Indium screening test

Just want to remind people who are considering having a splenectomy that the indium test is available. Any doctor in the country can refer a patient to one of the centres where it's done. The test will tell where the platelets are being destroyed, either in the spleen, the liver or both. If in the liver then the chances of a splenectomy working are very low so you can save your spleeen. If in the spleen then chances of success are high but it's still not certain as the liver can take over where the spleen leaves off.

[tpbabu1994]

Sir

do u know where the indium screening test centers are there

[sonjo in reply to tpbabu1994]

in the uk they do this test at the royal london hospital, whitechapel

[tpbabu1994 in reply to sonjo]

thank u

are there any centers in india

[Hidden in reply to tpbabu1994]

You should ask a haemotologist at one of the large city hospitals. They are most likely to know. It isn't available in every country in the world and the UK ITP Support Association are unlikely to know where it is available outside the UK.

[janran in reply to tpbabu1994]

Hi

I had mine done in Plymouth at Derriford Hospital, last month. I was a bit worried about it but it was fine. Only problem is that you have to go every day for 7 days (not over the weekend though).

[NickyD]

If I had known about this test I would have had it before even contemplating having a splenectomy. It is a scandal that it is not done!!! NickyD

[AnthonyHeard Administrator ITP Support Association]

To check out where you can get the Indium Screening Test in the UK, please email directly to ITP Support Assoc HQ at [e-mail]. Let them know your location and they will give you details of the nearest centres where the test is performed.

[tpbabu1994 in reply to AnthonyHeard]

thank u sir

[lindamcguirl]

I just heard about this test myself at the PDSA conference in Denver, CO in the US. I was told here in the states that it is being done only at John Hopkins hospital in Maryland, but I could not find it on line. If you are in the states I would contact PDSA(platelet Disorder Support Association) pdsa.org.

I was also told they are testing in the UK, France and Spain at several locations, but I have no specifics.

[Hidden]

The test is done at Barts in London, and Manchester and possibly elsewhere.

Contact details for London are here..

ukitpregistry.com/WhatsNew/...

[Rachaely]

I'm going to St Barts in London for my indium scan on 5th November - it's over 3 days, so it's not the full week which I was expecting, so can just commute there and back from my parents in south lincs for the 3 days, and then head home to Glasgow mid-week. Here's hoping I've got more than my current 42 platelets so my scan isn't inconclusive (although I do appreciate it can be inconclusive for other reasons - would like the topic of splenectomy to be taken off my list of treatment options so here's hoping my liver's doing it all ...

[Hidden]

Rachael you sound just like me. I did it wanting the result to be the liver and I got my wish. The first day takes time as you have to keep going back but the second and third days were very quick with a scan at 9 am for me and that was it. They told me the count had to be between 5 and 100 so your 42 should be fine. I found it interesting.

[Rachaely]

So, am booked in for splenectomy March 13th - my indium scan came back very conclusive that it was >85% splenic sequestration. Came off azathioprine at the start of Jan (didn't work) and docs were trying to keep my count up with IVIGs which worked for a few weeks, but has had no effect in Feb, probably due to me having colds etc. So, with lovely new symptoms of blood blisters in my mouth and a 10 day nosebleed (so far) to add to my usual bruises and petechiae, I'm on double IVIg plus romiplostim every week to try to get my count up for surgery in a fortnight's time. Was given tranexamic acid for the nosebleeds but no joy - just made me dizzy! Anyway, will let you know how the surgery goes - fingers crossed it works!!

[healthissue in reply to Rachaely]

good luck let us all know how it all goes.

[Rachaely]

So, here I am, exactly 2 weeks after my splenectomy ... what a rollercoaster it has been, and is continuing to be! Since my last post, my count was back in single figures, no joy with the romiplostim, so we tried a 5 day pulse of dexamethasone (which was a joy unto itself) - and on the Monday before my surgery on the Wednesday, my count was 5. Not good news, then. Took my place in the last chance saloon and had double IVIg the Monday and Tuesday - count had gone up to 26 on the Tuesday so all were hoping I'd make the magic number of 50 on the Weds (i.e. a (very) short term response to the IVIg). At 1130 on the Wednesday, told that count was 55 so surgeon willing to give it a go! To summarise what's been happening since, despite count of 55, I wasn't clotting anything like normally so 2 bags of platelets pumped in before they could proceed. All very neat and very impressed with the high dependency ward I was in afterwards - and a good job too ... discovered a whole new phrase of "vesavagal syncope" - i.e. fainting big time (one time my pulse went down to 28 beats per minute, blood pressure 63/0), which turned out to be due to low haemoglobin levels (which in turn was due to IVIg containing anti-A antibodies -I'm blood group A) which also explains the dizziness and weakness I've been feeling since the start of Feb. Anyway, out of hospital after 3 days, recovering well until discovered an abscess under one of the incision sites - on antibiotics for that, will hopefully sort without the need for some horrifically painful procedure.

So, the platelet counts ... mixed news. 55 before the surgery, 109 immediately afterwards (probably due to the tranfusion), 173 surgery day + 1, 285 surgery day + 2, 252 surgery day + 3 - but the slight drop thought to be due to the 2 bags of blood I had 2 days after the op for the haemoglobin issue. Bloods done a week after the op and count had dropped to 112. Was initially upset and disappointed as couldn't face the idea that had put everyone around me through all this, and it might not have worked ... so am hoping it's just my system settling down, plus now I know I'll have had this infection building up at the time too - so roll on next Tuesday when I get another count done ...

[Rachaely in reply to Rachaely]

Correction to bp number above - was 63/40, not 63/0 - I doubt I'd be writing this now if it was 63/0!