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.
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.
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.
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.
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.
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.
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.
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?
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?
Hi @hope19, I moved your message to this existing discussion about Polycythemia Vera so that you can connect with fellow members @atir@clarissa37@chadknudson@apr931@mwear and @juiceinjc. I'd also like to tag @1nan on this disucssion as she may have some experience to share about blood work and changing values.
Hope, have you talked to your hematologist about the blood work results. It may not necessarily be a misdiagnosis but rather remission. Are you able to schedule an appointment or virtual consult or even contact through the patient portal if your hematologist has one?
Yes, I'm the one who always has her look at the blood results before a phlebotomy, and that's when she says, my levels are good so no need , reschedule for next month. I often wonder if I wasn't pro active with my health if I'd be having these phlebotomies for no reason. Very happy I decided to wait on the Hydroxyurea. I do have a session with her, but not until November. My next scheduled phlebotomy is for end of August with a blood test the week before, which I asked for and I will confer with her once again when the results come in. I get the results as well which is how I know how my levels are in comparison to how they should be. I'm not a doctor but maybe switching from the heparin to the equilis has somehow stabilized things? Or am I grasping at straws. Because I have CVST along with inter cranial pressure, pappilledema it was thought that the PV was the initial cause. I don't know anymore. I ve moved on..
I’m a pediatrician working for more than 27 years.I have been diagnosed as a polycythemia patient 10 years ago with ability to mention either a primary or secondary
I did everything for diagnosis
Erythropoietin
Sonar kidneys
Bone marrow biopsy
MRI brain
Jack test
Everything and nothing is there
What I used to do is venisection every 3 month when hematocrit ratio exceeds 52 and when HB reaches 17gm
The best thing I noticed that vitamin C delays the intervals between blood donation
Now I’m taking Vitamin C 1 gm daily regulary for 6th months
Good news that HCT back to 48 without venisection for 2 times 3 months apart
Excuse this my first responce. I had similar occurrence last year. It seemed like when I ate a lot of Watermelon I didn't require phlebotomy. Never thought it was the Vit C.
My question is. Even though the Vit C is lowering the Hct.
Is the blood thinner?
Appreciate your reply.
Hi @hope19, I moved your message to this existing discussion about Polycythemia Vera so that you can connect with fellow members @atir@clarissa37@chadknudson@apr931@mwear and @juiceinjc. I'd also like to tag @1nan on this disucssion as she may have some experience to share about blood work and changing values.
Hope, have you talked to your hematologist about the blood work results. It may not necessarily be a misdiagnosis but rather remission. Are you able to schedule an appointment or virtual consult or even contact through the patient portal if your hematologist has one?
I'm new to this group.
Dx w PV about a year and 1/2 ago. I am signed up to a portal to review my labs. Be nice to have others that are going thru same situations.
Connect
Connect
Like
Helpful
Hug
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.
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?
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.
-
Like -
Helpful -
Hug
1 ReactionSo 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.
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?
Hi @hope19, I moved your message to this existing discussion about Polycythemia Vera so that you can connect with fellow members @atir @clarissa37 @chadknudson @apr931 @mwear and @juiceinjc. I'd also like to tag @1nan on this disucssion as she may have some experience to share about blood work and changing values.
Hope, have you talked to your hematologist about the blood work results. It may not necessarily be a misdiagnosis but rather remission. Are you able to schedule an appointment or virtual consult or even contact through the patient portal if your hematologist has one?
Yes, I'm the one who always has her look at the blood results before a phlebotomy, and that's when she says, my levels are good so no need , reschedule for next month. I often wonder if I wasn't pro active with my health if I'd be having these phlebotomies for no reason. Very happy I decided to wait on the Hydroxyurea. I do have a session with her, but not until November. My next scheduled phlebotomy is for end of August with a blood test the week before, which I asked for and I will confer with her once again when the results come in. I get the results as well which is how I know how my levels are in comparison to how they should be. I'm not a doctor but maybe switching from the heparin to the equilis has somehow stabilized things? Or am I grasping at straws. Because I have CVST along with inter cranial pressure, pappilledema it was thought that the PV was the initial cause. I don't know anymore. I ve moved on..
Anyone know of any clinical trials? Gene therapy, transfusion,stem cells.
Excuse this my first responce. I had similar occurrence last year. It seemed like when I ate a lot of Watermelon I didn't require phlebotomy. Never thought it was the Vit C.
My question is. Even though the Vit C is lowering the Hct.
Is the blood thinner?
Appreciate your reply.
I'm new to this group.
Dx w PV about a year and 1/2 ago. I am signed up to a portal to review my labs. Be nice to have others that are going thru same situations.
-
Like -
Helpful -
Hug
1 Reaction