Does anyone no of a specialist on itp in the Midwest we live in Iowa??? Our 32 old daughter is at 14,000 and nplate is not working,

[cjoh]

She was told she had itp last August 2013. She has never gotten over 160,00 with steroids. She is being seen by a Doctor who wants to take her spleen out asap. Don't no if I agree.

[mags4743]

You can look at many posts on this site and most will say splenectomy hasn't worked for them. The first thing to do is to have an indium labelled platelet test to see if, in fact, the platelets are being destroyed in the spleen - it can be in the liver. Until this test is done you won't know where they are being destroyed and if the spleen is removed and the culprit is your daughter's liver it is a pointless operation. Of course if the spleen is removed your daughter may have to take antibiotics for life. It is, of course, her choice and you do need to listen to your doc. Good luck.

[Marie34]

Make sure she does not get her spleen taken out. It is not necessary! I had mine out when I was 18 and it did not help at all. Get a second opinion!

[janran]

Hi

I agree with everything that mags4743 has told you but am pretty sure that it will be difficult to get this scan in the US. I had mine done in Plymouth in the UK and was not suitable for removal of the spleen as my liver is involved in the destruction of my platelets. I responded to steroids but my counts crashed to 6,000 each time I came off them. For the last three months I have been taking MMF (mycophenolate mofetil) and at the moment my counts are slowly climbing. Maybe you could ask your doctor if this would be an option for your daughter? I would definitely recommend trying to find an ITP specialist though as they have the most up to date information and knowledge. I hope your daughter finds something that helps soon

Regards Janet

[patchouli]

We have a wonderful doctor in Peoria. He is Dr. Tarantino at the Bleeding and Clotting Disorders Institute. You can look them up on the internet: ilbcdi.org. I highly recommend him and his staff.

[sailor]

The states have a different outlook on spleenectomy to the UK. Here this is not as common now and drugs or no treatment are the norm. I have had a count of 10,000 for the last 12 years, no medication unless necessary for surgery and lived a near normal life. Yes I get tired but I am lucky I do not bleed. Have you spoken to the PDSA to find a specialist ITP doctor in your area. I am sure they exist. Good luck.

[Hidden]

I feel its often the lazy way out for them and if your team was up to date they would see splenectomy has moved way down the order for treatments. The old cut now think later doesnt wash so much any more. Perhaps a 2nd opinion. Many live with counts well below 50,000. Oour bodies create our own version of normal and sustainable it should always be about the symptoms and not the numbers