Platelet level too high?
Posted , 6 users are following.
hello all,
It's been a while since I posted. Went back to work since the beginning of the year. Haven't felt that good for years. I think I have had symptoms at least 2 years prior to my diagnosis, fatigue, migraines, itchy feet. Since starting treatments, venesections and Aspirine, most of it is gone, no fatigue, no migraines and no itching, I feel so much better. I have venesections every two weeks now until my hematocrite reaches 45. The last 2 appointments, it was at 46, but my platelets jumped to 925 the last time. I am worried that my Dr puts me on meds because of my platelets. What is the risks of having high platelets?
I don't want to put myself at risk, but I feel so good right now and I am worried about the side effects of medication.
1 like, 23 replies
Zapamania marie-jos6518
Posted
Zapamania marie-jos6518
Posted
Hi Marie I'm glad you're feeling good but in answer to your risk of high platelets is a blood clot. Platelets are sticky and can form a clot which could cause a stroke or heart attack. My platelets reached 1 million and I finally went on Jakafi. The side effects for me are minimal and my platelets halved dropped to 588 and my hematocrit is 39. I was afraid of the side effects too but mitre afraid of a stroke or heart attack. I'm sure you'll get some advice here. Do some research and come to your own conclusion. Wishing you the best. Zap
richard96620 marie-jos6518
Posted
In Dec 2016 my platelet was 702, after 2 months of taking Hydroxyurea, ( 500mg, twice a day ), my platelet came down to 366.
According to my oncologist, high platelet count have a risk of blood cloat.
If your doctor ask you to take medicine, it is better to take the medicine.
Richard Law....Houston
angela_o..o marie-jos6518
Posted
Hello m-j,
I have been diagnosed for just about a year now. My consultants recommended venesections and aspirin which I did for a few months. But my platelets stayed uo in the 600-700 range. They recommended Hydroxycarbamide but I refused as I hate taking any kind of drugs ( I even don't really like to take the aspirin but that's just me being weird).
So I read up about people who have not enough platelets and read that there are some foods that they should avoid because they lower their platelet numbers even more.
I found out that dark chocolate (90%), wholegrain tahini and tonic water with quinine all lower platelet numbers. So for the last 6 months or so I have been taking 500mls of tonic, 50 grammes of dark choclate and 100 grammes of wholefrain tahini every day. I kept on with the aspirins and now have venesections once every four months.
Last count for platelets was 532 and all the other things were in the nirmal range. The hospital was surprised but said nothing else.
I'm not saying you should do what I do, I'm just saying that strong drugs are not the only answer!
Good luck. Glad to hear that you are feeling better.
marie-jos6518 angela_o..o
Posted
Hi Angela,
I love the idea of chocolate everyday. I might try it, dark chocolate used to give me migraines, I ll see what it does now that I've been migraine free for 2 months (used to have them couple of times a week). Do you eat tahini by the spoonful? I usually put it in humus but never tried it alone. I read pomegranate is also good to lower platelet count. Thank you for the suggestions.
angela_o..o marie-jos6518
Posted
Yea, I just spoon the wholegrain tahini out of the jar and make a pig of myself.
I also drink a small glass of pomegranate juice every day but just because hubby likes to drink it and I keep him company.
I think the tonic water with quinine is quite important. There is quite a lot of evidence that it suppresses platelet production. When people used to use it as an anti malarial medicine they used to have problems with blood thinning though I suspect they were taking much larger doses than it is possible to get from tonic water these days.
Zapamania angela_o..o
Posted
Hi Angela I recently asked my dr about what to eat and drink and what not to. I think by now we all know or I hope everyone knows to avoid foods high in iron. If you don't know, just google foods high in heme. There's a top 10 list there. However, he said I should be drinking water with a high alkaline level. I have found it and its called sport water. So I have been drinking that. Just thought I should post this FYI. It's quite expensive but if anyone is interested and lives in the US, Trader Joes has Te cheapest price. Zap
angela_o..o Zapamania
Posted
Hello zap, I don't think that sport water has hit these rocky shores yet. At least, if it has It hasn't come to a supermarket near me. We have smart water, but that's something that you paint onto objects so that if they are stolen the police can return them to you. Not quite the same thing! Somehow sport water has an unpleasant ring to it - somewhere along the lines of perspiration or old shower trays.
Anyway, I shall keep my eyes peeled for it the next time i'm in town.
angela_o..o
Posted
Just looked at the list of iron rich foods and see that dark choc is amongst them. My treatment so far has been venesections and aspirin. The aspirin helps to stop the blood clotting. The venesections lowered the numbers of the red blood cells and white blood cells but my platelet numbers stayed too high. I then read about flavanols. If you google " flavanols chocolate platelets" you will see quite a few research papers mentioning the effects of eating dark chocolate on platelets' desire to clump together.
As I said earlier, I am not recommending my "diet" to anyone. I only put it out there for anyone passing to look at and think about. I can't say that it an answer to anyone's problems. Here are my readings since May last year when I began the chocolate, tahini and tonic water regime.
Platelets: 732, 665, 680, 665, 617, 576, 532
Haemoglobin: 139,142,140,128,124,130,138
White blood cells: 11.9, 12.1, 11.7, 13.7. 13.8, 11.6, 9.7
Haematocrit: 44,45,44,45,42,40,43,46
It is getting on for five months since my last venesection and I am going for another in the coming week.
Zapamania angela_o..o
Posted
Hi Angela I didn't realize you weren't in the US. The sport water tastes like regular bottled water to me, if anything it tastes cleaner. Basically has no taste. Not funky! Lol. Your numbers look good so keep on doing what you're doing. I don't think any of us know what to do half the time. It's such a rare and confusing disease. So we all just keep on searching and asking and wondering. I don't think there's a majic potion. Zap
frances20411 marie-jos6518
Posted
this means clots in my left leg which could kill me if it got loose and went to my lungs or heart. I was hospitalized on a few occassions and went of xeraltal (I may have misspelled that) but it did help. My current platelets run between 600 and 700 My onocologist wants me to go on chemo med (Hydrox) but I fear the side effects..so I am walking more, wearing heavy duty support elastic hose and baby aspirin. It had brought my platelets down but not to normal. I am in my late senior years and I do not want to compromise my immune system which chemo med can do...I cannot advise you but this is my experience. Walk, stay away from iron filled veggies and red meats, drink alot of water, take a baby aspirin daily and definitely invest in good expensive support hose. Good luck!!
frances20411 marie-jos6518
Posted
Platelet can cause clots (in my left leg) and if they break loose they can go to
the lungs and then to the heart...then death. I have been in the ER with DVT and
put on blood thinner (Xeralto) with success but at present my level is coming down (naturally) from 700 to 600. I do not like meds so i am Walking more, Wearing 30gg support
hose full length (above the knee) and have several pairs so I can wash in between...The support hose is a Must. Do not stay seated for any length of time
(couch potatoe) and if possible raise the foot of your bed...and if you must stay
seated elevate you legs above your heart level. I take a daily baby aspirin and
starting on a program of tonic water with quinine which I understands help lowers
platelets...I also eat raw garlic. I have not been on either the garlic or tonic water
to let you know if this helps...but I will keep doing it for a couple of months.
I wish you luck. I also have a weekly lab done to keep up with the platelet
count. I guess Hydrox helps...but I am having that as a last resort since I
do not like the possible side effects..since it can challenge your immune system.. Good luck
marie-jos6518
Posted
Good News, went for my phlebo last monday and my numbers had gone significantly down. Didn't need the venesection since my dr aimed for 45 or less.
Hémoglobine: 132 started at 196 two months ago
Hematocrite: 42.2 from 57.7
but the platelets are out of control at 954
I hope the venesection pause will help pull them down
I have started to eat better, exercise more and lost about 10 lbs in the last month. I believe it helps. I also eat one grapefruit everyday and drink green tea.
Zapamania marie-jos6518
Posted
Hi Marie very happy to be hear of your good news. I believe you're right about exercise and eating right is also important. I think your plates will go down without a phlebotomy. Phlebotomies rise the platelets. The only thing I'm wondering about is the grapefruit. I know I read somewhere we should avoid citrus. But I don't know if it's people on HU or all Pv people. Maybe someone here can tell us if I'm right. Again, congrats! 😋 Zap
frances20411 Zapamania
Posted
that fruit can interact with meds. I do not know the reason...but I never
eat it..maybe someone can tells us why???
I am presently trying dark chocolate, tonic water, walking and definitely
wearing a 30gg support hose. My platelets did come down and I am working toward the 500 (now in the low 600)..the doctors are concerned once platelets get over 750. I also take a daily baby aspirin. As said before I have had clotting problems long before I knew I had PV
Zapamania frances20411
Posted
Hi Frances thanks for responding about grapefruit and as I remember all citrus. Hopefully someone here can tell us why. Could be med interaction. Glad your plates are coming down. Mine went from 1 million to 588 in less than 4 months on Jakafi. I'll be going to my dr on March 2. Hopefully good news. I'll ask him about citrus if we don't get an answer sooner from someone here. Zap
marie-jos6518 Zapamania
Posted
I think you are rght that grapefruit interacts with many medications. A pharmacist should tell you of it's the case with the meds you take. For now, I only take Aspirin, I don't think it interracts. I read, on many sites, that grapefruits lower hematocrite...I gave it a try. My dr won't tell me of any food to avoid or go for. He won't even tell me exercise is good, I'll try to question more on my next appointment.
Zapamania marie-jos6518
Posted
Hi Marie again I don't remember where I read the grapefruit/citrus conspiracy. Lol. I find it amazing that your dr or my previous dr never told us what to eat/not eat to help ourselves. Let's both just ask @ our next visit and see what we come up with. I know for sure no foods high in iron. I found a top ten list which includes meat, beans, nuts and maybe citrus? I'll try & find it again. Zap