I too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.
Once you get your numbers down, you’ll be able to go about your normal lifestyle. They’ll do an ultra sound to make sure your spleen and other organs aren’t enlarged. Enlarged spleen isn’t dangerous, just uncomfortable at times. My husbands has been for over 20 years due to liver disease. Blot clots is our biggest worry. If you haven’t had issues with that with your numbers high, that’s a really good sign! Hoping for you they get it under control quickly.
Hi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack and high. I had blood testing last fall and they failed to do a complete blood count (CBC). That's the first indication that showed it and will for most people. I started with a new physician and she ran the full gammit of blood tests on me to get a baseline on my health when I started with her a couple months go. Bam. There it was. Associate yourself with a good medical system. My preious doctor ran tests on me but NOT a CBC. No idea how long I have had this.
I too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.
Cindy1209----- Been busy the last few days- trying to get things organized- We had Chris's 3 kids for easter weekend. They are great kids and enjoy their company. My initial appt with the oncologist isnt until next Tuesday (4/18) Seems like it is never going to happen. I have stopped reading about this and will wait for the Dr to tell me what I need to know. I worry way tooo much- How are you doing? Hope all is going well for you and that you are enjoying that baby. What joy the bring us. Thank you for being my sounding board. Sarah
My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
Hello, I'm taking Hydroxyurea and asked this question to the oncologist. Happily he said that there were no dietary restrictions and I can even have alcohol, in moderation. Looking on line, there is much mixed information, so I try to only look on only verified medical sites.
My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
Dépendant on your meds - example Jakafi : NO grapefruit in any kind of form. And I’ve had to drastically limit wine (I only ever drunk 1-1.5 glass/day) as it aggravates my weakness for UTIs…
My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
In my case the diagnosis came about as a result of my regular doctor being out on my appointment date and the one filling in though I looked “ruddy “. He ordered a CBC test on me and the hematocrit reading was in mid 60’s. That led to a referral and diagnosis.
Hi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack and high. I had blood testing last fall and they failed to do a complete blood count (CBC). That's the first indication that showed it and will for most people. I started with a new physician and she ran the full gammit of blood tests on me to get a baseline on my health when I started with her a couple months go. Bam. There it was. Associate yourself with a good medical system. My preious doctor ran tests on me but NOT a CBC. No idea how long I have had this.
Hay, you sound like me 3 years ago when I was diagnosed with PV. I eat healthy, I'm slender, do regular exercise and take whole lot of supplements and vitamins but after two and a half years, with a biweekly phlebotomy, baby aspirin and POSITIVE THINKING, my red blood count was 2057, safe range is 120-400. I was heavily fatigued, had frequent stomach upsets and painful circulation problems, so I broke down and started taking hydroxyurea every night. I have regained my energy and now after 8 months my blood count is a bit over 900. As soon as it hits 500 I plan to take the hydro pill only 4 nights a week. I hate it, call it the poison pill, (PP) but it has helped with no side effects that I can tell. I suggest you relent and not let your platelets get out of control. Robin in NY State but I grew up in Southern California. So, Howdy!
Hello Robin in NY but grew up in S. CA! So good to hear from you. I have soooo many of the symptoms, though major fatigue isn't one of them. I've always been a go-getter and a hit-the-floor-running kind of girl. Though I will say my longevity isn't like it used to be. Hopefully I will know more in the next few weeks. Looking forward to more conversations. Carol in New Mexico
I was having a lot of the standard symptoms- dizziness, fatigue, and symptoms associated with dehydration including extreme thirst and horrible cramps in my neck and shoulders. I finally saw an internist and he ordered a blood test either that day or the next and the day after that I got a phone call from a nurse navigator at the North Bay Cancer Center that something was off and I needed to go in that afternoon. When I went in they sent me to see Dr. Long, who's the head of the hematology/oncology dept. there and he showed me on the computer that I proved positive for PV
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Once you get your numbers down, you’ll be able to go about your normal lifestyle. They’ll do an ultra sound to make sure your spleen and other organs aren’t enlarged. Enlarged spleen isn’t dangerous, just uncomfortable at times. My husbands has been for over 20 years due to liver disease. Blot clots is our biggest worry. If you haven’t had issues with that with your numbers high, that’s a really good sign! Hoping for you they get it under control quickly.
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3 ReactionsI too had a similar issue with my primary care provider. I had already shown signs and symptoms but were ignored. Looking back at my previous test results I had already been off the charts for almost 2 years. It took persistence to advocate for myself to finally get an explanation and referral. I just hope it's not too late to manage it from progressing further.
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3 ReactionsHi Sarah,
I know you had an appointment on 4/18. I hope all went well and all your questions were answered. Thinking about you.
Cindy
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1 ReactionHello, I'm taking Hydroxyurea and asked this question to the oncologist. Happily he said that there were no dietary restrictions and I can even have alcohol, in moderation. Looking on line, there is much mixed information, so I try to only look on only verified medical sites.
-
Like -
Helpful -
Hug
2 ReactionsDépendant on your meds - example Jakafi : NO grapefruit in any kind of form. And I’ve had to drastically limit wine (I only ever drunk 1-1.5 glass/day) as it aggravates my weakness for UTIs…
My dianosis story was somewhat similar. What I haven't seen (which may tell me there isn't) - is if there are any dietary limitations with this particular Polycythemia diagnosis. Any limits on any types of foods, beverages, additional vitamin supplements - etc? Any dietary items that may help with this? All comments appreciated. Carol in New Mexico
In my case the diagnosis came about as a result of my regular doctor being out on my appointment date and the one filling in though I looked “ruddy “. He ordered a CBC test on me and the hematocrit reading was in mid 60’s. That led to a referral and diagnosis.
-
Like -
Helpful -
Hug
1 ReactionHi Darryl. My HCT (hematocrit - may have spelled that wrong) was waaaay out of whack and high. I had blood testing last fall and they failed to do a complete blood count (CBC). That's the first indication that showed it and will for most people. I started with a new physician and she ran the full gammit of blood tests on me to get a baseline on my health when I started with her a couple months go. Bam. There it was. Associate yourself with a good medical system. My preious doctor ran tests on me but NOT a CBC. No idea how long I have had this.
-
Like -
Helpful -
Hug
2 ReactionsHello Robin in NY but grew up in S. CA! So good to hear from you. I have soooo many of the symptoms, though major fatigue isn't one of them. I've always been a go-getter and a hit-the-floor-running kind of girl. Though I will say my longevity isn't like it used to be. Hopefully I will know more in the next few weeks. Looking forward to more conversations. Carol in New Mexico
I was having a lot of the standard symptoms- dizziness, fatigue, and symptoms associated with dehydration including extreme thirst and horrible cramps in my neck and shoulders. I finally saw an internist and he ordered a blood test either that day or the next and the day after that I got a phone call from a nurse navigator at the North Bay Cancer Center that something was off and I needed to go in that afternoon. When I went in they sent me to see Dr. Long, who's the head of the hematology/oncology dept. there and he showed me on the computer that I proved positive for PV