Hi and good evening new here So im EvE7070 and oh my were do i start.
I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.
But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong
i even got a allergies to peanuts which I had never had a problem with before crazy right
So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland
So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest
I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again
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Aug 24, 2019 @ 17:50:26
A comment from Maria B
Hi EvE7070, sorry to hear your going through the possibility of a recurrence of/or new tumor 😢 Unfortunately it is possible to have a recurrence/or new tumor.
I had my first tumor in 2001, 2 failed transphenoidal surgeries, then gamma knife radiosurgery. Cortisol levels remained slightly elevated leading them to believe there was residual tumor.
In 2009, cortisol was significantly elevated & MRI in March 2010 led to diagnosis of recurrence & I returned to Prague (I’m from Ireland & we have no gamma knife). But the MRI by the stereotactic team in Prague showed a new tumor on the opposite side of the pituitary, which is extremely rare, but happens.
It’s more usual to have a recurrence from residual tumor, which can happen even 20 years after treatment, which is why we need regular follow up, even if in remission 😳
Hope they diagnose you soon, it’s horrible not knowing 💕🙏🏻