Just curious how others on here found out that they had PV.
The first opportunity I had for diagnosis was missed at my GPs surgery when they ignored abnormal results from a routine blood test from a Healthy Heart Clinic. Despite the lab marking the results as abnormally high, the reviewing GP marked them as ok, no further action.
About 12 months later, I started having problems swallowing food, with it seeming to get stuck in my oesophagus. Another round of blood tests during the investigation for the cause of this revealed that my haematocrit level was up around 0.6 and at this point I was sent to see a haematologist and received the diagnosis after further testing. Followed by multiple venesections.
Had I not started to have stomach problems, I am not sure at at what point my PV would have been discovered as I didn't have any other symptoms.
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I was a regular blood donor and then it all became scary as my white cells and platelets were high in the latest donation, so was sent into the system for BMB which led to the PV diagnosis. That was back in 1999, I didn't have any symptoms at all so, like you, have wondered how long I would've carried on in blissful ignorance!! In fairness, I stayed pretty well throughout the PV years, just with aspirin and occasional venesection, it was only when I slid into MF in 2015 that I really started symptoms. But luckily I was put on Ruxolitinib and have felt very well ever since, so no complaints here!
I ended up in the hospital because of pancreatic inflammation, when the it subsided, high hematocrit and hemoglobin remained, so further research was carried out and after the bone marrow biopsy was diagnosed with PV. I started with venesictions right away.
Hi, I found out that I had PCV purely by accident after a DVT in my leg. I had been suffering with migraines every day and extremely high blood pressure, along with kidney pain and various other symptoms. It was only when I went to see a new GP that I was sent for a full blood test and had all my organs scanned. I was lucky to have been diagnosed and received treatment at this time, because I had been having worsening symptoms for over a year and felt like death warmed up. My blood was so thick on my first venesection that the nurse struggled to get any out and only managed half a pint in the end.
My husband's offshore medical kept showing raised bloods .
We ended up moving go surgery's as the one we were in were hurrendous.
After moving surgeries he needed a well man's check up bloods , bp etc.
The nurse had problems getting his bloods his arm went navy blue.
He was having terrible headaches he put that down to stress of his job.
Two days later the new gp called him in his hamecratic level was 0.62 he was referred to hematology we were told by the gp it was polycythemia well this just freaked us out as it took us straight to the cancer pages.
After seen a hematogist he started having a weekly venesection to bring his HCT level down this went on for almost two months then he went to monthly then three monthly venesections.
After two years he was so drained due to low iron he went onto hydroxy initially he felt better but two years down the line the exhaustion was terrible.
This year he went onto ruxolitanib it's eased his symptoms and all his bloods are in range now . We just praying it lasts a long time and he does need a stem cell transplant as in December his bone marrow biopsy showed MF early stages .
Mine was picked up on a blood test for something unrelated. It was the high potassium levels which rang alarms. In fact the white blood cells had been high for at least 5 years, but these had been ignored. I was symptom free.
Yes, like a lot of others my PV was picked up by chance, following a routine blood test for something completely different.
When I went for the result, my GP said (in response to the original enquiry) "yes, that's fine but your Haemoglobin's a bit high. We'll keep an eye on that!"
I went home, immediately looked on the internet for high Haemoglobin, and up came "PV". Apart from itching a little after a shower, I had no other symptoms.
This was in September 2014, and I then had full blood counts taken every 6 weeks or so. After Christmas, my GP asked to see me and, all smiling, asked me how I was. I replied that I was a little worried and when she asked why I said " because I think I've got PV, do I need a referral to a haemotologist? I think she was a bit taken aback by my frankness, but she stopped smiling and said that I did not need a haemo. yet but I would continue to have regular full blood counts and they would keep a close eye on things. By April, I was called in and told that my counts were now too high and I did need to see a haemotologist. I was officially diagnosed with PV on 15 May 2015.
Mine was missed by GP too. An annual blood test showed high platelets. It was repeated two weeks later. Platelets still over 500 but GP said it was fine. Blood test prior to surgery 6 months later showed 500+ platelets but still told to stop clopidogrel for 10 days. My body was all over place . Light headed. Mentioned to my husband desperate to resume meds for fear of another stroke. I collapsed a week after minor surgery . A and E consultant picked up on reading. That was start of investigations
Mine was picked up as I went to a well woman clinic at my doctors. My blood pressure was very high, my cholesterol very low and I had a irregular heartbeat. Which then the doctor done blood tests and I was called by the hospital on a Saturday morning to go up to A&E urgently. Which after taking lots of blood and my bone marrow came back with this diagnosis. It was missed for several years by my GP as I had been several times gone to see him with very bad headaches which he put down to migraines and menopause. He actually sent me for a brain scan which came back ok.
So I feel very lucky I went for my well woman check, as the hospital said I was a ticking time bomb. Since having regular checks at the hospital and Hydroxycarbamide with aspirin I have not had one headache. My consultant and nurses are very good at my hospital. I feel lucky to have such good care now.
I was diagnosed with Essential Thrombocythemia over 30 years ago. I plugged along symptom free on an aspirin only regimen for nearly 25 years, until I had a flair up of reactive thrombocytosis in 2013 due to gastrointestinal issues. Went back to HU for 1 year, then back on aspirin only for 5 years. Another flair up of reactive thrombocytosis following surgery in January 2018 lead to another year on HU. At this point, the hematologist realized the ET had progressed to Polycythemia. This hemo-doc eventually started me on a tx plan that included phlebotomy.
When I finally went to see a MPN Specialist, it became apparent that the ET had progressed to PV back in 2013. The regular hematologist missed the progression of the disease. That doc (who I really like) fired himself saying "your health is more important than my ego." Was referred to one of his colleagues who has more expertise with blood disorders. Even my new local hemo-doc has limited MPN experience (I am only his 6th MPN patient in 20+ years). The MPN Specialist now plays a consulting role, with my ongoing treatment managed by the local doc.
The MPN Specialist also evaluated my version of PV and changed the treatment recommendation. I am fortunate to be very mildly affected by a relatively benign variant of PV. I tend to see von Willebrand factors drop off once platelets get up into the high 700s. While on aspirin, I bled too much at times and experienced excessive bruising. The MPN expert said my risk of bleeding was higher than my risk of thrombosis. When he evaluated my case, he also said the risks of hydroxyurea in my case did not justify the putative benefits. This doc does not favor "sanitizing" blood lab numbers and looks at the actual symptoms the patient is presenting. As it turns out, I have become HU intolerant and experienced toxicity even at very low doses. So my treatment protocol at this point is phlebotomy-only to keep hematocrit below 45%.
The moral of the story is - be sure to see a MPN expert doc as soon as possible. Most docs, even hematologists, do not have the KSAs to provide you an optimal individualized diagnosis and treatment plan.
I felt so Ill I thought I was dying. I couldn't explain it but knew something was wrong. I took a taxi to the nearest A&E. I couldn't stand so was wheeled in in a wheel chair. I was seen as a priority and seen at once. I had lots of procedures including a blood test. An hour later a junior doctor said "you have cancer but it won't kill you. Make an appointment to see your GP" My reaction was strange and I said "That's all right then" and went home. I even had a sense of relief. Surely doctors are not supposed to break bad news like this
I was severely depressed for a while and put on antidepressants. This was caused by so called life long friends letting me down.. couldn't get anyone to come with me for a bmb. Very lame excuses. It felt like a gross betrayal. I'm ok now. Feel almost normal but live in dread of three monthly blood tests. So far counts are within the normal range.
I've been surprised at the level of people just not caring anything about my disease. Especially my own mother. I don't have a support system at all. It hurt more in the beginning but now I am used to it.
I went to my GP for a repeat prescription review. While I was there the GP suggested a blood test, I have had gout for 14 years and this was check if the Allopurinol dose was correct. About 2 weeks later I got a letter asking me to make another appointment. At this one (another) GP said that my white blood count was high and enquired if I had had an infection wh I had the previous blood test, that was a negative. GP suggested an anti-biotic which I refused as I had no known infection. So a further blood test was ordered. Again after a week or so I was asked to go in and I saw a (yet another) GP who sad my WBC was still high. At this point I found out that my WBC count had been high for at least 5 years but no one had ever picked it up. Further more extensive blood tests were ordered. A week later GP called me to say I needed to be referred to a Haematologist. Had my initial consultation yesterday and was informed I have PV. Going back in a week to start medication (Hydroxycarbamide and aspirin).
I'm feeling very positive after talking with the Haematologist, as in the weeks running up to my diagnosis I was fearing a much worse prognosis.
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