Indium Platelet Scan at Barts Hospital, London

This information is current as of April, 2015 and hopefully someone will update it when the next person goes to to London for the testing as well. To be clear, everyone agrees that the Indium Platelet Scan is not a predictor of success or failure of a splenectomy. The purpose is to obtain additional information and to avoid a splenectomy completely if the results show that the platelet destruction is not in the spleen.

To arrange the testing, I contacted: miranda.meme@bartshealth.nhs.uk and Neil.Hartman@bartshealth.nhs.uk Ms. Meme is the booking clerk and can also be reached by phone (01144 20 3465 9400), but email seemed to work the best.
Your referring doctor must email Ms. Meme: the doctor's full address and contact details along with a listing of all medications and dosages. The cost for the study as of April 1, 2015 is $1425 British Pounds and can be paid by credit card at the hospital after you arrive. The hospital is located about 328 yards from St. Paul's Cathedral, if you are looking for it on a map. We stayed at the Hoxton at Shoreditch which is a moderately priced hotel suggested by Dr. Hartman (who is happy to provide suggestions for a place to stay). It was an easy 30 minute walk from the hotel to the hospital. We used our handy IPhone to get walking directions and it worked great even given the incredible amount of construction in London!

Ms. Meme will email you a confirmation of the dates and times of the appointments. Bring that paper with you. When you check in at the Nuclear Medicine desk, they take the paper so they know who you are and what you are there for and then they give it back to you.

My "appointments" were listed as 9:00, 9:45, and 13:15 on the first day and 9:00am on Tuesday and Wednesday. In reality, you arrive at 9:00am and then they tell you the actual times for the rest of the first day. They took the blood at around 9ish and told me to either wait or come back in about 2 hours so they could take out the platelets and radiate them. We came back at 11 and at about noon they took me back and put the platelets back in. That is just another needle in the other arm and it doesn't have any feeling different from when they take blood out. Then you wait an hour and they bring you back for the scan. You lie on the table, like with a CT scan for about 10 minutes and then they take another sample of blood. About three hours later, they take you for another scan and another blood sample. For those of you with ports, they will not use the port. Plan to make Monday just a day for testing, with a break for lunch. There are plenty of places around the hospital to eat and the hospital has a cafe.

Then on Tuesday and Wednesday, my appointment was at 9am each day. Again, another blood sample and another scan, but just one each day. The idea is to get a scan done at 1 hour, 3 hours, 24 hours and 48 hours after they inject your platelets back into you. We then had most of Tuesday and Wednesday to enjoy the city.

Once I get the results back, I will post what information they give you. They say they will have the report to my doctor within three days of the completion of the testing, but we were there just before Easter and England shuts down for Good Friday through Tuesday, so it might still be a few days before I can report back.

There was some discussion somewhere on this list about concerns of being stopped at the airport for being radioactive. We stayed through Saturday and maybe I got rid of any radioactivity, but no one stopped or questioned me at any point at the airport. Dr. Hartman says that a full body CT scan has an effective does of 15 mSv or 15 times more radition then the platelet study.

The hospital was clean and modern. The staff used the usual sterile approaches you would expect, hand washing, gloves, having a place to discard sharps etc. The staff was kind, patient and professional.

I strongly suggest trying to also get a consultation with Dr. Drew Provan, an expert in ITP. If you are not a part of the NHS, you will need to pay him separately. The fee was $250 Great Britain Pounds. I had my doctor email him my entire records, which he actually read before our meeting. His email is: a.b.provan@qmul.ac.uk He will let you know his availability and where to meet him. We met him at the London Independent Hospital which is a long walk from St. Barts (we walked there the day before so we knew where to go). It took us about an hour to walk there, but it was 5 minutes from the Stepney Green tube stop and there are at least three tube stops by St. Barts so we ended up taking the tube to see Dr. Provan. It took about 20 minutes via the tube/subway.

Feel free to email me directly if I missed something that should be added to this post to help anyone else who decides to make the trip to London to gather information. As of April, 2015, this test is not available anywhere in the US.

That's a pretty thorough account of the experience. I'll be interested to hear the results.

How was the appointment with Dr. Provan? I know you gave a short description....was there anything else?

Dr. Provan is more a fan of Promacta then NPlate. Since it is given every day, he believes you get a more stable count rather than spikes in counts. He was much more concerned about spikes in counts (fear of stroke) then more consistent numbers, even if they are low. In the UK they have a set order in which treatment is provided. He is very opposed to spleen removal given the unknown outcome over any period of time and believes there is usually some other treatment that is a better alternative. He was very excited about the fact that people can actually go into remission while using an TPO and may not need to remain on the drug forever even though it makes no scientific sense! He does not believe that blueberries or grapes or any other food impact platelets and that one should lead as normal a life as possible so long as you are not bleeding. Although we should avoid contact sports, just to be safe. If you have Rituxan treatments, you should see a response within 2 months from the last treatment. He really likes Mycophenolate (Cell Cept) and believes it works well with few side effects. He stated that one should see a response within 2-4 weeks from starting treatment and if there is no response within 2 months, he would see it as a failure. However, given that NPlate and Promacta work in about 80-90% of cases, and that he is now seeing full remission with those drugs, he would use a TPO before CellCept.

Logically, it is hard to know what is working when the doctor keeps injecting us with every drug out there and his philosophy is that you need to know what is "failure" for the drug before just starting the next drug. As we all know, WinRho was banned in 2009 in the UK and Europe so that is not an option he would ever recommend.

He also thinks that once a week counts are adequate and we should focus on how we feel more than the number (easier said then done for me!) I kept him for an hour that felt like 5 minutes and wanted to put him in my suitcase and take him home with me.

It all makes sense and I agree (ha, not that my opinion matters), but I think he's absolutely right. If only we could get the rest of the doctors on the same page! Doctors do move too quickly with treatments in a seemingly frantic effort to get counts up. If there are few symptoms, I'm always thinking, "Where's the fire"?

I'm not a fan of CellCept, but he's right that the TPO's usually work so there's not much need for it. I've been on CellCept, Imuran and Methotrexate for Lupus and after all those immunosuppressants, I worry about the cancer risk. All those drugs have done is cause damage. No more for me!

The TPO's have really changed the ITP world and at this point in time, I think they are great. If they work for someone, there is no need for splenectomy. I'd love to see that phased out as a treatment option. As he said in his video, "We are not seeing people dropping dead because they have not had a splenectomy". Too many doctors tell patients the TPO's have to be taken for life and that is a huge misconception.

Emily, we don't have a set order in which treatment is provided for ITP except that most haematologists will start with steroids. Otherwise each doctor has their own preferences. Some like rituximab and some don't. Some don't use mycophenolate at all, some like azathioprine. It varies.

This is how the report reads:

L/H S/H S/L

30min: .87 5.73 6.61
3 hours: .89 6.1 6.89
24 hours: .77 8.57 11.2
48 hours: 1.47 13.01 8.85

Half Clearance Time: 1.19 days
Platelet mean life span: 1.71 days
80% destroyed after: 2.77 days
This corresponds to a spleen/lover ratio of 10.61
Normalized to 30 minutes: 1.61

Conclusion: According to Najian etal, there is predominately splenic sequestration.

This corresponds to a spleen/lover ratio of 10.61

There is a joke in there somewhere! (especially since spleen is a metaphor for anger)

Ann might be better able to interpret that than I can. She also had the Indium.

So, I do understand predominantly splenic. What does that mean to you at this point, Emily?

Typing lover instead of liver must have been some kind of psychological slip since I love both my liver and spleen (well i am a bit angry at its bad behavior) and hope to keep both until I die!

I don't plan to do anything other than now that I know it is my spleen, heaven forbid the only option is removal, the option exists. I remain hopeful that Rituxan is working. I did not want to be in an emergency situation and not have all the information that is available. I am glad i had the test even if i never use the results. I am also fascinated at how fast those poor little platelets are destroyed even while i was on 50 mg of prednisone. The disease is really interesting although i wish i did not know about it!

All I know about the interpretation of results is that the headings mean S obviously spleen, L Liver and H heart. Heart is an indication of what is circulating in the rest of the body. They compare where the tagged platelets are in those places and express it as ratios.

Mine ended up with "This corresponds to a spleen/liver ratio of -0.46" which is classified as hepatic (liver) sequestration. So Emily's and mine are polar opposites and it's very interesting to see the different results.

Wow Emily thank you so much for posting that detailed report. I don't think we've ever had such complete and accessible information for anyone who might want to do that test.

You mentioned being radioactive at the airport - that happened to me after I had my thyroid ablated with a radioactive pill. I traveled from the US to the Bahamas and nothing happened, but on the way home at the Nassau airport I set off some sort of silent detector and the screening guy looked scared and had me stand to the side. A homeland security guy came out of an office to question me. He was really cute. I explained about the ablation and he was 'oh ok let's get that on your record so you don't have any problem in the airports in the US' and I didn't.
Erica