Hematocrit Levels Stable
Posted , 5 users are following.
I little review. On 10/8, reported to the ER due to dizziness. Hematocrit was at 59%, Hemoglobin at 21. Started blood lettings right away, which continued weekly until 10/25. Since, I've made some diet changes, not a lot, but more or less at least watching what I eat. I've also quit drinking every night, which I think played a major role. I smoke, but this has gone unchanged (trying to quit though). Here is my hematocrit history since letting began:
10/08/16 59.8 (Hemoglobin 21)
10/15/16 53.1 (Hemoglobin 15.6)
10/25/16 49.2
11/01/16 42.8
11/02/16 41.8
11/08/16 43.7
11/15/16 42.6
11/22/16 43.6
11/29/16 42.6
My question is, if this is truely Polycythemia, whether it be primary or secondary like my doctor thinks it is, shouldn't my levels have started to go up by now? Since this is my first cycle, I'm not sure how quick they're supposed to rise. However, given I hear most people have lettings at least every other month, seems it should be going up by now.
0 likes, 17 replies
Zapamania john17871
Posted
Hi John I've had my platelets go down almost 400 pts without any treatment in 6 weeks. Also go up 200 in 6 weeks. This disease is very strange and unpredictable. As I was told it waxes and wanes. It can also become indolent meaning no symptoms almost dormant. I was just @ the Drs today. My platelets went down 110 pts and my my hematocrit from 44.1 to 40.0 in 2 weeks. But I am on Jakafi for a little over a month. You're doing well though. Linda
julia15874 john17871
Posted
Firstly I'm pleased things have stablised more for you, I too have had a diet change and my levels dropped but I cut out all iron rich food, because when I had eaten them my symptoms were worse and I was getting increasing pain around my liver area, more dizzy and feeling horrible and tired, however my heamotologist has asked me to start eating normally again because he wants to check my iron levels as he's thinking heamocromitosis is the reason I have polycythemia now. To answer your question is if you have PV I'm sure your levels rise despite what you do because it's a disease within your bone marrow, a type of cancer, but secondary polycythemia can be improved by changing what ever the reason for your high counts were, for an example to stop smoking if that is the reason, then over time your red blood cells will improve.I'm not sure if drinking alcohol can be a reason you get polycythemia however it can contribute to dehydration which is not good for you if you have already got thick blood. So I think if your levels are not rising that quickly and your secondary then your healing yourself probably as long as you continue to get checked John. Were you ever checked for iron overload? x
john17871 julia15874
Posted
Just an update. Same question still applies really. Two weeks ago, HCT was 42.6 down from 43.6 in the prior week. Same diet, regular eating with the addition of more water and grapefruit daily, no alcohol. Today my results were 40% HCT. I know i'm new to this, but I figured it'd be going up by now since the lettings stopped over a month ago.
I'm taking wellbutrin to help with smoking, maybe I'm smoking less, can't say for sure. I know the cravings aren't as bad. To answer your question Julia, my iron levels are normal. I'm thinking (and hoping) that smoking and/or sleep apnea are the culprits. I have a sleep study this month, but I know I wake up gasping for air at times, especially back when I drank.
Dizzy spells and headaches seem to be few and far between now. Abdominal pain, including the liver region, seems to also have improved some. No doubt that part was likely from drinking. Hoping I caught that in time before the liver was seriously damaged. Will keep you guys posted.
julia15874 john17871
Posted
Hi John I'm so happy things are going the correct way for you and your getting your bloods checked regularly. I've had additional blood test today, for ferritin and thyroid and another full blood count. I'm seeing a new heamotologist in January hopefully to get more answers as I don't drink a lot or smoke. My GP told me today that since July when I first saw my Heamotologist I should by now gave some diagnosis to why my blood levels have increased, she said he should of checked my thyroid and ferritin, I should not if needed to see her again otherwise what was the point of been referred, I totally agreed with her and told her Im glad I've got support from from her. I wrote to Clare Harrison and sent her all my blood results and she was very kind to write back with support and she sent me a name of a heamotologist that specialisers in MPN near me, so I'll try and see her in the new year. I'm still dizzy and I've all the symptoms but trying to get on with things for now, I'm just hoping 2017 will bring me some news on why.
Zapamania john17871
Posted
Hi John just read your post. Glad to hear your HCT is going down. I don't think alcohol & Pv are a good match. Keep doing what your doing. I think you'll see some more great results. Linda
julia15874 Zapamania
Posted
I'm not good if I drink alcohol, my symptoms are far worse, it's horrible so I am really careful now. Jx
Zapamania julia15874
Posted
john17871 Zapamania
Posted
Thanks guys for your support. Julia, I hope they find the cause soon. I think like you, my doctors are pointing to secondary causes. I know drinking alcohol isn't generally a cause of this, however, it CAN cause sleep apnea, which seemed to be far worse when I drank. Just wondering if drinking may have been indirectly related, meaning maybe it caused the apnea, which later caused the polycethemia. Time will tell I guess, seems waiting for answers is the hardest part.
Julia, how are your HCT levels? Even after mine got where they needed to be, it took a few weeks for the dizziness to subside. Another thing, and I think this affected myself as well, is that after getting a diagnosis such as PV or secondary, I believe it can result in a type of depression and anxiety that somehow amplifies the symptoms. My doctor mentioned it and it kind of made sense.
john17871 Zapamania
Posted
Oh, and Zapamania, how's the Jakafi treatment going so far? I hear the drug has lots of promise. I know earlier you mentioned an improvement in as little as two weeks. Haven't found any recent studies, but from the sound of some reports, it very well could improve the overall prognosis of patients with PV.
julia15874 john17871
Posted
I'll know next week, my heamocrit at the highest was 0.53 and heamoglobin17.4, then it dropped to just above high, so I'll see if it's higher again next week I'll let you know?
Zapamania john17871
Posted
Hi John the Jakafi for me is going pretty good so far. I've only been on it under 2 months and my platelets and HCT have gone down. So far so good. I'm going to the dr today and I'll let you know if There are any more improvements. Linda
Zapamania
Posted
Hi John went to dr today. My platelets dropp dropped 50 pts since November 30. 11/30 685 today 12/15 634. My hematocrit is 39. This Jakafi is definitely working with minimal side effects. Finally I'm seeing some good numbers. Hoping the same for you & all of the Pv people. There is hope.
john17871 Zapamania
Posted
Great news! Sounds like the drug may turn things around for people with PV.
One thing I've been meaning to ask my doctor, is that we all know they say life expectancy of PV patients is 10-20 years...though it's likely longer now but I don't know of any recent studies. But here's the thing, if fatalities occur primarily due to stroke (I could be wrong), then why is this the case if a person keeps HCT levels down via lettings and other treatments? It would seem that if the condition was managed, then lifespan would be normal. Of course, I do hear PV can lead to complications other than stroke, such as leukemia, etc. That may be the reason for the 20 year cap. I guess there's more to it than HCT levels alone.
Zapamania john17871
Posted
Thanks yea there's more to it than strokes. It's the thickness. & stickyness of the platelets that could form a clot & hit our brain lung or heart. And yea the leukemia factor.
richard96620 john17871
Posted
john17871 richard96620
Posted
Not really. Only new things would be way more water and a grapefruit each day and/or grapefruit juice. I also started vitamins with no iron and milk thistle to potentially help the liver. I also take the daily aspirin as a precaution. Started the grapefruit because of an isolated study, I figured it couldn't hurt: https://www.ncbi.nlm.nih.gov/pubmed/3243695
richard96620 john17871
Posted
Thank you for the feeback.
Beside hydrea, I am taking black wood ear, it is a fungus eaten by Chinese, it has the effect of blood thinning. (it is a substitute for Aspirin....Richard