ACTH is a very very difficult test to do accurately so a zero test with a high cortisol sounds to me like lab error.
Were the draws in chilled EDTA tubes, did the tech put the tube in the centrifuge or the bin? If the bin, then it is lab error - the ACTH simply degraded away...
Sodium should not be borderline either.
Sounds like you need someone who knows lab testing as well as Cushing's syndrome. Cortisol should not be elevated. Were the tests done at 8am, fasting?
I had them done at 9am I need to find a good Endo I just wish I knew any. My endo now says my cortisol is always high because I'm a sensitive person to stress... Oh he says that my sodium is fine too... What about when I start exercising some day won't I loose even more sodium??? I don't sweat now cause Im to tired to move.
I don't know how they did my ACTH :( but it's the 3rd time it's come back low and they where done at different labs bad luck perhaps?
Do you know of any doctor in the uk that could help me?? I'm desperate
Stress - um, no. The range is set so that normal is normal but if you were that stressed and your body was not handling it correctly, your response is abnormal - hence the disease process. Thus you start looking for a source.
You need to watch how they do the test and insist that they do it correctly. I am very insistent when I get my tests done and some techs are ok some get very angry. But I am paying for the test and get judged by it - I want it done right. I have gone to lots of different places and had it botched.
St Barts is the only place in the UK where I know any of my buddies there got help.
Oh dear I've been having tests for over 2years now :(
St Barts!!! I told my endo to send me there on the NHS he bloody refuses :( so I'm stuck so he is referring me to a rehumatologist and gynocologist he says my hormones are fine. I don't know what else to do?? Should I contact St Barts and try to tell someone what's happening???
I am in the US so I am not familiar with the UK system but if you have abnormal tests, they should take you at St Barts - the high cortisol tests should get you in with or without the ACTH (since that is done wrong a lot and is a test of location and can be normal) so just because that endo is an endummy for Cushing's ... there is a UK Cushing's society - have you contacted them for assistance?
There is no sense in suffering. Get a pile of tests, pics and all, and head off to another doctor who actually knows the disease.
thank you so so much for the advice :) I will try to get help from the uk cushings society !
the only problem is that im not fat...i have the hump at the back of my neck though and i put on 12 kilos and now ive suddenly lost 8...its all so weird to me...
hhaaha endodummy he sure is a dummy...very rude and negligent too...can you believe he has never even checked my blood pressure pulse or my legs (even though i told him im always full of bruises...black ones..purples ones...red ones..small ones large ones round ones...broken viens etc) didnt even get up from his chair not once :(
Weight gain is a symptom - not everyone has every symptom and that is one of them. I have met think Cushies - I myself did not gain until many years into my disease - as in I knew I had my tumor in 1992 but my weight gain started closer to 1998 or later - and I was not treated until 2004. If you gain and lose, you may have the dreaded cyclical form which is tons harder to diagnose and treat. I had that one.
Bruising is typical - that is thinning skin and bleeding issues brought on by the cortisol.
You have a high serum - I don't know the dex cut off in the UK (it is 3.8 in the US) so you will have to research that one. CRP and other things up - cortisol messes with the inflammatory markers. But overall - you are lacking testing - no ACTH, IGF-1, DHEA-s, FSH, LH, and no thyroid antibodies? Is he going to treat the thyroid? I don't know about renin and aldosterone without ranges. Can you get your regular doc to order tests?
He does show there is an issue - and you have the symptoms - but dang, he is blind to it.
My thyroid antibodies are really high in the 3000s I have high testosterone too
Would cushings also give u a high GFR???
My endo won't do any more cortisol testing :( intact he doesn't want to see me anymore. He says I need to see a gynocologist and rehumatologist He is the only endo here so I'm stuck :(
I had the cyclical type. I know others that took longer... it is not a well understood disease (a ha!) and the docs don't know how to diagnose it so it leads to long diagnosis time.
So you have Hashi's as well - high testosterone is actually unusual so you must have PCOS as well as the Cushing's. I did as well so my testosterone was high too. Many of us do - docs don't do well with a complex patient who has more than one disease they are going to try to treat the PCOS or thyroid and make that make all the symptoms go away - it will not work.
I suggest you find another smarter doctor.
Kidneys - GFR - I know one of my buds had an issue but it is not a common one that I know of...
My one friend actually had kidney issues - but they were not related. It is possible (some docs don't grasp this concept) of having several health issues at once... it is not fun, but it can happen. In the end, years later, it was found to be due to lupus.
Uh - high T, cysts etc - that is PCOS... but again that does not preclude other disorders. I had PCOS and Cushing's myself.
I am just not familiar enough with the UK system - I already told you the only hospital where the people I know there got help... did you contact anyone in the UK Cushing's society?
oh God i hope i dont end up with another autoimmune issue id hate that :(
i have emailed De Friedman in Los angeles......ive asked him to check some blood test results to see if he can tell me if he can help me for sure....since i have to take out a loan and travel so far...i dont know if he will answer though :(
ive also email a consultant endocrinologist at st barts hospital NHS and told her of my situation within my hospital. that my Endo will not send me for a second opinion and sent my blood results too....again i dont know if it will help.
ive not been able to find a uk cushings society? :(
my mum thinks im crazy because i said id travel to see a dr in the uk if i had to :(
There is also a group in the UK called the Pituitary Foundation. They will be able to guide you to proper doctors that can help, I think. They know the ins and outs of the health care system in UK. Call them!
J.K. Powrie and
From the Department of Endocrinology, Guy's and St Thomas’ NHS Foundation Trust London, UK
Address correspondence to L. Leelarathna, Department of Endocrinology, Guy's Hospital, London SE1 9RT, UK. email: lalantha.***@****
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