Just thought I would let you know this as it changes everything I ever thought, got my blood test back from last week and my bloods have considerably dropped, I've not had this in two years! My heamoglobin has dropped from 174-152 my heamocrit had dropped from 0.53-146, these levels are really good!! I can't believe it! I am actually over the moon, however my question is can this happen as I'm hoping they stay like this and not rise again, with poly can it fluctuate? My heamotologist said he would give me a red cell mass test to see if my red blood is normal for me, but clearly the higher levels are not okay for otherwise my blood would of stayed the same??? Not dropped, can any one make light of this is it something that happens, because I'm thinking of not having the red cell mass test and asking to just be monitored every three months? Do u think that's wise? The dizziness is still there a bit though! This is so strange. Has this happened to anyone else? I've not anything to change things, my weight is the same etc....
Please let me know what you did to lower the numbers??? Was it an oral med...
if so what did you take and how often. Thank you for your reply.
I have had PV for @3yrs. and was a regular on this site...but I developed a 4th
different cancer so I have not been able to keep up the corrrespondence until
now. Again, I would appreciate your answer/input.
Don't know why I got all that wrong my heamoglobin was 173 dropped to 153 and my heamocrit was 0.53 and gas dropped to 0.46!!! Very strange
Hi Julia well glad to hear God news. You must be so relieved. As far as could it happen again the answer is maybe. It's happened to me quite a few times. One dr explained to me that this disease waxes and wanes. But don't worry about tomorrow enjoy your good news and breathe. I would go a little sooner like 6-8 weeks. However follow your center. Linda
Frances, I'm sorry I've done nothing, I've not been diagnosed with polycythemia Vera I'm still in the diagnosis stage, so I'm still not sure if I'm secondary or primary as I've had no phlebotomies (venesections) my bloods have been high for two years with no change, then out of the blue they have dropped almost to normal levels, I'm gob smacked, it changes everything, I'm thinking I'm better been monitored now only, I'm either in the early stages of something or I had something or this is just catching my blood on a good day. I'm not sure if this can happen with polycythemia, I've asked for a copy of my blood work just to see what all my levels are. I'm so sorry but unfortunately for your diagnosis of polycythemia Vera things for you are not as good, yours is a very serious complex illness, I don't think I must have it myself as I have no mutations and Ive a normal epo, I also would think that my levels wouldn't drop so unexpected without any medication, out of he blue if I had PV unless I'm in some early stages of it. So sorry I can't help you I wish I could x
What happy news for you. I am curious about your diet...are you a Veggie
or do you drink a lot of water at least 50oz. You must be doing something right. Thank you again for our input.
Thank you, Have yours changed so dramatically too? this proves one thing, 174 and 0.53 are not my new levels they were high for me? I feel like celebrating today, I'll wait till Thursday it's my birthday then.
Again when you are able please let me know your regular diet and how water you drink each day and also do you Walk and for how long a time.
I note that there are many replies on this site and I do not want to miss
your answer to any of the questions listed. Thank you so much.
No not a veggie, but I must say I've cut a lot of red meat out of my diet and I've eaten more fish, I do drink a lot too (water 😜
I'm trying to loose weight and I take a baby aspirin a day too, ivecut back on the exercise but I'm slowly going to build that back up. I've also started taking non iron vitamins. But please talk to your doctor before taking anything first because you PV as I'm no doctor. Think been sensible is the way. Im not sure if having good sleep has helped too, I was not sleeping well as I'm hubby snores so four month agin I started slipping away into the spare room so maybe that's helped too. Who knows, I'll know more after my next one won't I?
I also eat a lot of red fruit like raspberries and strawberries. If I'm PV I won't know now for a while as I'm going to just ask to be monitored by the doctor unless there's a big change in my blood rising again, then I'll ask for a BMB. But again please be careful, if your a true PV person because good that's okay for me who does not have a diagnosis might not be good for you. Xx
Well I don't blame you. A celebration is sure in order. Happy Birthday🍾🍰 Linda
Thank you xc
Amazing!! Without a doctor recommendation I too cut out red meats
and do NOT take any iron in any form. I do not like water but I do
drink at least 40 to 50 ozs a day...nothing else. I should walk more and
the results are: My HCT number etc have dropped from 55 to 43 I also
have blood (phlebotomy) taken at 44. Unfornately I there are nurses in the clinic I go to in America that have ruined a couple of veins. This clinic is connected to a large University in California UCSD..it is funny how one can change doctors but not nurses...I am a widow for several years and I am in remission of 2 of my cancers...thanks be. I am a senior female and a church goes so I believe also in prayer. Thank you
for your replies.
doctors but not nurses.
NOPE, Don't leave gaps between appointments other than what your doc recommends and yes it does flucuate. I have seen visits where everything is great only too have to fone the hospital for a very early appointment, i frlt so ill. So you can change in either days or mths. But never leave large gaps between appointments as you dont know the minute you will need to return.
Thank you Clem, I thought that might be the case, I won't get too excited yet!! Perhaps a few more normal ones, I must say that it prooves that the higher levels are not normal for me otherwise it would of stayed the same. I've still got the symptoms though which is frustrating! X
Ouch sorry to hear about your veins, my arms have been sore from the phlebotomist trying to get the blood out when it's thick. But nothing quite as bad as that xx
Hey Julia.... Glad to hear your levels have dropped... Curious, what time of the day did you get your blood drawn? I've experienced the same thing, but in my case, my levels normailized in like 3 days and were even better two weeks later, which made absolutely no sense to me. So I did a little digging and discovered that most people have a high Hb and Hct in the morning, and that throughout the day, your levels will drop. Most of my previous blood work was being done in the morning, so, after getting some high results (back on Sept 5th in the morning and at the hospital) I decided to wait until mid afternoon when my Dr Internist sent me again 3 days later... Wha la... Normal....! And well within the normal range, like back to where I have always been... Went again 2 weeks later, mid afternoon again, and wha la... all normal... I emailed a specialist who works a lot with PV and MPN's, and he said, the first thing any hematologist will do, is determine if the counts are a relative level, that is, is the plasma volume high because of dehydration or simply because they're high in the morning... So, in my case, yes, it has happened to me as well... Last year, same thing, i had blood work done in Jan, my Hb was 17.6, so just slightly over, waited 3 months, repeated blood work, and my Hb was 17.4. Nevertheless, I am still worried because of the itching, which I still have, and as far as I can tell, its my only symptom, if I have one...
Hi Kevin, all my counts have been done on a afternoon around 4.00/5.00ish the one I had two months ago was 174 heamoglobin and 0.53 heamocrit and I was well hydrated that day. I was getting excited about it then my doctors phoned she wants to see me as she said to go from 174/153 in two months means my bloods are unpredictable and she wants to talk to me about something else on my blood test so my joy has turned to worry now! I see her Wednesday xx
Ugh.... Sorry to hear that Julia... Did you ever confirm your EPO level, as your hematologist you had said, had told you two different numbers? I'd confirm that... I know its hard, but try not to worry Julia, its probably nothing. So frustrating!
No I didn't get to know, I forgot about that but tell everyone it was 8 because when he told me the first time he had rang me specially wth the results about the epo, the second time he didn't so presume he didn't have the correct paper work with him and last time he phoned he told me that all my tests were normal so I know he was meaning epo and JAK exon 12, so presume when he said 3 he had got it wrong, which is the best way round for me, When I see him again I'll ask him about it though. X