she had hypoxia and was sent, and eventually admitted to the hospital. The next day after blood work was completed she was diagnosed. Since than she has been getting phlebotomies (sp?) approximately every 6 weeks. Her blood doctor and her regular doctor both have conflicting answers. One says she needs oxygen at night and the other says as needed. They have not done many tests to determine the cause of this, nor have they looked for the JK gene mutation. Is this not required for diagnosis purposes? Since then she has had a multitude of symptoms including a stroke. She often becomes very tired and unable to do much, then most of the time you wouldn't know anything is wrong with her.

She has noticed a difference between when she stops using her oxygen and when she continues. She is convinced that if she only uses it during her low oxygen times or when she starts to feel bad, they remove less blood. She plans on checking on this when she goes back to her hematologist on the 11th. Most of my problems are, when I find some information about the subject, my brother can find equal information disputing what I say. Can anyone please help me with a few questions? Is there any reputable information with vitamin c as they say it helps with lung function, and Vitiamin D3? I think I have found enough evidence as to "it can't hurt", but I also read where Vitamin K is a no-no as it raises iron levels and that is bad for PV, so I don't want to just add things that might not be as good as I think.

Sorry for the ramble, the internet is so confusing.

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@clarissa37

Hello, I am currently looking for research for my mother and our family. She was diagnosed with Polycythemia Vera/PV in 2017. She thought she had an upper respiratory infection and went to the local urgent care. They informed her that her oxygen was at a 69 and she had hypoxia and was sent, and eventually admitted to the hospital. The next day after blood work was completed she was diagnosed. Since than she has been getting phlebotomies (sp?) approximately every 6 weeks. Her blood doctor and her regular doctor both have conflicting answers. One says she needs oxygen at night and the other says as needed. They have not done many tests to determine the cause of this, nor have they looked for the JK gene mutation. Is this not required for diagnosis purposes? Since then she has had a multitude of symptoms including a stroke. She often becomes very tired and unable to do much, then most of the time you wouldn't know anything is wrong with her.

She has noticed a difference between when she stops using her oxygen and when she continues. She is convinced that if she only uses it during her low oxygen times or when she starts to feel bad, they remove less blood. She plans on checking on this when she goes back to her hematologist on the 11th. Most of my problems are, when I find some information about the subject, my brother can find equal information disputing what I say. Can anyone please help me with a few questions? Is there any reputable information with vitamin c as they say it helps with lung function, and Vitiamin D3? I think I have found enough evidence as to "it can't hurt", but I also read where Vitamin K is a no-no as it raises iron levels and that is bad for PV, so I don't want to just add things that might not be as good as I think.

Sorry for the ramble, the internet is so confusing.

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Hi, @clarissa37, and welcome to Mayo Clinic Connect. It sounds like your mom has been through a lot with this diagnosis and its symptoms, and then the stroke. I also agree with you that you can find information supporting – or quite the opposite – about anything you'd like on the internet.

Hoping that members here will provide you some support and solid assistance as you are looking to get some answers. Please meet @atir @chadknudson @apr931 @mwear @juiceinjc. They may have some experience with using oxygen and taking or deciding not to tak Vitamin C or D3.

Also, I thought you'd be interested in this Mayo Clinic information on polycythemia vera https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850.

Did the doctors explain the why behind their recommendations of "as needed" or "nightly" for using oxygen?

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@lisalucier

Hi, @clarissa37, and welcome to Mayo Clinic Connect. It sounds like your mom has been through a lot with this diagnosis and its symptoms, and then the stroke. I also agree with you that you can find information supporting – or quite the opposite – about anything you'd like on the internet.

Hoping that members here will provide you some support and solid assistance as you are looking to get some answers. Please meet @atir @chadknudson @apr931 @mwear @juiceinjc. They may have some experience with using oxygen and taking or deciding not to tak Vitamin C or D3.

Also, I thought you'd be interested in this Mayo Clinic information on polycythemia vera https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850.

Did the doctors explain the why behind their recommendations of "as needed" or "nightly" for using oxygen?

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Thank you for your reply, I look forward to hearing personal experiences that may shed some light on how they cope.
They originally put her on oxygen about 4 years ago, she often gets bronchitis and such and has had a breathing treatment device for many many years. when her oxygen dropped into the 60s the ER actually got her with the people to have in home oxygen and they said to use it at night or if her oxygen got to a certain point, basically as needed. Her hematologist told her to use it throughout the day. I really am not sure I have the whole backstory on that part, I will ask her and see and make sure to post it.

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@lisalucier

Hi, @clarissa37, and welcome to Mayo Clinic Connect. It sounds like your mom has been through a lot with this diagnosis and its symptoms, and then the stroke. I also agree with you that you can find information supporting – or quite the opposite – about anything you'd like on the internet.

Hoping that members here will provide you some support and solid assistance as you are looking to get some answers. Please meet @atir @chadknudson @apr931 @mwear @juiceinjc. They may have some experience with using oxygen and taking or deciding not to tak Vitamin C or D3.

Also, I thought you'd be interested in this Mayo Clinic information on polycythemia vera https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850.

Did the doctors explain the why behind their recommendations of "as needed" or "nightly" for using oxygen?

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So today my mother went to the hematologist, she did not have to give blood her numbers looked fine. She told her doctor that she didn't wear her Oxygen except as needed. He said that it was good and if she cut back her iron intake it would be a lot better. So he told her no more cereal for snacks. I guess that would go in to the Vitamin K thoughts I had. Her regular physician said that she should wear the oxygen as precaution for her lung capacity is not so well. But that all she knows actually. She does have some prior lung surgeries as a child and COPD so it could just be a recommendation from him. But I have been reading the other posts and the information provided by the Mayo clinic.
I think this is where I would like to keep getting my research from. I mean my brother cant argue with the clinic right? And thank you all for all your help.

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Good Morning, So, back in March I had a bone marrow biopsy and aspiration done and the results came back positive for Polycythemia Vera, I had a long discussion with my hamotologist and I felt comfortable going the phlebotomy route as opposed to the hydroxyurea route for initial treatment . She would have preferred I do the latter as a preventative measure for future thrombosis, ( I have CVST as well. ) but I said let's try the phlebotomies and if my hematocrit level and hemoglobin are consistently not good, I will consider the drug. To make a long story short, I've had 2 scheduled phlebotomies with 2 scheduled blood tests a week previous to each one and I've cancelled both as my blood work came back not needing one. My question now is, could I have been misdiagnosed?

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