PV Sympthoms
Posted , 8 users are following.
I was diagnosed with having too many red blood cells a few days ago after going into the ER for dizziness. They drained a pint of blood. It came on so suddenly. Before draining, my level was 59%...after 53%. Today I had another treatment, at first I felt better, but now I'm so dizzy and palms are sweating. Note that I have an anxiety issue, so that doesn't help things. No chest pain other than the aches and pains i've gotten used to the past few days. Heads a little foggy, but no major headache. I'm set to have blood drawn each week until it's normal. I'm also weak. Do I need to be concerned with these sympthoms or is this to be expected in between blood draws? If it is okay, what should alert me to get medical help? It feels scary and aweful. Thanks.
0 likes, 47 replies
Zapamania john17871
Posted
Hi john I'm assuming you have been dx with Pv. From what I've been reading since I was dx 4 years ago the only way to know for sure is a bone marrow biopsy. It will tell a lot as to where you're at in this disease. Anxiety is a given. We have a very rare disease I think the stats are 2.3 per 100,000 people. Your platelet count and hematocrit are 2 very important numbers. This disease is very unpredictable. It has driven me crazy. It is isolating. You defininitely need to be with an MPN specialist and not a hematologist who treats many different blood disorders. I wish you the best. Linda
Zapamania
Posted
Hi john after reading all your lab tests which I didn't hen I first replied I now feel you don't have Pv cause your platelets arent high but your hematocrit was. I'm no dr just a confused patient like you but I've been in this rodeo longer. Keep us posted. Good luck Linda
john17871 Zapamania
Posted
Just an update for those going through the same thing. My lettings ended about 3 weeks ago once I hit 41.8%. It went up to 43.1% and this week was down at 42.8%. Appears to be stablizing. Liver is inflamed and fatty (not as bad), but as of yesterday, ALT/AST are back to norm levels of 28/22 (down from 109/110). I assume it's because I quit drinking. Lever doctor wasn't too concerned about the coarsening of the echotexture at the time of the US a few weeks ago. No major liver sympthoms aside from the vague pain (still have, but not as often) I was having and the previous blood levels. Though I've not had an MRI, two doctors seem to think I caught it in time before any permanent damage set in. Reminder, the liver does not appear to be the source of the Polycythemia, it was found on accident during testing.
My hemo doctor is thinking it may be due to sleep apnea or smoking at this point. I have a sleep study set for next month. He told me to hold off on quiting smoking as not to confuse the tests with false negatives (which may be caused from quiting). A week after the lettings quit, I started feeling better. Dizziness is now few and far between. I still get headaches, but not as bad. GP prescribed non-iron multivitamins that seem to be helping a lot. I guess it replaces what I lose through the letting.
One thing that leads me to think smoking is the cause, is that after a blood gas test, my O2 was lower compared to a high carbon monixide in the blood. The ER doctor in the start wrote this off as nothing, but we're now taking a closer look at it. My Hemo said once I quit smoking, the condition could even go away...that would be nice!
During a CT scan, they did find that I had a ministroke back in 2008 (I was never told about it after a scan back then), and one more recently. This would have been before polycythemia set in, so am also set to see a neurologist. The previous COULD be contributing to the dizziness, and it's possible one condition or the other was stumbled unto by accident.
Glad I'm seeing results, helping with the worrying. So now that I'm more stable, want to see what's causing the Poly and now the ministrokes (which could have been from drinking so much). In either case, I guess that I'm doing all I'm supposed to be doing.
julia15874 john17871
Posted
That's really great to hear your feeling better and things are getting sorted John, I was only thinking the other day on how you were. I hope things carry on improving. All the best Julia
Zapamania john17871
Posted
Hi john well some good news. We sure could hear more of that on this line. Yea quitting smoking sounds like it's in your near future. I guess we have to do all we can to help ourselves. Glad to hear this news😊 Linda
john17871 Zapamania
Posted
Just did some research. There's one study and several testimonies that claim Grapefruit, just eating as is or drinking white grapefruit juice, can naturally stablized HCT levels. According to the research, low levels go up, and high levels come down after adding grapefruit to a daily diet. Couldn't hurt, right? There are some drugs that interact with it, so watch out for that. Bodybuilders who commonly have high levels for some reason swear by the stuff. Since I won't be having any bloodwork for the next couple weeks, I'm going to buy some tomorrow and see if it helps to keep my levels down. I'll let you all know how it turns out. If it helps, would be great if it eliminated or at the very least, reduced the number of lettings one needs to have. I'd be interested in hearing any results from anybody here with HCT issues that may consume a lot of grapefruit in one form or another.
Zapamania john17871
Posted
Interesting John but you're right about the interactions with a lot of drugs. I'm on Jakafi and would have to ask doc. I'll let you be the Guinea pig and try it first. I would love to hear of the results. Are you on any meds? If the doc oks it I'll do it. Like you said can't hurt. Linda
julia15874 john17871
Posted
I'd be really interested to hear how you get on with the grapefruit, I can't change anything myself as I'm waiting for a red cell mass test and I don't want to take anything that might conflict any readings so let us know when you get your blood checked again it would be good, I know people who have a heart problem and take tablets have to be careful with grapefruit. X