Well that was a surprise
Posted , 6 users are following.
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....
0 likes, 28 replies
frances20411 julia15874
Posted
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.
julia15874 frances20411
Posted
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
frances20411 julia15874
Posted
or do you drink a lot of water at least 50oz. You must be doing something right. Thank you again for our input.
frances20411 julia15874
Posted
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.
julia15874 frances20411
Posted
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?
julia15874
Posted
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
frances20411 julia15874
Posted
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.
julia15874 frances20411
Posted
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
julia15874
Posted
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
Zapamania julia15874
Posted
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
julia15874 Zapamania
Posted
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.
Zapamania julia15874
Posted
Well I don't blame you. A celebration is sure in order. Happy Birthday🍾🍰 Linda
julia15874 Zapamania
Posted
clem19079 julia15874
Posted
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.
julia15874 clem19079
Posted
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