I am looking for some help from people who no doubt have suffered from low cortisol levels at some point.
To keep my story short (you can read my previous posts for a more in depth view) I collapsed in May 2013. At first it was diagnosed as a lupus flare but then that was thrown out as my inflammation markers were not bad. It seemed at that point that the NHS got bored and since then, and due to me being very ill, i have had to take on the responsibility of finding out what is up.
In June 2013, a private endocrinologist diagnosed me as having secondary adrenal insufficiency with possible steroid resistance due to a STIM test that threw up a baseline of 39 rising to 80 after the dreaded injection.
I then transferred into the NHS system to see a consultant who is reputedly a world leader. Since June 2013, i have seen him twice, once for an initial consultation which lasted for an hour and was very useful and then again in March 2014 for 10 minutes where he said that i was improving and would continue to improve as in his opinion, the steroid use in the past had switched off the adrenals. I didn't get chance to tell him that whilst my cortisol test results at the hospital in the mornings appear to be improving, I was experiencing huge crashes, at times, within 30 minutes I could go from feeling reasonably happy to being doubled up with abdominal pain, feeling sick and dizzy, as if someone had stuffed cotton wool into my head.
This has continued and since July 2014, I have been in a desperate state, visiting my GP on 4 occasions only to be told that i need to talk to my Rheumatologist and Endocrinologist. As if I didn't know that, the problem is, I can't get into see them.
My endocrinologist thinks that i should be symptom free now, and if I am ill, it is due to something else, but I know it is the cortisol.
My results so far
June 2013 baseline cortisol 39 rising to 80
January 2014 baseline 190 rising to 250
Genova saliva test - underperforming at all parts of the day with a daily cortisol of 17 (range 22 and upwards)
GP cortisol results
April 2014 baseline 190
June 2014 baseline 138
July 2014 baseline 100
Cortisol Curve test which included me taking 20mg cortisol
8.30am Baseline 250 rising to 420 after 10 mg cortisol
1.15PM After another 10mg 138
Is this normal????
The other question I have to ask is, is it possible for people with adrenal sufficiency to summon cortisol when needed. i get the impression that when I need to do something such as get to the hospital, host a dinner party, meet people (become quite a hermit as I always feel ill afterwards) etc that I produce the cortisol to the point that I am slightly edgy but then as soon as the event is over, I drop, almost as if someone has taken the plug out.
This is the reason my cortisol is always high when I go to the hospital, as when compared to the GP who is just down the road, they are much lower. My body is feeling more relaxed
This is pure conjecture but without being able to speak to my consultant, I am pulling a stings to explain why me, a 47 year old, fit, albeit with Lupus and an under active thyroid am finding that the only way that i can exist is to stay at home, speak to noone and hope for the best. Thankfully I don't work, absolutely no idea how I would cope if I did
Many thanks for your patience in reading this, please help me as I am feeling so low now with 5 days out of a week feeling awful.