I am 37 years old and was recently diagnosed with Cushing within the last month.
In 2010 I was injured on my left leg and for the past three years have been going through medical doctor to doctor. I was only able to return to work for a month and had to go back out on disability because of symptoms. I would get weird mysterious symptoms every month, my doctor said there was clearly something going on in my body. I have been diagnosed with heart burns, sleep apnea, low blood pressure, high blood pressure, vitamin d deficiency, anemia, possible diabetes, now obesity, fatigue,anxiety, and fibromyalgia.
It has been a very long process to get to the Cushings diagnosis. Prior to all of this I did not have any serious health problems, I was a litigation attorney, every day I was in court running around with no health problems. I am hoping that I am on the road to recovery since I have been finally diagnosed.
I’m wondering about my situation. I haven’t been diagnosed with Cushing’s but I had my thyroid removed (Hashimoto’s with goiter, family history of thyroid cancer), concluded menopause, had two car accidents (rear-ended)…all in the space of a few years, around 2003-2006. Up until 2003 (the first car accident,) I was a very energetic, upbeat, even-tempered, fit, active, mother of two, and holder of three part-time jobs including teaching high school. I was 50.
Following the car accidents, I developed chronic disabling low back pain. Following the thyroidectomy I developed all kinds of symptoms involving almost all body systems. I’m now bedridden to housebound for great swaths of time. Up until now I’ve been haunting thyroid and adrenal boards, and plowing my way through endocrinologists, MDs and naturopaths looking for answers.
Starting in 2006, I began experiences episodes I call “tizzies” which have baffled all concerned. They last from 6-8 months, building up, reaching a peak, slowly subsiding. They are extremely debilitating and involve many, many symptoms mental and physical. After six or seven of these, I’m convinced they are episodes of extremely high cortisol and I do have some labs to support that, though they are from alternative type laboratories. The saliva ones take four samples spread throughout the day and the 24-hour urine ones are as they sound.
During a trough I have a saliva lab showing mostly low cortisol values. During a different trough I have 24-hour urine results from which the ND pronounced I had Addison’s-like adrenal function. During a recent peak I have both a saliva and 24-hour urine showing off-the-charts high levels of cortisol. Coming down from that peak, I have saliva results showing cortisol low in the morning moving up to extremely high at night.
Robyn was diagnosed with Cushing’s Disease in 2004 and had 2/3 of her pituitary removed. This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.
She writes: “Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again. I am now going through what I did 8yrs ago. My endocrinologist doesn’t think that the Cushing’s is back because of my tests being borderline. He told me that he thinks I am obese and I need to have stomach surgery. I seriously cried for days and told him that I disagreed and I wasn’t going to give up…I need support in following through with the tests that I need to. Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don’t have the Cushing’s back and I will have to live like this the rest of my life. Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.
I’m praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out.”
this story is of my father. He was a or nurse on the transprt ship the usst sea barb during ww2, he graduated high school at age 16 and he then went to simpson college and had completed over two yrs when the war broke out. he signed up seeing how he was studing to be a doctor they signed him up in the corps.. after the war ended he went back to school. and then a year later signd up for the reserves. he continued to go to school ,work part time and work in the reerves. he and mom had two children by 1953 and he continued to do thest things. during this time some kids drove past him very fast and crashed their car. my dad getting off of the reserves and still being in uniform stopped a couple of the kids where dead but he did save the others by stabiliting them tell help arrived. and one young adult had major trama dad took his uniform jacket off and wrapped him up saving hs life tell help could get there. dad came home and mom seeing him covered in blood screamed until my dad calmed her and told her it was not his.
the year was 1957 my dad was starting to show signs of the disease he had lost an 1inch and half and at home he used to be a loving and decated husband and father but he was having more problems controling his emotions…he was in pain allot. the reserves still took my dad. and my dad had gooten a B/S degree in biology and education and he had then transfered to a methodist seminary to become a minister in 1950. by 1957 he had a nother degree and had completed chaplain school with thearmy reserves.
in 1961 i was born and the following spring he had a tabogoning accident which he could not move from and he wsa sent to fargo north dakota where it was discovered he had cushings as they called it from there he was sent to minnaplais/ minn where he stayed for 265 days. he had four major surgeries and 11 minor ones. trying to correct the symptoms of the disease. he had his gallbladder removed mar 1963, due to gallstones, he had his adrenal glands jan/1963 removed due to the high levles of hormons.abscess from ruptured divrticulum .tepary colestemy repai at age 39 “1963”his doctor was dr. Pelzi he suffered from osteoperosis with fractures of th spine/back. clavicle and several ribs more then once.
after a serious illness in apr 1962 he was sent to fargo with compressed fractures of the spine, ankle edema, weight gain and th fractures.at the minneapolis hosp he showed he was in the late stages of the disease he had osteoperosis, with mutliple compressions fractures on inttering the hosptial in dec 1962 they found he had diverticulitis of the sigmoid colon,5/9/63 with abscess they where drained at surgery 1/11/63 in mar at the same time they took his adrenal glands they took his gallbladder due to chronic chelecyelithiasishe was put on replacement hormone thearpy.he had high bllod pressure due to cushings. he then had to have more surgery to correct colon 5/14/1943 problem with aneatomeisi a tempary cocestomy was done and ended on 7/3/63 when the colestomy was closed and his large bowel was then re-anastemesed. on 7/5/1943 his family was called and told he was dying and there was nothing they could ddo to help him. mom rounded up us for kids and took us up to the hospital dads parents had gotten there thirty minutes before and they pronounced my dad dead when they arrived. when we got there mom called my dads name and he sat up in the bed and talked to her. he got out of the hospital in sept of 1963. the military retired him and the methodist church also did. he was walking with the add of churths and a cain. he also could not longer control his emotions.
when he had entered the hospital they had given him a year to live. or they gave him the option for them to experiment on him. due to his young age and him being a man they felt like the research could help allot of people. the studdied him to find where the disease can from and what it did to all the systems of his body. they gave him a pention and all the hospitals etc was free due to him being in the military but on inactive statis. my dad choice to help people. he was 39 years old and i was two years old.
when dad got out of the hospital he would be calm and kind and the next mintue a raging out of control person. even though he was very weak and never could walk well picking up his feet as he walked but when he got angry he had the strength of ten men. at the hospital they had told my mom about dads changed behavior and wanted to instational lize him from then on. but my mom refused feeling he needed to be at home with his family.
dad lived and went from job to job every few months to maybe lasting a a year here or there.due to his uncontrolable temper. we moved to wyo. and he continued to go to the va hospital in cheyenne wyo trying to get stabilized.we moved from town to town and in 1964 my brother was born. dad was very unstable and wwas in constant pain. in 1967 he almost beat my mom and little brother to death. the law came and took him to the edge of twon and told him not to come back. a year latr a few dyas before his and moms divorce would have been final he called mom and begged her to let him come home she refused and he said I will kill myself mom had heard that one many times before and she said go ahead. he did on thier 25 wedding aniversary. the next day.
I tell you this story to let you know of my dad who was a good healthy man, who was a good father and dad he had two B/S degrees and was in the ww2 and in the military almost 20 years. he became a minister and was a good one i heard. and then he got sick but instead of living without surgeryies etc he choose to help and let the doctors experiment on him so it would help other people. his body shows his scars and i have some pictuers of him. the atopsy is a mistory abut the man who claimed to have done it said even though daddy ws 46 years old he had the body of a 98 year old man. he was lost four inchs in hiegth and wher in the last stages of canser…the md also said he did not know how daddy had lived that long with all his health concorns… i have many documents that back up what i have said… i have discovered them doing genealogy research…just me ginger hawn cooper
my dads name was Charles Hamilton Hawn the fourth..my oldest brother says daddy is in th medical books som wof the first in treating this illness…from 1962-1967
My name is Barbara Garcia from San Antonio, Texas. I am 48 yo.
Diagnosed Tuesday with Cushings Disease. MRI shows 1.8 cm Pituitary Macroadenoma.
I have an appointment with the neurosurgeon on Tuesday.
Looking back, I am pretty sure this all started about 10 years ago. I am glad to finally have an answer and am hopeful that I will feel better after the surgery.
I feel like I owe my life to the wonderful endocrinologist who diagnosed me.
I was officially diagnosed with Cushings in December 2009. I had done several urine test ,they were inconsistant, I had the saliva test done, I had symptoms of cushings, brittle bones, fractures, fatigue, brusing, round face, weight gain quickly and hard to lose, lose focus, depression and arthritis beginning in my hands. IN December 09 I had a Dex. test done which quickly confirmed that I had cushings.
It took three years to get a diagnosis. So, I had surgery scheduled for Feb 2, 2010. I had a Cyst that ruptured so that was important to come out the surgeon removed 20 % of my pitutary, but didn’t get the tumor.
A few weeks after that surgery I have massive bleeding out my nose and mouth, and was in out of the emergency room for a week having my nose packed four times. After a month and going back to my Endo. My endo. told me there was still a mass on my pitutary. I didn’t feel better I ached all over by the time I got home from work I was done for and could only go to bed.
In aug. 2010 I had the second surgery. the plan was to remove the mass on the left side of my pitutary if my cortisol level did not go down the day after surgery the surgeon would take me back in to remove the right side of my pitutary. Thank goodness after the blood work my cortosol was .6 so there was no need for a second surgery ( or third) I am now 4 month post surgery.
I am now taking 30 mg of hydrocortosol a day. My joints ache, I get fatigued around 1:00 and lose focus. I get very depressed some days and can do nothing. I am 46 years old and have a 19 year old son and 15 year old daughter, My husband is very supportive.
I feel so guilty for having this, people don’t understand how horrible I feel some days, just because the tumor is gone doesn’t mean I feel better. Not losing much weight yet which is frustrating. but exercising when I can.
My name is Patrick and I live in Montreal, Quebec, and I’m 35 years old. I’m not very good in english so my bio will be as short as possible. Sorry about that, and let’s hope that you will be able to read my bio without any problems.
I have found this web site (cushings-help.com) because I was doing some research a few weeks ago on the internet about hypogonadism. Back in April, my new GP (one of the many I’ve been seeing for the last 10 years) wanted to test my testosterone levels and finally find out that I was indeed suffering of hypogonadism. Based on those results, he did recommended to me a Testosterone Replacement Therapy for a few months which I did start immediately.
Three months after the beginning of the TRT, I’ve been tested again to see if any improvements were noticed but, surprisingly my testosterone levels were lower then before I’ve first started the TRT (twice as low to be precise).
So, he then ordered a CT Scan of my pituitary gland to make sure everything was okay with my pituitary gland. I received the results of the scan two weeks ago and, according to him, everything is “normal”. He suggested that I should try some testosterone injections insted of both gels I’ve tryed so far. During my last visit, I talked to him about some ressemblance between the symptoms of Cushing disease and my symptoms which are :
– Rapid weight gain (70 lb in 18 months mainly at the torso)
– Severe depression for the last 7 years at least
– Broken vertebrae in 2005 for no apparent reason
– Circadian rhythm completely out of whack (can’t sleep without my 15 mg of Zopiclon each night for the last 5 years)
– Suicidal thoughts (one attempt in 2004)
– Hypogonadism (total and biodisponible testosterone levels of 4.32 nmol/L after three months of TRT)
– LH and FSH deficiency
– Higher cortisol level at 4 pm than 8 am
– Stretch marks
– Changes of my skin (thinner and dryer, take longer to heel)
– Deacreased libido
– Lost of strength, body mass and stamina
– Joint pain (especially in the knees and hips)
– Headaches
– Congnitive difficulties
– etc. etc. etc.
He did try to reassure me that it wasn’t Cushing, but because I know that Cushing is often misdiagnosed, I ask him to see an endocrinologist anyway. Thankfully, I have an appointment next December 3rd.
I will try to update my profile as soon as I will have any further developments. If you have any questions or advices, please feel free to let me know.
I’m 31 years old and feel like I’m 80. I’ve been ill for so many different things over the past couple of years.
In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why. I still have vision disturbances but after two med packs of steriods the double vision went away.
I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see. To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.
He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.
If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.
Here’s a list of my symptoms:
-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention
The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)
I was diagnosed with cushing syndrome in February as my cortisol levels were over 300.
A benign tumor was found on my right adrenal gland and it was removed May 3rd. I guess I thought everything would be fine after. My left adrenal gland is still not producing any cortisol so I am on hydrocortisone.
I wake up everymorning with diarrhea and I am nauseas nearly all day. I thought this would end after the surgery but now I am losing weight because I am not eating and my Endocrinologist says these symptoms are not due to the cushings and I should investigate further.
In 2010 I was injured on my left leg and for the past three years have been going through medical doctor to doctor. I was only able to return to work for a month and had to go back out on disability because of symptoms. I would get weird mysterious symptoms every month, my doctor said there was clearly something going on in my body. I have been diagnosed with heart burns, sleep apnea, low blood pressure, high blood pressure, vitamin d deficiency, anemia, possible diabetes, now obesity, fatigue,anxiety, and fibromyalgia.
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