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Spleen Test 1 month 5 days ago #72460

  • Toby-Wan-Kenoby
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I heard that one can test if the spleen or the liver or both are responsible for deposing the platelets.  I also heard that one can only get that test done in the UK. Has anybody done that test.? What is the procedure. What were your results? Did it get confirmed after splenectomy?  
Thanks for your info. 
Diagnosed 7/2019 let the fun begin...

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Spleen Test 1 month 4 days ago #72461

  • mrsb04
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  • 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.
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OB1
I assume you are asking about an  Indium 111 scan. I live  in the UK and am lucky enough to live near an ITP clinical centre. 
The scan is performed before any surgery is even contemplated. A sample of blood (approx 50ml) is  removed, platelets are coated with Indium 111 and  returned  to the body then  scanned as they circulate through the body.  Absolutely fascinating to watch.  
The whole point of it is to prove where platelet destruction takes place, unless there is no destruction which indicates  it is probably a platelet  production problem. 
If it is a destruction problem then it is more than likely in the spleen, which was blatantly obvious on my scan.
However as my spleen is a perfectly healthy organ doing its job properly I refuse to part with it.
  • A splenectomy is not without several risks, ie infections and arterial emboli    www.ncbi.nlm.nih.gov/books/NBK538171/ 
  • There is no guarantee a splenectomy will work, the endoreticular system takes  over the job of a removed spleen thus destruction of platelets will continue but probably at a slower rate  
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Spleen Test 1 month 3 days ago #72470

  • MelA
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T-W-K there used to be a group of us ITPers in town who would meet every couple of months, unfortunately that did go by the wayside a number of years ago.  In our group was a woman who kept a count around 5k & who flew to London for the Indium test - she was originally from the UK so had relatives she could stay with during that time.  It was determined that the destruction of platelets was in the spleen.  She came back here and had her spleen removed, her count went up for a short time and then back down to 5k or thereabouts !!   

You must remember that there are other places in the body that have the job of cleaning the blood and they can take over when the spleen is removed.   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Spleen Test 1 month 1 day ago #72479

  • JJ
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I had the indium scan which showed that destruction was taking place in the liver so a splenectomy had no chance of working. I wasn't going to agree to a splenectomy anyway but it stopped the doctor talking about it. 
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Spleen Test 1 month 1 day ago #72480

  • MelA
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That was an expensive way to stop your doctor from talking about a splenectomy JJ!!
I take it that "NO" just didn't do the trick?!   Thankfully none of the hematologists I've had since 1989 never pushed a splenectomy!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Spleen Test 1 month 21 hours ago #72481

  • Toby-Wan-Kenoby
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Thanks to all who replied. Now I know what the test is called. Has anybody had to pay out of pocket for this? I am in Switzerland and this I think would have to be done in the UK. 
I am inclined to start a survey about success rate with spleen removal. But I think that would make little sense as people which it has worked for are most likely not so active on the is forum and people where it had not worked continue to engage on pdsa. 

The problem for me is that I often drop to Tc levels of 2. It got so bad 2 weeks ago that I had a brain bleed and platelet infusions at the ER stopped that. But with an emergency flight to a more advanced hospital to Denver (this was during a vacation) and one extra day in the ICU and a second day in a normal room probably cost my insurance $100k 

So I can no longer tolerate the ultra low Tc levels for the fear of a relapse. Everything <5 I am in fear now. 

I want to keep my spleen. So I am between a rock and a hard place. 3 years into this and I am running out of options. 
Diagnosed 7/2019 let the fun begin...

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Spleen Test 1 month 10 hours ago #72484

  • mrsb04
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  • 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: 1992
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Basel has a department of nuclear medicine maybe contact it to see  if the scan is available. 

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Spleen Test 4 weeks 2 days ago #72488

  • JJ
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That was an expensive way to stop your doctor from talking about a splenectomy JJ!!
I take it that "NO" just didn't do the trick?!   Thankfully none of the hematologists I've had since 1989 never pushed a splenectomy!


No treatment was working at the time and the doctor said to do the indium test just in case a splenectomy became necessary. In the end I got myself on a trial for romiplostim and that worked so all was well. 

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