New to Site

Hello All,

I just came across this site and have been reading all your posts. Glad to see there is a website for us ITPers!

A little bit of my history - I was diagnosed with ITP last year after a menstrual cycle that did not stop for 3 months! Ultrasound showed I had polyps in my uterus and the day I went in for surgery, they said I couldn't have it because my platelets were at 48. I had been getting blood work done for the last 3 months and noone saw it until the day of my surgery! Ranges for those 3 months were 25-50. So, went to a Hematologist who did a bone marrow test and liver/spleen scan. All came back clear, so was diagnosed ITP. Got on Prednisone (50 mg) to bring the platelets up for surgery, but it only made them go up to about 60, tops. Tried Win-Rho (2 treatments) and had a horrible reaction. My skin turned yellow and my red blood cell count and hemoglobin dropped to a critical low and my platelets didn't budge. Blood transfusion was strongly suggested, but they put me back on prednisone (100 mg this time) to see if it would help and my numbers slowly went up, so no transfusion. Platelets were steady at 60, so I was told they could do the surgery at that count because it wasn't too invasive of a surgery. But, went in for another ultrasound and no polyps! Everything was clear. So that day I dropped down my dosage of prednisone and have been slowly weaning off it. Finally took my last dose on Friday! I don't need to tell you all how happy I am to be off it because I know you feel my pain, which is so great!

Platelets have been steady in the low 60's for the past two months. I have also been trying to follow the Blood Type diet. I'll do anything to not have to take medication for this! I'm type O, so it has been hard to completely cut wheat out of my diet, but feel like since I started following it, platelets have been steady and I have been feeling good. Hope to get myself fully committed to it and see the results. Has anyone here tried this diet? If so, has it helped? Also taking a prenatal vitamin for the extra iron and folic acid. Wondering if there are other vitamins you have taken and if they have helped too? Any other natural remedies you all have tried that worked?

Thanks for your advice!

please tell me more about the diet u are on.........and best of luck to you!!!!!!

Hello Layla,

Welcome to the forum.. I'm very interested in the different diets as well.. Everything to keep my counts up.. I think I will try the blood type diet when I move out (wich will be within a couple of months) For now I can't ask my mom and aunt to eat according to my diet.. It would make me feel guilty.. I'm very curious to how you're feeling on the diet.. Energy level etc..

Xx
Joya

Hello Layla,
Beautiful name! Good song too!
3 months of that would be more than I could bear. But that's how I was diagonised too. I appreciate my gyn because alls I did was mention to him that I bruise easily and he started the blood work. I'm still really new to the ITP thing, so I honestly haven't given my diet to much thought. In fact it's non existant because of the prednisone! But I am tapering off that so I'm thinking I need to focus more. Thanks for the info about the diet. I'll research it.

Hi,

I'm new to the forum as well, I actually just joined today. I've had ITP since 1982 and I feel so blessed after reading some of the stories that I've read on here today.

Thanks and the best of luck to you!

Wanda