March 12, 2019 at 12:16 pm #6571TnaParticipant
I am concerned that I have Cushing’s. I had a rapid weight gain about 2.5 years ago and steady weight gain ever since. I am unable to lose any weight at all and I have tried everything. Every year I weigh more than the year before. It’s been a total of 75-80 lbs with no good explanation as to why. I am much heavier and am out of breath quicker, I have days where I feel fatigued, tired, and restless. More than likely due to lack of sleep. I cannot fit any old clothes and went up about 4-5 sizes. My family and friends tell me I look different than I did 2.5 years ago and how did I gain all this weight. I have no idea, possibly a medical issue. I had never heard of Cushing’s syndrome, then I begin doing research into all of my symptoms and everything I had been going through and Cushing’s popped up as one of the possible conditions. I eat fairly well and exercise but no progress occurs ever. I have tried many diets and had times where I barely ate only 80/20 veggie/fruit smoothies and I have never dropped 1 pound in almost 3 years. My body carries a lot of weight in the midsection, I have a huge load of stored fat on my stomach area. I have a forming buffalo hump in the back of my neck. My face is puffy and bloated at times, I guess this is a moon face. I have some constipation issues. My blood pressure seems to go up and down at times, during an office visit it can read as normal, the next visit it may spike out of range. My feet swell up sometimes. I have had major sleep problems, not being able to fall asleep, waking up several times per night, waking up too early you name it! I’ve tried everything you can think of toward getting a good night’s rest. I’ve taken many types of sleep aids over the counter and prescribed. I have seen about 5 Endocrinologists, a Nutritionist, and a Psychiatrist at this point and I have gotten no where. I tried to look into and treat depression, but that changed nothing, I still felt the same way. I didn’t think I was actually depressed, it was a lot of trial and error of trying to figure out the problem. I have gotten lots of testing on thyroid, creatinine, cortisol, and lots of other hormones levels etc. The doctors have advised that my labs are not out of range to whereas they would order any imaging in search for pituitary tumor or adrenal tumor. I have a Goiter thyroid, but no toxic nodules. I found this out through an ultrasound of my thyroid. I have mentioned Cushing’s to several doctor’s and they always reply with that I would need to show a lot more symptoms that are on the list. I reply stating that everyone is different and not everyone will experience the same symptoms in the same way. I don’t feel you can eliminate a condition just because a person isn’t experiencing enough symptoms. Also people are in different stages of Cushing’s, some just started experiencing problems, some it may have been 10+ years. I have family history of cancer on each side of my family, so tumor growth could be highly possible. When I have gotten cortisol tested it’s always been urine or blood. I just recently did a saliva cortisol and I’m awaiting the results with another Endocrinologist. Although my cortisol tests in the past were not out of range, my number was always on the higher end of the range. I felt like my number could of been a lot lower and then maybe I would start seeing some changes. I started to read into Cyclical Cushing’s syndrome, which is when your cortisol levels go up and down. Things may appear normal which makes it difficult to detect and diagnose Cushing’s syndrome. So I’m on this journey of determining what the issue is to gain my health back, and get back to normal. I have been taking a supplement for adrenal/cortisol support for about 1-2 months lately and suddenly I can sleep naturally and better at night without any sleep aid. This is the first time I have felt any relief, the first time anything has ever worked for me. It’s unbelievable. I took another urine cortisol test shortly after I started this supplement and my numbers were actually lower than they had ever been on any other test. Next up I plan on trying to go on another diet and increase exercising and see if any pounds will come off this time around.March 12, 2019 at 12:46 pm #6578Leslie EdwinKeymaster
One of the most frustrating things about hypercortisolism / Cushing’s is the non-specific nature of the symptoms. If a body producing too much cortisol did one unique thing that no other disease or illness did, it would be a quick diagnosis. Even a set of the most common Cushing’s symptoms still looks like many things – PCOS, sleep apnea, obesity, etc. You sound like you’ve done your research, so you know about this challenge. It adds another layer of complexity when you take into consideration the fact that a person can have intermittent hypercortisolism that can produce some cushingoid symptoms while not having a tumor source.
Most doctors like to see several high results across more than one type of cortisol test along with clinical symptoms and patient-reported information before they will move on to scanning for a suspected Cushing’s tumor. Results on the specific tests will guide them to either the pituitary or the adrenals as a source. Without a strong suspicion, most doctors will schedule additional testing a little down the road, anywhere from 3-6 months. Having access to and getting expert care from a large center with high numbers of patients diagnosed and treated would be ideal but there are not that many of those types of places throughout the US and certainly the world. Are you familiar with the NIH ongoing trial that can provide testing and treatment at no charge if you fit the protocol?April 22, 2020 at 2:55 pm #6753TnaParticipant
If you’re still available, would you please give me.more information on the NIH trial.April 22, 2020 at 2:56 pm #7017Leslie EdwinKeymaster
**We apologize for the extremely tardy upload of your post. Please see Forum Slow Down topic for more information.**
Yes. You can contact Dr. Margaret Keil at the NIH for more information – [email protected]
The ongoing program is detailed a bit here: https://clinicaltrials.gov/ct2/show/NCT00001595?term=nih&cond=cushing%27s&draw=2&rank=8
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