I have all the symptoms of having Cushing's, unexplained weight gain, stretch marks, fatigue, insomnia, buffalo hump, menstrual irregularity, infertility, darkened skin under my arms, weight mostly on stomach, shoulders and back of neck.
All this started 4 years ago, and I have had to push for answers as no one was interested, instead they told me to exercise more and eat less. Eventually I saw a dermatologist about something unrelated to Cushing's and he ordered my GP to carry out tests. I have been tested twice for excess levels of cortisol, and both times I was told they are all in the 'normal levels'. Like some of the other people in the forum, I wasn't advised to keep the container cool (it was a 24 hour collection).
Whatever is wrong with me has robbed me of having a career in the Royal Air Force, as I am now so overweight and tired I cannot cope. But the worst thing now is the anxiety and depression. I was told by one endo that depression has nothing to do with Cushing's. My GP ordered a scan of the lump at the back of my neck, and I was advised it is fatty tissue. People who I have not seen for a long time fail to recognise me. Please can you suggest where I go from here. I have never been offered an MRI.
You are in the UK and it is very difficult to get diagnosed there. Most of my UK buds have the best luck at St. Barts so if you can get someone over there to test you, that would be the best place to get help. I don't know if you managed to get copies of your testing as I hear it is not as easy as it is for us in the US (we can ask for ours) as some docs want 2x or 3x the normal level so it is entirely possible that you had abnormal results, only it was not to the satisfaction of the doctor who was testing who had no skill in this disease.
Yes, you do have to keep the container cool as it degrades and that probably cost you as well. Depression is a symptom so that endo is certainly not up on the symptoms - perhaps he needs to be sent the list of normal symptoms? I mean, geez??? And the hump is fatty tissue - it is an abnormal lump.
I would see if you can get to St Barts. I will PM you some information and see if you can contact some people that have been diagnosed in the UK.
You have been so helpful, St Barts is a long way from us, but I have also checked out specialists here. The last one was a professor, who said he 'suspected' that I don't have Cushing's due to the 'normal tests', but he cannot account for all my symptoms. If I could send you a picture of me before I got ill, you wouldn't believe how much I have changed.
Me and my mom have had to do all the work, chasing up tests, demanding more, it isn't fair.
I think perhaps it't time to change my PCP if they won't do something, and find a doctor who will be willing to give me answers.
Do you have my email address?
It took me 12 years to get diagnosed that I know of, I am sure I was sick long before that... and through that I learned there can be a lot of pitfalls of testing like keeping the jugs cold, getting correct ACTH testing (chilled tubes, spun right away), timing of tests, medications can throw things off like birth control - but your body can have high cortisol binding globulin too so you need a good doc to test that as well as test often and different forms.
A PCP does not typically have the time or skill to deal with a disease like Cushing's - they have not a clue. A good one will just order tests and let you go at it. A bad one will fight you. I used pictures to help some docs but oddly some docs just say you look fat. Nice.
I cannot email everyone sadly - I am sick myself (still - ack!) and I do this board and a couple others - then I am kaput.
Thanks so much for the invitation. Good to hear that others have had PCP and the GODLY physician syndrome problems. I was not glad to hear that you were diagnosed with Cushings. I am praying that you feel better soon. I know you have had this question asked 1000 times. How were you diagnosed. Did anyone do imaging like at CT scan or MRI and if so what did it show? I am requesting a referral from my cardiologist to a neurologist or cardiologist at UCSF Medical Center in San Francisco who specialize in autonomic nervous system disorders. I spoke to the radiologist who read my MRI and he was reassuring that the MRI was mostly normal but was going to amend the report to pay particular attention to the pituitary gland and the sella(bony part of the brain where the pituitary gland.
i think the key to getting diagnosed is getting a comepetent dr. i dont think theres an official test to diagnose cushings or an official guideline that says if you have it....but obviously cortisol is a good indicator as well as clinical symptoms.
the op sounds like she has it, and her dr sounds lie a moron
CT scans are not useful for pituitary but can be useful for adrenal (however they can be normal even if your adrenals are abnormal...)
The pituitary MRI should be done dynamically - with and without contrast and contrast given in the machine.
There is a pituitary center at UCSF - so you should ask to see them. If your MRI was NOT a pituitary MRI, amending the report is... eh... it is the technique, not the report sadly... however a surgeon reading the films may see more than a radiologist.
Lab testing - get lots of it and get copies of all of it...it may take a while to put all the pieces together.
Thanks for the wonderful feedback. Hope you are having a good day. I have requested a referral to UCSF from my cardiologist but he is asking me what kind of MD to refer to. Not a good sign. I have an appointment to see him on the 18th and will attempt to discuss this further with him without offending him. He is a pretty good guy so hopefully he will understand the need for the referral to the pituitary center at UCSF. Hopefully the gate keepers to the pituitary center are not as difficult to get past as are the ones in the neurology and neurosurgical clinics. I will try to get DVD's of both MRI's sent to the clinic. They may see more or at least request a pituitary MRI be done. I have copies of the last cortisyn stim test but not the one done three years ago. I will need to request that those be sent to the cardiologist or get copies and send them my self. I am not going to give up. If my pituitary is not functioning then replacement is necessary for all the hormones that are not being produced for me to live normally to the best that I can. Will keep you posted as my experience may help others seeking answers.
Sorry you had to be sick for so long before diagnosis. But it does give me hope that one day I will find answers to all my health problems. What I cannot understand is why I have developed ALL the clinical signs and symptoms of having Cushing's, and yet they are telling me I do not have it.
The main problems I now suffer from are psychological disturbances. I sometimes see bright flashes of light.The psychiatrist I last saw (who incidentally dropped me out of her patient list without any explanation) thought I may be suffering from epilepsy, and was going to order an MRI then changed her mind! At the moment I am getting no support from her or from the psychiatric nurse who used to come to my house. Both her and the psychiatrist are doing nothing for me, even although I have self harmed and have thoughts of suicide.
There are papers you can find simply by putting cushing's and depression in a search engine that will show any decent (emphasis on decent) doctor that it is a symptom. The symptom varies in people just like most symptoms - I know some where it is a passing thing and others that get diagnosed bi-polar, and others that are put on heavy-duty meds. There are issues too in that the meds interfere with testing, so if the suspicion is high, they need to really figure out what it is rather than toss the easy pills at it (not that anything is easy, but it requires less thinking and work on their part).
Do you have a GP that is fairly smart who will at least run some testing? With some testing under your belt that can be sent off to an endo so travel can be more worth it.
They are saying the only criteria for further testing would be to find excess cortisol in my previous blood and urine tests, or high ACTH levels, but as they are saying these have all been normal, then I don't have high cortisol, therefore I don't have Cushing's. Prior to becoming ill, I looked like a totally different person. Surely people don't just suddenly develop all these symptoms for no reason? I think a lot more visits to the PCP will be needed.
I hope your PCP has his wits about him and does more testing. With rarer things like this, some shy away, others dive in for the knowledge. There are many reasons to test ok - from high cortisol binding globulin, to test timing, to medications to high estrogen (estrogen binds to free cortisol), cycling, to lab error... but a PCP may not know that.
It may take bringing in some papers (look at pubmed, springerlink etc) to find stuff to help - plus they came out with a protocol about three different tests, three different times - with more testing if there is more clinical suspicion for cyclical/episodic cases (they said is extremely rare... hah) so that leaves discretion that can let the doc dump you. I read the criteria and thought I would never get diagnosed sadly...
I feel for you. I wanted to add something. I know that you have not yet had an MRI. But I had the hump, weight gain, stretch marks etc. I never tested high for ACTH of cortisol. But I was sure that I had Cushing's. I did have a pituitary adenoma and my hormones were a mess. Once the adenoma was removed and my hormones were corrected, I was able to lase weight. It was not easy but it was impossible before that. So really push for that MRI too! Any ptiutiary adenoma can wreak havoc on the hormones.
Take a look at my profile and pics. The pic on the right is when I was my heaviest, now I am 75# lighter than that.
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