Siksadwrld

489d

How to get a diagnosis and to get your doctor to believe you.

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Top reply
    • Bibinha

      267d

      @Mertle 💕thank you so much for sharing, I am going through a hard time trying to prove my symptoms to the consultation, I have a large cyst 4cm in the pituitary and they still not believe my symptoms is related, I have all symptoms matching for cushions disease. I performed today the suppression test I hope it shows. I will keep trying!

    • trinia

      479d

      I have just begun this process as they found two adrenal masses on my regularly scheduled mri for ms. Since its been a lot of blood work and 24 hour urine. I see a surgeon in a week

    • Mertle

      402d

      I feel like I got lucky because my primary said sure we can do some blood work when I asked her during my annual exam if could have Chushing's. When my ATCH came back high she sent me to an Endocrinologist who said okay let's do some additional blood work tests. When some of those came back high she said let's do a 24hour urine collection. That came back normal, but because she was awesome too she said let's do another and that came back high (Chushing's can be cyclical). Then she said let's do some saliva tests, those came back high so she said let's do an MRI of your pituitary to see if there's a lesion on it. That came back "normal", but she went ahead and sent it to a neurosurgeon who specializes in pituitary surgeries and he looked at it and said that while it was "normal" he noticed that the pituitary stem was slightly pushed over which could indicate that something was pushing against it and since I had a lot of indicators we should continue to look into it. So I started seeing an Endocrinologist he works directly with. Another round of blood work, 4 more urine collections, and 4 more saliva tests she was finally convinced that we had enough evidence to do a bilateral venous sampling which is where they run catheters up your legs into your pituitary to find out if the high levels of cortisol that cause Cushing's are indeed coming from your pituitary or if we needed to look for other places it might be coming from since high levels of cortisol can be caused by lots of things. When those levels came back high we did another MRI on another machine that was fancier and better quality and sure enough we found a adenoma this time. When that happened they recommended pituitary surgery. I had the surgery a month ago and I'm starting the Prednisone taper. It could be months or even years for my Chushing's symptoms to get better, but I'm hopeful. I tell you all this because Chushing's is super hard to diagnose. Most doctors probably haven't heard of it because it's not very common. I recommend advocating for yourself and trying different doctors until you find one that will run some tests. But know that even then it's going to be a process and probably a long one.

      • Bibinha

        267d

        @Mertle 💕thank you so much for sharing, I am going through a hard time trying to prove my symptoms to the consultation, I have a large cyst 4cm in the pituitary and they still not believe my symptoms is related, I have all symptoms matching for cushions disease. I performed today the suppression test I hope it shows. I will keep trying!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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