Hi, I was diagnosed over a year ago when my count was at 5. I responded slightly to Prednisolone (got to about 60) but as soon as I came off it, fell back down to the high teens. I've been off all medication now for 9 months and fluctuate between 19 - 40 max.
My doctors want to do a splenectomy but I'm hesitant as I know it's not always the spleen causing the problem. After doing some research I found out about the Indium Scan and my doctors agreed to referring me for this.
I got an appointment through really quickly and have to go mid August.
I was wondering if anyone on here have had this done and how they got on with it? I'm ok with the scanning part but I have a major issue with needles (not ideal with this contrition I know!!) and am somewhat nervous!! Any help / advise would be much appreciated.
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Codie85
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A gentelman in our facebook group had it and it showed in fact it was his liver and not his spleen that were destroying the platelets so he cancelled surgery and has had success with Rituxin. I understand the needle thing but it may help you in the long wrong with treatment decisions. Best of luck
I had the scan and it showed that the destruction was in the liver. This meant there was no point in splenectomy. Still not got a treatment that works though. It is my understanding that it helps show the likely effectiveness of Spleen removal not what other treatments work.
Also there are only 2 jabs needed for the scan. They take some blood(needle number 1) and then after it is labelled they reinsert it(needle number 2). Other than this it is just 4 turns in a scanning machine.
Hi Codie85. Good advice above. Why have your spleen removed if it is not the problem. The test will tell you that so go for it. The spleen is a vital organ to fight infection and without it, you are potentially laying yourself open to any infection that comes along.
As to your count, if you do not bleed why bother with medication which you can live happily without. Most of the specialist in ITP would say quality of life is more important than the count. I am lucky I have only had one bad bleed in 20 years. My count has been around 10 for most of that time. I stopped taking medication 12 years back unless I need the count raising for surgery. I have just undergone a heart quadruple bypass without any problems, but I did have medication to raise the count to an acceptable level which was above 100 for the major operation and 50 for the angiogram. I am now back with NO medication - GREAT. I have however taken notice of refraining from dangerous per suits, but in fairness, being nearly 70 that is unlikely anyway. I do bruise from time to time, but that I can live with. Good luck, have the scan to be sure and then consider the options. If in any doubt, consult a specialist in ITP details available from the ITP Support Association's web site under forum. Keep us update
I'm not a major bleeder but I bruise like a peach, always have petechiae (everywhere), and get really bad fatigue. This I could live with but before being diagnosed I was really outgoing. regularly horse riding / show jumping and a complete adrenaline junking (parachute jumping, Bungay jumping, white water rafting etc) but docs have told me that I can't do any of this with present counts.
I have tried less 'dangerous' activities like running and swimming and although I do enjoy them, they feel more like exercise!! Plus it's not really what I want to do - for that I need higher counts
I know the scan is an important part to my decision making but when it comes to hospitals I'm a complete wimp! The hospital 3 hours from where I live and therefore will need to stay away for the week but due to my families work commitments, I'll be doing it solo which I think is making me more nervous.
Trev1679, do they take quite a bit of blood or is it like a normal blood test? And to they put it back in via a drop?
Hi, Sorry I have only just seen your reply. They cannulate you and take 3 vials of blood and use the cannula for reinsertion. I only had the cannula in for the first day.
I'm not a major bleeder but I bruise like a peach, always have petechiae (everywhere), and get really bad fatigue. This I could live with but before being diagnosed I was really outgoing. regularly horse riding / show jumping and a complete adrenaline junking (parachute jumping, Bungay jumping, white water rafting etc) but docs have told me that I can't do any of this with present counts.
I have tried less 'dangerous' activities like running and swimming and although I do enjoy them, they feel more like exercise!! Plus it's not really what I want to do - for that I need higher counts
I know the scan is an important part to my decision making but when it comes to hospitals I'm a complete wimp! The hospital 3 hours from where I live and therefore will need to stay away for the week but due to my families work commitments, I'll be doing it solo which I think is making me more nervous.
Trev1679, do they take quite a bit of blood or is it like a normal blood test? And to they put it back in via a drop?
Thanks for all your comments.
I had the indium test done in London and they took 50 mls of blood for the platelets. Tagged them with indium and then hours later put it back just using a syringe and needle. It's much less going back as they only put the platelets back. The 50mls is like 12 or so of the normal vials but in one syringe. Then I had normal sort of blood tests each day before the scan. In London at that time, I don't know if it's changed, they only did three days of scanning, two scans on day 1 and just one on days 2 and 3. I believe in other centres they do more days of scanning.
I found it very interesting. My platelets are destroyed mostly in the liver showing that a splenectomy would likely not work. I wasn't intending on having a splenectomy anyway but it kept my doctor from asking me to consider it. My current haematologist, Dr Provan at the Royal London doesn't do splenectomies any more anyway so it was all academic as it turned out but it's still useful to do.
I had my indium scan done last year in Plymouth and agree with everything that Camden Girl has told you. In Plymouth they did the scans for over a week and in addition to having the platelets removed and replaced I had six scans and five normal blood tests in all. I was really nervous about having it done because I was afraid of being in the scanner rather than having an issue with needles like yourself. I found it really helpful to talk to the staff about the process a couple of weeks beforehand and ask lots of questions. Perhaps if you ask it might not be necessary to have that many blood tests done? I found that they couldn't have been more kind and helpful and it really wasn't that bad when I had it done.
I am really glad that I did have it done as I too destroy platelets in my liver and have managed to avoid an unnecessary operation that could have left me vulnerable to infection for the rest of my life. I hope it all goes well for you and please get in touch if there is anything else you would like to know.
I had the scan and it showed destruction in both spleen and liver so surgery not considered. Here in Scotland, fortunately on the NHS, I get Eltrombopag(Promacta) 25 mg daily and am usually between 30 and 50 which my haemo is happy with. If I need e.g. dental surgery I up the dose beforehand to raise my count .
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anyone had their spleen removed
you can get a indium labelling scan done in aberdeen 
The condition that just keeps giving...
Chronic itp. Latest treatment is rituximab
