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Brenda, Steroid-Induced Cushing’s

March 1, 2026

MaryO Adrenal Insufficiency, Steroid-Induced , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I have had Cushing’s for two years. I have been to Mayo Clinic four times in the last two years, and just recently was accepted and seen at the National Institue of Health’s Rare Disease Program in Bethesda, Maryland. I am from Michigan.

I am 34 years old-a RN, BSN who had worked for ten years happily as a nurse-then I became quite ill due to my Interstitial Cystitis-my Urologist put me in the hopstial-I came out of the hospital after five days, and ten days post hospitalization I awoke with severe joint pain, pitting edema, night sweats, fever, Short of Breath, I had a seizure the next day…..I had only been 135 puonds-very active, worked out-played the clarinet in my church orchestra weekly for three services.

After this illness-I was put on steroids to decrease the joint swelling-turns out I was exposed to Legionella disease during the hospital stay and most likely contracted it after taking a shower at the hospital. My world has been turned upside down since then…I was gaining 10-12 pounds of fluid WEEKLY…finally when I went to Mayo Clinic my first visit in 11/07, they felt the Cushing’s was related to the steroid’s I was on-which was not a high dose, to try and decrease all the swelling-no one thought could pin point why I had so much fluid retention-this was about four months from when I first became ill and I know was 195 pounds!

I returned again to Mayo 1/08 and then again 4/08….in April of 2008 it was an urgent visit-I had been passing out DAILY in my condo in Grand Rapids, MI-two hours from my family-my friends would find me-or I’d wake up fallen on the floor, etc-my internist had me come immediately to Mayo-I was set up with a leading Endocrinologist at Mayo and within 24 hours I was diagnosed with Cushing’s Syndrome and Adrenal Insufficiency-my Urine Cortisol and ACTH stim test were awful. I was put on Replacement Hydrocortisone (At this point I had been off ALL steroids for five months-but continued to gain fluid-I was now 240pounds…they did a tissue biopsy-when they cut into my skin fluid came running out-they-at Mayo had NEVER seen anything like this!).

After returning from Mayo-(my father took me for the ten hour drive each time, we would be there about 8 days-he was such a rock for me as I had always been the independent child in the family…now I needed help-and that was hard to accept). I forgot to mention at this point I was developing many skin rashes, my hands looked like they had been chemically burned all the way up to my elbows….I had allergy/PATCH testing done-found out I was literally allergic to almost everything in the environment-All preservatives in medicine, formaldehyde, lanoline, rubber, adhesive, all chemicals, fragerances-even toothpaste, makeup, it was unreal!

Five days after returning home-I ended up in the hospital in GR-I had a secondary cellulitis/bacterial infection with fever on my hands and arms-I was put on IV antibidics …unfortunately the “hospitalist” I was assigned (In Michigan your internist doesn’t round on you-you are assigned a hospitalist to take care of your inpatient care)…anyways-he didn’t believe I needed to triple my steroid dose when ill-so he refused-I fell into a coma that day! Thankfully one of my good friends, also a RN, came to visit when all th staff was trying to awake me-and my friend said, “my God-she’s in an adrenal crisis!” Once they got the Cortisol in me I was okay. But that was terrifying-I could hear everything the nurses, and medical staff was s aying and I couldn’t talk, blink, move anything-I had tried to call my internist before I slipped into the coma-but I couldn’t talk-I remember hearing the receptionist-but I coudln’t talk-they found my cell phone on the floor where I had dropped it.

it has been a hard road-i returned to Mayo 11/08……at this point I was 300 pounds-they did a full body CT, MRI’s of knee’s, etc-all my tissue is full of fluid-they honestly wre not sure what to do-they just hoped that by tryijng to wean down on the steroids my body would start making aCTH and “Cortisol-I brought intormation on the Rare disease Program at the NIH-my internist at Mayo and in Grand Rapids, MI referred me-I also sent a letter with photo’s. I kept a photo journal from the beginning of my journey-taking photo’s of my striae, abdomen, buffalo hump, arms, legs, abdomen, and SEVERE fluid retention – I took these photo’s monthly so the doctor’s could see how this progressed-this was one of the most helpful things I did.

Thousands are referred to the Rare Disease Program-only 50-100 are accepted. I was accepted. My father and I flew out to the NIH May 17th and returned May 22nd. They paid for our travel, all hospital charges, and lodging for my father at the Safra Lodge there on the NIH campus.

I met the guru of Cortisol-Dr. Nieman-she was incredible. It was an amazing experience to be there-like Mayo-their philosophy is “we are here for the patient” unlike many doctor’s I had run into in Grand Rapids-I’m sure many can relate to some doctor’s that don’t even have ten minutes for you-here and at Mayo then spend 1-2 hours with you-you are their priority. It’s refreshing.

They changed my replacement steroids from Prednisone to Hydrocortisone, I’ve slowly been weaning-but I’m stuck at 10mg in the am, 5mg at 2pm, and 5 mg at 6pm. I also had many other consults while there.

Currently I have a WONDERFUL internist in Grand Rapids-I had to change doctors 2/08-I had been with a family practice doctor and this was just way out of his expertise, I also have a wonderful Urologist, Dr. Casamento whom has been my urologist for over ten years-he has been SO kind and helps me handle my Interstitial Cystitis.

Other than that I have transferred my care to Univ. of Michigan. I have the Chief of Endocrinology at U of M as my Endocrinologist-he is awesome-so intelligent-and he works with the NIH and my internist to help formulate a plan.

I also have a wonderful Rheumatolgosit at U of M- I have a lot of damage to my knee’s-and as I said-my weight is now at 300 pounds-they say over 50% is fluid-and you can tell-my skin is SO taught, nothing is flabby….I’ve been on so many diuretics-nothing helps-next step is to see nephrology at U of M.

They Cushing’s Syndrome symptoms are hard to deal with-you have to learn to adapt-the abdomen, the buffalo hukp, the stria-I look just like the diagram on your website-I had to cut my hair very short as I was sweating ALL the time-another bad side effect. I have had to go from being able to live in my third floor condo-to moving home to my parents-I can’t do stairs anymore-I do PT exercises daily at their home-I have to use a walker at all times, I also have to sleep upright-as my abdomen is SO distended if I like even at a 45 degree angle I feel like I’m suffocating. I PRAY for a miracle-the NIH and Mayo had NEVER seen someone with such severe symptoms of Cushing’s. They now are not sure if I have primary or secondary adrenal insufficiency.

In the meantime I have some major damage and arthritis in my spine/knee’s ankles-but I’m not a surgical candidate per my ortho doc….he’s just doesn’t know how to help me.

I think the hardest things for me are just ADL’s (Activities of Daily Living) shower, even using the bathroom, hygeine, etc….and still not allowing anyone to help me-I’m stubborn that way-but the worse the abdomen distends, the worse the fluid gets-the harder it is for me.

Thankfully I have so much loving support from family and friends-but qualify of life is so low. I no longer get out of the home-it’s too hard-and the stares I get from people, and the laughs because of the Cushing’s is hard….I had been getting my groceries using an Amgio cart-but now that I’m living with my parents they take care of that.

Thankfully I had no problem getting disability-but COBRA and my medical bills have taken my entire savings. My church family even pays every other COBRA-but at 540.00 a month-plus all my other bills/mortgage, etc-it’s been a devestation financially.

I wish everyone with Cushing’s the best of luck-just know you are NOT alone. My faith has sustained me in hard times-I can’t imagine not having faith to get throgh this.

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Voices from the Past: Louise, Updated Adrenal Bio

January 21, 2026

MaryO Adrenal, Adrenal Surgery, Treatments , , , , , , , , , , 2 Comments

Louise’s original bio was here.

Here’s a lil update.

So I went to the urgent care because of lower abd pain, much like previous pain from cysts that burst in my ovaries.

The doc did a CT scan, and to my surprise found bilateral adrenal hyperplasia. A referral was to an endocrinologist and after the usual testing found I have ACTH-independent macrodular bilateral adrenal hyperplasia.

I do not have the outward appearance of cushings per se, but over the last year the s/s have significantly increased. (short term memory loss, achy legs, increased facial hair, gained 10lb in a month *I only eat 1 meal a day, edema, generally feel like CRAP)

the doc sent me to OHSU because my case had him perplexed. He said usually patients come in c/o of s/s of cushing’s and then tests are ran to confirm. However, in my case, cushing’s was found incidentally in testing w/o the outward appearance so much.

I’ve now met with a surgeon to discuss a bilateral adrenalectomy (which at this point I want these things OUT!) but I am worried about the recovery post-op and quality of life.

From what I have read, people seem to feel that the risk of Addison’s is better than living with cushings. Is that the general consensus? I am so overwhelmed and I am having trouble getting out of this pity party for myself.

Louise added her Helpful Doctor, Maria Fleseriu, to the Cushing’s MemberMap

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MizBellaTru, Undiagnosed bio

November 12, 2025

MaryO Diabetes, Golden Oldies, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

A Golden Oldie from August 12, 2007

I’m a 48-year old female who has had an awful lot of illness over the past 12 years and starting to wonder if there could be some connection to all of it even though my doctors don’t think there is. They just think I’m one of those unlucky souls who just is sick alot and doesn’t have very good genes.

Here’s what I can tell you about me health-wise:

In 96 I had to have my colon removed due to Ulcerative Colitis. This resulted in 3 surgeries.

In 97 I developed Iritis (inflammation of the eye) and one of the docs said that because I no longer have a colon and have an auto-immune disorder that now my whacked out immune systems has started attacking my eyes. I’m in remission currently but this will be something I’ll have to deal with for the rest of my life.

Things were fairly quiet for a few years with the exception of having Iritis flare-ups and don’t remember anything else going on until 2000 when I broke my left ankle (badly) and now have a steel plate with 11 bolts holding my ankle together. (This happened in 2000 and I still have problems with that ankle).

In 2001 I was diagnosed with Diabetes. This had run in my family (my great-grandmother had been diabetic and I had been borderline diabetic as a child). I started out taking oral medications but after a couple of years this wasn’t enough and it resulted in me being on insulin now for the past 3 years. (Sugars still aren’t under control).

Also in 2001 I had some kind of seizure. Was taken to the hospital and after a lot of blood tests they thought it might be due to a calcium deficiency and recommended I go see an Endo. However, when I wen to see an endo he didn’t think my calcium was deficient enough to cause what had happened and recommended I go see a neurologist. The neurologist thought it was some kind of seizure too and ran some preliminary tests on me but he wouldn’t return any calls for me to find out what other tests should be run. I gave up on him and still never had an answer about what had caused this very weird episode. (What had happened was that I had been at work and all of a sudden my jaw started to tighten up and my head cocked to the side and I started making all these weird grimaces. My mouth became locked up so could barely get any words out. I couldn’t turn my head – it was as if it was locked in place. This is what led the ER (after running blood tests) to determine that they thought my reaction was due to low calcium. To get my rigidity to loosen up, they gave me several shots (can’t remember now what it was) but it finally had allowed my body to loosen up enough that I could finally leave the hospital. This event lasted several hours and moved in to my arms where they became so rigid that it felt like someone was turning my arms inside out. I was completely exhausted after that had happened.

As time went on I would have periodic episodes of what was thought to be a seizure and I just started to learn to live with it. Sometimes only my face was affected and sometimes my whole body would become very rigid and after several hours these episodes would pass but I was always left feeling completely worn out.

Throughout all this time my Diabetes has been almost impossible to get it under control. My insulin doses would be increased but I never could get my sugars to stabilize.

In the spring of 2006 I developed some type of wound on the top of my left foot. It spread and ulcerated and I went to several types of doctors and a couple of them thought it might have been a spider bite of some kind and due to the diabetes it wasn’t healing. I was put on various types of strong antibiotics but nothing was helping. I finally was referred to an infectious disease expert and he said I had some type of serious strain of staph infection and he finally was able to get me on an antibiotic that started to help me heal. I’m now left with some horrible scarring on my left foot but at least I didn’t lose my foot which is what I thought might happen.

In August of 2006 I developed Bells Palsey on the left side of my face. I went to a neurologist (different one from the one I had gone to for my “seizure”). He was the one who diagnosed me with Bells. In the process of seeing him I had one of those episodes in his office and he watched me very closely as it evolved and told me that he thought I had a form of “Dystonia” which is a movement disorder. After a couple of months my Bells resolved although I do have some permanent nerve damage in my face which affects how I smile but it seems to only be really noticeable to me.

In late fall of 2006 I noticed my right ear was hurting quite a bit and was draining. I went to this ear doc and she determined I had a ruptured eardrum with a huge hole that might require surgery. She also determined (after some tests) that I had an infection in the mastoid and said it was imperative that I not let any water get in my ear so that the ear could dry out enough and the infection to clear up before I have surgery. She said it could take a couple months before my ear might be dry enough and told me to come back in a couple of months. During that first visit she also did a hearing test on both ears to establish a baseline. I came back to see her in Jan 2007. When she looked at my ear she said it looked like the eardrum was starting to show some signs it was trying to heal itself (because originally she thought the hole was too big for it to ever heal on its own). She told me to give it some more time and come back again in a couple of months. I came back to see her in April 2007 and the hole was still showing some progress in trying to repair itself so she said she didn’t want to operate if my body could heal the hole. In June of 2007 my left ear started producing a very high pitched ringing sound. I’m not talking a little ringing sound but a sound loud enough it kept me up at night. I had noticed my hearing had diminshed quite a bit in that left ear. I then developed some dizziness and a sense of fullness in my left ear and noticed that when the barometric pressure changed my head felt like it was going to explode. When I went back again to the ear doc she surmised that she thought I now had developed Menieres. She put me on a diuretic and a steroid as this is supposed to help with Menieres but it didn’t seem to do a thing for me. The ear doc ran another hearing test and found that my hearing in my left ear had diminished since it was first baselined last December.

So, a little over a week ago my right ear (the one with the perforated eardrum) started hurting quite a bit and the ear started draining. Again I went back to the ear doc and she determined I had a sinus infection and an ear infection so she put me on an oral antibiotic and antibiotic ear-drops. It’s been a full 7 or 8 days on this antibiotic treatment and my hearing in my right ear has diminshed considerably to where I can hardly hear a persons’ voice on the phone. I’m to stay on this present course of antibiotics for another week. In the past I’ve always responded to antibiotics but it doesn’t seem to be helping this time. My right ear has been draining for a whole week and it’s never done that before.

Also I want to point out that I gained a lot of weight over the last 15 years and I’m now about 120 lbs overweight. I gained 12 of those pounds in just less than 2 weeks recently and my eating hasn’t changed. This is what made me start looking on the internet about rapid weight gain when I came across Cushings and started wondering if I could have this.

At this time I’m waiting on some results from a urine test to see if I’m starting to have a problem with my kidneys because I’m dealing with a lot of edema lately. I don’t know if all the problems I’m having such as the poor wound healing, edema, diabetes, developing high blood pressure are all separate things or more related to my Diabetes.

So at this time I can’t claim that I’m a “cushie” because that’s not been identified yet but I’m thinking that I should get tested for it.

Anyway, that’s what’s going on with me right now.

Thank you for reading this very long bio.

MizBellaTru

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Tracie (ktfisher91), Pituitary Bio

November 6, 2025

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , 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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Voices from the Past: Meriam S (Jomisa03), Pituitary Bio

October 31, 2025

MaryO Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments , , , , , , , , , , , , , , , , 1 Comment

The pituitary gland

The pituitary gland

 

My name is Meriam San Antonio, 52 years old from Fairfield, California. I have been married for 19 years and have three teenage children. I was sick for almost 7 months ( starting March 2013) and the doctors couldn’t figure out what is wrong with me. My symptoms were being bloated, had edema on my feet and legs, swollen all over, had a “moon face”, bruising on my hands, myopathy/neuropathy, aching nerves, bloated stomach (as if I was pregnant), double vision, and lost my ability to walk.

I have been in and out of the ER due to having a congested heart failure, urinary tract infection, colonitis. I suffered from acute depression and tried killing myself. My blood pressure and blood sugar was soaring so high and uncontrolled.

After a series of tests, I was finally diagnosed of having Cushing’s syndrome. A surgery was done on August 2013 to removed my pituitary gland at the left side of my brain.. I had to take an early retirement from work and currently on Social Security Disability.

Two years had past and I have recovered. I lost weight, my blood sugar and blood pressure were now on the normal range. It seems after the surgery, everything was back to normal. I can now walk on my own ( without the help of a cane, walker and wheel chair) but had to undergo a knee replacement as I fell many times on my knees due to nerve weakness. I had a rough time and had gone through a lot.

I stopped taking my PTU medication as told by my doctor as I am already “Cushing’s free”.

But my endocrinologist just informed me that the result of my thyroid test was high. She ordered me to take a “nuclear iodine test” next week. I am so worried that my Cushing’s will come back. I do not want to undergo such experience as I was so traumatized by it.

 

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Shannon, Pituitary Bio

September 30, 2025

MaryO Golden Oldies, PCOS, Pituitary , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

A Golden Oldie

The pituitary gland

The pituitary gland

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

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Ginger’s Father, Adrenal bio

September 24, 2025

MaryO Adrenal, Adrenal Surgery, Golden Oldies, In Memory, Male, Treatments , , , , , , , , , , , 1 Comment

A Golden Oldie

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

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Voices from the Past: Angela Marie (Angela M), Undiagnosed Bio

August 18, 2025

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 6 Comments

Growing up I’d always been anywhere from underweight to average with a couple chubby phases in my pre-teens and teens. I actually got into modeling work for nearly 10 years and I found myself having to take time off in 2008..At least I thought it would just be little while. Between anxiety, being fairly active and a high metabolism, I never had trouble losing weight until In 2007 out of nowhere, I found myself rapidly gaining a lot of weight. All together I had gained about 60-70 lbs in well under a year without my diet or lifestyle ever changing and I’d always been a light, picky eater. I went from a usual size 5-7 to 15 or S/M to XL/XXL. I got back into yoga, pilates and even bought a Total Gym. Working out and dieting even I wasn’t losing even so much as water wieght. I was notiing a whole host of new symptoms. From purple stretch marks, gaining weight, my fingers, toes and palms of hands constantly bright red. Weight gain/appearing swollen only in my torso and upper body, to even my features changing. Adema, constantly craving and eating ice. My once heart shaped face was now completely round and full starting from the top of my ears. I appeared more swollen than anything.

My first endo diagnosed me with hypothyroidism. He was the first to suggest Cushings and my first 24 UFC was 4 times higher than normal and the next was slightly above normal. The rest after that were in the normal ranges. Eventually hypothyroidism was ruled out after routine tests came back normal without taking the Synthroid and telling my doctor I was. Once I admitted it, he was so angry I proved him wrong that he dismissed me as a patient.

I was sent to another Endo and a specialist he referred me to. The next endocrinologist ended up being the most arrogant, rude person I’ve ever met and the few appointments I had with him ended up being mostly arguments or me breaking down into full blown panic attacks. The specialist I seen and his fellow who are supposed to be the best in my state initially believed I have Cushings once they went over my symptoms, medical history and photos documenting my physical changes. The specialist and my past endocrinologists even had grand round meetings on my case and still blew me off!

In 2008 I started having fluid/discharge from my right breast and after tons of testing to rule out breast cancer I was sent to surgery to remove the ducts. After this traumatic surgery, I still have fluid and from both breasts now that’s been ongoing for 6 years. Even after expalaining my situation and medical issues, I’m just told to lose weight. I went from completely normal sugar levels to borderline diabetic to “full blown” diabetic within a matter of months at the age of 26. I’ve seen numerous dieticians, nutrition and diabetic classes and no one can figure out why I’m not losing weight doing everything right. I was prescribed Metformin and lost a little over 20 lbs, but it was such a high dose it had to be lowered and I stopped losing any more weight.

Since everything started in 2007 it seems I’m adding more and more symptoms almost monthly to my already too long list with no answers as to why or what is causing them. I’ve done more research than some would consider humanly possible and probably more than some doctors I’ve seen! Reading blogs, forums, bio’s, etc. I can’t believe how many of the same symptoms I have as other patients. Mystery Diagnosis anymore is hard to watch relating so much to the stories I break down crying. The only symptoms I seem to be lacking is the constantly high cortisol, pronounced buffalo hump and thinning skin. Other than that I seem to have every single one, even the rarest or some I’ve never even seen associated. I’ve been offered so many possible diagnosis’, but nothing definitive. Everything from metabolic syndrome and PCOS to auto immune, parathyroid and that’s just your body!

I’ve seen or been pushed off on just about every specialist there is. At least my primary doctor admits there is something serious going on, but it’s over his head. Every single one of my other doctors, PA’s, surgeons or specialists believe I have Cushings, but I need an Endocrinologist to agree.

6 years later I still with labs all over the place, a list of literally 30+ symptoms and health problems because of this mystery disease that’s yet to be diagnosed. My Cortisol tests seem to be back and forth, but mostly showing low. My testosterone, ACTH and Insulin Like Growth Factor are all elevated. My vitamin D and iron are extremely low even with prescription strength vitamins. My white cell count is high enough to be sent to a cancer center to rule out different types of cancer. I was dagnosed with fattly liver disease and no answers as to why. Hair growth on my face and body, acne breakouts worse than I ever had in my teens. Chronic reoccuring skin, bacterial and viral infections.Dark pigmentation under my arms. Excessive sweating to the point my hair is soaked or sweat drips from my face in cool weather or shopping. Severe intolerance to heat. Growths or polyps on different organs without any further testing and more abnormal labs and symptoms than I can keep track of. I’m just at that point where I’m not sure if I give up and let it take me out or just keep searching for that one possible doctor who will listen and order the right tests.

All I know is I’ve lost so much of my life being so sick and disabled. Not working, not even modeling work on the side, no college to work with animals and be a veterinary tech, turning 30 and still not being able to get pregnant, going out and having fun like I should or even recognizing myself in the mirror. Loving swimming and summer, but can’t stand looking at myself or being engaged for over 5 years and pushing off a wedding because I don’t want to walk down the isle like this and look at my wedding photos remembering this time in my life.

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Voices From the Past: Lee (lee1958), Undiagnosed bio

August 17, 2025

MaryO Undiagnosed , , , , , , , , , , , , , , 2 Comments

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.

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Voices From the Past: Suzanne (Suzanna), Undiagnosed Bio

July 16, 2025

MaryO Undiagnosed , , , , , , , , , , , , , , , 1 Comment

Hi all,
Looking for some knowledge as I feel like my GP had been really unhelpful over this.

So I went to see him for some infected bites a few weeks ago. It’s really difficult to get an appointment with him so while I was there I figured I would mention my water retention. I’ve suffered with this on and off all my life (I’m 35) but lately it’s been a lot worse. I suspect my contraceptive pill, it’s called Yasmin (Yaz) and I’ve only been taking this particular one for about 18 months.

He sent me for a full blood MOT (vintamns, full blood count, liver function, thyroid, iron, etc etc, there were about 10 altogether).
The results of these came back and all were fine except the Cortisol level. I knew what this was because I’m a dog trainer/behaviourist and in dogs, Cortisol is referred to as the stress hormone. GP said a normal morning level was between about 166-507….mine came back as 1023!

He ordered a repeat Cortisol blood test and a 24 hour urine test. I’m still waiting on the results of the urine test but the second bloods came back yesterday at a level of 798. Obviously still very high, although lower than the first time. He says it’s likely I have Cushings. Cue massive panic as Cushings is very common in dogd and I have cared for a lot with it and it really isn’t very pleasant in dogs 🙁

GP says it’s caused by a tumour and I will have to have medication and/or an MRI scan and possibly brain surgery. I seriously do not fancy this when my only complaint is water retention!!

I do have quite a busy life, I work as a dog trainer and also run around after a five year old. I’m a naturally stressy person too, and worry excessively about things that don’t really need to be worried about.

My GP, when asked whether this could be caused by my pill, said no. But the other symptoms I get with this pill are occasional heart palpitations, mood swings, a feeling of buzzing sometimes, like adrenaline is coursing through me (I’ve always thought it was the estrogen?!) and increased appetite for sweet things and wanting to eat junk all the time.

My Herbalist is almost certain this pill is causing my hormone problems and is responsible for the high Cortisol levels. So I’ve decided to stop taking it for a couple of months and ask for a repeat test and see if it has made any difference. My Herbalist has also recommended Hemaplex and something called Ashwanganda.

My GP’s current plan of action is ‘wait for the 24 hour urine test results and then refer to one hormone specialist or another’.
Does anyone have a similar experience that could help me? Many thanks in advance 🙂

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