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Voices From the Past: Renee (rmaxwell), Undiagnosed Bio

July 8, 2026

MaryO Golden Oldies, Insulin Resistance, Other Diagnosis, Undiagnosed , , , , , , , , , , , Leave a comment

Originally posted December 5, 2008

My symptoms began when I was about 21 years old. At the time I worked as a Martial Art instructor so I was very physical and in good shape, weighing about 120lbs. Suddenly, and I do mean SUDDENLY, I gained about 60lbs or so. It was as if my clothes fit one night and then didn’t fit in the morning. The weight is mostly in the middle area. My face shape changed and I developed a second chin almost.

I also started getting some whiskers on my chin and neck. Not a lot, just a few, but it was strange.

I was under great stress at the time because I had lost both of my parents in the same year, to two different medical things. So as you can imagine, it was very difficult for me. I developed extreme fatigue, and anxiety attacks. Friends were sure all my physical and mental symptoms must be from depression over losing my folks. One friend advised I see a psychiatrist, so considering everything it sounded reasonable, and I did.

I was placed on Paxil, which caused me to gain even more weight. Since then I’ve tried so many antidepressants I can’t even begin to name them. I went through many SSRI’s, then SNRI’s, then tricyclic, and most recently as a last resort an MAOI.
But in spite of this, over the years my depression has only gotten worse. I’ve had two suicide attempts and been hospitialized a few times. My depression seems to follow a pattern or cycle, two weeks of barely being able to function, followed by a week of doing a little better, then a day or two of feeling good, then back to two weeks of misery, etc. I am not bipolar or anything like that.

I continued to gain weight, developed stretch marks on my belly and arms, got a lot of dark hair all over my belly, and the few whiskers that appeared on my chin and neck have become like a beard. I developed insulin-resistance, high cholesterol, and high blood pressure. I can seldom sleep at night. I experience such deep depression and fatigue that I haven’t been able to keep a job or finish collage, I barely function.

For many years I just thought I had really bad depression and continued trying whatever psych meds I was prescribed. I thought all my physical symptoms were my fault for being so depressed and not getting enough excercise, etc. And most of the time, I was on so much medication I didn’t really care, I was so out of it.

Finally I found a great psychiatrist who truly cares about me and wants to see me happy. After having little or no success treating my depression, fatigue, and panic attacks, she did some research and told me not long ago that she felt I must have something biological going on with me that wasn’t any type of clinical depression. She said she had tried hitting all the different receptors in my brain (seretonin, norephinepherine, dopamine, etc..) and I should have responded to something. She suggested I might have Cushing’s Syndrome. I went online to find out about Cushing’s and I was like “Wow I really match a LOT of these things!”

Now I am on quest for getting tested. It’s difficult as I do not have any health insurance. But I am making a little progress and hope I start to get some answers soon.

I either have Cushing’s syndrome, some other endocrine problem, or the most treatment-resistant depression ever.

That’s my story, thanks for reading. I’m open to any comments or advice.

-Renee

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Voices from the Past: Kali, Undiagnosed Bio

July 7, 2026

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

undiagnosed3

 

Hi Everyone,

My name is Kali, I’m 20 years old and I’ve been on this journey for a year and a half now. Before this all started I was petite 5’3″ and 123lbs at my heaviest, I was incredibly active, I played multiple sports including soccer, ringette and swimming and I worked out 4-6 times a week. I stumbled across this wonderful website last night after becoming so frustrated with the way I have been treated and bounced around from doctor to doctor. Honestly reading some of your stories is like reading my own. I’m hoping someone will be able to reach out and send some advice my way.

This all started last year when I noticed all of a sudden my regular work out routine had become extremely difficult my legs fatigued quickly and my heart started racing just walking. I went to my GP who said I was having panic attacks while walking around. I of course said this wasn’t possible and left discouraged. 3 days later I ended up in the ER due to a racing heart rate at over 180bpm while lying down.

Now fast forward 6 months, 7 rounds of blood work and 5 appointments with 2 cardiologists and everything came back normal. I was fed up. I now couldn’t even walk up a set of stairs without becoming fatigued and working out was no longer in the picture at all. I even found getting out of bed in the morning difficult. The doctors all said it was in my head, it was anxiety, I needed to push through and everything would get better. Funny thing was I used exercise to deal with my anxiety for many years and I knew this wasn’t anxiety.

I honestly ended up no where and sort of gave up. Some doctors thought it was hyperthyroidism, 1 thought Wolff-Parkinsons White but everything came back normal and they all settled on a diagnoses of anxiety and I was prescribed multiple different anti-anxiety and antidepressant medications which my stubborn self refused to take. I accepted that I couldn’t work out or run or be who I used to be and I focused on school and tried yoga, light jogging and small sessions of weight lifting instead of intense gym work outs.

Now we fast forward another 2 months or so. I started craving sugary foods, I had never had a sweet tooth before I never even used to like chocolate and all of a sudden it was all I wanted. I developed a lot of back pain between my shoulder blades and I just assumed this was all because of upcoming exams, bad posture and just life. I really shouldn’t have.

4 more months go by and I went home after school finished. My mom immediately said I had gained weight. I mean I had noticed some of my clothes were tighter but I figure I just accidentally put them in the dryer. 2 weeks later. Nothing fit. I had outgrown all of my clothes in just over a month. When I stepped on the scale I thought it was broken. I had gained over 30 pounds in less than a month. 123 – 156lbs. My face was puffy and red with acne, I had a huge hump between my shoulders. My breasts doubled in size, my stomach was huge but my arms and legs were normal. I immediately went to a new doctor recommended by a friend and she agreed something wasn’t right and sent me straight out for some bloodwork. But of course…. everything came back normal. I even did a dexamethasone suppression test which too came back normal.

I have all the trademark signs of cushings syndrome. Round red face, buffalo hump, bruising easily, unexplained weight gain primarily in the face and abdomen, purple stretch marks on breasts and thighs, muscle weakness, tired all the time, heart palpitations, increased thirst and sweating. But I cannot get a positive diagnoses to save my life. I don’t know what to do. Not 1 doctor has been able to make 2 + 2 = 4 and I’m so upset. I hate looking in the mirror, I hate waking up with 0 energy and no clothes to wear everyday. I’ve seen 3 doctors, 2 cardiologists a nurse practitioner, an endocrinologist who didn’t even give me the time of day with my normal results and I’m scheduled to see an Internist in about a week. Should I just ask him to send me for an MRI? I feel like that is my only option left.

If anyone has any suggestions of what direction I should pursue that would be much appreciated. It’s hard to fight for yourself when you’re the only one on your side.

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Voices from the Past: Wanda G, Undiagnosed Bio

July 3, 2026

MaryO Undiagnosed , , , , , , , , , 3 Comments

undiagnosed2

 

I’m 44 years old and I have always been around 130 pounds but now weigh 283.

When I was around 25 I started having joint pain and started gaining weight and that is when I first started noticing my small buffalo hump. As the years went on it started gaining more weight, irritability, couldn’t fall asleep til 3am and very tired and week all the time and doctors couldn’t find anything wrong.

After my last baby I started having chronic hives, headaches every day, body aches, muscle tightness, numbness and tingling in my left foot, hand and upper lip. Most of that finally passed or slowed down. I could keep going but but fast forward a bit.

My buffalo hump is pretty large now, all my weight is in my middle and my arms and legs are thin. With my weight as high as it is you would think they would be heavy. My face is round and solid red, few red stretch marks on my stomach, telangiectas, memory loss, concentration problems, headaches.

Three years ago for almost a year I had severe weakness in legs and arms, trouble breathing and swallowing. I was diagnosed with lupus 5 years ago and polymyositis(all of my lab has come back normal & emg on my muscles that there is no damage so I doubt this dx)

Now I don’t stay up til 3 but my usual bedtime is midnight. Sorry for rambling but there are so many things that go on with my body it’s hard to get it all out.

I would like to know if anyone in Oklahoma City area know of a endocrinologist that knows a lot about Cushings because if I have it I think I’m cyclical.

 

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Voices From the Past: Crystal T, Undiagnosed Bio

July 3, 2026

MaryO Undiagnosed , Leave a comment

Hi everyone,

I am undiagnosed currently but been having Cushing’s symptoms now over 3 years.

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Dana, Undiagnosed Bio

March 26, 2026

MaryO Undiagnosed , , , , , , Leave a comment

 

Well, I’m 29 now and still undiagnosed. If Cushing’s is what’s wrong with me, I have had it for quite a long time. I gained a lot of weight (60 lbs) the last 2 years of high school (17-18 years old). I lost 30 lbs at age 19 (I just didn’t eat much) and have since gained 70 lbs.

But, I really wonder if this all began when I was a child. However, I was tall, and Cushing’s is supposed stunt growth, so who knows. I was always the tallest kid (male or female) until about seventh grade, and ended up being 5’11”. When I started school I suddenly went from a fairly normal weight to having a giant, hanging belly with stretch marks. I remember by first grade (age 7) wondering where all this fat had come from. My parents blamed it on sitting in school all day, since I was an active child and ran around all day when I was younger, and we ate healthy meals. So, my parents put me in every sport possible: softball starting at age 6, basketball (2 teams) at age 9, soccer at about age 9, volleyball at age 12, golf at age 15. I would go on numerous diets, with the Scarsdale diet working well (high protein, very low calorie, but hard on my gallbladder), and I lost a lot with a 1500 calorie/day low-fat diet. In middle and high school, I was doing 2 hour sports practices (mostly cardio the entire time) every day, year round. I think my face has looked round since elementary school, and pictures from 2007 show a buffalo hump. I sweat more than everyone else (my Dad’s theory was that I developed more sweat glands because of all the sports).

My periods have always been irregular (starting at age 10), sometimes with 4-5 months in between, until I started birth control pills at 19 to regulate them. We figured it was because of stress or all the sports. I had fairly bad acne from about age 12-19, and since then usually still have a few zits, although now I have more body acne. My stretch marks are everywhere, along with spider veins, but the stretch marks are only pink and about 0.5-1 cm wide at their worst. Freshman year of college, I developed a cyst at the base of my tailbone the got horribly infected (I could barely walk) and it had to be surgically removed, leaving a big hole where my tissue had to grow to fill it (my surgeon told me it would take 6 weeks to heal and couldn’t understand why it took 6 months instead). I had many ear infections as a child (pink amoxicillin is yummy), and since age 20 get several sinus, ear or throat infections each year, requiring antibiotics.

Starting in middle school, I would get horrible acid reflux that would keep me up all night (in the days before all the drugs for it, so I really can’t stand Tums anymore). It went away for awhile, and then I started getting bad abdominal pain Sophomore year of college, like cramps unrelated to periods, and skipped a lot of classes because of pain and fatigue. At that point, I thought I either had mono or was severely depressed, because I was just so tired and wanted to sleep all the time. The pain went away after 6 months, but then I developed severe stabbing pain (age 24) in first my lower and then middle and upper abdomen, first diagnosed as IBS and finally after 3 years as a collapsed gallbladder. By the time it was removed, I had recurrent mono, a sinus/throat infection that required 3 rounds of antibiotics, was very fatigued and could barely walk. I still have some abdominal pain, maybe from post-gallbladder surgery syndrome or acid reflux.

I have always gotten stiff, sore muscles, which I attributed to the sports, but now I get even more stiff muscles. I also started getting joint pain in the last few years, it continues to get worse. Even in third grade the teacher noticed my extremely tense shoulders. In the last several years I have also started to become impatient, irritable, moody, and have anxiety and a quick temper (I was extremely even-tempered and calm until after college). I am also getting fuzzier mentally, with a bad memory, lack of concentration, and easily distracted, and often I just feel like I am loosing my ability to think and becoming stupid. Sorry to be so long, there are many more symptoms but you get the idea.

 

From the message boards.

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Matt, Undiagnosed Bio

March 22, 2026

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

Hello, my name is Matt. I am extremely desperate for answers as I simply do not want to live anymore in this condition. I have been suffering for years with something that I strongly believe was caused by continued use of inhaled corticosteroids (Azmacort asthma inhaler, and Fluticasone nose spray). I used these inhalers for about twenty years. 2 puffs of Azmacort every morning and every night for over 20 years.

From 1996 to 2007, I began to develop several health problems. These included severe neck pain, eye twitching, tremor, heartburn, aching teeth, vertigo attacks, peeling skin from my lips and inside my cheeks, a lower eyelid “cyst” that I had removed, an episode of thrush, depression, daily headaches, insomnia, and low energy.

In 2007, I took my inhalers and threw them out. I was trying to figure out if the inhalers were contributing to my health problems. Within months of discontinuing the use of the inhalers, a few of my symptoms went away, but most of them got worse and I developed more worsening problems- brain fog, crawling skin, constant eye pressure, a feeling of sand in my eyes under my eyelids, constant crying, strange pulling feelings in my eyes, cheeks forehead and scalp, muscle atrophy in my neck, face, and shoulders, withdrawl/hangover feelings, concentration/memory problems, suicidal tendencies.

I always assumed that the problems were caused by the inhalers and figured they would subside with time, and I still think that they may. I have always been optimistic for some reason that I am getting better, but the symptoms have still not gone away. It has been ten years now since I instantly quit the corticosteroids and like I said earlier, I am getting desperate. I have talked to dozens of doctors over the past ten years, and they ALL dismiss the idea that the inhalers caused my problem.

In fact, since my symptoms are all invisible, my MRIs are unremarkable, and my blood work is always in range, most of my doctors I am pretty sure think that I am crazy. Funny thing about that is that I have no reason to make up symptoms that I am suffering with. I have already distanced myself from all of my family and friends. I do not tell any of them how much I suffer, because it is so humiliating when people say that I am depressed, or need rest, or should cut down on stress.

In other words, nobody believes that I am truly sick. I am sure that if I killed myself tomorrow because of the pain, people would say that I was a lost soul, or lonely. I have trouble being around other people because I always feel like I need to cry and decompress. I had to resign from my teaching position because of my insomnia and lack of ability to concentrate. It was the one last thing that I loved. I tried to hang on as long as I could, but I felt that the pressure to be at work and perform well daily was not benefiting my health and probably harming it.

Anyway, here is where I stand right now–


I do seen an endocronologist. I found out years ago that my cortisol levels and most other hormones other than my testosterone are normal (my testosterone level was at 100 for God knows how long). I was shocked when I found that out. I was sure that my cortisol would be through the roof, but here is the thing– I NEVER had any blood tests done while I was taking the corticosteroids. Only years after discontinuing them.

In my opinion, my cortisol levels were elevated (or depressed) while I was on the steroids. I believe that the inhalers poisoned my body. 99% of my symptoms are in and around my mouth, neck, throat, head and eyes (right where the spray was going). I believe that my cortisol levels are normal now because I am no longer taking the inhalers and my body is making the correct amount. What happens, however, to all of the cortisol that was building up in my body if this was indeed happening?

I believe that my symptoms post-inhaler are due to my body trying to get back to normal. But ten years is a long time. I was sure that I would be better by now but I really dont know how long it takes to recover from what I did to my body with those corticosteroids. After all, I used Azmacort shortly after its inception and beyond the time that it was discontinued in the US, when I was ordering it online from the UK. There probably are not many if any people that used that inhaler as diligently and for as long as I did. I have always been thin my whole life, so I cannot say that I ever had a ton of fat on my body that would indicate Cushing’s.

In the past several years though, I have noticed that I am losing mass in my neck, face, and shoulders. My face is becoming more angular. The spot between my shoulders where a camels hump would be is becoming more and more concave. It seems like this is kind of the opposite or reverse of Cushing’s. Could this be because my body is trying to recover and slowly melting away the fat deposits on my face and neck?

Again, I am extremely desperate for answers and help. I look forward to being a part of this forum and eager to find out if anybody else out there has had a similar experience to what I have been going through. I have researched Cushing’s and other diseases for years. One thing I have never been able to find online is how long does it take to recover from Cushing’s. If I did, indeed, have Cushing’s, it would have been building up for nearly 20 years. What kind of recovery would be involved with unknowingly having Cushing’s for that long? I really need to find out if it is possible that I could still be recovering after 10 years off of the corticosteroids. I still have some faith, but that faith is definitely waning.

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Tim D (TimD), Undiagnosed Bio

March 9, 2026

MaryO Male, Undiagnosed , , Leave a comment

 

I’m going to tested and pretty sure i have it.

I don’t know what to put here except I was am glad I finally getting tested since reading stuff on the net I see I have a lot of the side effects and it sorta clears things up some,

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Elaine, Undiagnosed Bio

March 8, 2026

MaryO Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , Leave a comment

golden-oldie

 

 

 

Hi my story is so much like all the others that I have been reading on this site.

For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can’t take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.

This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!

In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.

I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH’s came back normal (2.7) but my ACTH and Cortisol is high. I don’t have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.

My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.

 

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Christine (Christine), Undiagnosed Bio

March 8, 2026

MaryO Undiagnosed , , , 1 Comment

golden-oldie

 

 

Hi my name is Christine. I am 52 yrs old and under going the first stages of the diagnosis of Cushings Syndrome

My diagnosis started back in Septmeber 2008 but unfortunatly I still don’t have a final diagnosis almost a year on.

I am at my wits end with frustration and feeling really poorly right now and know were to ask questions.

I have just returned home from a 5day stay in hospital for a midnight cortisone test. I left more frustrated than ever as the tests all went so very wrong and I may have to return and start all over again.

Can you help by answering this question…..when asleep and blood is taken at midnight……do I have to be in a deep sleep state for a result. Obviously I keep waking up and my Consultant insists I must remain in deep state sleep to confirm a diagnosis.

Please can someone help.

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Shon (Shon), Undiagnosed Bio

March 5, 2026

MaryO Diabetes, Undiagnosed , , , , , , , , , , Leave a comment

golden-oldie

 

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.

Below I’ll list my symptoms.

Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.

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