Pit tumor removed 1999. cortisol getting higher last 3 yrs. now confirmed ‘its back’.
Dr wants to remove both adrenals.
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November 17, 2013
Adrenal Surgery, Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments adrenal surgery, cortisol, Golden Oldie, pituitary, recurrence, tumor Leave a comment
Pit tumor removed 1999. cortisol getting higher last 3 yrs. now confirmed ‘its back’.
Dr wants to remove both adrenals.
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November 17, 2013
Adrenal, Adrenal Surgery, Golden Oldies, Treatments adrenal gland, laparoscopic 1 Comment
Only recently diagnosed after several medical issues.
I had to do my own research and had someone non-medically related suggest that I might have cushings. I was in denial and then after having two others suggest it, I asked to be tested.
The result is that I have Cushings of the adrenal gland, I will be having laproscopic surgery on the 15th of November (2010) and have no idea what to expect.
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November 14, 2013
Fibromyalgia, Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed Blood test, chest pain, congestive heart failure, Fibromyalgia, Golden Oldie, PCOS, Polycystic ovary syndrome, shortness of breath, thyroid, undiagnosed, weight Leave a comment
Hello, my name is Bev I have 8 kids yes that is not a typo :)…
I have been fighting whatever is wrong with me for the last 16 yrs. I have been diagnosed in the past as having a thyroid problem. That was always changing( hypo to hyper thyroidism) and now I am told my thyroid is fine. I was diagnosed with fibromyalgia and PCOS.
Now in the last year I have gained about 100 lbs. …No matter what I eat or how much I exercise…. I recently went to the ER because of way more than usual water retention along with chest pain and shortness of breath. They tested me for congestive heart failure, and that is not the problem.
After many blood test and etc. they have “unofficially” said I have Cushings. I go to see the Endoconologist in a week. I dont want to have this as I know noone else does! But it would be a relief to know what is actually wrong with me….. I am tired of this emotional and painful roller coaster my body has me on.
Confused and scared about what is going to happen.
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November 13, 2013
Undiagnosed daughter, hypercortisolism, testing, undiagnosed 2 Comments
Hi, I’m Cat and I have a 17 year old daughter who may have Cushing’s. I am aggressively seeking help for my girl.
We are on doctor #3 and have hit another wall w/ this one too. My daughter has several physical manifestations of Cushing’s, as well as two episodes of hypercortisolism confirmed on labwork. However, my daughter’s obvious symptoms are being quickly brushed off.
I need major support in how to navigate this hellish ride and I am seeking guidance in finding a Cushing’s specialist who will either rule in or rule out a diagnosis of Cushing’s in my girl.
thank you
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November 11, 2013
Bipolar, Fibromyalgia, Golden Oldies, Hypothyroidism, Other Diagnosis, PCOS, Thyroid, Undiagnosed ADD, adult ADD, Bipolar, Blood test, chiari malformation, cortisol, CT scan, DEXA scan, DHEA, dizziness, duodenitis, Fibromyalgia, Folate, gastritis, gluten sensitivity, Golden Oldie, growth hormone, hernia, hypothyroid, IGF-1, iron, kidney, liver, MRI, ovary, PCOS, peripheral neuropathy, Polycystic ovary syndrome, polyps, prolactin, Rathke's cleft cyst, REM, sinus, testosterone, undiagnosed, Vitamin B-12 Deficiency, Vitamin C, vitamin D, zinc Leave a comment
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.
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November 10, 2013
Adrenal Surgery, Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments adrenal glands, brain, Buffalo hump, Cushing's disease, DI, diabetes insipidus, hair, hernia, hip fracture, pituitary, surgery, weight 2 Comments
I was diagnosed in June 2012 with Cushing’s Disease after almost three years of a variety of illnesses.
My husband and 8 year son have seen me through a brain surgery and its failure, permanent DI, removal of my adrenal glands, a hernia surgery, a severe hip fracture, four additional hospital stays including 10 ER visits.
I used humor to get me through these past couple years (and prayer). I needed to laugh as I gained 81 pounds (while doing a sprint Tri, running a 10k, and working out when I wasn’t on crutches), having hairy arms, a hump on your back and so much more.
I have been lucky enough to continue to work and am blessed with a supportive family and friends. I hate this disease for so many reasons but I am not going to give in to it.
I feel very lucky that someone directed me to this site and I am grateful for the opportunity to not feel alone on this journey.
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November 9, 2013
Adrenal Adrenal, cushing's syndrome, gland, tumor Leave a comment
I have recently been diagnosed with cushings syndrome and awaiting removal of gland and tumour
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November 8, 2013
Pituitary, Pituitary Surgery, Treatments anxiety, Buffalo hump, CSF leak, depression, edema, Emory University, fatigue, high blood pressure, memory loss, Moon face, muscle ache, painful joints, pituitary, pituitary surgery, remission, Sleep apnea, Stretch marks, striae, swelling, tumor, weight 1 Comment
I am 40 years old and recovering from Cushing’s.
I was diagnosed in May 2012 after several years of being mis-diagnosed and treated for the wrong diseases. I was finally able to have the tumor on my piuitary gland removed at Emory Hospital, Atlanta GA in January 2013, however, I had a CSF leak 4 weeks into recovery and had to go back for the repair surgery in Febuary 2013.
I gained over 80 pounds, developed high blood pressure, developed severe swelling all over but especially in my lower legs, I had to have my eyeglass prescription adjusted, had watering eyes, memory impairment, sleep apenea due to the weight gain, depression, anexity, lovely stretch marks on top of the lovely ones I had from having children, I had started developing the attractive buffalo hump between my shoulder blades to go with my lovely round and red face, and I am sure there are other symptoms that I had that I just can’t think of right now.
I am currently 8 months into remission, however, the recovery process has been a beast! I had very severe muscle fatigue and joint pain to the point that I could not get myself up out of chairs. I am just now able to make it up and downstairs without assistance and muscle pain. I still have some joint pain and overall fatigue. I can not make it much past 9pm without having to go to bed.
However, on a good note I have lost 40 pounds so far and I plan on loosing the next 40 pounds by this time next year! I did go back to work fulltime in April 2013 and I started my college classes back in August 2013. I did not let Cushing’s stop me from living and I have not let the difficult recovery stop me either.
It would have been easy for me to give up, but that is not the life I wanted!
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