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

Sure, but you confused me, as you changed the writing in the quote lol.

Do you have any of the classic triad of Cushings such as stretch marks? What colour are they? Moon face/"Buffalo Hump"?

Yes I kinda do, but I have Cushings Syndrome the rare rare rare version of Cushings disease which is actually pretty common and easy to spot.

I have huge stretch marks, yeah, they are red and purple. Moon face, yeah if you look at pictures it has rounded a lot.

My Symptoms:

Symptoms

Feeling stimulated / "wired" (constantly)

Not sleeping daily, went 9 days confirmed in hospital

Easily over-stimulated

Dilated pupils (got pictures)

Adrenaline rushes (pumping in my veins)

Tremors hands and legs, spasms/sore muscles (weak and shaky on my feet)

Excessive sweating

Extreme fatigue

Bladder shrinkage (directly linked to how stimulated I feel)

Weight Gain - (Extreme 7+ stone in two years)

Yeah pretty nuts..

NervousWreck said:

It really gets me down Endos have not picked this up on you. Shocked, I don't know what to say to be honest, what is the next step of action for you now?

I'm sorry I understand the difference between syndrome and disease but does this mean like the syndrome may go away? I mean if you've had all these tests and they can't find any cause for it can it possibly be an acquired syndrome from plain long term stress/anxiety?

How old are you?

Did you definitely not change diet that caused the weight gain

I've got stretch marks, they are not bright red but I do have them, doctors just keep saying I definitely don't have it as I look nothing like a cushings patient, god knows, I had a 24 hour BP which came back 135/84. But I sat down for the whole day during the test and 100% noticed it was a lot higher laying down or on my side, yet doctors still won't listen, no further investigations.

I was in A&E once again yesterday 130/100 when I felt terrible and in an extreme "attack" but 169/99 when I felt a lot better! Makes no sense my BP is all over the place.

I feel like giving up on chasing tests, asking for tests, not ever knowing what is actually wrong with me, I have just been told it is all anxiety and especially Health Anxiety.

Yes I do have OCD but for someone to feel like they are in a panic attack and Sinus Tachycardia 24/7 pretty much, I can't rest and accept it is anxiety.

I want tests but GP won't do them.

Seriously tho I pray for you, that they will now find what is causing your cushings and get you back to feeling normal! Shocked.

Try to have a good Christmas tomorrow man

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Yeah but 20 in a million, shocked as I said myself, I went to one for a year. He kept using Urine Cortisol, which i've recently learnt isn't the best way, kept passing them but recently I fail them which shows progression.

What you need is dhea cortisol and iga saliva test, I did the comprehensive £107. NHS won't do this btw.

https://smartnutrition.co.uk/health-tests/adrenal-stress-test/

Mine was 5x past red, that's the graphs I showed you. This will tell you straight up if you have Cushings, as my Endocrinologist explained many times, anxiety patients have odd moments of high Cortisol but don't fail Cortisol 24 hour tests.

Disease - Pituitary gland is too big (Brain). They can test this in bloods at your doctors easily. Mine only comes in slightly over, if it was a problem it would be thousands over. Plus medications make it slightly high. I still keep an eye on it. Called prolactin, it's in a lot of Bloods i've done over the years standardly.

Syndrome - Usually to do with ACTH production, I was explained as I've had abdominal and brain MRIs, CT's and extensive testing on my Adrenaline glands etc is a rare forum where the begin tumour could be somewhere 'odd'..

My next step.. well St.Marys proved my Adrenaline was over the range, so he had something to run with. He also commented on how ill I was, I was soaking with sweat, hands were shaking etc. St Marys gave me cortisol blockers (2 types) both stimulating me, which showed my body is fighting it basically. After that failed he sent a letter to my GP to refer me to [Redacted] Royal Free specialised unit. I've left that in with my GP but no idea when that's coming back, gonna go in January, for some reason you can't seem to ring and ask.

Then I failed IGA, DHEA and Cortisol REALLY bad, like off the chart for all in one way or another, which is a test they use for this (there is 3). I rang St Mary's and he said yeah, you are waiting on a ACTH stimulation test and a full body MRI basically.

Then recently I Failed C-Terminal Glucagon (CGLUC) - Scan, weirdly we don't know who did the test (i've done a lot lately), I've had no one to talk to about, just read about failing it is a tumour indicator, my GP didn't know what it was and said that's basically for a specialist.

Naw it can't be stress or anxiety, you try staying up 9 days with 'anxiety' lol. When I say 'stay up', i mean I didn't go to bed at all, no rest or need, doctors can see now why, living on 5x what the peak of adrenaline should be, it's like someone who goes on a speed bender for many days goes into.

That's one big clue that I had something more serious going on, I have a good other 10 symptoms that I didn't mention up there ^. It started slow, like hair falling out etc, now it's a complex mess. Oh and try eating your normal diet and going from 12/13 stone to 19 stone in a year or two, i was always the same weight. Which is normal for Cushing Syndrome and can't be avoided. My stretch marks, i mean 8 stone in a couple of years, easy to see why they are deep bright purple.

Also it's hard to understand but I am STIMULATED to the point they thought I was in full mania. It never goes away. This is my main thinking what you complain about is nothing like what I have, I tried 30 medications to stop it and all we could find is Xanax 2-4mg gives a bit of a dip but soon comes back in an hour or two, nothing else I take apart from Beta Blockers. My own P Doc has stopped giving me AD's for now, as Cushings comes with depression (+DP on top gives me double yay), so until I fix that, we can't get a dose that will touch it.

28.

I have seen how they look.. I don't fit that extreme. My face is very round now, but with 8 stone on me, I don't look like i'm suppose to anyway.

Stretch marks I agree doesn't put you into anything. Heart rate doesn't really change in Cushings, you looked into POTS?

Cheers, all I can say is change doctors, I changed GP 6 times or something.. get that test and show a list of symptoms, the main ones unless I missed something (not really fully with it) mention heart which can rise during anxiety, stretch marks which anyone can get and waking up a lot, which again falls into maybe high stress hormones, but not Cushings, like I say, i'm not a little over, i'm 5x past red. I'd for £100 get one of those tests. One of the things it does show you is how ready to sleep you are (the 11pm one), if it's high normal, could mean you don't have any Endo issue at all, just high anxiety that wakes you up, which I am sure a lot of people get here.

I never want to put someone off, but if you could list them, maybe I could tell you who you should go see, if they still think it's health anxiety or nothing, sometimes you got to believe that, yes anxiety is a real bitch... Mine was just far beyond anything doctors had seen and I spent 10k and NHS. I'd go private with a list to the right type of doctor for a clean bill of health...

Also Cushings is so specific, you can rule yourself out of it. Test above.

(even writing this, I am now stimulated to the moon and just had to take Xanax to stop shaking and my eyes have dilated, I know because they bloody hurt when that adrenaline kicks in, which my test shows).

NervousWreck said:

"Good" Afternoon to you, Hotel, as always I am hoping you are getting somewhere, trust me, I do.

Right,

I ended up in A&E once again, Sinus Tachycardia 145 BPM, Blood Pressure 180/100. First spoke to advanced nurse practitioner who listened to my symptoms and then she spoke to A&E Consultant who was very worried of me being at 180/100. Next blood pressure (a few hours later) was 156/96. Tested negative for Troponin and other routine bloods and was discharged but told to come back for a meeting the following morning.

I met a Consultant Endocrinologist! Examined me, said I 100% do not have violent cushings stretch marks, no moon face or buffalo hump. Pheochromocytoma was ruled out back in June with "Plasma Metanephrines/Metadrenalines" All in normal range.

I have had a "Dexamethasone Suppression Test" which was sent yesterday along with "DHEA", I don't know what exact "DHEA" but I did actually tell him about you and our matching symptoms and he said he will test "DHEA" as it is the one I could see in your graph you showed me, I think?

He is 100% I do not have cushings and is also doing a 7 day ECG for me!

I am beyond relieved and so greatful to have met him, lovely Doctor (well a top consultant, head of department) who listened to me fully unlike other standard GPs.

I am also very greatful to you but wish you would get sorted right now.

So, so far I am waiting on Dexamethasone Suppression Test and DHEA, he said DST should be back in a week but DHEA could take about 4 weeks. It was the blood DHEA and I of course am obsessing and panicking I need some other test?

He said I have no violent stretch marks at all or moon face etc.

Forgot what else I was going to say already damn it.

Are your stretch marks very violent? Were they always violent? Do you have episodes of very long Tachycardia? Massive surges in Blood Pressure?

Basically I feel as if I am in a 24/7 Panic Attack and my heart rate proves it, I thought panic attacks only last for like 30 minutes, that's basically how I am, a constant never ending panic attack. No headaches and never any chest pain just a dreadful feeling of weakness and lethargy and like I am 100% going to faint.

If all this turns out to be anxiety then...

All the best to you honestly bro

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See our symptoms don't match up.

My blood pressure and heart rate can be a little low or little high just depends on when they get me, but nothing like 145 bpm, your heart would feel like or does feel like it's beating out of your chest. Guess I wasn't really thinking of just how high that is.

Yeah I think you can safely say you don't have Cushings or Phochromocytoma which shows up on that test.

Okay I'm getting pushed to my medical limit here.

Dexaethason Suppresion Test Vs ACTH test.

"The dexamethasone suppression test (DST) is used to assess adrenal gland function by measuring how cortisol levels change in response to an injection of dexamethasone. It is typically used to diagnose Cushing's syndrome."

"An ACTH test measures the levels of both ACTH and cortisol in the blood and helps your doctor detect diseases that are associated with too much or too little cortisol in the body. Possible causes of these diseases include: a pituitary or adrenal malfunction. a pituitary tumor."

hmmmm they are similar, I know ACTH is a longer thing, but the details, well that's what they are paid big dollar for. Both show if Cortisol is doing its job.

So if you did a DST, I believe it's HOURS of waiting or overnight? and then blood drawn before and after? it's a suppression test, you should feel a lot less cortisol and some probably calm? never talked to anyone who had it but I imagine as it's dropping your cortisol / blocking it.

IgA was the other, it's more an indication of antibodies, if you google it, it will mention things that I've been ruled out for. DHEA is good as it can show stress response, but yeah i'd rather not go too deep, I didn't do Endo school, lol I know what tests I needed and that took a lot of research, understanding it like they do, that's another world.

I don't think we have matching symptoms AT ALL BTW. I am open to you having an Endo issue, but it's not mine.

7 day ECG? good, they have to work out why your heart goes so high. I have to do one a lot before meds. I've also seen a cardiologist, but Endo is defo right now where you should be, this also should get you under a full time Endo? so is he writing to your GP? consultants in A&E can't just pick up a new case, least i've never heard it work like that.

Awwh me too, been in bed for days.

I mean you just got more tests in a day than I did for years.

Yah time to give Cushings up, I'd follow this guy.

Yeah they are, yep appeared very quickly and large, faded down now. (stretch marks)

No Tachycardia, no blood pressure issues.

I do agree, this is why I knew my Cortisol was wrong, it's like 24 hours a day, none stop adrenaline feeling, this is where we are similar, but Cortisol is a basic Endo function, just because we share that, doesn't mean a similar conclusion will be reached, or I could have done one sample which shows high Cortisol (done many) and then got a diagnoses. I mean eg, high cortisol could come from an adrenaline gland issue for instance or for Cushings disease the brain (which you don't have), same symptom, very different...

Sounds like you are on the right track, plus no need to pay for that test

oh you have this in episodes?

well, first thing you need to do is accept it. Until you accept that anxiety is a condition, okay not a disease (even better!), the sooner you can put in place what you need.

1. GOOD therapist, who is trained in CBT but doesn't just run through CBT all the time. I went private for mine, NHS are too white lab but you might find a good one, it depends just I guess.. i'd try NHS first, no harm.

2. GOOD p doc... again I went private but whatever, maybe my local services aren't up to power. Bupa did pull out of NI with one sentence saying "We find the services in NI to be sub standard".. so your local might be a lot better.

3. Self care... holy grail of dp page I enjoy, well written, i listen to books audio on anxiety well did, read a lot and got informed with what I was dealing with. One of the things once you learn self care is, you learn to use it without knowing or thinking about it, my favourite when I am anxious is distraction, I learnt to do it, but it happens naturally... like if i feel anxiety or something I just switch up instantly what I am doing or divert my mind.

Until then, find something when you are having what are probably panic attacks that bring you out of them.

For me it was her
I don't like ASMR or anything she says much in the video is just get lost kinda listening, but this can be anything.

You found the answer man, time to go to a GP and get the referrals,

A journey of a thousand miles begins with a single step

This is the first time I feel somewhat relaxed in a long, long time. What helped me? Steady-state low-intensity cardio; that is aerobic exercise. I think a big contributor to my nervous/anxious state has been that I've been training too hard. That has put my sympathetic nervous system into more or less permanent overdrive. The past week or so, I've done exclusively aerobic exercise (heart rate between around 125-150BPM), and I feel like it's significantly helped calm down my body and thus mind.

Now, I realize I'm most likely not in the same boat as most of you in this thread-nor am I suggesting that your issues are necessarily caused (or fixed) by anything like this-but I just wanted to add this as a heads up: exercising too hard can fuck you up both mentally and physically, even for a long time after the exercise. It's essential to have a balance of low and high intensity training. Aerobic exercise promotes normal function of the parasympathetic (rest & digest) autonomic nervous system (regardless of overtraining).

I read about this from some articles such as these:

https://robertsontrainingsystems.com/blog/long-duration-low-intensity-cardio/

https://biostrap.com/blog/hacking-your-parasympathetic-nervous-system/

Aerobic Exercise. Studies have shown that light to moderate aerobic exercise such as walking or swimming for at least 30 minutes per day at least five days per week can improve the PNS

(parasympathetic nervous system) response. Over time, the PNS response and Heart Rate Variability increase and Resting Heart Rate decreases. Mind-body centered exercise such as yoga and tai chi carry similar benefits.

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Turns out it *did* make a difference for me, as I can now somewhat relax and enjoy things. I no longer feel the need to fidget around constantly and punch a hole into a wall as much. My sleep has improved.