Cortisol causing havoc……… and I don't seem to be able to see my consultant, and my GP won't treat me as she wants me to see the consultant!

[Chablis]

Hi,

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

12.15PM 150

1.15PM After another 10mg 138

2.15PM 71

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.

M

[misty14]

Hi Chablis

I can't offer cortisol advice- sounds a nightmare!

As your GP wants advice he/ she should be willing to write to the Consultant and this could help you get an appointment.

Alternatively have you tried ringing their secretaries , explain you need help and ask how to have an earlier appt.

Thirdly, you could try the clinics and ask to be considered for a cancellation. I've done a combination of these and been lucky when I've needed it most and you need it!. Hope I've helped and good luckX

[jellynpain]

Hi Chablis,

Omg, having just read your post I am gobsmacked as our experiences are so similar.

I initially suffered a collapse (lost use of all body strength and mobility).

I was in hospital (neuro) for days, though they did little except keep standard eye on me.

Discharged still poorly but some improved mobility. Neuron's didn't give a damn, not interested as said not MS.

Suffering severe frequent fluctuating poor mobility and so many other problems alongside (too much too many to list) I was lucky to see a gp who has tried to help ongoingly. He says its ME (not CFS).

Three years late R, still having same problems though along the way tests found a pituitary adenoma, literally half a thyroid gland and low cortisol level (under 1) to point of lab advising gp to contact me urgently for further tests.I get skin dashing but so far ana ok.

About a year ago the pain kicked in hence FM diagnoses secondary to CFS/ME.

Endo totally disinterested in me, neuro's too, gp continues to test when feels needed. Basically had to just put up with apart from pain Amph. Major life impact. Lost job (ill health contract ended).

Incidentally my first problem was severe tingling & pain around skull, made me feel so ill & unsteady scared to be out alone. Still get some of that.

Anyway, cut a long story short, you must insist on any further appropriate tests, if gp not helpful change.

As we are s o similar be great to keep in touch.

Hope your day isn't too bad xx

[Chablis in reply to jellynpain]

Hi

Thanks for replying, any morsel of understanding is gratefully appreciated as I am beginning to believe that everyone thinks that I am making it up. I have hit a real low this weekend with my husband fearing for my sanity it has resulted in him emailing my endo directly telling him of my symptoms, some of which are new and all definitely getting worse. One of my major ones is a feeling that I need to urinate a lot, and sometimes it can become excruciatingly painful as if I have an infection but no infection has ever been found.

My eyesight and fuzzy head feeling is getting worse alongside a kind of echo sound in my left ear.

I am also feeling the tingling and joint pain, had to take ibuprofen last night just to get to sleep.

Having said all that, sounds like you have had a far worse time....I am really sorry. I am not surprised that you struggled with your job, I can't function on a day to day level unless I sit quietly without any social interactions, and on the days where I need to do something, I have to up dose on the cortisol

Would like to keep in touch, it helps

Are you in the uk?

M

[jellynpain in reply to Chablis]

Hi Chablis,

Sorry your suffering too

[jellynpain]

Hi,

Thanks for your message. I can really relate to everything you have said.

You wouldn't believe how much your messages seem as if I have written them!!

Consultants haven't been any help to me to date and one nice Consultant actually told me that ''you will find if a Consultant doesn't know what is wrong with a patient they are more likely to close down on you, not look further, as its easier than admitting they don't have the knowledge''.

Taken me a long time to accept this, just couldn't understand how or why Consultants just abandoned someone.

Neuro wanted to go down Neuropsychological route but I am not happy in doing this as I have 'organic' defined symptoms plus he didn't do the tests relevant (he wasn't nice to be honest). Then another dry. diagnosed CFS/ME, I advised previous Neuro Consultants. He wrote back, the content made clear he believes CFS/ME is a somatic condition (old school!)... disgraceful.

I had months of trying to cope with being unwell and fighting the fact that Consultants weren't doing anything. That's when you can start questioning yourself and shouldn't.

Where are you at now and what tests you had done?

If your gp isn't supportive and proactive you really should find one that is.

My gp continues to check things out as is very supportive.

I don't want to bombard you with loads more stuff in one message . Maybe sharing info will benefit us. Definitely being able to talk about is a good thing.

It's hard for peeps close too.

Hope you get some decent sleep, its important.

Speak again soon xx

Ps uk based... you?