May-Aug 2013 Age 17-18
I started noticing that i was losing weight. My arms and legs looked like toothpicks and i had bruises everywhere. i was fairly active i would run and lift weights everyday minus some weekends. Till i couldnt no more. I became very very weak, i was tired and fatigued all the time no matter how much sleep i got. I would wake up 5-8 times a night to pee, i was constantly hungry. Omgsh never not hungry i could eat and eat and eat but i still wasnt big. I was “too skinny”. My hair started to fall out in clumps , i would get these attacks where i would have insane blurry vision, i would become super pale and my stomach would blow up like a balloon. i would have terrible back and stomach pains , ringing in my ears.I would started shaking,my speech would become slurred and all over the place. I would not be able to walk straight or think clearly. I was very scared and i hated everytime these would happen. They usually hit the more active i was. so if i would run or even jog/ walk for more than 15 min it would hit. i became scared of doing anything
More symptoms: Constipation
drooling
Muscles felt like they were eating them selves
terrible headaches
no period
thirsty!!!!!
Constant! urination
muscle twitches
muscle spasms and jerks
waking up every hour
terrible acid reflux! it would wake me up
SEPT 2013
weight 115-120lbs
I started working for my father at his shop in sept 2013.I did not last very long. I got to the point where i was dying. I was sick every week, my periods had stopped , i would spot every day. I couldnt think AT ALL i felt so stupid. Like i was in a haze , i started getting really bad hypoglycemea ,which made things even worse. Despite eating so much food it would not go away.
I should mention my moods, I have always been more aggressive and loud happy go getter, i noticed that i was extremely irritable.. and jumpy all the time. I would cry for no reason and my anxiety was getting worse and my anger was like never before. One day after days and days of struggling to work, i went to the grocery store with my father , and i was not able to push the shopping cart, i almost fainted and had to have him take me to the car. Mind u my whole family knows me as “the strong one” . I was benching 220 lbs at 14, now i couldnt push a shopping cart. He couldnt believe it and i stopped working a week later. I had too many things going on i knew i had to get them sorted before i could go back to work and then go to collage.
I went to the doc who sent me to an Endocrinologist. She tested me,
LOW GH
LOW FSH
LOW THYROID
HIGH URINE OUTPUT
LOW LH
At this point i just wanted to get fixed. She told me i had to gain weight in order for my sex hormones to bump up and maybe id feeel a bit better. So i docs orders and started to eat, when ever i was hungry.. which was alot.
i came back to see her a month later, and i had gained 35 lbs!My skin was not as dry, still bruising,and terrible headaches but i had way more energy. I thought i was getting better. Little did i know my tests did not show that. I had cortisol levels 7x the normal limit, my urine out put was very high. I did a 24 hour urine test an filled 3 jugs. She suggested maybe diabetes insipidus and also.. a brain tumor. I was kinda freaked when i heard the word tumor but i just wanted to feel normal . As long as i could get help i didnt care.
2014
i did another dex which came back positive for cushings, i had to do one more and my tests suddenly dropped again. After a few more dexa tests coming back neg she ended up dismissing me and told me that i do not have cushings.
Note: I Did have a neg Pituitary mri
and adrenal
I was heartbroken . i thought that this was my way out to finally feel normal or at least ok.
She sent me to another endo who refused to see me. So i started seeing a naturopath, i spent 800$ the first day of seeing her and all those natural supps, dieting recommendations she gave me did not do a thing. TMI I also went to get a colonic and colonoscopy around this time because i just could not go . And i was pooping out blood.They said everything was okay and that it may have been hemmeroids.
2015
Specialists:
ENDO
E.N.T
Nephrologist
My family doctor suggested maybe i have fibro.. then celiac.. then hashimotos.. then maybe MS? She finally sent me to ANOTHER Endo after those tests were NEG , who said he could not help me the first day of meeting him. During this time i was devloping social anxiety .It was very hard for me to talk to people which isnt like me at all. Seeing as i was a social butterfly.My face would go beat red after any little stress i had. i hated it! i had been seeing and E.N.T because i was coughing out blood. They told me i had cysts in my nasal passages and it was nothing to worry about. And that i also have damage in my esophagus due to the acid . She prescribed me Tecta.I even saw a nephrologist because i was constantly thirsty and constantly urinating. He was the worst doc i have ever seen. He told me i knew too much and i walked out because he could not help me.My energy levels were erratic. Some days i would have so much energy and clean clean clean want to run and do everythiing! , other days i would get out of bed and crash very quickly.This was becoming a burden.
2016 Aged :21
Still trying to get help
moved
weight: 165 (gained)
Specialists: Sleeping
Neuro
I became very frustrated and sad of always being let down and disapointed by all these doctors. I kind of gave up for a bit.i saw two last specialists which were sleeping specialist and a neurologist . which did nothing but prescribe me sleeping pills for my insomnia.The neuro did tell me that the symptoms i am having were not caused by cushings, so he started me on topiramate. An antiepileptic drug.
I finally contacted a pituitary specialist downtown toronto. And thank the heavens ! i got an answer! CYCLICAL cushings. He told me im 99% to have cushings i just need one more biochemical confirmation. He have me a T3 MRI of my pituitary which show an enlargment right side pituitary. “One more test and we can go in there and operate” i was ecstatic! so happy to have finally found someone who can help me.
i tested and tested but my results came back Neg, or just a little bit higher. a few months later He told me that he will keep testing me but he does not think it is cushings anymore. Another heartbreak đ
2017
moved again
aged 21
Specialists:ENDO
I now have another dexa test and a 24 hour urine.I need this last one and they will operate . during this i am trying to move out to ANY cheap apartment because my father does not help me at all. He makes me much worse and i have no where to go other than his place. He is a big burden and does not understand what im going through at all, i have had two hospital visits this year due to overdose. This is something that i thought i would never do in my entire life, but it happened. I can not handle living like this especially when i have someone putting me down and denying my disease everyday. I am seeing a therapist now and a psychiatrist but the pills they give me do not help when i cannot live my life or work through any of my problems. I have gone to a shelter but this disease does not make it easy for me to live there.I only have my partner helping me right now . ANY donations would be greatly appreciated. !!!!!!!
this is my go fund me to help me get out of here in the mean time.
Thank you so much for reading my story and anyone,, feel free to email me or ask me questions.
i am i gona keep this updated when i go to docs or get any new info
Please email Danielle for the URL to her GoFundMe Page
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Jul 23, 2017 @ 22:01:44
I am in a similar predicament. In January 2017 I started having random episodes of Severe sweating, I thought it was because I was overweight at nearly nearly 250 pounds with a height of 5’8. I went to primary care physician he recommended I see a Hematologist who saw some abnormalties in my blood. He recommended I see an Endocrinologist. I Googled to find a top one in my city. He took a lot of blood samples and urine test, ACTH level was abnormal is what he discovered, unlike others I went directly to an MRI, first of adrenal gland then MRI with and without contrast. Results showed a micro adenoma, for non medical people reading it’s basically a small tumor on the pituitary gland possibly causing excess cortisol production. He would not say it was definitely Cushing’s disease or even Cushing’s Syndrome. He referred me to a Pituitary specialist. First tests showed high cortisol.
Specialist ran more of the tests (now it’s July 2017) and cortisol levels are relatively normal and would not warrant surgery. Here is my issue:. I still have several of the symptoms, which include:
Mood Swings, in particular I have grown noticably more irritable in last 6 months.
Frequent urination (up to 4 times a night) last 6 months.
Carbohydrate cravings in last 6 months.
For the last 3 years I have been diagnosed with high blood pressure, originally thought caused by weight and salt intake.
Weight gain, in last 4-5 years I gained about 50 pounds, with no real lifestyle or dietary changes.
Sleep issues, sleep Apnea caused by weight, but also Insomnia, for about 6 years now.
I do have cognitive issues like poor memory and diagnosed with depression for over 20 years. Thought to be cause of Insomnia as well.
Kidney Stones 3 times, caused by excess mineral deposits of potassium.
In addition to weight gain, which I have recently been able to shed by extreme calorie reduction over past 5 months (carb cravings do make it even more challenging), I am pot-bellied with a double chin. No excess weight anywhere on my body. I am a bit out of proportion, been like this since childhood.
I also bruise easily, as a kid just thought I had sensitive skin.
I don’t think I am as strong as I could be, but i don’t have medical support for muscle loss/deterioration.
I am addressing all the “separate” issues independentally with several medications and several different doctors. Why not fix the source of the issue?
Right now next steps are to monitor cortisol levels with 2 late night saliva tests and 1 urine test. Unfortunately timing to take these tests are at my discretion, and have to be submitted before my follow up in October in 2017 with pituitary specialist.
If results come back elevated cortisol, then I will undergo 1 more test, IPSS, which requires a hospital intake, anesthesia and a tube inserted from my groin I believe up to my brain. This test has to be timed though, so it has to be taken during an elevated cortisol state. How am I supposed to schedule a hospital procedure if my cortisol is fluctuating? And what if the tests before this diagnostic procedure are high, but day of IPSS cortisol is lower? Then these test results will be inaccurate or best case they don’t go through with test after I have already done a hospital intake which will have affected other people (my work and family).
If IPSS shows consistent info, then Transphenoidal surgery will be an option. At the time of this writing, from what I have read (not medically confirmed though) 70-75% cure rate, versus upwards of 90%+ cure rate non-cyclical Cushing’s.
Very frustrating for me, and as you read time consuming, not to mention the hours spent dwelling on symptoms.
This is my first public internet post. I know it’s 2017 and in my 30’s, so I thought I would share my experiences with anyone else going through similar issues for now or in future (some of these posts are old and medical advances have been made).
We are a select few (regular Cushing’s about 1 in either 10 or 15 million are diagnosed a year, and for cyclical Cushing’s an even smaller percentage). I have some faith in modern medicine, but let’s be realistic this area has yet to be well researched and makes it very difficult to treat in a timely manner.
Just have to wait and see right now.