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
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.
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 London 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.
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).