Be a part of the ITP community and stay informed.
Login to your account or REGISTER.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
Forgot your password? Forgot your username? Create an account
Forum
Adults With ITP
Newly Diagnosed & Frequently Asked Questions
Indium scan
  • Page:
  • 1

TOPIC:

Indium scan 3 years 3 months ago #68493

  • Meredith
  • Offline
  • Posts: 66
  • Thank you received: 2
I understand the Indium Scan can determine if ones platelets are being destroyed in the spleen or liver.
I also understand it is not done in the US
Why would anyone elect a splenectomy?
Why would anyone choose to have her spleen removed if her platelets might be getting destroyed in the liver?

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68498

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 2116
  • Karma: 7
  • Thank you received: 608
I'm in the UK. I had an indium scan which showed splenic destruction of platelets. However I refused point blank to have a splenectomy. Absolutely no guarantee it will work. I am not parting with a perfectly healthy organ that is doing its job properly.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68499

  • JJ
  • Offline
  • Posts: 226
  • Thank you received: 79
I'm in the UK and my scan showed destruction in the liver. While I had no intention of having a splenectomy anyway, it did stop my doctor from suggesting it again which was good.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68501

  • CindyL
  • Offline
  • Posts: 1549
  • Karma: 1
  • Thank you received: 239
I had my spleen out because I wanted off the prednisone. I knew going in it might not work, and it didn't. I can't say I'm sorry I had it done, but I am disappointed. It's a personal choice. I waited 2 years after diagnosis to go that route. I haven't noticed a difference between pre splenectomy and post splenectomy as to being sick or taking longer to get over a cold. I don't get sick any more than I did before. I do try to stay away from anyone who is sick.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68503

  • Meredith
  • Offline
  • Posts: 66
  • Thank you received: 2
Thank you

I cannot understand why anyone with itp would elect to have a splenectomy without this test

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68512

  • CindyL
  • Offline
  • Posts: 1549
  • Karma: 1
  • Thank you received: 239
I couldn't have afforded the scan nor the travel to England. And I don't like to fly.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68515

  • JJ
  • Offline
  • Posts: 226
  • Thank you received: 79
Not so long ago before the TPO drugs came along, there weren't so many useful options for treating ITP so it wasn't unusual for people to try splenectomy after trying all the drug options. I think that's quite understandable. I tried 6 different drugs unsuccessfully and was then lucky that Nplate came along just in time for me to take part in a trial, otherwise I'd still be in trouble.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68552

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 246
Meredith, Sandi used to describe the Splenectomy situation very well. Probably because it was a frequent topic of discussion.
pdsa.org/discussion-group/7-treatment-general/30100-fostamatinib-low-dose-prednisone-and-high-dose-nplate-triple-therapy.html#63853

As JJ points out. Now that we are in the age of TPO-RAs, splenectomy is becoming passe.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68553

  • Meredith
  • Offline
  • Posts: 66
  • Thank you received: 2
I agree it is becoming passe, however some Americans are still getting splenectomies without checking to see if the issue is in the liver or the spleen. The Mayo Clinic has a test too.
I would not get one. I think age 80 it would be too risky.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68554

  • MelA
  • Away
  • Posts: 1106
  • Karma: 2
  • Thank you received: 367
Meredith could you please tell us about the test the Mayo Clinic has - where did you hear about it and/or get information about it. I've never heard of it and I can't find it at the Mayo Clinic site. Thank you!

People will get a splenectomy because they feel it is the last resort or they feel it will help them keep good counts or they may have been scared into one by their doctor. I am not going to judge anyone who makes the decision to have one, it is their body and they have to do what they feel is best for them. When I was diagnosed back in the spring of 1989 I was given 2 choices, a splenectomy or prednisone - I made the choice to keep my spleen because they could not guarantee that removing my spleen would cure me.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68556

  • Meredith
  • Offline
  • Posts: 66
  • Thank you received: 2
It was on the PDSA Facebook page
I don't see hiw I can out a screen shot in here

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68560

  • MelA
  • Away
  • Posts: 1106
  • Karma: 2
  • Thank you received: 367
Did that person on the FB page give a reference to the info at Mayo?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68562

  • CindyL
  • Offline
  • Posts: 1549
  • Karma: 1
  • Thank you received: 239
I remember seeing something about it, but didn't read the article.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68563

  • MelA
  • Away
  • Posts: 1106
  • Karma: 2
  • Thank you received: 367
That's too bad because I think people here would be interested in what that test is - not everyone uses facebook or belongs to the group there.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68564

  • CindyL
  • Offline
  • Posts: 1549
  • Karma: 1
  • Thank you received: 239
Yeah, true. Most of the people on there don't belong here. I'll see if I can find the post.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 3 months ago #68565

  • Meredith
  • Offline
  • Posts: 66
  • Thank you received: 2
Researchers found that antibodies targeting GPib lead to platelet destruction in the liver and those targeting GPllblla cause platelet destruction in the spleen.
I suggest using Facebook’s group: Platelet Disorder Support Association
Re: Mayo Clinic
I wish this site would allow screen shots and links.

Please Log in or Create an account to join the conversation.

Indium scan 3 years 2 months ago #68670

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 246
I tried to do some investigation on the Mayo Clinic and Indium scan issue. Best I can tell, Mayo does do Indium scans, but it is not for platelets. It is for other issues. Here are two examples.
mayoclinic.pure.elsevier.com/en/publications/indium-111-granulocyte-scanning-in-the-assessment-of-disease-exte
mayoclinic.pure.elsevier.com/en/publications/indium-111-photofrin-ii-scintillation-scan

Please Log in or Create an account to join the conversation.
  • Page:
  • 1
Forum
Adults With ITP
Newly Diagnosed & Frequently Asked Questions
Indium scan

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo