Scared I have Polycythemia
Posted , 9 users are following.
Hi guys, I'm new here. Last Friday I went to my GP because I was feeling left upper side pain in my stomach after being constipated for some weeks, and she ordered me an ultrasound and a blood test. I have an appointment fro the ultrasound on Feb 23 but my blood tests came back on Monday and I have some abnormal results.
WBC: 6.79 [nomal value 4-10]
RBC: 5.89 [3.5 - 4.5]
HEMOGLOBIN: 15.8 [12 - 18]
HEMATOCRITO: 47.5 [normal value to 52]
Platelets: 255 [142 - 424]
The thing is I'm a female, 25 years old and although I have always have high rbc (5.4-5.5) my hemoglobin and hematocrit values have been lower [hemoglobin around 14.9 and 15.2, and hematocrit around 44 and 45] I didn't really pay attention to my hemoglobin and hematocrit counts until I looked it up on the internet (I was more worried about my rbc because it was higher than normal) Of course my research led me to Polycythemia. I suffer from severe health anxiety so I went back to my GP yesterday and talked to her about it. She didn't seem worried at first, until I insisted and told her I don't smoke nor I drink, my meat intake is minimal and I'm also very thin, and so she looked at the test again and seeing I'm young and skinny, she decided to order more tests and refer me to an haematologist to rule out polycythemia. Until now, I had had hope that she would tell me it everything was normal and I could go home and forget about it, but when she actually mentioned polycythemia as an option, I freaked out. Strokes have always been one of my biggest fears and knowing I could have polycythemia, which could cause a stroke, is driving me insane with fear. I have had two panic attacks since yesterday and the symptoms have worsened. I don't know if what I'm feeling (some dizziness, cold hands and feet, stomach bloating, some mild general itching, some mild numbness in my fingers) it's just my anxiety playing me after I read the symptoms (I usually get symptoms after I read them, thanks to my health anxiety) or if it's related to polycythemia. I feel I'm dying. I mean, I'm 25 years old and I've read that untreated Polycythemia can sometimes progress to something worse, but articles also say the drugs used for treatment can also lead to cancer if taken for too long, and I don't want to have cancer in 10 or 20 more years. I also want to have a family at some point and I read polycythemia makes it dangerous to get pregnant. Oh and some articles say you can still have a stroke even if polycythemia is controlled. I'm trying not to panic again but it's hard when I keep thinking I can have a stroke anytime now. This fear is making everything worse.
I'm gonna have more blood tests this Tuesday and make an appointment with an hematologist. I still have hopes that the abnormal results were due to something else (my menstruation cycle had ended a week prior to the test, and I've been urinating a lot because of my anxiety lately. So before the test, which happened in the morning, I urinated like 4 or 5 times and didn't drink enough water. I also didn't have a good meal the night before. I don't know if this could lead to those results). I don't know if I have sleep apnea, either, since sometimes I wake up at night or after a nap feeling like I've been holding my breath for some time. I also yawn a lot during the day, but this could be caused by anxiety as well. I have some mild headaches from time to time, but I have Temporomandibular Joint Disorder so that could be the cause too. And I have blurry vision, but I also have dry eyes that according to my eye doctor, causes blurry vision too. I just... I'm so scared right now I'm crying.
How do you deal with this?
Sorry if my post is a long mess, but my head is a mess right now too.
Oh and sorry for my bad English.
0 likes, 16 replies
Zapamania mia96968
Posted
Hi Mia your numbers seem fine to me. I'm not seeing Pv in those numbers. I think you need to get on some anti-anxiety meds as soon as possible. And the more you read, the worst it gets. Xanax or klonopin would do you well. Good luck. Zap
mia96968 Zapamania
Posted
Thanks for your answer, Zap. Yes, I need to go back to my therapist. I had two wonderful years with very few cases of anxiety, no panic attacks, and my health anxiety seemed gone, but it's back again with a vengeance. Thanks again for taking the time to answer to my messy post
frances20411 mia96968
Posted
Sorry!! for you problem but to me you are suffering more from worry. I am in my senior years and have come thru 2 other cancers...plus have had PV for over
3yrs. I do not take any meds except baby aspirin, drink plenty of water, walk
stay away from high iron food e.g. red meats, etc. I have blood draws (phlebotomies) when my HCT is over 44 and that is usually 1 to 2x a month.
My RBC always run high as do my WBC...I feel it goes with the disease.
of course, I already have had children so I don't have that concern now.
See a specialist and stop worrying...that will do more harm..no matter what disease you have.. How is your blood pressure???
Good luck !!.
ellen68007 frances20411
Posted
Hi there! Ellen from Canada. Welcome to this amazing forum. I know it's a worry. Been there and done that. You first need to try to relax and go through the tests. I know it's easier said then done but a firm diagnoses needs to be done in order to get the proper treatment. You are not going to die. If you are diagnosed with Polycythaemia there is treatment!!!!! I went through all the tests required to finally get to a firm diagnoses. I was ruled out for primary Polythermia and after a year of testing finally a diagnoses" I do have pPolycytemia but it's secondary. Meaning it's from another source. In my case it's COPD. Keep in mind no matter if you are primary or secondary there is the right treatment available to you. People with this diagnoses can live out their lives. At the moment you are your worst enemy. Please don't let this get you down. You will be fine. Take a deep breath and take each test as they come to you. This must be done to get to the bottom of this blood disorder but your levels are not that bad at all. Don't let your anxiety get the best of you. One day at a time. One test at a time and DONT play Doctor Google.
mia96968 frances20411
Posted
Thanks so much for replying to me, Frances. I'm sorry you have to go through all that. I will try not to worry too much. I barely eat red meat, I don't like it, but I eat some other things like spinach, and I have read spinaches are high on iron, so I think I'll quit eating them until I have a result, just in case. I have not had my blood pressure taken in almost two years, so I think I'm gonna ask my doctor to check it next time I see her, but it has always fluctuated from normal to low.
mia96968 ellen68007
Posted
Hi, Ellen. Thank you for taking the time to reply to me. I'm more relaxed now and not as scared as I was yesterday after reading your comments and having spent some time reading this forum. You're right, I have to stay away from Google as much as possible because I know if I keep reading the word 'stroke' I'm gonna panic again, which is not gonna help at all. I'm sorry you have COPD. What were your symptoms before diagnosis?
ellen68007 mia96968
Posted
Hi again Mia. I am glad to see you are more relaxed now. You asked what my symptoms were before my diagnoses. I had a new Doctor because my previous Doctor retired. My new Doctor wanted to start with a complete blood count. I was previously diagnosed with asthma. It was the high red blood cell levels that promted more testing by a Hemotologist. I was always a bit breathless. After lots of tests my breathing issues were not asthma but COPD. I did not have any stomach issues as you have. I did have a flushed face and red hands, itchy at times. That was my symptoms. I think you will find out you are having anxiety. I am glad you gave calmed down since yesterday. If you get anxious again put a post on here and we will try our best to keep you calm. I know it's hard to wait but just take it one step at a time. Enjoy your day, I know I am! Keep us posted
harrishill1 mia96968
Posted
Hi mia. I too was scared and confused when first diagnosed. I was diagnosed 5 yrs ago. I am much older, 75. However, have been on Hydroxyurea for polycythemia. I have done quite well, exercising, weeding, keeping up the house for my daughter, who is busy with other things. Don't worry so much. Wait for the diagnosis. Some of your symptoms don't sound like mine were. Cold hands were not a symptom. Best to wait and see, and take it from there. We can still a normal life span. Let us know what the Hematoloigist finds. Best wishes.
harrishill
mia96968 harrishill1
Posted
Hello and thank your for commenting, harrishill1. I think my symptoms when I wrote the post were all anxiety related, or at least some of them were. Once I relaxed the stomach thing went away, my hand and feet warmed and my breathing got better, among other things. It's still so hard to relax when not knowing if you're sick or not. But yes, I will come back once I have my tests done and talk with an hematologist
Hansy mia96968
Posted
Hi Mia,
I was in your position too when abnormal results came back when I was 32. I googled polycythaemia vera and then stopped reading as it just got too scary!
As it happens, I do have primary polycythaemia vera and it's not scary. Mine is controlled by regular venesections and low dose aspirin and I feel so much better (no more migraines!).
Hopefully, your results are just the result of normal fluctuations but if not, be assured that having polycythaemia vera (in my experience) is ok and very manageable.
Hannah xx
mia96968 Hansy
Posted
Hi, Hanna.
I shouldn't have googled tbh, but at the same time, if I had not google, my GP wouldn't have noticed something was abnormal because she didn't seem worried until I reminded her I'm not a smoker, my age, and my weight. Then she said it was odd to have those results and decided to refer me to an hematologist. But yes, I still regret googling it to the point of giving myself panic attacks.
I feel more relaxed now reading the experiences of people who have this illness and are still leading a normal life. I'm mostly scared that if I have polycythemia, they will give me Hydroxyurea, and I read is a chemo drug and I don't want to take it being so young and for so long. I read there's another drug, more effective than Hydroxyurea. Jakafi, but it's so expensive. Your doc didn't put you in any drugs, right? Only aspirin and venesections? Is that because you're managing your blood levels well, or is it because of your age?
Thank you again for replying to me.
Hansy mia96968
Posted
Hi
To be honest, my haematologist never really mentions other drugs because venesections and low dose aspirin are working so well for me but I think he would be reluctant because of my age (I'm 35 now). We are doing IVF at the moment and he seems quite confident we can carry on just with venesections/aspirin when/if I am pregnant so that's good
lijuan7002 mia96968
Posted
Hi Mia ,
There are no FDA-approved first-line drug treatments for PV at present.
Your doctors may suggest use of a "Off-label drug" based on high quality research studies published in peer-reviewed journals and widely accepted throughout the medical community.(e.g., HU, Aspirin, etc.)
However the Off-label drug just take temporary solution not effect a permanent cure! In some cases, the treatment of HU is lifelong.
But Off-label drug may not a good coice for PV!
The specific JAK2 V617F mutation is detected in >95% of patients with PV.
And JAK2 V617F mutation is the key driver of PV!
You can visit the ASH website to get the latest clinical Information about PV.
Ppaer1:
Impact on MPN Symptoms and Quality of Life of Front Line Pegylated Interferon Alpha-2a Vs. Hydroxyurea in High Risk Polycythemia Vera and Essential Thrombocythemia: Interim Analysis Results of Myeloproliferative Disorders Research Consortium (MPD-RC) 112 Global Phase III Trial
Paper 2:
Final Results from PROUD-PV a Randomized Controlled Phase 3 Trial Comparing Ropeginterferon Alfa-2b to Hydroxyurea in Polycythemia Vera Patients
I think the new generation interferon may a good choice for a effect a permanent cure !!
Best wishes
megandmollysmom mia96968
Posted
I was diagnosed with severe sleep apnea last year. My symptoms started years ago. I saw over a dozen doctors and everything came back normal. In the beginning though my RBCs were also elevated and I too was referred to an hemocologist. I also had severe yawning and anxiety. I would wake at night with hard heart beat and increased heart rate. I had weird sensations in the back of my head, fullness in ear, and dizziness. I went on to develop severe fatigue and a multitude of other symptoms. You do not have to be heavy to have sleep apnea. It has taken me over a year for my symptoms to fade since I went undiagnosed for so long. But once I started on my CPAP I could feel an improvement. My oxygen levels pre CPAP dipped to the mid 70's at night. Not one of my doctor's brought up sleep apnea, I self referred. If you snore or gasp for air or are tired during day go for a sleep study.
Good luck
ellen68007 mia96968
Posted
Hi again Mia! After many, many tests I was finally diagnosed with secondary Polycythaemia. It was due to COPD. I as well had the sleep apnea test which the results came back mild. Sleep apnea can contribute to Polycthemia. I was referred to a respirologist and he did some tests. Spirometry incorporated with a plumanary lung function test. I did the walk test on the tread mill and on excertion my oxygen levels had dropped. He ordered a CPAP. I had no idea what this was. I went to the Proresp shop where I live and it was all explained to me. I was mortified just looking at the head gear. Talk about Darth Vader!!!!. It took me days to get used to it. I just could not adapt to the pillow mask. Drove me nuts. I would take it off in my sleep. This past week they gave me a one week try of a nasal mask. Wow! Sooooo comfortable for me. I slept through the night and could not believe how much energy and the feeling so good! In my case it's being used for my COPD. After 3 months he wants me to have a complete blood test done and us sure my high levels will have dropped. Take care and please keep in touch with your friends here from different countries. Great forum.