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High Adrenaline, High Cortisol.. but can't seem to fit into any box..

4848 Views 24 Replies 4 Participants Last post by  PerfectFifth, 
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I think my DP is secondary to my high adrenaline and high cortisol, anyone else had these tests? anyone relate?

TLDR at the bottom. Thanks in advance. 28, Male, 182cm, 18 stone (was 12 previously), White, Duration 4 years/5,

Current medications; Xanax, Doxazosin, Escoltapram (Tried 30 + mediations listed below)

Smoke lightly, drink to crash this wired existence once a week.

Complaint: Stimulated beyond belief 24/7 until after many days no sleep and stimulation, I crash. Sweating, tremors, fatigue, weight gain, dilated pupils, adrenaline rushes, bladder shrinkage, depersonalization, anxiety, depression, etc.

The above makes sense, as my Cortisol and Adrenaline is high, but WHY? Endo's and physiatrist can't work it out either. They have both said anxiety disorder would not make the levels I have.

I've spent 4 years, many thousands and free health care, everyone agrees it's extreme (been hospitalised etc) but no one on earth seems to know what it is. I've had had EEG's, MRI's, CT's, Endo's, P Docs, Cardiologist, GP's.

Ruled out: Phaeochromocytoma, Cushing's, Thyroid Glands (CT + Bloods), Adrenaline (CT + Bloods), Bipolar, POTS (tilt test etc), Autoimmune disorders (Bloods etc). Amongst many other things.

Now, after 4 years what we know on paper is my adrenaline is high, "Plasma adrenaline - HIGH - rose to 568 above the normal range of 0-459 No nocturnal fall - On the 24-hr BP/HR autonomic profiles mean daytime BP was 133/92 and HR 88, without the expected nocturnal fall. Worse when standing, The BP was elevated at times when he was polysymptomatic, the highest being 162/101 when standing. No evidence of autonomic failure".

We also know that every time I do a urine test for Cortisol it is above the range slightly.

But we can't pin this to anything, for instance as well as being stimulated I am now allergic to pseudoephedrine and ADHD stimulants, which they tried amongst many other things to see how I'd react. One doctor said I seem "Angernegic" but couldn't label me with any condition, my own GP is now reading about Adrenaline Fatigue, as he said the other something like "I never believed it was a thing until I've spent 2 years on your case".

Waiting on Spit test this upcoming week for:

lgA

Coristol

DHEA

Medications tried:

No change:

Lithium (Highest dose), Melatonin, Depakote, Quetiapine (50 to 800mg,), Lamotrigine (couldn't tolerate), Olanzapine 20mg, Buspirone /Promethazine/Buspirone/ Diphenhydramine (makes my heart jump) Mirtazapine, Zopliclones (15mg), Zoloft.

More Wired/Stimulated:

Elvanse, Backlofen, Phuesdephridrine (Sodafed), Guanfacine, Coffee, Clonidine

Descriptio Clonidine

Slightly helpful: Propranolol 80mg for shakes, Clonazepam

Sometimes lower stimulation for a few hours;

Xanax, Doxazosin

TLDR;

High Corisol and Adrenaline in urine and blood respectively, what could I have that isn't ruled out (Phaeochromocytoma, Cushing's, Thyroid Glands (CT + Bloods), Adrenaline (CT + Bloods), Bipolar, POTS (tilt test etc), Autoimmune disorders (Bloods etc).

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PerfectFifth
I have similar issues: anxiety/unable to relax, wildly fluctuating blood pressure (from 100/60 to 200+/115+), gut issues, weird inner restlessness/itchy feeling inside, muscle twitching, frequently unable to fall sleep and randomly waking up fully alert and unable to go back to sleep, occasional arrhythmia, DP/DR, sweating, elevated heart rate, cold flashes, fatigue. I'm thinking it must be also adrenaline/cortisol-related.

I know it's not anxiety because there is no correlation between my mental state and the symptoms, or rather the symptoms come first, and then I might get distressed BECAUSE of them. I also, like I mentioned in the list, wake up to this feeling often, which means that it's impossible that it's be psychologically-caused. It's fucking awful.
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PerfectFifth
NervousWreck said:
You sound like my lost twin seriously. Exact same, do you feel so sleepy but then wake up and can't sleep at all? I'm at the ER, 150 pulse
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Yep. It takes me hours to fall asleep even though I'm exhausted. I often have to be up for 24+ hours to have a chance at getting any sleep.
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NervousWreck said:
Hi man, I haven't "liked" your post as I understand the sheer fkin turmoil of the stimulation you describe.

I myself have had pheochromocytoma and cushings ruled out. My feeling of being insanely stimulated has come on only recently, do you feel like you want to jump out of your own skin, run at 100 miles per hour, but feel tired and exhausted at the same time?

I constantly move my legs from side to side, I seem to get "attacks" but they are not anxiety attacks, I have worked it out now that these are attacks of what feel like the strongest most horrible stimulation and insane restlessness. Do you find you can't even sit still and even with your hands to simply type letters on a keyboard on here for example?

I also have the feeling of wanting to jump out my own mind as I cannot think straight at all with the stimulation. I find myself sitting and waiting for my days to end, the only thing that helps me is snuggling up in bed.

I have no idea what it is but I promise I feel for you with all my heart believe me, new symptom for me and I just cannot relax, they want me on "medication" but I know it will not work.

Comes in spells for me and disappears for 40 minutes then comes back and I feel like ending myself when it's happening, f knows what it is, as we have both had all endocrine etc tests ruled out it is a fkin pain, nobody will ever understand how it feels.

I cry my eyes out so bad, I would rather have panic attacks, my blood pressure is all over the place, sometimes very high then back to normal but averaging at a not good level. Don't worry about blood pressure tho, it constantly changes cos of whatever this s**t is we have.
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I get you man.

Yep I am so stimulated constantly, then I crash and extremely fatigued, I am fatigued also when I am stimulated (just incase you thought it goes one then the other), my eyes are dilated etc, they can prove as above my adrenaline and cortisol is out of wack...

I've been given some heavy medications such as A1 adrenaline blocker which is suppose to stop your adrenaline getting too high, like a more powerful beta blocker which I also take from time to time. Mine is soooo extreme that even writing this is stimulating me.

Yeah same, my feet are shaking.

We need to keep in touch as you might have what I have, but doctors are like confused in my case, as mental health usually doesn't show high adrenaline on paper, (i suggest you get Cortisol spit test and pee test and have your adrenaline levels checked, my adrenaline levels were only found in the blood when they did it with a tilt test, i can explain these if you need)

Sounds like you are stimulated like me... hmmmmmmm, my next step is to take this information I have back to [Redacted] St Mary's autonomic who gave me the adrenaline blocker and tell him it's not working, with a new test of Cortisol to show it... but weirdly as you can see very few people have this stimulation problem.. I don't believe this is DP.

It's either;

Anxiety so high that fight or flight is stuck on

Endo (which I've been ruled out for everything under the sun)

Cushing's syndrome - research this

That's all i can think of (thought i was gonna write a list)
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Where said:
You've been to an endo for your elevated levels but they're stumped?
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I've been to 4 endo's and they are all stumped
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PerfectFifth said:
I have similar issues: anxiety/unable to relax, wildly fluctuating blood pressure (from 100/60 to 200+/115+), gut issues, weird inner restlessness/itchy feeling inside, muscle twitching, frequently unable to fall sleep and randomly waking up fully alert and unable to go back to sleep, occasional arrhythmia, DP/DR, sweating, elevated heart rate, cold flashes, fatigue. I'm thinking it must be also adrenaline/cortisol-related.

I know it's not anxiety because there is no correlation between my mental state and the symptoms, or rather the symptoms come first, and then I might get distressed BECAUSE of them. I also, like I mentioned in the list, wake up to this feeling often, which means that it's impossible that it's be psychologically-caused. It's fucking awful.
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Same man, I know it's not anxiety, it's fight or flight bursts. I know because it doesn't matter if i'm just laying in bed or whatever, I wake up stimulated like you do. Mine has just got extreme, I wake up shaking before tablets now a lot because of the fight or flight..

You should get Adrenaline and Cortisol tested, as said above my Adrenaline in the blood was only found doing a tilt table test and getting bloods during it then it went way over.. one reason i know to keep laying down as much as. But ruled out for anything that's related such as POTS.
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NervousWreck said:
[quote name="PerfectFifth" post="608658" timestamp="1572762910"]I have similar issues: anxiety/unable to relax, wildly fluctuating blood pressure (from 100/60 to 200+/115+), gut issues, weird inner restlessness/itchy feeling inside, muscle twitching, frequently unable to fall sleep and randomly waking up fully alert and unable to go back to sleep, occasional arrhythmia, DP/DR, sweating, elevated heart rate, cold flashes, fatigue. I'm thinking it must be also adrenaline/cortisol-related.

I know it's not anxiety because there is no correlation between my mental state and the symptoms, or rather the symptoms come first, and then I might get distressed BECAUSE of them. I also, like I mentioned in the list, wake up to this feeling often, which means that it's impossible that it's be psychologically-caused. It's fucking awful.
[/quote

You sound like my lost twin seriously. Exact same, do you feel so sleepy but then wake up and can't sleep at all? I'm at the ER, 150 pulse
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What did ER say?
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PerfectFifth said:
Yep. It takes me hours to fall asleep even though I'm exhausted. I often have to be up for 24+ hours to have a chance at getting any sleep.
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I was in Hospital after 9 days no sleep, they monitored 4 of those, this shit is nuts, believe me I didn't believe that was possible till this shit got bad.

I don't sleep at all without Xanax, i just stay up until someone sedates me.
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NervousWreck said:
Going through a serious attack now, not nervous just so agitated and restless and the question we both ask is why? I have had urine catecholamines and plasma metanephrines, all in normal range, I used to take propanolol but I still had Sinus Tachycardia.

What I can honestly tell you is this stimulation/agitation/restlessness has only developed in me since the start of this DP/DR, honestly I have never had anything like this.

I have given up, I am suicidal, all i do is keep telling myself I'll be back to normal one day.

I don't know, if our tests can't pinpoint a condition so you think it is purely stress mate? I can just about type and anything else is a joke.
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Yeah, I keep asking why, i believed it was anxiety till i was hospitalised for staying up for days and being so stimulated they thought i was on drugs until they realised i wasn't lol, I had catecholamines done many times and they showed nothing till St Marys did it with a tilt test, why? I guess this adds some stress to your body, but even he told me this isn't anxiety, he said like cortisol and adrenaline yes but the cause, no, if you are waking up stimulated and it doesn't stop, something has gone wrong... obviously he said it like a doctor not like I just did lol.

Mine started a year AFTER DP. A good year (by that i mean i was feeling alright). I know 30+ peoples story on here and until you no one I've met is stimulated lik plugged into a light bulb like us.

I feel like giving up, pretty much at the end of my rope myself man, it's been 3 years of constant stimulation, with weeks in bed, but ever so often I get a minor break through.

NO, might be caused by stress but now our adrenaline is running wild if you ask me, an easy way i find to tell is just look how big my eyes are depending on how stimulated i am.

Anyway, Cushing SYNDROME not Disease is very interesting.. have a read about it
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Cushing syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time - so caused by anxiety but not anxiety.

Edit:

24-hour urinary free-cortisol test

Mine is above range

Late-night salivary cortisol test

My cortisol doesn't drop in 24 hours

Low-dose dexamethasone suppression test (LDDST) *haven't done*

In this test, you will take a low dose of dexamethasone, a type of glucocorticoid, usually around 11:00 p.m. A health care professional will draw your blood the following morning, usually around 8 a.m. Sometimes doctors use another type of LDDST test, in which you take dexamethasone every 6 hours for 48 hours. Your blood is drawn 6 hours after the last dose.

Normally, cortisol levels in the blood drop after taking dexamethasone. Cortisol levels that don't drop suggest Cushing's syndrome.

https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

https://www.niddk.nih.gov/health-information/endocrine-diseases/cushings-syndrome
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NervousWreck said:
What are the doctors doing for you regarding your cortisol and adrenaline mate? They know your levels like what are they doing about it or is it just simply they can't find a cause for it? For me it is like the attacks lead into panic attacks for me, the worst thing is people saying "go get some talking therapy" Yeah sure, but as we know, WHY do we feel like this? We are not THINKING of anything. They will never understand
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They tried the 30 medications I listed.

As for now - Alpha A1 Blocker 1mg, Beta Blocker 40mg x 2, Escotalapram 30mg and Xanax x 4 DAILY! and still can't bring this down.

But I read an article that Cushings Syndrome not Disease does not respond to these, hence the third test mentioned above. My Cortisol didn't drop with Xanax even though it can help my wired, my Cortisol pee test (done like 6 at least) still came in high.

What are they doing, well nothing, but a doctor online has said he seen someone like me with Cushings Syndrome who is negative for Cushings. I am gathering information, doing a salava test in two days, then going back to St.Marys (very famous [Redacted] hospital) with my findings (already been twice) and see where we go.

I don't get panic attack, I just feel like 1,000 cups of coffee are in me. I have talk therapy and my therapist doesn't think it's the issue at all, she can see how stimulated I am, she knows now just by how I walk in the room, I keep paying for her though as it's hard to have a long term health condition, never mind one untreated.

They will when you get a diagnoses, seriously, take a bit of time and see if Cushings Syndrome sounds like you, the others i'm sure your Endo ruled out...

BTW, I am gonna have to sign off because i'll only get more stimulated, i'll check in tomorrow
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Hmmmm, I should maybe email you my diary and some of my systems, thoughts etc, and will keep everyone posted (updates) on this forum, that's if you wanna, just give your email and we will talk more.

I don't have low blood sugar, i get mine checked a lot.

I'm doing a Cortisol spit test with Iga and DHEA - costs around £100/$100. Worth doing.

I'm also contacting a top specialist who has seen me twice once I complete this test within the month.. will update that here too

Sorry you are going through such a tough one, i'm in the same boat, but my Fatigue is taking over, spent 16 hours in bed 3 days in a row, the second I am up the fatigue turns into complete stimulation (with fatigue)... it's a tricky one, but what I have is beyond anxiety, I know there is something wrong with my endo side because i've failed two tests, Adrenaline and Cortisol now. Even though 4 Endo's don't know, someone does.

I want you to read the Mayo Clinic Link

https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

This can actually be caused from Chronic stress. It's got three tests to diagnose yet no one looks for it as it is not normal, 20 in a million
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James_80
NervousWreck said:
Currently thrown myself into bed with an attack of whatever the hell is happening to me right now, heart started racing out of nowhere, trembling and shaking everywhere and a horrible unexplained weird burning pins and needle shooting through me.

Crying my eyes out, not going to hospital what will happen will happen, I give up.
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That sounds horrible, sorry to hear that happened. How you doing today?
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James_80
NervousWreck said:
My heart rate settled after like 4 hours but today I am extremely restless and nervous for no reason at all, I feel extremely spaced out, just got my blood work up back, all clear, no diabetes.

I have a 24 hour blood pressure test soon and if it comes back high I may have to see a cardiologist, my doctor strongly believes the cause is my anxiety but he is an excellent doctor and will refer me to a cardiologist if appropriate. I've had like 60 normal ECGs and a cardiologist will do an "Echogram" and other tests if appropriate.

Thanks so much for asking how I am once again James, I am starting to think caffeine may be making me a lot worse.
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It's good you're having all the tests done to rule anything out. How much caffeine do you have? I would say try cutting that back and see if it makes a difference. Try and cut the coffee out completely if you can. Just a cup or two of tea a day is all I can manage myself. Any coffee and I will feel an initial good buzz and then will crash later in the day and feel awful the next few days. Do you take any multivitamins? Might be worth cutting them out and see how you feel. They made my anxiety much worse as well. Any changes you make in your diet might not show up until after a few weeks so give it time.

Are you on any medication? Propanolol helps with racing heart and palpitations and panic attacks. A sedative atypical antipsychotic can really bring your anxiety levels down but takes a while to get used to them. Ssris are first line medication given out by doctors but make you worse at first and I wouldn't recommend you take them unless you have them alongside a benzo like diazepam. Good luck!
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mind.divided
Anxiety causes adrenaline and cortisol to be released. Source: I'm studying endocrinology
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PerfectFifth
mind.divided said:
Anxiety causes adrenaline and cortisol to be released. Source: I'm studying endocrinology
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Yes, when the systems are working as intended, it's released in a stressful situation and then goes back down afterwards. There are disorders/diseases that cause imbalances in these hormones.
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oh sugar, i turned off notifications, didn't realise this was trending.

99% sure I have Cushings Syndrome (20 in 1 million)... that's not me 99% sure that's St.Marys [Redacted] (cost a bomb).

http://imgur.com/2ypnz1H

Read that and scroll down to the second picture.

Cortisol is 5x past red, i also hit a tumour marker a few weeks ago

Ps, 6 years of tests!
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NervousWreck said:
I drink 2 teas every morning and the odd Lucozade, I stopped Propanalol back in June as it made me unable to exercise and I felt worse on that. I refuse to go on any drugs I don't trust them. I've actually researched vitamin B1 deficiency and it's effects, so I started taking it 3 days ago.

I know a lot will rage and think I am stupid for not being on drugs but Propanalol never helped me and I have also been on SSRI, Citalopram.

If I get the all clear with my heart I can accept everything to be pure anxiety and move through it.

Then I will obsess about having "silent seizures" as forestx5 was found to have after 40 years. I would love an EEG but don't think I will get one.
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Where do you live?

I've had in the UK EEG, MRI x2, CT x2... no reason you can't get one (if in the UK)
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mind.divided said:
Anxiety causes adrenaline and cortisol to be released. Source: I'm studying endocrinology
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Yah, but my scores were seen by Endo's (3, 1 for a year), they didn't know what they were looking at, as Cushing's disease I kept not hitting the markers, then I spent a bomb and went to the head doctor of St.Mary's a few times and he was like, dam.. 5x over in the red, we are looking at Cushings Syndrome, he said to be fair most endo's would learn about it but never see it, it's 20 in 1 million as i said, so i get why they could miss it, but then again I don't... anyway, getting there.

Also told by St.Mary's that I don't have anxiety disorder, I have endocrinology causing it atm and yeah basically till i get that sucker out of there, it's a chicken and the egg situation, can't fix anxiety. He knew when he tried 3 Cortisol blockers and mine got higher
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ps, this is not a normal DP thing, just incase anyone skims reads this. it came with a lot of physical symptoms, tremor, not sleeping for days, stimulated 24/7 past anxiety stimulation. more hypomania, huge adrenaline rushes, never feeling tired yada yada
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