h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

OK. clearly I'm wasting my time entirely, talking to my Edocrine Dr/prof, as he won't pay any attention to what I say.
However, he does pay attention to stroppy letters written on my behalf by my GP. eventually......
Finally got a response from the endo prof, advising my GP Surgery to switch me from HC to pregnisalone and also advising me that my clinic appointment for the 19th aug is being brought forward to teh 29th of July

now, just got to wait for the surgery to issue the new script. which looks like taking a week for no reaosn wahtsoever.

I am so frustrated on your behalf! But it's good that there's some progress, and they've moved your appointment up Still going to feel like a very long four weeks though

You're in my thoughts, friend.

Thank goodness for some action, no matter how small. Fingers crossed for an improvement soon

Deb

Four weeks is a long time. Let's hope the new meds make up for them

I think Endocrinology opperates on a differnt time-fronteer to the rest of the universe

the hope is, the new meds may make quite some differnce; on the Hydrocortisone I've got a lot of side effects of the meds, and so have reduced from a 20 MG split dose to 15 MG split dose (reluctantly with the agreement of the Endocrine Dr/Prof)- however, as my cortisole day curve test showed, the 20 MG and/or 15 MG is both low for me; as my body metabolises it quickly, so I'm low lunchtime and evening - however, even though I'm low, I still get the side effects;
Of course, what I'm probably not getting whilst getting the side effects, is any positive effect of having replacement cortisole in my system
So, hopefully on a 4 MG and 2 MG split up dose of the pregnsalone (equivelent to 20 MG HC), hopefully I won't get too many side effects, but may get some positive effects, of not actually being chronically low on cortisole of course, as pregnisalone is a stronger glucocorticoid I may end up with worse side effects. in which case... dunno, there arn't many other alternative drugs about to replace the cortisole so then I don't know...

oo.... I wasn't expecting that... appears the GP surgery here works on a faster time-dimension to endocrinology; just out of vague hope logged onto the systm online GP surgery website, and spotted the pregnisalone listed in my long list of drugs (they don't seem to remove long stopped meds whicih can be handy sometimes ) so put in for a script, which will be ready to collect Monday, so can start taking the new steroid Tuesday morning - still have lotsto discuss with endo on the 29th, not least how, by then the new steroid is working, but also I think I need to up my thyroxin somewhat but want their 'permission' to do that and gona ask them if they can measure my free T3, as well as FT4... and I guess also on the 29th, to discuss starting growth hormone replacement and getting someone to teach me how I inject meself with it

This last post was a joy to read because it really felt as though you're optimistic. That's gotta help

Deb

I'm always optamistic! If not for myself, then I've got poor bee to think about.... got to be positive for her, and for frog

and. anyhow. you don't survive all the rubbish I've had go wrong with me, and not remain optamistic Heck, I decided the way to deal with having cancer, last year, was to become a full-time transvestite. seriously... If I ever start taking either myself, or life serious, then something has gone very very wrong with the universe

Anyhow. I've still got life ambetions to forfill. becoming prime minister for one.



Well two bits of news today..

First, the endocrine nurse who turns me on (gives me my intermuscular testosterone injections), phoned, to say, oncology have changed their mind, and now they won't let me have growth hormone replacement; despite that I've now successfully got approval from NICE to have it, and have met the criteria for it (apparently its about £3K or £4K per year to be on growth hormone, and once I start it I'm on it for life).

So I may have to try contact oncology and get some sense out of them; first they said no; I spoke to top head lymphoma DR bloke, and he said yes... and now they've changed their mind and come back saying no

second thing today; went and picked up the new steroids, the Prednisalone, to replace the hydrocortisone. all 178 tablets, which is 28 days worth on top of the thyroxin tablets I take each day I'm gona rattle

not sure they've got the dose right, but they've got it close - 20 MG HC equivelent to 5 MG Pred, but they've put me on 6 MG

gona start taking that tomorrow. I'm.... kinda quite desperate that it makes me feel more better, or at least less unwell than I do on the HC. running out of options TBH. but... there are always options

well, today is second day on the prednisolone goign to take my second, final dose of th eday, soon... hmm... maybe a reduction in oedema but hard to tell yet but awakward to say in general how its making me feel as I've not slept now in over two days (which, of course, may be a side effect of the prednisolone as the glucoroticorticoids interer with sleep a lot ) must go get something to eat, I guess so I can take the 5 PM dose