How long to feel better?

Hormones
1

Hello, me again I'm afraid.

Just wondering - for those of you diagnosed with adrenal issues - how long did it take you to start feeling better once you were on medication? Roughly?

Thankyou

Rosie

2

Hi Rosie,

​I experienced a gradual improvement over about a year.

3

Noticing in driving the car from A to B and becoming more alert.  More energy doing my exercises.  Better able to concentrate on the contents of a book.  Subtle improvements.  But very pleasant to experience.  I also started to sleep better, deeper sleep. 

4

Hi Rosie I started to feel better straight away,and have felt stronger every day since diagnosis just over 3 weeks ago. I know my limitations & get tired at times but I'm learning to listen to my body.

 Best wishes Lorraine 

5

Rosie

Two or three days, and when I had a recurrence recently due to a bad virus, having been given 600 mgs of Hydrocortisone, I was back on my feet in a day, though still suffering the effect, to some extent, of the virus itself.

6

Oh my goodness, I hope it doesn't take me a year to feel better! Interesting that you mentioned driving though, I've been struggling with that for a while, feeling out of it and spaced out...

7

That's great I'm really glad you've made such a quick recovery. I haven't (yet) had a crisis and just started on a small dose Day before yesterday (just taken 4th tablet). I wonder if that's part of the problem and I needed a 'boost' or something first. Wish they'd take me in and sort it out.,,

8

That's great 2 or 3 days is doable. I just feel so awful in the mornings it's scary! Kinda wish the hospital would take me in to keep an eye on me and get it sorted but I know they're overwhelmed with people...

9

Rosie

When my primary Addison's was finally diagnosed after 5 weeks in hospital where I had been getting more & more ill, increasing weakness, vomiting, confined to bed etc it took about 48 hrs for me to feel like a miracle man. By this I mean I had a new appetite, could get out of bed and walk around, was no longer being sick. That was with taking Prednisone 25mg b.d. I seem to remember. After that I got up and made the tea and took it round the rest of the ward - normal practice in the 1960's. I was out of hospital in less than a week and back to work after a fortnight or so having had over 3 months off that year. The only downside was that my weight increased drammatically from 58 kilos at the bottom to over 100 kilos which has left me with stretch marks to this day!

Provide you have no other medical issues, Addison's is no big deal, provided you take your pills, remember to increase the dose by x 3 in case of infection, and have an emergency kit with you when you travel. Make sure you mention that you have Addison's to every doctor/nurse/dentist etc and that they have understood what you said, as well as telling your close friends/family about the possible future implications.

Best wishes

John

10

I felt better after a week...but after a few days I was OK too just felt I couldn't keep still

11

Thankyou everyone :-)

I ended up in hospital again today as I was a state, they've decided to double my dose for a while and send me home as they've no beds. Here's hoping it does the trick!!

12

For me, after about two weeks it was like I was on steroids! 

I had been tired all the time, struggling to keep up with friends and then pow! friends struggle to keep up with me! I talk about a light switch but to be fair it was more like slowly winding up a dimmer switch.

The ACTH test is just to check if your adrenals are responding to ACT signal hormone. If your cortisol remains low [no response] then it suggests lazy adrenals and primary Addisons, But if they do respond [and push out cortisol], it points at the pituitary not sending out natural ACTH when it should and that suggests a lazy pituitary abd secondary Addisons, So the test is not going to make you better or worse, it just helps your endo decide where to go next.

13

Thanks, that is good to know, it would be nice to be a functioning person who can go out and about with friends again soon. I am feeling a lot better now they've doubled my dose today as think I was quite depleted.

I'm not worried about the actual ACTH test, but hate that I've got to go off the meds the day before and the day. Scared I'm going to turn back into the vomiting, shaking, weak wreck again arghhhh let's hope not!

14

For my daughter it was 10 days or so to gain energy and about a week before her appitite started to improve

15

Rosie, that is so scary. I've been lucky, only had one 999 call in three years (consultant said I'd be fine 99.9% of the time = once per 1000 days = once in three years!).

Now for the really important bit. You need to ring your GP practice  first thing Monday to request a scrip for emergency hydrocortisone, which is 100mg injection. Preferably Efcortisol because it is premixed, otherwise SoluCortef. Then you need to cajole a 2 or 3 ml syringe out of the practice nurse, plus a blue AND a green needle (blue to inject, green to mix/fill) [Don't ask for a scrip for these, it'll take forever and be wrong!]. Hopefully you/your parents won't have to do the actual deed [the paramedic did me but she used my emergency kit] but see YouTube for a how-to.

My reason for saying this is that the NHS is so underfunded and A&E so overloaded that next time might be the time you have to wait even to be triaged and you don't have time for that. Jab first, ask questions later.

I suggest you get yourself a hard copy of "Factsheet to A&E and Hospital staff about adrenal insufficiency" available free to download from www DOT pituitary DOT org DOT uk  (go to "Information" then "Publications" then "To A&E and Hospital staff - Adrenal Insufficiency&quot. You might need to show it to a paramedic or triage nurse.

16

Thankyou everyone for all the insights and advice - very much appreciated, useful and reassuring! Many thanks x

17

It took me a couple of months before I started to feel better properly.  I was admited into hospital with a cortisol read of 95 when it should have been 450.  It took my GP two years to diagnose Addisons, so the Cortisol was dropping very slowy. I got so weak that I was unable to use a knife and fork or lift a plastic chair and lost loads of weight. Still feel lightheaded even though I am on Hydrocortisone. Most of the time I feel alright, although I notice if I forget to take my Hydrocortisone.  The recovery rate for each person is at a different rate.

18

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 :-)

19

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?

 

20

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?