I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.
Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.
My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.
My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.
With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.
I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.
I will try to keep my introduction short. I am a 43 year old wife, mother, and certified freak of nature. I was diagnosed with steroid induced Chushings in October of 2015.
Since I was a child I have had random medical issues but over the Over the last 20 years I have become a connoisseur of the medical arts. Funny because the I worked in the medical field for 15 out of the 20 years. I seem to collect diagnoses like a girl scout collects badges.
At 17 years old I collected my first big badge after months of being sick, Chronic EBV. In my 20’s I received the badges for Hashimoto’s Thyroidism, Fibromyalgia, and Adenomyosis.
As I moved into my thirty’s my badges were getting bigger and better; they included Sjogren’s syndrome, Raynaud phenomenon, Hemiplegic migraine, Meniere’s disease. It seemed every time I needed to go to the doctors they wanted to test me for something new. All I wanted was relief because my symptoms were getting more aggressive. They have caused me to several surgeries’ not limited to Hysterectomy (by 28years old), Splenectomy, Smart plugs in my lower eye lids, EGD’s and Colonoscopies.
My hemiplegic migraines have caused multiple visits to the ER and the hospital’s Neuro floor. With these Migraines I have TIA’s so I have trouble walking or talking for days after. As the years have gone by my illness has gotten worse and it all came to a head in June 11th 2015.
I felt awful and I had for several months. My new doctor was very confused because my blood work kept coming back normal for the most part, but I kept having random fevers (up to 105 degrees Fahrenheit) joint swelling and body aches/pains.
On June 11th my family couldn’t take it, they had watched me be in pain for too long, so they took me to the doctor in the morning. When the doctor saw my whole family there at my appointment in tears, he decided to do more blood work. After the appointment he sent me home and said I should hear from him in the next few days with the results. So, we left feeling defeated and like their would never be any help. About two hours after I got home the doctor called and said to get to the hospital that something was wrong but he was unsure what it was. My blood work showed my inflammation markers at 174 and my WBC 28,000. In addition to that my kidneys and liver were fighting to staying the game. This was the start of the current medication roller-coaster, and prednisone was the main med in this cart I’m riding in.
It took three months to get the inflammation and WBC down but I took 1 month at 80mg then 3 months of 60mg of steroids. My taper is going very slow and painful. I’m currently down to 4mg and it will take till October to ween all the way off. But because of the steroids I gained 70lbs in four months. This brought my 5 foot frame to 211lbs. I have all the best signs of Cushings and for the most part I’m dealing ok. Until I can’t bend over to put on my shoes or I have to use my vpap machine to breath at night.
I guess I should tell you what my current badges are narrowed down to. I have a rare auto immune auto inflammatory disease called Hypergammaglobulinemia with Familial Mediterranean fever. To have have name gives me a direction. I would rather I do this then one of my children. I just want the information for my family so they can have early diagnoses and live a long life without pain.
I am the mother of a 19 girl who is currently being evaluated for Cushing’s Syndrome/Disease. My daughter is in her first year of college and over the past eighteen months, she has gained close to 50 pounds. I have watched her struggle and we have even attended two military-style bootcamps for weight loss.
Despite eating healthy, during that five weeks, she gained 2 pounds. Her facial features are so distorted from her moonface appearance that she does not even look like herself. She has a Buffalo Hump and purple stretch marks on her rotund abdomen. She has almost no energy and when not in class, she is sleeping in her dorm. She has a brown stripe of skin in the crease of her neck which prompted her roommate to ask her if she had worn a necklace with copper in it. Her vision is poor and her periods are now very irregular. She has excessive thirst and urination.
About a year ago, she had her wisdom teeth extracted and ended up with a life-threatening infection which included a second surgery emergency surgery and she was placed on a ventilator in ICU for three days, due to the possibility of the infection (swelling) occluding her trachea. The doctors were so perplex how a healthy girl could have such a poor outcome from this surgery.
I looked up some of these symptoms and it seemed rather clear what she likely had. I took her to an internist and expressed my concern about Cushing’s when she was home for Christmas break. The physician ordered blood tests, including a CBC and metabolic panel, thyroid panel, and prolactin. She also ordered a 24 hour urine for Cortisol. Her CBC was normal as was the prolactin and thyroid. Her liver enzymes were elevated about three times normal. She then followed up with a Hepatits panel and an abdominal ultrasound, both of which were normal. The 24 hour urine Cortisol was elevated and we are now waiting on a referral to an endocrinologist.
My daughter’s university is about 350 miles from our home, therefore I requested the endocrinologist be in her college town. I plan on going there for her appointments and my husband and I have discussed moving there if necessary. She has a very kind roommate who is dependable and helpful. I still do not like her being so far away, knowing that she likely has a very serious condition. My daughter’s spirits remain high and I think she is looking forward to beginning treatment, whatever it may be, and feeling better. I know that the weight and the fatigue are the most troublesome for her. I appreciate this site which has allowed me to express my concerns to so many who have been there. God bless you all!
Hello, everyone. Below is information from my introduction at Cushings-Help.
“So, about me…I’ve had various non-specific symptoms since I was a child and various specific diagnoses as an adult … hypothyroid, fibromyalgia, adult ADD (misdiagnosed and treated as bipolar from 2005-2008), chronic atrophic gastritis and chronic duodenitis (diagnosed via biopsy), colon polyps, non-celiac gluten sensitivity, sinus polyps, insomnia alternating with hypersomnia (sometimes I sleep up to 15 hours a day), plus an REM sleep disorder (REM sleep latency 287 min/378.5 total sleep time, REM sleep 37.5 min with 12 upper airway resistance episodes during that time) … and the list goes on. I have multiple vitamin deficiencies too (C, D, zinc and iron) and other abnormal blood levels (low arginine and dopamine, and high folic acid, glutamine, glycine, norepinephrine and ornithine). The levels that made some people suspect Cushing’s (vs. PCOS) were my DHEA and Testosterone. My highest DHEA was 1342, lowest Free T is 0.2.
From a CT scan of my abdomen in August 2011, I know there’s a “probably benign” lesion on my liver, a cyst on my kidney (plus medullary sponge kidney), a 10 mm cyst on my ovary and an umbilical hernia. My PCP considers all of this normal. Also, I’ve had four fractures as an adult (two in 2008 alone, one that required surgery) partly because of poor balance and coordination (frequent trips and falls, dropping things, etc.). I was through an EEG and 24-hour EKG because I fainted and collapsed on the sidewalk outside of my kids’ school at the end of December 2011. Those tests were normal.
…In terms of my physical appearance, I don’t have stretch marks but the shape of my face changes almost daily. It’s been hard for me to piece together a visual timeline since I hate having my picture taken and therefore, steer clear of camera lenses. (NOTE: I did manage to put a timeline together…You can find it here. http://cushings.invisionzone.com/index.php?app=gallery&album=408) How sad is it that I have very few pics with my kids because the person I see in the mirror is a stranger! I don’t even resemble the person I once was…my weight just continues to creep up regardless of how little I eat or how much I exercise. The fatigue has gotten REALLY bad lately and my tolerance for any physical activity is gone. I have regular shortness of breath and my blood pressure and heart rates are all over the place. Just the thought of doing stairs to throw in a load of laundry is overwhelming. And after showering to get ready to go somewhere, the only place I’m ready to go is back to bed. I also have a small buffalo hump and my neck is very thick. 16″ necklaces that used to fit comfortably won’t even close now.”
January 30, 2012
Today I had an initial appt with an endo who ordered the following tests:
Gave blood today to measure:
UR/CS/CBC/FT4/T3RIA/TSH (have confirmed hypothyroid; TSH has been remaining high even on 125 mcg Synthroid)
GONAD #1
Thyroid Antibodies
Vitamin B12/Folate
IGF-1 (have two kids with GHD being treated, third child is being tested; endo suspects IGF-1 may come back low)
IGF-BP3
ACTH
Cortisol
Cardio CRP
DHEA (history of high DHEA … 554, 717, 1342)
Ferritin
Prolactin
Free Testosterone (history of low Free T)
Vitamin D, 25 (have confirmed Vitamin D deficiency, rechecking levels)
Vitamin B1
Vitamin B6
Vitamin C
Tuesday, January 31 having DEXA scan of spine, hips, and right wrist and ankle (have had multiple fractures on right side…cuboid (foot), anterior process (heel), elbow, wrist).
Thursday, February 3 having nerve conduction study because of peripheral neuropathy in hands and feet
Friday, February 4 meeting with opthamalogist for vision testing (peripheral vision is diminished, causing dizziness, balance issues, resulting in falls)
I’m waiting for endo’s order to have an MRI of the pituitary. Endo reviewing report from the CT scan I had in December 2011 after my fainting episode/collapes on the sidewalk outside my kids’ school. The report says nothing except there were not hemmorages, so anticipate order for MRI will be coming soon.
This seems like a lot of tests, but I think the endo wants to determine where to dig deeper. The nurse practitioner asked a lot of questions that led me to believe she may have been suspecting Cushing’s and/or growth hormone deficiency. And they were interested in a timeline I’d put together demonstrating my eight month experience on Ketoconazole, which allowed me to shed weight and caused an improvement of symptoms. (The weight went back up and symptoms flared off Keto as posted above.)
I guess I’m in a waiting pattern now as the endo pulls together the results of all these tests and decides which tests will be next. The only next test that was discussed was GH stim testing, again leading me to believe the endo may think he’ll uncover that issue, especially since I have two kids who are GHD. (My son also has smallish pituitary and chiari malformation and my daughter has a Rathke’s cleft cyst.) I know a lot of the standard Cushing’s tests are missing from the above list, but this is a starting point. I’ve never had such a full endocrine workup, so at least I’ll have a baseline.
I’ll post more about my journey as my test results start coming in.
Hello. I was led to this site while searching for information. I am surprised to find out that so many people have similar stories to my own.
Last summer I went to the ER because of unexplained vomiting. They said that my liver values were off, and I needed a CT scan. So I went to my internist and after the scan he called to tell me that they found a tumor on my left adrenal gland. He told me to stop taking Metformin, and at the time I was taking 850 mg 3 times daily. I am severely diabetic, have hypertension and am taking 5 blood pressure meds. I have had a lifetime of weight issues, missed periods for years at a time, have had hair loss on my head, but I shave my chin and mustache every day since I was a teen, and I am constantly tired. I also am obese, but eat usually once a day now, since my abdomen is so large. My legs and arms are smaller than the rest of my body, and this has happened over the last 10 years. I have a buffalo hump, and have since I was a teenager.
The last 2 endocrinologists I went to just yelled at me for not eating properly and not monitoring my glucose levels. One told me that she was glad my daughter is married because I am going to die. She never checked me for anything. The crazy part was after the internist called me and said that I would have to have surgery to remove the adenoma, he changed his mind. All of a sudden, he said I needed to be followed by an endocrinologist, after he knew the two that I had been seeing. He referred me to a new endo, who immediately said she didn’t think I had Cushing’s syndrome, but she ordered some tests. I didn’t take them because she was in the process of leaving the practice. I see a cardiologist who insists that adrenal adenomas are common, and usually don’t require any attention. UMMM, I am on 14 different medications for diabetes, hypertension, depression, and arthritis in my back. I think the evidence is present, but the doctors don’t seem to want to deal with my situation.
So, I changed doctors. I go to a new endocrinologist on 9/2, and I pray this one will listen. My health is failing, and my quality of life has sufferred because of all of these problems.
Hello. I just joined so hopefully I will learn more about Cushing’s and find support and encouragement. I’m not sure if I have Cushing’s yet.
I’ve suffered for years with gaining weight and in the past few years, it seems that no matter what I did, the weight was glued on. And, it got more difficult to stay active. Even walking like I used to enjoy has become very hard. This past year, I gained a lot of weight in a short amount of time. I’ve been considering weight loss surgery, in fact.
My other symptoms: high blood pressure, high cholesterol, fatigue, muscle weakness, joint stiffness, my bones hurt, sleep apnea, edema that started in my feet and ankles, but seems to be throughout my body now…and yes, my face has changed drastically.
I don’t go out like I used to. I work, come home, go to bed. When invited out, I make excuses so I don’t have to go out. Recently, I had a doctor visit with my cardiologist and he said he thought I might have Cushings. He referred me to an endocrinologist who I have not seen yet. My appointment is in 2 weeks.
In the meantime, he ordered some bloodwork and a 24 hour urine. So far all the bloodwork is normal. Even the ACTH was normal. I have to do my 24 hour urine tomorrow and also the AM/PM Cortisol. Part of me is dreading the results, and part of me wants to know why I can’t lose weight.
Everyone makes you feel like it’s all your fault. I can’t even get my Gastric Bypass unless I lose 30 pounds first and I have tried and failed. I don’t even know if I can have the surgery if I find out that I have Cushings.
Can you have Cushings with a normal ACTH? I’m so confused. Any help would be appreciated.
~~~~~~~
She also submitted a second version:
First, I thought I posted, but maybe it didn’t go through. Starting again. I’m 55,
I haven’t been diagnosed yet, but I was at my Cardiologist’s last week and he seemed perplexed with all my undiagnosed symptoms. I have a plethora of problems beginning with weight.
I’ve been battling my weight for the past 10 years, but about 4 years ago it seems that no matter how active I was, I wouldn’t lose, in fact, I gained. It didn’t seem reasonable to be working out, eating right and still gaining. This past year alone, I gained 45 pounds in a few short months. It’s made me feel so sick!
I’ve been forging ahead to have weight loss surgery, but they want me to try to lose about 30 pounds first and I just can’t. It’s a losing battle. And I don’t even know IF I can have the gastric bypass if I am diagnosed with Cushings.
Other symptoms: High BP, extreme fatigue, muscle weakness, joint pain, my bones hurt, even lifting a coffee mug feels like my wrist is giong to break! I have edema that started in my feet/ankles but my whole body feels waterlogged. My liver is enlarged and throwing off high AST/ASL results. I have sleep apnea and it was untreated for a few years, so I developed Pulmonary Hypertension.
My face has changed this past year, I don’t even recognize myself. So, my Cardiologist says he thinks I may have Cushing’s. He has set up a referrel to an endocrinologist, which is in 2 weeks. But, he did order a slew of tests.
So far, everything is normal…including my ACTH. Tomorrow, I am doing my 24 hour urine and my AM/PM Cortisol. Can you have a normal ACTH and still have Cushing’s? I’m anxious to find out but almost hoping that I have Cushing’s, as it will be an answer to what is happening to me.
Anyway, glad to have found this support group!
Thank you in advance for any support/encouragement.
Recent Comments