How long to feel better?

Sorry you've had a hard time getting diagnosed. I've also had a year of progressive weakness etc it's horrible feeling so lightheaded isn't it but hopefully we're on a positive path now things are getting identified and you'll continue to feel less faint and stronger each day :-)

Hi, thank you for your kind reply.  No isn't nice feeling lightheaded, it affects your concentration.  I hope that you feel better soon.  Are you on the Hydrocortisone?

Yeah I'm on hydrocortisone, quite a big dose at mo (40mg, split into 3 across day) as couldn't cope on 20mg so a&e doubled it for couple days, that helped a lot but if I try to reduce it a bit I start vomiting again, going to phone endo about it tomorrow. How about you?

Rosie, an FYI for your new normal   40 mg is not particularly high. 

[This is for Hypopituitarism (secondary Addison's) which is a lot less likely than that you will turn out to have than ordinary (primary) Addison's so your mileage may vary).

The normal daily dose is 20 mg (10/5/5). When one is sick, one should double this - no need to ask one's doctor. [Some people on this site talk about triple - I would think that definitely would need doctor's orders]. If you end up in A&E and/or had to have the emergency injection, double dose for seven days afterwards is typical.

It's a bore but you get used to it to the point that you realise you need to set daily alarms on your phone to remind you to take your meds.

Thanks Roddy. That's very useful to know about doubling for 7 days post A&E. I don't think my current endo is very familiar with managing people with adrenal insufficiency from a few things he's said so far. If I get the diagnosis this Friday I'll ask if I can transfer to someone who is most specialist in this.

Sorry was a little confused about your comment about whether it was more likely to be primary or secondary insufficiency. Are you saying Addisons/primary is the more common? This is all a bit of a new area to me so I had been wondering which outcome was more likely.

I feel like I 'zoom' through the cortisol in the morning - I take 20 at 7.30am and by 10.30 I'm really longing for next dose. I usually take it at 11 and then the next at 4pm but I tend to be ok with that in noon/eve. Its really helpful to read about others' experiences managing things here, thankyou.

The synachthen [synthetic ACTH] test will determine whether your natural low cortisol is because either [a] your adrenals can't produce it (="primary" or don't produce it because your pituitary never asks (= "secondary".  Strictly speaking, only primary qualifies as true Addison's and otherwise you should say "adrenal insufficiency". But nobody bothers because  it is a good shorthand since the first response treatment of a crisis is the same either way . 

Adrenal disease is more common than pituitary disease.

I have read other people's stories where they found what worked best for them is 5 mg four times a day - one person even adopted 2.5 mg eight times in 24 hours. I have mine at 8, 1, 6. So at this stage in your diagnosis, I wouldn't get too worried about The Rules. While you are on 40, you can space it more conveniently. What you are aiming for is to mimic the natural cortisol cycle which is maximum at 09:00 and minimum at 03:00. [Adjusted for your daily rhythm, I suppose?]. I suspect that what is giving your endo grief is how to manage your condition because it seems to be teetering on the edge of drama/crisis. Also, medics get dire warnings about putting people on steroids, but we are a special case where we are just replacing an absent natural hormone.

The silly s above should just be ) signs. And I have no idea how I managed to achieve bold font!

Ha, teetering on the edge of crisis is exactly what it feels like lately to be honest you're bang on! I'm hoping once test done they'll get it more smoothed out, but I'm asking to be admitted night before test as I know I won't managed from home to test without the AM dose, as I can't manage it even on half dose let alone none. Someone mentioned I might be 'depleted' after being ill with it so long so maybe I need a bit of a recharge/extra for a while. And yes, all the medics I meet are VERY reluctant to dose me up despite the semi magical effects if they eventually do!! Ah well, only 2.5 days til test now...