Hi Daphne
Yes, I have been treated at the RD and E since dx in Sept 2009. The genetics lab does not comply with IS so they have no conversion factor. I did actually take this up with the head of the genetics lab as, up till Oct 2015 my blood was tested at Hammersmith ( I was on 3 different trials) which gives PCR results on IS along side raw results. Since I came off DESTINY in Oct 2015 my blood is now tested at Exeter so I asked about the conversion factor. I found 2 raw readings ( ie neither were on IS) - one from Hammersmith 0.12% and one from Exeter 0.59% taken from the same blood produced quite different results which I found confusing to say the least. It was the Exeter reading which caused me to stop the DESTINY trial. This is why I asked about IS or the conversion factor so I had some way of comparing how I was doing. The lab has never managed to come up with an reason for this difference and I have had conversations with the head of the lab in Exeter about it since then. The only thing we can think is that the blood sent up to Hammersmith had maybe taken too long to get there and be tested and had gone off.
Therefore, all you can really do is accept the Exeter readings and compare one result from Exeter with the next. This is what I am doing now . So long as everything is moving in the right direction ie downwards, I wouldn't worry too much - although being newly dx I know this is impossible.
I ought to add that having taken part in a couple of lectures with the current cohort of genetics students - both the BSc and MSc groups- along with the head of the lab and my consultant, I am happy that the Exeter results are accurate enough. (No I am not a geneticist but they wanted a real live patient so the students could see the practical application of their lab work and hear about the importance to patients to get the PCR results quickly and accurately).
If you have any other queries I am happy to answer as far as I can. Sandy Craine can give you my email address if that would be helpful to you.
best
Chrissie