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Shannon, Pituitary Bio

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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

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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

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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

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

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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Roxanna (Dawn), Undiagnosed Bio

6 Comments

I’m writing because im frustrated and sad. Today I got my results and doctor says negative for Cushings .
CORTISOL, FREE 24 HOUR.
F CORTISOL, FREE, URINE 36.2 Range 4.0 to 50.0

I have another appointment with an assistant to an Endocronologist but that’s not until next month March. I’m tiered of waiting.

I’m fatigued all the time. Insomnia. Emotional and currently tapering off venlafaxine. Lots of hair for a female. Camel hump.

Large abdomen. Low thyroid and high testosterone. Purple stretch marks. Edema in ankles and legs. Extreme joint paint and vitamin D deficiency. My teeth are decaying. I gained 50-60 pounds in 1.5years. Memory issues. Prediabetic and some hypoglycemia. Blurry vision sometimes.

I was hoping finally I would get treatment. I want to get an answer and help. I want to live again. I want to one day have anther child. I just know that I cannot plan on moving forward with life without taking care of this. I feel like I’m just in a hole.

I’m 31 years old.

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MIranda (Miranda34), Steroid-Induced Cushing’s

1 Comment

steroids

 

Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.

 

I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.

 

I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.

 

I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.

Take care!

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Xchicagoan (xchicagoan), Undiagnosed Bio

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golden-oldie

 

From Thursday, March 12, 2009

Hi there!

I’m new to the site, and quite frankly, new to Cushing’s Syndrome itself. Over the years I have been having what seemed to be a lot of unrelated symptoms, which are now escalating in intensity. And like most of you I have been from doctor to doctor trying to figure out what’s going on, with no success. What I find really scary is I’m now seeing uncanny similarities to the mystery illness that took my mother’s life. Out of frustration I’ve turned to the Internet for answers; starting by putting in different combinations of symptoms in hopes I would stumbled on to something conclusive.

It might seem pretty logical now, but I have been in a fog both literally and figuratively, never really looking at the “big picture”, since some of my symptoms were vague and generalized. Edema, hair loss, uncontrollable weight gain, etc., etc., etc.. Put those symptoms in and you get hundreds of different possibilities. And truth be told I had come across Cushing’s before, but I wasn’t convinced that was my problem. However, while surfing last night it occurred to me to include some family health oddities into the mix to see what I could come up with. The first one I started with was Adrenal Hyperplasia, and Bingo! I hit sight after site that described me, my mother, (dead at 61), and my niece (dead at 9), and I knew this was it.

So People of the Boards, where do I go from here? Over the years I have gone to two different Endocrinologists seeking answers, but because I have Hashimoto’s (Thyroid) Disease, both were convinced there was nothing else wrong. I am incredibly tired of wasting my time with doctors who are completely dismissive, and don’t take the time to look any closer than a few symptoms.

I’m turning to you, hopefully for some answers. If anyone knows of a competent doctor in the Huntersville/Charlotte, North Carolina area familiar with Cushing‘s, would you please respond?

Thanks for being here,
Xchicagoan

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Karen K, Undiagnosed Bio

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undiagnosed2

 

Hi, I’m Karen 51 yrs old, undiagnosed by a doctor, just realized all my crazy symptoms are related and have made an appointment with my doctor for next week.

I think it started in my Mid 30s with very bad acne, horrible migraines with throwing up, vertigo, high blood sugars, major depression, sleep apnea.

My symptoms over the last 12 years are hair loss on my scalp, weight gain no matter what I eat or how much I exercise all in my torso, buffalo hump and fat pads above clavicles, daytime exhaustion, insomnia, bloated feeling, edema in my legs and feet, tendonitis, arthritis and bone spurs, dehydration daily, sweating a lot during the day and at night, bruise easily, muscle weakness, depression, scary crazy mood swings with lots of screaming, no libido, red and white patchy tongue, high blood pressure and diabetes, my face gets red and hot like I’m blushing or have a bad sunburn, then goes back to normal looking, fat face, really bad heartburn everyday several times a day and before I go to bed I need to take antacids, it’s so bad I feel like I’m going to throw up. then theres the strange boil on my back that comes and goes, and the diverticulitis, and most recently a blocked salivary gland! also some back pain by my hump and side pain next to my left breast, I get so angry and I just want to cry all the time, it’s so frustrating, and I’m so so tired everyday.

I have seen doctors for most of these issues. I never thought they had anything to do with each other, I was sick a lot when I was a kid, I just thought I was someone that got sick a lot. Especially with the diabetes, I just assumed I was getting infections because of my weakened immune system and premature menopause.

I’m not sure when I got the hump but it’s in my wedding photo’s. Our 12 year anniversary is coming in January. My periods stopped right before I got married at 40, that’s also when I was diagnosed with diabetes, high blood pressure and high cholesterol, over the last 12 years my weight had gone up and down but mostly up 75 lbs. I eat better now than I ever have, plus there’s all the exercise everyday walking 3-5 miles a day on weekdays.

Recently I was switched to the U500 insulin, so my sugar readings have been great, finally after a few years of very high readings and feeling like crap, diarrhea and vomiting.

I’m so glad I found this website!

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