Anyone manage platelet levels with something other than strong meds?

My platelet levels have increased significantly in 6 months since diagnosis in Jan 2012. I now believe that the stress/anxiety has played a big part as no other explanation when for last 10 years they have remained fairly consistent. Nothing else changed in my life apart from knowing I have ET! I am on aspirin but considered 'low risk' so fortunately cons not keen at moment to do anything else! Being 37 I am keen not to start on anything til absolutely necessary. Looking for other ways which might help to keep levels down. Already walk at least 1 hr daily with dogs and have monthly massage. Any advice would be appreciated.

21 Replies

oldestnewest
  • Hey, I was diagnosed around the same time this year, I'm older than you; 49, but I've had ET since I was 42. I have also been given aspirin and after a very short time felt a lot better. I

    was having terrible head pains and problems with my vision. I kept going to the doctors and they kept telling me nothing had come up on my blood tests....Arghhhh. But, now I know what is wrong with me, having had a good response to the aspirin and getting myself a good consultant after first having a nightmare haematologist has at least given me back some control. I think you may have a point about stress/anxiety but I think you have to work out how to get that feeling of control back. My counts haven't been high for ages, but of course who knows what they'll be next time. TBH I have felt a little more anxious after reading all the posts on this website, lol. This sounds really flippant but I think the only way to deal with this is to do everything you can to live a healthy lifestyle, I think that means keeping well hydrated and good vitamin levels as well as exercise, which you are doing, will be all that you can do and leave the rest up to your consultant. As I say, I hate to sound flippant, but stay positive.

  • Thanks Mildred. I do try to be positive but, like you, in some ways this forum has made me more anxious too as well as being more informed.

  • Haha, I like to read what people are saying but then I start thinking about how it might happen to me too. Oh dear. I do know someone who has MS and has spent some years working at dealing with his illness and he has amazed his consultant at Guys by being so well. He has often been quite selfish in a way but he said it was either putting himself first or illness. I do also think that Ourlife is right about not being too worried about taking the medication on offer. I also think that there is a lot of energy surrounding this illness and the medications are being refined all the time through trials and research.

  • Hello Mildred - what are your counts ?

  • They have been around 480 to 520. My next check is in September.

  • Hi rubyrubyruby Firstly I would like to say that I admire you for not wanting to take strong meds - however high counts can cause all sorts of problems. How high are your counts? It seems to me that some people have no problems with counts in 500 plus but in my case 400 is too high and my target range is 350 due to my personal situation. (Although like many people, they have been in excess of 1000). Aspirin does not control platelets it just makes them less sticky; reducing any clotting or thickening risks. I started on HU aged 30 and after 11 years started to become intolerant and was glad to try something new - at that time I was showing signs of thickening blood so had no choice.

  • My platelet levels were 810 about 2 weeks ago. They had been around 5-600 for last 10 years, but had always put down to pregnancy or a virus up until now!

    My consultant wasn't too worried and just said he wanted to see me in 3 rather than 6 months and away I went!

    Tbh I didn't push it because when I read all about the stronger meds they fill me with me fear, so if I can avoid them for as long as possible I will.

  • Wow - my counts are currently 798 and I am really struggling with tiredness/pain/thick blood etc - I look like death warmed up ! However this just proves what an individual illness these MPD's are - I have met quite a few fellow 'sufferers' now and every case seems to be different ! I think the most important advice I have had from anyone is to 'manage your own illness' - it is your body & your life; the haematologists don't know everything - if something feels right; then it probably is ! My personal view is as the normal range is 150 - 400 I think your counts are too high and maybe you should ask for a second opinion in some cases meds are better than the consequences.

  • My haematologist said that he wouldn't look at meds until counts were around 1500 as I am considered low risk! Apparently this is the recommendation! I know my MPD voice buddy was given same number and she is under different consultant and bit older than me.

  • Also I have had blood test results from as far back as 10 years ago when had first child and they have always been above 'normal', sat at about 500. No-one had even questioned it until now!!

  • Don't know if this is of any interest ... I've been trying to research 'nutrition' as a means of effecting platelet level.... I found 2 reports of experiments on inhibiting platelet function through this: one on pomegranate extract and another on red onion.

    Am currently trying to reduce my dependence on medication (daily 500 mg of hydroxycarbamide and 75 asprin) to daily asprin and Hydrx. every other day. Second step to gorge myself on the above and see if there is any effect (bearing i mind it may not be the pom. and red onions!)

  • That is worth knowing. Could you gives anymore details please as I am prepared to try anything!

  • Have just looked at this myself and am off to buy pomegranate juice by the gallons !

    The report I read also said about white meat and fish having more affect than red meat.

    Interesting that there is a lot more about nutrition and boosting platelet levels than reducing. Typical heh!!!

  • rubyrubyruby, am not certain inhibiting platelet function is same as reducing platelet level. Does anyone know and does it matter? NB the article I read said tablet pomegranate seemed to be a bit more effective than the fresh juice. I found fresh joice, not concentrate in Waitrose but it's expensive. Red onions easily found but maybe more socially limiting!

  • Hmmm - I am not sure either. Have bought pomegranate juice in sainsburys and on side of it it said about capsules called pomegreatpureplus. The juice I bought was £2 carton.

  • I'm 52years, I consider my PV a hard warning to come to an normal style of life without excesses (no losing nights, no excessive alcohol, reducing meat, fast food, chocolate, caffe in alimentation ) stay more in fresh air and make sport ,no stress (unfortunately imposible), etc. try to keep avoid other disease so my body to fight only with PV, more I consider important hydratation (arround 2,5-2,8l /day)

  • You could try going to mejthrombocythaemiacommunity.yuku.com and search "nattokinase". A few on this forum are trying this. No experience myself so you would need to judge for yourself

  • Did what Beetle suggested and saw someone had got help from a Chinese doctor/herbalist on foods which thin the blood. Shall follow this up shortly. Meanwhile am drinking my pomegranate and eating red onions!

  • Hi there, just to ask about onions and pomegranate, how do you eat/drink these, fresh or cooked, or both? How eating and drinking these foods help?

  • Light. I'm drinking fresh pomegranate juice (not concentrate) and using red onions both raw and in cooking. I think there was an experiment at the Nutrition Institute (U of Aberdeen) involving onion soup which gave the amounts used. If not Aberdeen it was an Italian University. I'll look back to find source when I have a minute but you might like to check yourself.

  • I stopped eating red meat a few months ago, just eat chicken and fish and lots of veg and fruit - my platelets seem to keep steadily about 520 which my consultant seems to think is OK. Have an appoinment in Haematology beginning of September so will see how it goes.

    I only have aspirin at the moment stopped taking Hydra after about ten years due to side effects which suddenly developed. My skin is very itchy and I develop rashes, does anyone else have this problem?

You may also like...