Cushing’s symptoms but varied cortisol levels?

Hormones
1

Hi, I just signed up here and I could really use some insight into a confusing soup of symptoms and test results which I’ve been finding myself completely alone with.

About 4 months ago I was visiting family at the weekend when someone spotted an unsightly hump on the back of my neck between my shoulders. Weirded out, I took myself to the GP the following week assuming my rubbish posture had caught up with me and I might need some physio. Instead, she paired this lump with the sudden weight gain and exhaustion I’d been complaining to her about for the last year, and suggested a cortisol issue.

At this point I’d had an overnight sleep test and countless thyroid and other blood tests over the last year, which all came back normal, so I was excited to have a new route to explore. My symptoms had begun with increasingly bad daytime sleepiness which was interfering with my full-time office job, making me fall asleep at my desk and in meetings, and over the year I had packed on 40lb despite having a very normal diet and going to the gym once or twice a week. I was also experiencing a lot of heart palpitations, night sweats, headaches, and shoulder, back and leg pain. I thought this was just me being generally small and weedy, but it had started to seem out of proportion for my age (27) as I was finding it genuinely hard to climb stairs at a decent pace or lift slightly heavier objects.

Through my GP surgery I had a 1mg dexamethasone suppression blood test, which came back with a cortisol level twice what it should have been and slightly elevated prolactin too.

I was referred to an endocrinologist and about six weeks after the initial 1mg dexa test, I had an MRI, CT scan, 24hr urine test and 2mg dexamethasone suppression test under their supervision. The MRI immediately came back showing a pituitary adenoma of about 3mm, and I thought the answer was obvious- but then last week my bloods, urine and bone density all cane back within normal ranges, and the hospital has essentially told me I do not have an endocrine issue and to go back to the drawing board with my GP. I was so frustrated I cried in front of the consultant and her observing student, and she responded by… suggesting I look into psychiatric care. At that point I left, humiliated, because I felt like any response would just be used to blackball me further as a hypochondriac.

I don’t know what to do next. Everyone, even well-meaning friends and family, seems to think I am basically just fat and physically and mentally weak and need to do meditation, CBT and strict calorie-counting. I want to ask for a second opinion, or to have the blood and urine tests re-run several times to see if there’s some sort of out-of-step cortisol cycle happening to me, but people are telling me not to do this or I’ll just be pigeonholed even more as ‘difficult’. I seem to be being thrown on the scrapheap as just another mad, bad fatty who won’t help herself by shutting up and getting on the treadmill. Does this story ring any bells with anyone? Has anyone ever found the magic words to make a consultant curious enough to re-run the cortisol tests? Has anyone ever gone the same route and found a definable problem that wasn’t Cushing’s but was still treatable? I’m just desperate for advice that isn’t just ‘be a stronger person’, and would be so grateful for anything anyone who’s experienced this first-hand can suggest.

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it very sad they have made you feel this way. but dont give up on your own health. i have cyclic cushings syndrome. google it an see is that what maybe is going on with you. seek another consultant or go private. your allowed to do both, and i wouldnt worry if they label you “difficult”, id soon be telling them its your life an your health and if they were in your position they would do it too. def dont give up!

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your dr is a twat and youll find as time goes on family and thing s just dont help they just make it worse i have just been diagnosed with insulin resistance after 10 years im waiting for a salivary cortisol to come back because i know it is and finally found a dr who would believe it may be cushings after my high tests were bordeline , then the rest normal so im trying to catch whats high cause i seem to be cyclical . If your experience things like anxiety for no reason and feeling hyper along with rapid and changable moods cyclical cushings may be your answer i cant believe there ignoring your high result .Where do u live i had to travel and pay to get a dr to even test me your absoulutely wasting yor time with local docs trust me they dont have a clue even specialists struggle IF U NEED ADVICE IN WHO TO GO TO PM ME X

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Hi and welcome. Your story sounds so familiar. It all depends on one whether your GP has ever heard of Cushing’s and two whether or not your Endocrinologist is playing fair. We have all been there and have waited years to be diagnosed. Your symptoms sound exactly like mine. I also had purple stretch marks but did not have the moon face. Mine was only diagnosed after I watched Doc Martin and he said that 2 other symptoms which women don’t like t o say is excessive sweating and excessive hairiness. It was only then having had test for everything else I was tested and after Petrosal Sinus Sampling the tumour as located. I hope some of the others will reply as well. You are quite entitled to ask for a 2nd opinion. Where are you located. I have to go out now but will be in touch again this evening. Keep your chin up, I cant see how anyone can doubt you have Cushings especially as a tumour was found on the Pituitary Gland. I started this forum bcause like you there were no answers and because we are so rare most GP s will never see a Cushings patient. Your GP sounds as if she/he knows a bit. We will always tell you the truth on here even if it is not pleasant.

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Hi all, thanks for your inputs. I’m located in south London so I would hope I have a decent amount of options on my doorstep, but I’m willing to travel if needs be. I would struggle with paying for private treatment but again, if that’s the only place they’re willing to re-test me…

I have the excess sweating, round red face, and some stretch marks, but was told by the consultant on physical examination that they weren’t severe enough to call Cushing’s. How a stretch mark not being purple enough is a key part of diagnosing or denying the disease, but a visible pituitary tumor isn’t, I’ve no idea!!!

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you shouldnt have to go private! living where you are, you should def have options. i live in ireland so im no help to tell you where an who in london. those purple stretch marks were one of the last things for me to get. i had it for years undiagnoised but then it all just rared up an hit me with a bang. one test they did on me to see how bad i was deteriorating was to squat an get back up. i couldnt towards the end. but they were certain i had it due to alllll the tests i had done an the symptoms. you will get there, just dont give up!

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Hello Shutterspeed…I want to kick your endo you went to in the behind…as the arrogance and lack of true knowledge is a common denominator in most of the Endo’s I have met, which is plenty.
I am the first person to be diagnosed with “cyclic” Cushing’s in the U.S. in 1989. After 9 years of being humiliated and told “it’s all in your head” or the worst critical comment " stop lying and quit overeating."
I had 23 doctors when they finally caught it, but only because a radiologist could see the stalk was bent on the pituitary gland in a MRI done with dye. Understand that the tumor can be the size of the top of a straight pin and cause all these changes in your body.
A list of symptoms: ( and EVERY Cushing’s patient is different) buffalo hump, “moonie” round face, excessive weight gain, trunkal obesity, excessive sweating, mood swings, emotional, excess hair growth, the purple stretch marks, sleeping sickness ( so exhausted could sleep 3 full days, shakes, high pulse rate, extreme fatigue, extreme facial acne, low concentration, crying jags, hyper maniac, unreasonable anger outbursts, personality changes, irritable, stuffy snotty nose, grey skin pallor, poor coordination, glazed eyes. You could also have other symptoms. You living in London, in another country, I can only hope you can find a more informed Endo.
My experience of course is horrendous as it took me 9 years to get the diagnosis, by the time they finally operated I was close to dying. To understand excessive weight gain, I went from 110 lbs to 276 lbs in 6 months and was eating baby food and throwing it up, my face was so round it looked like a pumpkin with acne all over my face at the age of 38. I had a extreme personality change I called them Jekell and Hyde, Jekell was manic and talked non stop, could do multiple tasks at once and never slept, Hyde was the defeatist, non social, moody, irritable, slept a lot, extreme fatigue and depression. They did a special testing on me, put me in the ICU and ran tests, taking excess blood out of me every few minutes. The drs watched me change right before their eyes, my personality, my appetite, my mood swings. They learned a whole lot. The problem is most of the Endocrinologists are the most arrogant and righteous and don’t listen, and don’t seem to care enough, they like playing God. I’m telling you the 3mm tumor can cause all the symptoms you are experiencing and your Endo has dropped the ball. Research to see which Dr in England is a specialist in Cushing’s disease with a special interest in Cyclic Cushings. Now your family may react even worse as every family member will respond differently and mine were awful to me throughout the trying to get diagnosed and even after the surgery. Forgive them they don’t know how to grasp this complex and rare disease and some of mine told me I was nuts and nothing wrong with me, until they saw my 276 lb body and I was close to dying. But even then they were mean to me. Have the new dr you find to do a ACTH testing, a 48 hour urine test, Blood tests and the dexamethasone testing again, but understand they just wont do more testing until a few months go by. My blood and urine never matched. Please understand you do need to pursue a diagnosis. This is why I have been dealing with Cushing’s since 1981, I had pituitary surgery in April of 1989, in 2015 I was diagnosed again with another tumor, a huge one and had pituitary surgery again in May of 2016. The tumor is back and not operable as its wrapped around my inner cranial artery. So this is a illness that you need to be watching closely. I’m praying you can find a endo that is more experienced in Cyclic Cushings. Please personally IM me if you would like to know more.

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if u in london try get referred to barts thats nhs thats your best bet without going private but all the best private ones are also based in london

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This is a lot of encouraging info, thank you very much everyone.

@nails_24- Barts was the other hospital my GP mentioned when she first talked about referring me, so I will definitely go with them if I can get a second opinion.

@cycliccushings- I have everything you describe except for the acne, and apparently my stretch marks (which look huge and purple to me, as I had none until a year or so ago) aren’t big enough to ‘count’. I’m sorry it was such an ordeal for you and I will definitely cite what you’ve told me when I make my case for new tests. I had hoped to ask them for dexa and urine tests once a month til Christmas, and then to have the results compared, but I realise I might not get that schedule.

On the friends and family thing, I was way too harsh in my initial post, they are a million miles from mean- they do agree I should keep trying with the possibility of cyclical in mind, they even offered to pay so I can have a faster treatment and to look after me for weeks post-treatment if I can just get a solid diagnosis out of the NHS. They just also want me to push myself more to be physically active again and expend scarce energy on careful meal prep. When I think about it I realise they just want me to cover all my bases and alleviate what I can by myself, but I can’t help feeling defensive and angry and paranoid as my first response because that seems like such a big ask in my current state. Maybe I need to explain to them my reactions are no longer the most measured (I usually try to be pretty introspective and considerate but I find myself snapping at innocent people more and more lately), and try not to get into circular conversations about it. That’s how unpredictable my mood and aggression is right now- the conversation that prompted this was not even four hours ago, and I’ve undergone a complete 180 on what I think of what was said to me. I’ve also snapped at my housemate a lot lately who is my best pal of 15 years. I hate what this thing is doing to me.

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Shutterspeed I forgot to mention on how to present yourself to the new endo and your workup again…I’m praying you have had pictures taken of what you look like now and before the symptoms started. I know I was born with Cushing’s as I would ask my mom at age 3 to go to bed during the day. My feet quit growing when I was 11 years old I only weighed 89 lbs when i graduated high school. I only weighed 105 lbs when I had my first baby. The new dr wont know anything about you. A picture is worth a thousand words. Take pictures of you now and show the comparison of what you looked like b4 you were sick and now showing the weight gain and facial changes etc. I wish I had thought of that but I didnt until close to the time I got diagnosed. I’ve tried adding a picture here to show you the extreme difference in myself but it’s not letting me load it here. I will try later today…on my computer..I’m in my cell.

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sounds like it the uncontrollable outbusts and rapid mood changes are a nightmare and no one understands u cant control this no matter how much u explain and for me how bad it makes your face look .If you get to the point and they let u test when u feel high dont test when u feel badtrust me mine didnt show anything when i did this test when you feel maniac or hyper thats more likely to show cortisol
if you not sure get a home glucose meter and if your blood sugar is elavated test then , i really hope u get there and wish i had someone to tell me all this wouldve saved me some hassle good luck