Thrombocythemia

 

On 8/20/2008 wizard wrote:

I was diagnosed in May 08 with this.....I live in the US.. My doctor informed me that  this is very rare and that there is not a known cause as to how you get this... Also as long as it is treated and maintained you can live a long life.. This has been a very scary experience for me I was never really ill before and was having blood work done for a colonoscopy and it was detected then.... I have been taking hydrea , they have changed my dosages about 4 or 5 times to get it correct , I have had platlet fresis 2 times.... Finally it seems to be maintaing around 234 which it was at over 1.7.... I havent heard fronm anyone dying from this... There have been draw backs in my life , I used to be very active, now I can maybe  do 1/2 of what i used to be able to do < the hydrea makes me tired, I have been having anxiety issues due to this  but that is also treatable... Just make sure that you dont over do it  and when you feel tired rest...........

 

Thanx for your reply it was very informative, please keep in touch i need to know more about this condition. Im not on any treatment right now, should i be?

Thank you, your info was very useful, you are a God sent. It helps to know i dont need to be on Treatment its comforting, it means this is not as terrible as it sounds. Thank you

Your welcome...It is very comforting to know that you dont have to have treatment..I think the worst part of this , was trying to get the treatment right... And of course the anxiety issues but that was due to not knowing what was going on and they scariness of it being so unknown.... Just remember if dont over do it, When I over do it, my legs start to ache and I get headaches..Which I guess is common that you will hve aches and pains,,,  

I discovered that I had an elevated platelet almost 2years ago. I visited a Hematologist and she said that I will not need treatment for awhile as long as my other blood account is ok. When my platelet raise to 900, she decided to give me Hydra but I stop it after one week after learning the side effects.

I am taking herbal blood purifier, garlic, vit.E but sometimes I take aspirin when I dont feel well .

Have you heard of this natural cure for thrombocythemia and anyone really tried it? 

Thrombotab and Bromarex.  I order one of this supplement but it's been 4months already and I didn't recieved my order.

Hi, I am curious of your progress in taking CMD. Is it effective? I am interested of this product also. Are you from Philippines? Who is your hematologist?

 

On 10/26/2008 emaan wrote:

I discovered that I had an elevated platelet almost 2years ago. I visited a Hematologist and she said that I will not need treatment for awhile as long as my other blood account is ok. When my platelet raise to 900, she decided to give me Hydra but I stop it after one week after learning the side effects.

I am taking herbal blood purifier, garlic, vit.E but sometimes I take aspirin when I dont feel well .

Have you heard of this natural cure for thrombocythemia and anyone really tried it? 

Thrombotab and Bromarex.  I order one of this supplement but it's been 4months already and I didn't recieved my order.

Hi did you ever receive your order?  If so did it help at all?  I would rather take natural stuff then drugs.  Especially that I do not have fatigue or headaches and I do not feel like taking a medicine which is going to inpair on my life more then the disorder itself.

cheers

When I got pregnant with my second son at 30, my initial blood work came back with platelette counts of 1800!  Scared my OBGYN to death!  Of course I knew nothing about it, so if HE was scared, I was certainly scared.  Started going to an oncologist who worked very closely with my OBGYN sharing notes throughout my pregnancy.  In the 7th month of my pregnancy I started giving myself daily Heparin injections.  At 7.5 months my water broke, again my OBGYN was shocked (I have THE MOST WONDERFUL/SENSITIVE OBGYN in the world:) 

In looking back over things they discovered from some past blood work I had this condition for several years, just not with such a dramatically high count that would have caught anyone off guard.  My OBGYN read up on my conditon before the delivery and found out that ET can cause the placenta to prematurely age (which they sent off and verified to be true in my case). 

Over the past 2 years my platelette count has gradually went down to 700, then back up 6 month ago to 800, then last week they were up to 1200 and it's time to think about drugs to reduce the count.  I have absolutely no symptoms what so ever?  So my Oncologist keeps telling me, "this shouldn't have too great of an impact on your life, until much later in life" and I'm like "What's the impact?  Is it going to progress into something?  Am I just going to be at risk for blood clots/strokes?  What does this disorder do?"  And I look online and it talks about the definition of the disorder but there are no details about what I should look for it to do later in my life? 

hi guys I am from Austrlia I am 51 I have had ET for about 12 years I probably had it longer they just found out by routine blood test.... I am never sick and I think  a lot of it is in peoples minds becuaes they think its  a bad thing....  I hade a count over 1.5 million.... I Take Hydrea and asprin I have never had any side effects and i work full time  (about 45 hrs aweek) I am fit and I look about 45 (so I am told) I think I got mine from enviroment I was a hairdresser fory ears and i have done research on Benzine there have been cases found from people using benzine Have any of you had the JAK2 Test done they now know of an acquired gene.....You will all live the same life span as if you didnt have it... The only down size I have found is while travelling o planes Insurance wont cover you for DVT ... But I have a needle to thin blood when travelling.... Do you all relise that many people have this condition but go un diagnosed  ... So all smile all is good ... Denise from Australia.....

Hi Denise

Good to hear such a possitive message,and I agree attitude has a lot to do with how you deal with ET.

 I am also in Australia and have been On Hydrea for over 3 years for ET.   Can I please ask have you been on Hydrea for the full 12 years?   I find taking Hydrea is the worst part of the treatment and am worried what long term effect it is having on me.

 thanks   Carmen

 

On 6/21/2009 defromAustralia wrote:

hi guys I am from Austrlia I am 51 I have had ET for about 12 years I probably had it longer they just found out by routine blood test.... I am never sick and I think  a lot of it is in peoples minds becuaes they think its  a bad thing....  I hade a count over 1.5 million.... I Take Hydrea and asprin I have never had any side effects and i work full time  (about 45 hrs aweek) I am fit and I look about 45 (so I am told) I think I got mine from enviroment I was a hairdresser fory ears and i have done research on Benzine there have been cases found from people using benzine Have any of you had the JAK2 Test done they now know of an acquired gene.....You will all live the same life span as if you didnt have it... The only down size I have found is while travelling o planes Insurance wont cover you for DVT ... But I have a needle to thin blood when travelling.... Do you all relise that many people have this condition but go un diagnosed  ... So all smile all is good ... Denise from Australia.....

Hi there.

Well said. It dosent help what the doc's say sometime mind. Im 45 and have been on the Hydrea for three weeks. My plt count was 2million two weeks ago. Now it's 1.5 million. Going for my weekly visit to the vampires tomorrow. Hopefully it will have dropped a bit more. Shame about the drink but if thats what we have to do so be it. Im drunk on life anyway!!!!!

John from the UK