ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Thursday, November 15, 2012

What Do You Think II


Anthony Heard came up with our ITP question of the week...

Despite what your doctor or specialist may have said WHAT DO YOU THINK MAY HAVE BEEN THE CAUSE OF YOUR ITP, WHAT DO YOU THINK MAY HAVE TRIGGERED IT ? 

Anthony commented, "I would just be interested to hear what other ITP folk think. I have my own theory about why my ITP started but my specialist says no. For the record I think my ITP started as a reaction I believe my immune system had to a bereavement (that is what I think but who knows, it's as good a theory as any). Would be interested to hear what other folk think.

Give us your thoughts by leaving a comment about this question. 

Greta Burroughs
I think mine was triggered by stress. My parents were both undergoing chemotherapy and I lived too far away to help them. At the same time, my husband had three stents implanted around his heart resulting in his aviation career coming to an end. I was worried sick, hyper and lost a bunch of weight. After a year of self-induced stress, I was diagnosed with ITP. 


How about you? What do you think triggered your ITP?


23 comments:

  1. My first pregnancy. MY blood work was normal when I had my first pre-natal OB GYN appointment. But months later, when I arrived at the hospital in labor (a few days before my scheduled csection), blood work was done before the surgery. It revealed an abnormally low platelet count. The OB GYN who was on call that Sunday afternoon and who happened to be the high risk specialist in the group, thought the hospital lab had made an error in the count so he ordered another test, which showed it even lower, and then one more time, even lower. So having gone through all illnesses and medications I ever took, the conclusion was that it was most likely pregnancy-induced.

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  2. I think mine was triggered by the daily dose of 325mg aspirin that my cardiologist had me on as a blood thinner (instead of warfarin). I took one a day for almost 2 years before ITP hit. But I do have to admit that a month before I had a 0 platelet count, I had the worst cold ever that lasted for almost 10 days.

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  3. I have no idea?.... I was diagnosed five years ago, 2years after my youngest daughter was born, I was feeling tired all the time, I have had thyroid problems in the past, so thought, that it may have returned, but was shocked find that I had ITP my doc, referred me to hematology, where I thought I would get some answers, but no... seems he didn't know much about ITP, and my tiredness had nothing to do with ITP.

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  4. I think mine was a reaction to the sun.. I had the red spots on my stomach but didnt think much of it.. I always had reactions to the sun since I am a redhead with light eyes. it camenj and went so didn't think about it that much. then when mom was sick with cancer and I was severely stressed, the spots came back when we went on vacation at Universl. I thought they were bed bugs. Mom died in 2007. We sold the house in 2010. Meanwhile I was working two jobs and Volunterring full time for Cat Network. After we returned from a trip to wine country, July of 2011, I was diagnosed in August 2011.

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  5. ok Lets's try this again, I tried to do this earlier from my cell phone . had everything written down and it disappeared LOL

    oh well... Yes I do believe my hematologist is right after all these years. Over the course of the last 6 years we tried to pin point what could of caused my ITP, but never reached a solid conclusion other than the possibility of it happening in women after the age of 35...

    until I finally shared with my hematologist, recently that I was exposed to TB in 1999 and the Health Dept almost quarantined me till all of my test results showed no traces of TB... but because they were afraid of outbreak, I had to take one of the medications, INH which is used to treat TB in patients for 6 months as a preventative measure and be monitored monthly with CBC for 5 years along with Chest X ray once a year for those 5 years.

    In August of 2003, one of my CBC results came back with a platelet count of 24,000, drastically dropping from what it had been in the normal range.... I was referred to a hematologist from my PCP and thus diagnosed with ITP.. for 6 years I lived with the low counts in the range from 50-60k until 2003 when I had my first major relapse and my counts were spiraling out of control, which led to my splenectomy...

    INH is an extremely strong medication with adverse side effects.
    Liver and kidneys at risk from this medication alone...
    not quite 6 months of taking it, my liver counts started to show bad results, and the INH was stopped...

    my hematolgist was stunned when I told him they made me take INH and I showed no symptoms or test results with anything remote traces of TB.. this medication like others on the market is very dangerous and can lead to other health problems... My hematologist strongly believes that the adverse side effects of INH did indeed bring the onset of my ITP

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    1. Jackie, I have a contact here in the UK who got ITP a year after having TB. I dont know what medication she was on for her TB but I will find out.

      I am aware that ITP can develop after a virus, infection, reaction to medication and I imagine something like TB and the medication used to treat it may well be a trigger point for ITP. If there is some common ground it surely MUST be something that should be flagged up to the doctors when treating TB and be more aware of when deciding what to treat it with.

      Anyway, I will ask the person concerned over the week end and see what medication they were given for their TB.

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    2. Iwas diagnosed with ITP in Oct. 2008. My oncologist said that most women over the age of 65 develop this blood disorder. The only thing I recall as a child was having bloody noses. Another thing I can add is I have Thalissema which I inherited from my Father(Italian)I was told this might trigger it too. I had the whole nine yards from Predisone to ending up with 8 treatments of Rituxan. My platelets go up and down. I get them checked when I visit my Doctor for a check up. I was told my hematologist if I should get the rash again on my legs or upper body I should make a trip to the Er. As of this email I would say I must be in remission as I am holding my own. Thanks for letting me be a part of your group.

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    3. Thank you Amelia. I hope your remission continues forevermore.

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  6. I believe my ITP was caused from a root canal that I had done last year. Had second phase done six months later because of insurance. My dentist felt that I had a infection that was brewing in my body for that whole time, I had started having lots of bruises and bleeding, my dentist had a terrible time getting my mouth to stop bleeding, I had a huge bruise in my mouth that then became absessed. Was placed on heavy duty antibiotics, I then went to my PCP and he ordered blood test, received one of those Saturday 7:00 am phone calls to get to emergency immediately, 4k, no shower, no bumping of head, and here I am with ITP.

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    1. Hi Linda, I was diagnosed 10 years ago, 3 months prior to loads of bruises and ITP diagnosis, I had root canal dental treatment. I didnt have any problem with infections etc, but do wonder if this somehow contributed?

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  7. Some really interesting responses and they all confirm just what an enigma this ITP really is.

    I had always beleived that my ITP was a reaction my immune system had to a bereavement I suffered in 2004. I was eventually diagnosed in July 2006 but realise now that the first signs of ITP manifested themselves in September 2005 when I first started getting random bruises. BUT looking back now I think my opinion is shifting and it is actually partly due to some of the answers quoted earlier in this blog and other knowledge I have gained.

    Like Greta I has also thought ITP could be stress related but my specialists have always said no. By conincidence like Linda I also had route canal treatment about 4 months before my ITP first started producing random bruises. Obviously I did not know it was ITP then.

    So my conclusion is that my ITP could well be a combination of events which triggered my immune system to go into melt down.... a bereavement, work related stress and then root canal treatment may all have combined to send the immune system into a tail spin. My specialists I am sure would say no BUT they would never come up with any other credible alternative.

    Anyway, the good news is that since I was diagnosed in 2006 the number of treatment options for ITP has increased and the knowledge and understanding of ITP and immune system related illnesses has improved significantly. The excellent news is that the research, scientific and medical communities are all showing a much greater interest in investigating ITP and immune related illnesses.

    Here in the UK I know that the ITP Support Association are currently analysing 8 applications from research teams who have applied for funds to research ITP. One of these is research into ITP and pregnancy.

    So there are reasons to be optimistic, albeit we have to keep the awareness of ITP on our agenda all the time. We must also keep talking about ITP, sharing our experiences, asking questions and challenging perceived knowledge because if we dont we will not keep pprogressing toward the answers and cure/cures.

    We may be few, we may be rare but we are stronger together

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  8. Thank you everyone for your comments. Like Anthony said, our doctors or specialists may not agree that there are many factors that can lead to ITP, but as victims of this terrible blood disorder - we know it is true.

    Ros Bryan could not get google to cooperate so here is her comment:
    I think mine was 11 yrs of having consecutive Depo pill injs, in hindsight stopping my period on purpose for 11 yrs was a very unnatural thing to do !!!

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  9. I think my ITP started because of stress due to a bereavement and serious work related stress. I have also been in contact with someone who had TB so was interested in the previous comment. I was in long term contact with the person and did feel that my immune system was fighting something as I was feling unwell and tired. I did not take any medication but was monitored by Xrays for two years. My mother died of Hodgkins disease and seemed to have a lot of problems with her blood all her life I do not know if there is any connection to ITP. She died in 1968. I am also very sensitive to the sun I have red hair and fair skin. This sensitivity was made worse after I had to take amiodorone for Atrial Fibrilltion. I had to stop taking the medication because of severe rashes. This has continued for years after I stopped the medication. Since I have had ITP I have noticed the times my platelets go down is when we have a few days of very hot weather I get the rash then as well. I have been interested in other peoples comments and it seems there are some possible links.
    Valerie

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  10. I think my itp was caused by a needle stick injury at work or the hep B immunisation i had as a result of this. But doctors say they can't confirm this.

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  11. I think mine was stress of about to lose our home and celexa. The doctors say it was the perfect storm.

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  12. I truly have no idea what kicked off my ITP. I have run it over & over & over again, replayed different days & events and come up blank. So not to drive myself crazy I work with the day I am given. One at a time.

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  13. I believe it was caused by a Group B Strep Infection that was passed from my mother to me when I was born..

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  14. Really interesting reading all the comments above. I was diagnosed 10 years ago - previously in good health. Sudden excessive bruising and pettichia and blood blisters in my mouth - all seemed to come out of the blue - then followed 5 years of platelets under 10, then 5 more years (up to present) where they have crept up to between 40-80. I was interested to read Linda's comment above - just prior my bruises appearing and my diagsnosis, I too had root canal dental treatment. Who knows - could this have been a contributing factor?

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  15. I am kind of a little late posting a response....but I was diagnosed with ITP 5 years ago...during a gluten challenge...three days into the challenge I developed bruising, bloody noses, and bleeding gums. So I believe my illness was triggered by gluten. I was also diagnosed with Celiac Disease along with ITP.

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  16. Reading the comments here got me thinking deeper about my daughter's ITP. She was diagnosed in 2010. Was 8 weeks premature, always had bruises but what kid doesn't, had a few caps put on teeth at age 3 then root canal thru a cap at 4, at 5 she developed a mild sun "allergy" - under eyes swollen & face red & blotchy like hives, teacher noticed "wicked bruising" in kindergarten & called me concerne...I assumed rough housing with her brother was cause. We lost my mom that same year. By age 6 she looked like she had been beaten black & blue so I took her to family physician who asked that we wait to run tests since drawing blood is so traumatic for kids...a month & a half later she had a softball size bruise as black as could be on her stomach. I demanded blood work be done then, they called later that day to admit her to children's hospital with a count of 14,000. The hematologist thinks she caught a virus that attached to platelets & now her body thinks platelets don't belong.

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  17. Thank you everyone. I really enjoy reading the comments. The "I" in ITP originally stood for Idiopathic. I guess that still stands because no one can say where or how ITP begins it's ugly warpath. It's different for everyone!

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  18. I'm not sure what triggered mine. This is the 2nd time I've had ITP. The first time was 17 years ago, and I don't recall any stress, as I had just come back from Mexico on vacation, but it is possible I picked up a virus that caused the spleen to go haywire. This time, it is quite possibly stress induced due to the death of a co-worker, or I also had a throat infection at the same time....so your guess is as good as mine. My platelet count was down to 2, up to 6 the next day, and am having another blood test on Monday & an appointment with the hematologist on Tuesday to see what can be done. Have been put on a dosage of 80mg of Prednisone (yuck) and will be on this dosage until my platelet count is at least 50. Still a long journey back to normal count, but holding in there. Glad to have found a support group this time around!

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    1. Trina,
      There are a number of ITP support groups on Facebook. PDSA and the UK ITP Foundation both have open groups. There are also some closed groups. If you email me, I'll give you some more info about the groups. greta799@yahoo.com

      This goes for any ITPer or caregiver who is interested in joining in a discussion/support group.

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