Thrombozytenwert zu hoch?

Allergien, Blut und Immunsystem
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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.

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M

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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

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Hallo Marie-Jos,

Im Dezember 2016 betrug meine Thrombozytenzahl 702. Nach zwei Monaten der Einnahme von Hydroxyurea (500 mg, zweimal täglich) sank meine Thrombozytenzahl auf 366.

Laut meinem Onkologen bergen hohe Thrombozytenzahlen ein Risiko für Blutgerinnsel.

Wenn Ihr Arzt Ihnen rät, Medikamente einzunehmen, ist es besser, die Medikamente einzunehmen.

Richard Law....Houston

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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.

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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.

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Ich habe mein ganzes Leben lang hohe Thrombozytenwerte und hatte mehrmals eine tiefe Venenthrombose

Das bedeutet, dass sich in meinem linken Bein Blutgerinnsel bilden, die mich töten könnten, wenn sie sich lösen und zu meinen Lungen oder meinem Herzen wandern. Ich wurde einige Male ins Krankenhaus eingeliefert und nahm Xeralto (ich könnte den Namen falsch geschrieben haben), aber es half. Meine aktuellen Thrombozytenwerte liegen zwischen 600 und 700. Mein Onkologe möchte, dass ich ein Chemotherapeutikum (Hydrox) einnehme, aber ich fürchte mich vor den Nebenwirkungen. Deshalb gehe ich mehr spazieren, trage starke Stützstrümpfe und nehme Baby-Aspirin. Das hat meine Thrombozytenwerte gesenkt, aber nicht auf den Normalwert. Ich bin in meinen späten Seniorenjahren und möchte mein Immunsystem nicht schwächen, was Chemotherapeutika tun können. Ich kann Ihnen keinen Rat geben, aber das ist meine Erfahrung. Gehen Sie spazieren, meiden Sie Gemüse und rotes Fleisch, die reich an Eisen sind, trinken Sie viel Wasser, nehmen Sie täglich ein Baby-Aspirin und investieren Sie unbedingt in gute, teure Stützstrümpfe. Viel Glück!

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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.

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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

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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.

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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.

 

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Hallo!! Marie: Ich habe seit über 50 Jahren Probleme mit den Blutplättchen... mal so, mal so.

Blutplättchen können Blutgerinnsel (in meinem linken Bein) verursachen und wenn sie sich lösen, können sie in die

Lunge und dann ins Herz gelangen... dann der Tod. Ich war mit einer tiefen Venenthrombose (DVT) in der Notaufnahme und

wurde mit Blutverdünnern (Xarelto) behandelt, was erfolgreich war. Aber im Moment sinkt mein Wert (natürlich) von 700 auf 600. Ich mag keine Medikamente, also gehe ich mehr, trage 30 den Stützstrümpfe

vollständige Länge (oberhalb des Knies) und habe mehrere Paare, damit ich sie dazwischen waschen kann... Die Stützstrümpfe sind ein Muss. Bleiben Sie nicht länger sitzen

(Couchkartoffel) und heben Sie, wenn möglich, das Fußende Ihres Bettes an... und wenn Sie sitzen müssen, heben Sie Ihre Beine über Herzhöhe. Ich nehme täglich eine Babysalbe und

beginne mit einem Programm aus Tonic Water mit Chinin, das, wie ich verstehe, hilft, die Blutplättchen zu senken...

Ich esse auch rohen Knoblauch. Ich war weder mit dem Knoblauch noch mit dem Tonic Water, um Ihnen zu sagen, ob dies hilft... aber ich werde dies für ein paar Monate weiter machen.

Ich wünsche Ihnen viel Glück. Ich lasse mir auch wöchentlich ein Labor machen, um den Blutplättchenwert im Auge zu behalten. Ich denke, Hydrox hilft... aber ich nehme es als letzte Möglichkeit, da ich

mich vor den möglichen Nebenwirkungen fürchte, da es Ihr Immunsystem herausfordern kann... Viel Glück

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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

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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. 

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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

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Hallo! Ich habe auch gehört/gelesen, dass Grapefruit für niemanden gut ist, weil

diese Frucht mit Medikamenten interagieren kann. Ich weiß nicht warum... aber ich esse sie nie... vielleicht kann uns jemand sagen warum???

Ich versuche gerade dunkle Schokolade, Tonic Water, Spaziergänge und trage definitiv

eine 30gg Stützstrumpfhose. Meine Thrombozyten sind gesunken und ich arbeite darauf hin, 500 zu erreichen (jetzt im unteren Bereich von 600). Die Ärzte sind besorgt, sobald die Thrombozyten über 750 liegen. Ich nehme auch täglich eine Babyaaspirin ein. Wie bereits gesagt, hatte ich schon lange vor der Diagnose von PV Blutgerinnungsprobleme.

 

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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

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Wow, I knew that there was something dodgy about grapefruit but I didn't know that it was as serious as this.

http://www.nhs.uk/news/2012/11November/Pages/Prescription-pills-and-grapefruit-a-deadly-mix.aspx

Also, marmalade! Who knew?

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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.

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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