ITP Personal Stories

Hair Today, Platelets Tomorrow

On August 2, 1999 at age 66, in what I thought was very good health, I was diagnosed as having ITP. "It" happened in the wink of an eye. The overcast morning (in Golden Valley, AZ) began with my bike riding at 7:30 and then a bit of yard work. That evening I was in ER in Kingman with a platelet count of 1,000, the bleeding mouth and spots.

Late afternoon on August 3rd I was airlifted to Vegas to a cancer clinic and a magnificent team of doctors. The results of a bone marrow biopsy and CAT scan were normal. Eleven (11) days later I was discharged with a platelet count of 41,000. I couldn't be released until the count was 20,000. The doctors (I learned later) were most concerned that I was not responding to treatment.

I had similar symptoms as everyone taking Prednisone, plus hangnails on every finger/thumb. "Hair loss" started in early September. I blamed that on steroids....wrong. With doctors' approval, September's end saw us on a 3-week motorhome trip to Oregon - platelets checked weekly and steroids decreased accordingly - down to 5 mgs./day upon our return. Mid-Oct., off Prednisone and on "withdrawal". EVERYTHING got blamed on Prednisone.

On a regular basis I visit "my" chiropractor - Dick. During my visit mid-September, he tested me and found my pituitary gland malfunctioning, gave me supplements and after our trip, I saw Dick - he was pleased with the pituitary's testing. Upon my request, he tested my thyroid and found that was not up to par - so supplements for that were given/taken.

I lost about 1/2 of my hair (sprinkles - not clumps) - and was stumped because I couldn't find in our Pill Book where "hair loss" was one of Prednisone's side effects. I did a study in our MEDICAL book and eventually found (under hair disorders) the reason. Hair loss is a symptom of a malfunctioning pituitary gland due to an inadequate supply of blood (excessive bleeding) and the loss will continue for 3 or 4 months AFTER the gland is back on line. (The pituitary tells the thyroid what to do...)

Every day was a "bad hair day". I used hair spray to create a "do" and felt every droplet on my scalp.... I prayed about this and found a wonderful beautician who works with cancer patients and knew all about "sick hair" - which she said mine was. Through her, I ordered two wigs and life was much better. I take biotin and zinc (health food stores) for "hair" and as yet I can't see where it's coming back - but it surely is a darker color.

January 28, 2000 - platelet count 275,000. Doctors called my recovery a miracle - also, because of their experience with ITP patients and because of my progress they tell me - - that I'm CURED! I continue to improve, although I still have set backs.

I was on prayer chains from Maine to California - Praise God for praying friends.....

-- Norma (gunnie@route66web.com)