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TOPIC: Indium scan

Indium scan 4 months 4 weeks ago #68493

  • Meredith
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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?

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Indium scan 4 months 3 weeks ago #68498

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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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.

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Indium scan 4 months 3 weeks ago #68499

  • JJ
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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.

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Indium scan 4 months 3 weeks ago #68501

  • CindyL
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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.

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Indium scan 4 months 3 weeks ago #68503

  • Meredith
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Thank you

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

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Indium scan 4 months 3 weeks ago #68512

  • CindyL
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I couldn't have afforded the scan nor the travel to England. And I don't like to fly.

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Indium scan 4 months 3 weeks ago #68515

  • JJ
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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.

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Indium scan 4 months 3 weeks ago #68552

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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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.

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Indium scan 4 months 3 weeks ago #68553

  • Meredith
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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.

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Indium scan 4 months 3 weeks ago #68554

  • MelA
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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

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Indium scan 4 months 3 weeks ago #68556

  • Meredith
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It was on the PDSA Facebook page
I don't see hiw I can out a screen shot in here

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Indium scan 4 months 3 weeks ago #68560

  • MelA
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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

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Indium scan 4 months 3 weeks ago #68562

  • CindyL
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I remember seeing something about it, but didn't read the article.

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Indium scan 4 months 3 weeks ago #68563

  • MelA
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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

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Indium scan 4 months 2 weeks ago #68564

  • CindyL
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Yeah, true. Most of the people on there don't belong here. I'll see if I can find the post.

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Indium scan 4 months 2 weeks ago #68565

  • Meredith
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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.

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Indium scan 3 months 3 weeks ago #68670

  • Hal9000
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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

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