T + 507 Every Silver Lining has a Cloud
Excuse my perverse way of phrasing things but the silver lining in question is that I will now be able to get free prescriptions for life as I found out on Wednesday my low thyroid level is almost definitely not going to recover and I will be on Thyroxine tablets for life.
I went to see the endocrinologist on Wednesday and he went over my current medications and situation in general. He was a very nice chap and had a very apposite name but as I have striven to keep this blog anonymous as far as the medical staff and fellow patients are concerned that will have to remain unstated here.
The doc said my thyroid levels were low and asked if I had got dry skin and how much weight I had put on. ( See I told you it was my glands all along ). I said I was a few pounds over my normal level of overweightness and it had been difficult to shift. He has upped my dose of Thyroxine from 50microgrammes to 100 a day and he said most people with thyroid problems usually need at least 100 microgrames.
I asked what had caused the under-active thyroid and he said the most common cause in bone marrow transplant patients was radiotherapy treatment but I had not had that. He said however they did see quite a few cases in people that have unrelated donors and whilst it was not certain, one theory is that it comes from the donor having a disease of the thyroid that gets transmitted.
So if you reading this and by some happenstance you are a 40 year old cockeney ( or German as I never did get to the bottom of where my donor came from ) and you have put on a bit of weight recently, feel the cold a lot, are tired and have dry skin the pop along to your GP and ask him to check your thyroid.
Anyway the doc also said that it was very unlikely my thyroid would recover on its own and so I would be on thyroxine tablets for the rest of my life. This is not too bad as the drugs have no real side effects and once the dose is correct I should really feel the benefit.
I get a 5 year exemption from prescription charges as a cancer patient but now I'll get them free for life or about 60 years if I have anything to do with it. ;0) (Look out for blog posting T + 22,407 )
The other thing the endocrinologist did was to stop my fludrocortisone steroid as I don't need this anymore . The hydrocortisone that supports my adrenal glands is a different matter and he said it can take one or even two years to get people off that and a few people never are able to stop it. He wants to get my thyroid levels right first though.
As I have mentioned previously, the level of hydrocortisone I am on doesn't have any immunosuppressive effects so at least that doesn't affect my reduction of ciclosporin.
My next appointment with him is in two months time.
I am on holiday next week and looking forward to the break from work though it will be a bit of a busman's holiday as Tuesday I have my CT Scan, Wednesday is my normal Transplant Clinic and Friday I am seeing the company medical advisor in some posh consulting room in Edgbaston.
In other news the flat has now been completely re-carpeted. It has been quite an upheaval moving all the furniture about and I realised the other day that with the exception of stuff in the kitchen we have effectively moved house over the last two weeks. The carpets look really good though and I look forward to getting the flat straight again.
I've also completed the re-drafting of a couple more chapters of my NaNoWriMo 2009 novel, "Reunion" which you can read at http://www.abctales.com/set/raetsel/reunion