Well after having the run around from the medical profession I have finally come to the end of my tether and told my GP yesterday and then fired off a scud missile of an email to my useless gastroenterologist today!! He actually replied within 20 mintues of me sending email........ probably cause I used the suicide word at the end of my email!!!!!!!!
I have forwarded your email and most recent blood results to Liver Specilaist in Edinburgh. I will let you know as soon as i hear from them.
Physician & Gastroenterologist
Training Programme Director, Gastroenterology, NOS Deanery
I spoke with GP at xxxxxxxxxx Surgery after our last meeting in December and asked to be referred to a PBC specialist in Edinburgh but he told me that he didn't know anyone. I also spoke to Dr xxxxxxxx xxxxxx (GP whom I see the most) yesterday re referring me to a PBC specialist in Edinburgh but she told me that she couldn't do that and only yourself (specialist) could do that. Dr xxxxxx informed me that she would have to seek permission from the Health Board to do this!!
I am totally at a loss as the itching is driving me insane and feel I am no further forward than when the itching started in Oct 2011. I have started to get amalgam fillings removed and detoxing and eating organic and although I am getting a number of days without any itching I am still suffering with itching before, during and after my period.
I remember you telling me that the Edinburgh Transplant Team come up to Aberdeen every few months and was wondering if you could arrange an appointment for me to speak with them in Aberdeen. I did send my medical information via the PBC charity to a couple of specialists in England and they agreed that a liver biopsy would add nothing to any findings and the fact that I am no where near getting a liver transplant!!!! What they did mention was cleaning the blood a tad like kidney dialysis to alleviate the itch.
I have also got a private gynaecological appointment on Friday 5th July 2013 to see if she can add any light as to why I suffer with the itching before, during and after period. As I have stated in past appointments with yourself and registrar, my periods have changed around the time the itching started in Oct 2011. It may be that I am heading towards menopause...........
I also asked yourself at my last appointment regarding UVB light treatment but yourself and the registrar just looked at one another and said you hadn't heard of it. I know that they use this form of therapy in Edinburgh. As I told my GP yesterday I feel that I have had to do so much research etc regarding PBC as well as coping with the illness, underactive thyroid, working, caring for dad and trying to spend quality time with my partner and family, especially my gorgeous granddaughter - I feel that I have been let down by the medical profession!!!!! My GP once again shook her head and said you know more about your illness than I do!!!!
I have had my bloods carried out recently and I am pleasantly surprised that my liver function tests, even though still high, are remaining stable, my TSH is coming down and my ferritin level is over 76. Dr xxxxxx did mention that my copper level is high but as this is the first time I have had it done I am not sure if it has been high for a while.
As per email from Dr xxxxxx below, she has prescribed Dermacool which I will pick up from chemist today and also going to refer me for UVB light treatment. Please, please can I ask if you can arrange for me to speak with someone from the Edinburgh Transplant Team the next time they are up in Aberdeen as they may know of something that hasn't been mentioned or can inform me regarding cleaning the blood treatment.
You mentioned in your email that rifampicin and naltrexone are the last resort but I have already tried these. I am not sure why you are saying that they are the last resort as I have mentioned about treatment for cleaning the blood and you also mentioned at last appointment immune suppression drugs and / or steriods. I would rather try medication that gave me a quality of life rather than a quantity i.e. I would rather have 10 good years with medications that prevent the itch rather than having 20 or 30 rubbish years with the itch!!!!!!! As one GP kindly informed me that he has heard of the itching driving people to the point of suicide!!!
I was at a dermatology meeting today and they were talking about the various treatments for itch. 2 treatments were discussed and I wondered if they would help you.
The first is a cream called Dermacool, it contains menthol and helps itch caused by skin and systemic disease. You use it as an emollient( moisturiser). I could prescribe this for you if you would like to try?
The second treatment is treating the itch with a course of UVB light treatment. This can be done in Aberdeen at the dermatology department. It is very good for treating itch caused by kidney disease but also other systemic conditions. Would you like me to refer you to see a dermatologist and ask about this treatment? A Dr John Hewitt works at Albyn if you would like a private referral?
Let me know if what you think.
xxxxxxxx xxxxxx (email from my GP)