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Voices From the Past: Erin, Undiagnosed Bio

May 9, 2026

MaryO PCOS , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Hi. My name is Erin and I’m 28 years old. The first time I ever heard of Cushing’s was a couple weeks ago while doing a search for hormonal imbalance. I’ll explain why later. I am currently doing a 24 hour urine cortisol test, and thought that in between peeing in the large container, I’d share what little story I have.ufc

I have always been a normal weight and healthy, well, up until about 5 years ago. I mean, obesity was NEVER a word that had to be used to describe my weight. I’m 5’8″ and lingered around 140 lbs my entire life. I was quite the drinker, too. I started gaining weight when I was about 22 or 23, and started taking Adderol to get the weight down, and it worked like a charm. (I am currently a recovering alcoholic and have been in recovery for over a year now.)

When I started trying to get sober, I noticed little things, but mainly the weight gain. I have always had larger hips and thighs and a smaller waist, so when I began to look 6 months pregnant, I thought it was odd (and embarrasing). I have bruised very easy every since I was a teenager, but in the past few years the bruises come easier and are quite large. My acne will just not quit, and I started sprouting these thick hairs on my face, chest, and abdomen. My face has ballooned out like a pumpkin, and I don’t hardly recognize myself anymore.

In May 2012 I had a miscarriage at 12 weeks. During the pregnancy I started getting these purple stretch marks all over my thighs and hips, and since I had neve been pregnant before, decided this was normal. Before then I was having trouble getting pregnant, but just chalked it up to bad timing. After the miscarriage, I noticed my menstrual cycles were different. They had shortened from 26-27 days to 22 days, and just didn’t seem right. I started seeing my gynecologist every month, but kept getting dismissed because it hadn’t been a full year since the loss, and my hormones were probably still imbalanced. I did get them to test for PCOS, and everything came back normal, including an ultrasound, which just made me seem crazy.  I switched gyns and eventually had a hormonal blood test, which revealed very low estrogen and progesterone, and I was referred to a fertility specialist. Another blood test there revealed my ovaries are not responding very well and not secreating enough of the AMH hormone.

About a month and a half ago I decided to battle the bulge, and joined a gym and changed my diet. After 2 weeks of cardio and strenth training almost every day, I hadn’t lost a pound. Then at week 3, I finally noticed a 2 pound weight loss, but that’s when the knee pain started. For no reason at all, my knees became VERY sore, swollen, and were bruising from the inside of the joint. I saw an orthopedic who couldn’t find any evidence of injury, gave me a cortisone shot in each knee, and sent me on my way. I should also mention that a week before that I had a cortisone injection in my back for a herniated disc that was causing sciatic nerve pain.

A few days after the last set of injections in my knees, I started feeling very ill and run down. I had also just missed a period for the first time in my reproductive history, and after a negative blood pregnancy test, was told my hormones were too low for my period to start on its own. I thought I was feeling under the weather because of the missed period, so that’s when I started looking up hormonal imbalances online. When I came across the word Cushing’s, I couldn’t stop reading about it. I thought, oh my god, these people are me! They look like me! Thinking back over the years, all of these individual symptoms could be explained away due to stress, inactivity, lifestyle change, etc. But collectively, I started to see the bigger picture.

So, I am currently testing with my PCP. I am selfishly hoping that I get a quick diagnosis, or if it isn’t Cushing’s, that they find some other reason for all of these symptoms. But from what I’ve read this is going to be a long process.

Candy (cjbritton), Undiagnosed Bio

May 7, 2026

MaryO Diabetes, Hashimoto's, PCOS , , , , , , , , , , , , Leave a comment

In seeing an endocrinologist about normalizing my thyroid levels (Hashimoto’s), he became suspicious of Cushing’s.

I was diagnosed with PCOS in 2006 with a suspected onset of 13-14. We’ve done one blood test that came back further pointing to Cushing’s along with the signs & symptoms (i.e. buffalo hump, moon face, sweating, ruddy complexion, etc…). I will be seeing another endocrinologist in the near future (current one is closing his practice & moving to the Middle East) to confirm a diagnosis of Cushing’s.

If I do have Cushing’s it has to be endogenous, as I do not take any steroid mediations that are known to cause exogenous Cushing’s. I take Nasonex periodically, but not any more than I absolutely have to & I’m told that is too small a dose to be a problem.

Wish me luck in getting answers.

Cleo, Ectopic Cushing’s

May 6, 2026

MaryO Cancer, Ectopic, Other Diagnosis, PCOS , , , , , , , , , Leave a comment

Did’t we all do this?

A young woman saved her own life after successfully self-diagnosing cancer/Cushing’s that doctors had missed because she researched her own worrying symptoms on TikTok.

Cleo Lambert, from Tring in Hertfordshire, had been unknowingly living with a cancerous tumour growing behind her liver for years.

Her life started to fall apart two-and-a-half years ago when her GP was unable to provide answers to the painful symptoms she was suffering.

However, this all changed when the prospective fashion student undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s Syndrome.

The 21-year-old undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s syndrome.

Her findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside the 21-year-old.

It was surgically removed and she immediately began life-saving chemotherapy.

Due to the size of the growth, medics told her that without the operation that year, she would not have survived.

Cleo’s findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside her.

“Doctors told me the tumours are ‘usually between 3-4cm, 5cm is more serious.'”, she told the Female Lead.

“They told me that mine had likely been growing for years and there was a chance it could even be cancerous.”

“A doctor also told me I’d probably saved a year of time based on how long a Cushing’s diagnosis could typically take. I think if I’d waited another year, with the size the tumour already was, I’d be dead.”

In the two-and-a-half years prior, Cleo had suffered from painful bouts of bloating after eating and had been putting on weight.

Cleo was seeing her usually thick locks of hair thinning at a rapid rate.

GPs initially told her she had polycystic ovary syndrome, a common hormonal disorder affecting women that was not curable but manageable through lifestyle choices.

But Cleo’s health continued to decline further and new symptoms – such as irregular periods, exhaustion and unexplained bruising – left her unable to leave her own house.

Desperate to find out what was wrong with her, Cleo managed to get a endocrinologist appointment booked in, but had 12 weeks to wait until she saw them.

It was during that period that Cleo undertook some research on the social media platform and found she had Cushing’s Syndrome – a rare condition caused by prolonged exposure to the stress hormone cortisol in the body.

“I saw a video that said: ‘Do you have these symptoms?’ and it listed extra weight around the stomach, a puffy face, exhaustion, hair loss, excessive hair growth in unusual places. I was reading a checklist of my life,” Cleo told the Female Lead.

“In the comments, people mentioned something called Cushing’s syndrome. I Googled it and immediately knew: this was me.”

Cleo ended up going down a “researching rabbit hole” into a “corner of health” she had never heard of before.

Armed with a mountain of research, Cleo went to her appointment in July 2024 and presented her theory, which the doctor agreed with.

Tests showed her cortisol levels were absurdly high, measuring at 1,334 nmol/l on one measure, where the normal level is around 135 nmol/l.

But more shockingly, X-rays revealed that Cleo had a 17cm tumour, the size of an aubergine, pushing up against her stomach and growing into her liver.

Cleo’s symptoms first started appearing after she returned home from travelling around Australia in the summer of 2022.

Despite being a regular gym goer and healthy eater, she was gaining weight easily and seeing her usually thick locks of hair become a lot thinner.

After being told she had PCOS, Cleo started to make changes to her lifestyle to see it it would help.

“I blamed the contraceptive pill and stopped taking it, but nothing changed,” She said.

“The doctors told me I had PCOS which I could manage it with diet and lifestyle changes. I cut out coffee, reduced carbs, stuck to low-impact exercise.”

But Cleo’s symptoms only got worse and things started to spiral in February 2024.

“My periods were irregular, I felt exhausted all the time, and I was getting strange new symptoms,” she said.

“I was getting nosebleeds, unexplained bruising, stretch marks spread across my body, appearing even from stretching after workouts.”

Alarm bells began to sound even louder when Cleo’s freshly inked tattoo left her arm with bruising on it for weeks, something which had never happened before.

She had been hoping to start university that summer, but her rapid health decline had left her not wanting to leave the house.

“The most frustrating part was not having any answers,” she said.

“No one said I looked different except my older sister, and I appreciated her honesty.

“I was desperate for answers. I felt like I was in someone else’s body and I knew there was something wrong, but felt helpless not understanding what it was.”

But thanks to her TikTok diagnosis, Cleo’s chemo treatment finishes this month and she is hopeful of going on holiday this summer and potentially go to university this September, a year later than planned.

As well as being grateful to the helpful content regarding her symptoms, Cleo also praised TikTok for enabling her to connect with other young woman and girls who were suffering from Cushing’s Syndrome.

“TikTok has played another role in my health journey. It helped me connect with a girl who’d been through almost the exact same thing – first misdiagnosed with PCOS, then later discovering she had Cushing’s too.

“Finding people my age going through similar experiences has been incredibly reassuring.

“While the UK’s National Health Service website is helpful, nothing compares to hearing real stories from creators on TikTok who are living it.

“I’d often reach out to them directly with specific questions, and those conversations gave me reassurance that medical information alone couldn’t.

“If you’d told me everything I was about to go through, I would’ve shit myself. But going from diagnosis to operation in two months meant there was no time to overthink, which was a weird kind of blessing.

“So, if you think something is wrong, trust your gut. You know what is normal for you. Keep pushing for answers. And keep scrolling on TikTok.”

For photos see: https://www.lbc.co.uk/news/health/tiktok-saved-my-life-student-life-threatening-tumour/

Emma (emma22), Undiagnosed Bio

May 5, 2026

MaryO Hypothyroidism, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi there,

I’m not really sure where to start! I’m 22, and work full time (10-12 hour shifts) as a porter in the operating department of a city centre hospital- so i’m very very active, constantly walking/lifting/carrying on a daily basis.

I was diagnosed with chronic fatigue when i was 13 after a bout of severe flu/repeated shingles infections, and never really recovered, but i was gradually well enough to live a more or less normal teenage life. I have never struggled with my weight (a constant 9 stone at 5 foot 5), until a year ago, when i suddenly started suffering from extreme weight gain (7 stone in 10 months), fatigue, acne, mood swings, hair loss where there should be hair/hair growth where there shouldn’t be, stria, irregular periods (and when they arrive they’re incredibly heavy, buffalo hump, heat intolerance and all manner of horrible symptoms.

I’ve been diagnosed after tests and ultrasounds with PCOS and hypothyroidism, and am currently being treated with 75mg thyroxine (to be increased), and am due to start on metformin.

There’s been very little improvement in how i feel, and after a pretty horrible meeting with the endo, in which all she really did was call me fat, tell me to stop the late night trips to mcdonalds (I’M VEGAN! mcdonalds is pretty much the antichrist to us!) and refer me to the dietician. i felt really let down and all i could do was try to hold the tears in until i got back to the car.

she didn’t seem to realise that for a 22 year old woman to be feeling more like a 90 year old, is a pretty horrific experience. but i digress…

i’m due to be tested for cushings in a few days time with the low dose dexamethasone, and i know this is awful to say, but i’d jump for joy knowing what’s going on with my body at last.

although i know i have pcos and an underactive thyroid, i just know that there’s something else going on with me, and unfortunately my consultant just won’t listen to me.

my social life has disapeared, i just feel too goddam ill, not to mention my incredibly unsupportive boss, who seems to want to make my life a living hell because i’ve had to take a lot of time off work- she even screamed at me until i cried when i collapsed at work one day. i’ve actually taken to hiding in the toilets in the afternoon to have a nap, and to regroup, just so i can get through the day. never mind that i’m a 22 year old who has gained 7 stone in under a year- it’s hard to feel great about myself!!!

anyway, hopefully one day i’ll find out what’s wrong with me

this was me last year:

 

and this is me now:

quite a difference huh?! and apologie for the poor fashion sense!
anyway, wish me luck, and and my best wishes for everyone going through diagnoses/treatment for any health issues, we’ll get there in the end 🙂

Coleen (EyeRishGrl), Pituitary Bio

May 4, 2026

MaryO PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Mid-2004, at age 24 and halfway through planning my wedding, I started gaining weight. Hair started growing on my chin. Unexplained bruises started appearing on my legs. The wedding dress I had ordered in January didn’t fit, and the salon had to rush-order an extra four yards of fabric, so the seamstress could insert an extra panel in the bodice.

No matter what I did, I couldn’t lose the weight. My face became round and red, and while I had never completely outgrown my teenage acne, it got 10 times worse. Even the strongest acne drug on the market, Accutane, couldn’t make it go away. I had been taking oral birth control pills to ease PMS cramps, but when I accidentally skipped a few pills in early 2006, my period never came. My gynecologist referred me to an reproductive endocrinologist who diagnosed me with Poly-Cystic Ovarian Syndrome. My blood sugar tested high; I was pre-diabetic. Unbeknownst to me, they tested my steroid levels. They were elevated, but out of the range of normal.

In September 2006, my father was watching a local NBC news (which was a bit unusual; he normally always watched the local ABC news). The health segment was on, which he normally ignores. They were profiling a woman with a rare disease called Cushing’s. The woman had the same round, red face, and distended stomach. He called for me to come see the TV. “I think that’s what you have.”

I found a general practitioner, as I didn’t have one at the time. Prior to my first appointment, I wrote out my health history. I attached pictures of myself as I used to be (prior to getting sick, I was about 130 pounds). I listed my complaints (always tired, bruising, no period, acne, high blood sugar, depression). I brought everything with me. His response? “You don’t have that; it’s too rare.” Instead he told me I had high blood pressure (another Cushing’s symptom), gave me a prescription and told me to come back in two weeks.

He bullied me into enrolling in a study on depression and anxiety through a local teaching hospital. In order to enroll, I needed to submit a urine test. The urine test showed above-normal steroid levels, but he continued to insist I did not have Cushing’s. The study weaned me off my anti-depressant and onto an anti-psychotic. I was to slowly increase my dosage, stay there for a month, then wean off. In the meantime, I was going back to the general practitioner every two weeks for a blood pressure check (paying a co-pay every time). The general practitioner continued to diagnose me with everything ELSE under the sun, even referring me to a neurologist to rule out early-onset Parkinson’s disease. The neurologist told me that my general practitioner was an “idiot” (his words) and said, “Get thyself to a endocrinologist.” I called for an appointment, but they couldn’t fit me in for two months.

In the meantime, the anxiety/depression study had me wean off the anti-psychotic, and I relapsed so deeply into depression, I contemplated but never attempted suicide.

I brought the same health history, photos and complaints to the endocrinologist in January 2007. I didn’t even finish my “presentation” when he said, “You have the most classic case of Cushing’s I’ve ever seen.” He explained what it was, and the different causes. He explained that I was most likely facing surgery, and I would need to contact an endocrinologist at one of two hospitals in the city. I went to the one that was able to give me the earlier appointment, which turned out to be the Hospital of the University of Pennsylvania.

My first appointment was very disappointing. They wanted to run their own battery of tests, the same tests I had already completed. To be honest, I broke down and cried on the exam table. But I did their tests. I got an MRI. They were concerned that my tests showed symptoms of Cushing’s, but there was no tumor visible on the MRI. They recommended I undergo a procedure called Inferior Petrosal Sinus Sampling. It happened in May 2007. I was sedated, and a catheter was inserted into the vein near my groin. Tubes were threaded up to my brain. I was given an injection of steroids, and my body’s reaction was measured. Results indicated the tumor was on the right side. Surgery was scheduled for the end of July 2007.

On July 3rd, after coming home from a meeting with a realtor where my then-husband and I put in an offer and good-faith deposit on our first home, I passed out and fell down the stairs. My family called 9-1-1, and the EMTs transported me to a local hospital’s emergency room. They tried 12 times to take blood, but were unsuccessful. They told me I was dehydrated, and to stop taking my blood pressure medication.

Two days later, I met with the ear, nose and throat doctor who would assist in the surgery. He explained his role, and the risks of the surgery, which included death. I asked how many have died from the surgery. He said that in the years he had been assisting the neurosurgeon who’d be doing my surgery, the only patient they’d ever lost on the table had undiagnosed blood clots in his lungs.

Three days later, while at work at a university in New Jersey, I collapsed again while standing at the copy machine. I was taken to a different hospital. My family arrived and explained my condition to them. They were unfamiliar with it, and asked for my endocrinologist’s phone number to consult with him. He directed them to check my lungs for clots. Sure enough, a CT scan showed massive blood clots on both lungs — they were 80% blocked. I was admitted to the ICU. I couldn’t even roll over in bed without gasping for breath. My surgery was cancelled.

I spent 5 days in the ICU while they did ultrasounds, CT scans and other tests. They wanted to give me Tissue Plasminogin Activator, a scary clot-busting drug that carries a risk of causing internal bleeding. I requested a transfer to the hospital where I was being treated for Cushing’s. I spent another five days in the hospital there, getting more ultrasounds and CT scans. They recommended a “wait and see” approach, and I was discharged on blood thinning medication.

Several months of doctor visits followed. I saw the endocrinologist, the neurosurgeon, the pulmonologist, and the hematologist. The first two argued with the second two about when surgery would be safe. I finally got word that my surgery would occur mid-December 2007.

The surgery itself was uneventful, and a suspicious mass was removed. My steroid levels plummeted (my pituitary had stopped producing steroids while the tumor made them) and I supplemented with hydrocortisone pills. At a follow-up appointment four months later, my endocrinologist was concerned that my pituitary had not “woken up” and started producing steroids on its own again. I had to wear a Medic Alert bracelet, because my body wouldn’t be able to cope with a major injury or illness.

It took almost a year for any steroids to be detected through blood tests. But in the meantime, the weight nearly melted off. My acne went away. My period returned. My blood pressure and blood sugar returned to normal. My depression eased. My hair thickened. I was able to sleep at night without a sleep aid. I stopped the blood thinners. Once my coritsol levels returned to normal, I only went back every six months, and later once a year, for follow-ups. My endocrinologist proclaimed me cured.

I am now 32 years old. My marriage did not survive Cushing’s disease, but I’m with someone new, and we have a healthy, happy baby boy. Part of the clots calcified in my lungs, and I will always be about 10% blocked (which means I’ll never run a marathon, but hey! I never planned to, haha). As the years pass, the struggle with Cushing’s feels like it happened to someone else.

Sabrena (Sabrena), Undiagnosed Bio

May 4, 2026

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

Hii my name is Sabrena and i am only 16 years old,

i realised i had all the symptoms of Cushings disease about a week ago. I started seeing the fact that i am constantly gaining weight, i went to see my doctor and i told her about it i told her i had all the symptoms of CD and i am constantly gaining weight each day i have stretch marks on my abodmen, my arms and back too, my periods dont come for about 3month sometimes more/ or less.

My doctor said she doesnt think i have CD because my face is Oval not Moon,

is this TRUE can someone not have cushing’s disease just because their face is Oval,

someone Help please as i have had these symptoms for a long time, and my doctor is putting aside the fact that it might be CD because i dont have a moon face she thinks it might be PCOS instead.

The problem is that PCOS doesnt cause weight gain and i am a person with a very small appetite and i am constantly gaining weight plus i already have the buffalo hump too.

My doctor still send me for a blood test but i am not sure whether that is enough to prove that i have Cushing’s disease.

HELP!!

Jessica (JessicaAnn), Undiagnosed Bio

May 4, 2026

MaryO Hypothyroidism, Insulin Resistance, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

I’ve been struggling with a lot of health issues for a really long time now, and so far I have been diagnosed with multiple different things only to have the next doctor say the previous one was wrong.  None of them have yet to be able to explain why I am physically in pain over stupidly simple things like doing laundry, cooking, cleaning, etc.

I recently got tested for Cushing’s because my current doctor thought that might be it, and I was certain I did as well based on how much it sounded like me.  However, my 24 hour urine test came back normal.  So now I’m back to where I started, with no answers and losing hope that I’ll ever find out what’s wrong with me.

 

I have previously been diagnosed with the following:

ADHD – 2005

Insulin Resistence – 2005 (later told that was incorrect)

Depression – 2005 (though it started long before then)

Migraines – 2010 (they started when I was in high school, though, so roughly 2001)

Hypothyroidism – 2010 (I was laster told my thyroid looked fine, though I’m on Synthroid)

PCOS – 2011

Fibrocystic Breasts – 2012 (No tests were done, and I’m fairly certain this is incorrect)

Vitamin D Deficiency – 2012

Vitamin B-12 Deficiency – 2012 (probably caused by spironalactone since it apparently causes that)

 

Both the PCOS and Fibrocystic Breasts diagnoses were made without the presence of cysts, though my ovaries are enlarged.

 

My symptoms have included:

 

Headaches

Migraines

Irregular Periods

Severe Menstrual Cramps

Severe Acne

Oily Skin

Heavy Periods

Fatigue

Difficulty falling asleep (I average about 3 hours per night)

Difficulty staying asleep

Weight Gain (started when I was doing 30 minutes of cardio + 30 minutes of weights every day plus watched everything I ate.  I still to crossfit several times a week and watch what I eat)

Hair Growth (upper lip, stomach, neck, chin)

Nipple Discharge

Skin discoloration (neck, under arms, under breasts, elbows, inner thighs)

High Blood Pressure

Fast Heart Rate

Constant Phlegm in my throat (has been there for years and never gets better/only gets worse when I get the flu)

Hoarse by the end of the day/night

Deepened Voice

Difficulty Concentrating

Forgetful

Large Pink Stretch Marks on waist

Lack of period (started about a year ago)

Back pain from doing simple things (has progressively gotten worse/included my hips, neck, and left shoulder)

Nosebleeds for seemingly no reason (most often in the bath tub/shower, sometimes just happens while driving, walking, doing nothing that should cause them)

Depression

Loss of appetite (I usually force myself to eat light meals at work just in case I end up hungry at some stupid time like 4:00 PM)

Nausea (literally almost every day)

Diarrhea (usually after eating)

Often Stressed Out

Irritability

Buffalo Hump

Round face (I actually have pictures of me when I weighed less than in previous ones, but my face was horrible round in the ones where I weighed less)

 

More than anything, I care about getting the back pain, migraines, and sleep issues fixed because that’s what affects my life the most.  One thing I noticed with the exercise is I’ve been able to build muscle in my legs and arms, but there’s been no change to my stomach, and I have dropped no weight/inches off of any of my body (since I know muscle will add pounds).  I have been to numerous doctors, including several Endocrinologists, one internest, a rheumatologist, a breast specialist, and several gynocologists to get things fixed.  All of my symptoms have progressively gotten worse over the years, and I’m just worried with the amount of pain I’m end that I’m one day not even going to be able to walk.  I’m at peace that whatever it is could eventually kill me, but I at least want to know why it’s happening before it does.

 

So far the only lab work I’ve gotten that showed anything was my Vitamin D and B-12 levels were low, and my Testosterone was high.  My doctor said this would not cause the back pain, though.  I just don’t understand how I can have all of these issues at 28 years old to constantly be told there’s nothing wrong with me to cause the back pain.  I have had no trauma that would have caused it (like a wreck or something), so I know this isn’t normal.

 

If anyone has any suggestions on any other tests I can do/possible causes, I would be extremely grateful.

 

Thank you for taking the time to read this.

Teresa G (HB), Pituitary Bio

March 7, 2026

MaryO Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , Leave a comment

pituitary-location

 

I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.

About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!

Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.

I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.

First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.

I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.

All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.

That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.

In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.

My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.

I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.

I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.

Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.

The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!

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Erica (Ericaop), Undiagnosed Bio

February 28, 2026

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

golden-oldie

 

I am 33 years old and at the age of 17 I had a sudden onset of weight gain during my senior year of high school. I was a size 8 and graduated wearing a size 18. My weight was mainly in my face and my stomach. My legs were small so my pants would be big in the leg but I needed a large waistline. I began taking birth control & thought it was a side effect from that.

I stopped having my period completely when I went to college & doctors said it was stress & I just needed to diet & excercise. I never ate alot and was a normal active teen. over the last 15 years I have been treated for blood pressure, water retention, high cholesterol and symptoms of PCOS.

In 2003 I was sent to an endocrinologist for suspected metabollic syndrome (syndrome X) that was ruled out & after an ultrasound of my thyroid I was told I had an enlarged thyroid & was treated for hypothyroidism. I quit my job & moved to another city to return to college loosing my health insurance & so I was back at the University health center. Blood tests showed my TSH levels & malehormone levels to be fine so they would not continue to treat me for the thyroid issue. Just cholesterol & sent me to a nutritionist.

After graduating & moving to GA, I went to see a new doctor and went through my history to be told the same, my levels are normal. Because my insurance does not require a referral & knowing I had a previous diagnosis of hypothyroidism I scheduled an appointment with an endocrinologist. My firstvisit wasn’t with him but with his PA in which I went over my long drawn out history. Blood work was done & upon seeing him on the second visit I was told the same, my levels are normal & I havehigh cholesterol so he treated me for that. It wasn’t until I stressed to him that I had been on cholesterol medication until the previous endocrinolgist did the ultrasound and took me off of it & said the thyroid medication would take care of it that he said he would send me for an ultrasound. The ultrasound revealed small nodules, that were not there in 2003, but he says are too smallto be concerned with & he will check them in 6 months to see if they have grown, other than that I’m fine. I know this is not the case. I watch what I eat, I excercise for 2 hours 5 to 6 days a week & cannot loose any weight. I am frustrated & am noticing increases bouts of depression where I can’t control my emotions one day & the next I’m fine. I am always exhausted, and after excercising I need a nap, I thought excercise was supposed to give you energy.

I was just about to give up & begin to reconcile that its just me & I’m crazy as the doctors want me to think until two weeks ago I saw an episode of TLC’s Mystery Diagnosis where this woman was basically telling my story of the sudden weight gain & other symptoms & how she basically self diagnosed herself with Cushing’s Syndrome & went to an endocrinologist who confirmed it & she had surgery to remove a tumor. When I heard this, I knew this had to be it, but am wondering why my endocrinologist never mentioned this disease or tested me for it. I really do not like his lack of concern and care so I called another office to schedule an appointment which I cannot get until September 1st.

After doing further research I decided I really want to see someone who is knowledgeable about Cushing’s so I found the Pituitary center at Emory University hospital in Atlanta. I called today for an appointment & was asked my diagnosis. I told her I don’t have one yet, I was seeking a consultation for a diagnosis of suspected Cushings. She asked who my doctor was and about MRI results. I told her I haven’t had an MRI and that my doctor never did a cortisol test or any urine tests just only non fasting blood work. She told me to have my labs sent to them & that they would review them & call me to schedule an appointment. I faxed both my regular doctor & my endocrinologist a request for my records to be sent to this lady’s attention. I am scared that my labs will not show anything to warrant an appointment & I don’t know where to go from here.

I don’t have the money or time I feel to continue to wait months for an appointment to get an accurate diagnosis.

Does anyone out there have any suggestions on what I should do?

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Mandy, Undiagnosed Bio

February 18, 2026

MaryO Fibromyalgia, Golden Oldies, Other Diagnosis, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

 

Originally from July 19, 2008

AMANDA M JUNE 2008 – INVESTIGATIONS

Hi, This is my document,which I have sent to the doctors, I thought I’d add it as my bio..

FEB 2005 Constipation, Craving for starchy food, Blocked nose right side and change in shape of right side of nose – flattened cartilage.

END OF AUGUST 2005
Large cyst in left side vulva, 2 x two weeks antibiotics wasn’t resolved operation to drain the cyst.

SEPTEMBER 2005
Swelling of stomach after operation, went to doctors thought IBS was given Fibre gel, stomach distended couldn’t go to the toilet for 10 days a lot of pain and a big thick blistering rash at base of spine.

Nurses visited to give enemas wouldn’t work a lot of pain they refused to continue. A&E – X-rayed showed Impacted faeces , given Movicol which worked, told to eat lots of fruit and veg. Did as advised became impacted again.

Ultra sound of ovaries and Stomach – Couldn’t see as fizzing from laxatives.

OCTOBER / NOVEMBER 2005
Doctor referred to Gastro Doctor McStay – Scheduled for Endocopsy – Confirmed Hiatus Hernia

December 2005 / 2006
New Years eve very down and ill with continuous impaction and other symptoms. Friend said to stay at hers and not to stay on my own as it was New Years Eve. Had a few drinks of rum. Early hours of the morning went to bathroom started sweating – collapsed – came to briefly and was on the floor couldn’t control body – friend came in I was having a fit – had cut my mouth and nose. Went A&E new Years day, they said must have been a one off.

January 2006
Sindosopy – Minor inflammation, slow bowel

Follow up Dr. McStay – Advised to take Mil Par for rest of life

February 2006
Symptoms worse very distressed had spoken to PALS previously as felt so ill to wait for appointments and hadn’t been advised what to do next. I had a phone call from a lady at PALS at home she advised me to see A homeopath and said I had Candida from all antibiotics and gave me contact information for a lady to go and see. I Looked up Candida Diet on the internet and started the diet and also went to my doctors at Southchurch Boulevard and asked for an antifungal. He gave me the tablets and I felt really good whilst on them and on the diet but stopped when I didn’t have anymore tablets left.

March 2006
Homeopath (details given to me by PALS) – said I had systemic Candida and low in vitamin’s and took foods out of my diet intolerances and I started being able to go to the toilet a bit better and felt a bit better as month went on. Although always have a swollen stomach, much improved with diet. Also, the ryvita that I was allowed to eat affected my stomach.

Could only eat plain rice, potato, lean meat, Fish. If I ate wrong food I was ill some times I had bad nausea aswell as distension and constipation and other symptoms. If I ate fat I would have nausea and pain in my right back.

I also started getting a lump in my lip which turned into about 10 blisters and the blisters have gone but the lumps is always there and dries out all the time and it sometimes turns into blisters but never goes.

OCTOBER 2006
Homeopath said I should be okay and to introduce foods I did this and became ill. She advised me that I must have an underlying condition, which is why it wont go and said to go back to doctors.

December 2007
I was very low as I thought I was getting better and kept eating foods which made me ill as I was depressed over Christmas. Then I went to a new Doctor at Cluny Square and explained what was happening. He said possibility of Celiac I had blood tests but not biopsy and the diet was pretty much a Celiac diet. The doctor to have me sent back to Gastro and he will try and help me with investigations.

I went back on the diet. I had also applied for a new career at the NHS as a Trainee Radiotherapist previously as I thought I was getting better and I was given the job which started in February 2007.

March 2007
Dr. Mcstay – said I’d been tested for Celiac but not had biopsy agreed to do tests but said I would have to eat for 5 weeks for biopsy as been doing the diet. They said if I had been on the diet that long I may of healed my gut. I was still trying to eat low carb whilst doing the challenge so ate low carb ( I don’t know if maybe I didn’t eat enough in the 5 weeks to do the damage for celiac.

I started the eating gluten also stopped the Birth Control Pill as I felt too ill to go and get my next pack and thought it may help if I had a break. I had previously been off the pill a few years back and didn’t have a period for 1.5 years and just went back on it.

I was signed off work as too ill for the whole 5 weeks. My symptoms were much worse this time during the eating for the test. Also doctor said my thyroid was a bit low.

APRIL / MAY 2007
I returned to work had been back on my diet for a week – My results came through and it tested negative for celiac. I was very stressed as I still didn’t know what was wrong.

I spoke to a dietitn at work and she agreed to try and help – she put me on a anti yeast diet (still eating wheat etc )and said to ask for antifungal from doctor but doctor couldn’t give me a very long course it didn’t make much difference. She then advised me to eat normally maybe I was malnourished from diet and I just got worse and worse and my skin had started changing like it was dehydrated, shrivelled up like crepe paper and thin. I was eating chocolate as was down and was very nauseous after but felt like giving up as was so ill so kept eating wrong foods .

JUNE 2007
I was very ill eating foods that made me ill. Still off the pill. There had been stress at my family my Dad had left. I left work early as stomach hurt and was very nauseous went home and decided to try a antidepressant 20 mg Prozac on the Friday. There was a big row with Parents on the Saturday, I wasn’t really with it as on the tablets. On the Sunday night I woke up with a very bad headache like pressure in my head and nose I felt very strange I don’t know what happened but I wasn’t with it at all.

My face, neck, arm, back of hamstring around my bottom on the right side had changed. I had bad dioreah for a good week may be it was the shock – I lost quite a few pounds very fast as everything went straight through me. My skin Pale, clammy.

On the Monday I saw Dr. Palacian who advised me to stop the tablets I may have had a reaction (HE SAID I COULD STILL BE CELIAC). I became a lot more anxious and depressed following this as I was scared of what had happened and my family were caught up in there problems and didn’t realise what was going on. I couldn’t stand being at home as was getting panic attacks as it happened in my house so I stayed with my Nan. She was very shocked as I was so thin, I had a black mark down my right side of face a rash also on my face which she has a photo of .

JULY 2007
Occupational health referred me to Physiatrist and I explained what had happened. She advised me I didn’t have a mental problem although I was depressed due to what was happening. She advised me to see Endocrine and Dermatology as she said the mark across my face was a sign of autoimmune disease.

I was desperate to get better and back to work so I borrowed money to private to endocrine. I had blood tests and then after was followed up at southend hospital and the specialist said he had spoken to doctor Adey and I was depressed and nothing on the blood tests.

I then requested an Ultra sound as I had read about PCOS and it did show cysts on both ovaries but nothing on the blood tests prior to this.

(Previous doctor) Dr. Adey said I may have lock jaw but no one said anything about my neck or other limb problems.

DR.MARVRA
I decided to pay to go to a Neurologist as I was so desperate and knew Bells Palsy doesn’t affect one side of my body. I did think I had a stroke. Neurologist advised I needed Pituitary MRI, Parathyroid and various other tests. She said my reflexes were absent and told me to stop doing the diet as it may affect the testing but I couldn’t function without this diet. ( I had been eating wheat etc running up to seeing Dr. Marvra)

AUGUST 2007
Nerve Conduction Test – Normal – was on diet

Follow UP SEPTEMBER 2007
Dr. Banister -Neurology

I had to explain again from the start – I had been on the diet again and this time had reflexes. She said probably a bit of bells palsy, didn’t know what was wrong with my neck or limbs on right side. She also to refer me to Charring Cross for Fibromylagia but Doctor Adey wouldn’t refer me. She sent me to a Physio for bells palsy but it didn’t help.

SEPTEMBER 2007
Dermatology – Basildon Hospital I didn’t get to explain anything he quickly examined me and said no cancer and sent me on my way.

OCTOBER 2007
I became very depressed scared suicidal and was admitted to Basildon Hospital for one night and then referred to Taylor Centre. I tried to work with them as I know I am depressed and I am still down but not suicidal now. I was too scared to take antidepressant they wanted me to take as I was previously advised I could have had a reaction to the tablet and didn’t want anything else to happen. I tried the antidepressant Effofor, but it made my anxiety very bad and I was worried about what happened last time so I stopped it.

NOVEMBER 2007
Referred to Gene for PCOS – I was still very emotional as ill, kept eating foods as depressed, and very upset about my face neck and right side as not been diagnosed. I didn’t communicate very well with GYNE because of the state I was in. I asked about Metiformin as I had read this is to do with PCOS but was advised I had to be very fat or want to have a baby. No periods for the last 6 months.

I saw Occupational Health again and was advised to change doctors. I had asked Doctor Adey many times to refer me to chronic fatigue and did receive a letter confirming that he would but he never followed it up. So I decided to change doctors as I was getting worse and was closer to loosing my new job and felt even worse than before.

JANUARY 2008
Dr. Syed agreed to start from scratch and sent me for blood tests which showed high cholesterol. I was much more positive again. I also decided to see a chiropractioner as my neck was hurting all the time cant hold my head up properly and my bottom / leg was flat when I walked and ached with any resistance walking.

Chiropractioner said I had a wry neck, facial drooping, and weakness and said I should have a brain scan and also mentioned Carotid Arteries but he wouldn’t touch me he said something going on may be neurological. He wrote me a letter to take to dr. Syed. It also mentioned having a breast examination as I have implants and the right side has shrunk and aches when I lay on that side.

Dr. Syed referred for all Specialists.

Breast Ultra sound – implant looked fine but change in fat in breast, shrunk on right side and skin droopy.

Neurologist – Referred – back to Dr. Marvra

Dr. Marvra had the letter and it did say I was misdiagnosed with Bells Palsy – I didn’t get to explain anything Dr. Marvra said I don’t need brain scan you have too many symptoms which don’t relate to my department but she said she would send me to a Rheumatologist.

APRIL 2008
I was referred to Dr. Nuduka – Facial Reconstruction Surgeon for Bells Palsy only Specialist in the UK. He said he doesn’t think it was Bells Palsy and mentioned having a EEG but this was not mentioned to Dr. Syed in the letter.

APRIL 2008
Dentist couldn’t perform root canal as couldn’t open my mouth wide enough – x-rayed my jaw and said its in a spasm – sent me to Oral Surgeon

Dr. Sha Oral surgery
He was very nice and asked about my other symptoms. He said it sounds like you have a few things going on, which is why so many symptoms he said he wanted me to have a brain scan and some blood tests.

I was able to tell him every symptom, which I felt stupid telling other consultants. He said I don’t have bells palsy, I have facial, neck and limb weakness and it will get better. He also said I have some TMJ and gave me some 10 mg of Nortipline to help me sleep as my mouth is in shreds from biting gums. He said he will make me a gum shield. He tried to run a tests for (cushings syndrome / possibly food induced) as he said my skin has atrophied and is thin and fragile with bruising along with other relevant symptoms.

Follow up with Dr. Sha – My brain scan showed a cyst in the right side of my sinus in the area of the facial weakness he didn’t think this was the cause of my right sided weakness. Dr. Sha ordered blood tests for Cortisol to investigate Cushing’s Syndrome but the Sythechen test couldn’t be performed as it had to be requested via Endocrine.

Dr. Sha said he needs me to have a second opinion but I must tell the Consultant everything I told him as it was all important.

Rheumatology
This consultant was running an hour late I wasn’t allowed to explain anything. The consultant just said I am a Rheumatologist have you any swollen joints. The consultant couldn’t explain my neck and said about physo but I had tried this and it never has got better. A nurse came in asking about my periods due to results of urine sample but she was told to leave, I never heard anymore about that. I was upset and the reception said its probably as she is running late in her clinic.

Follow Up Oral Surgery
I then had my Follow up in Oral Surgery with a Consultant. My Dad came with me. There was nurses and doctors in and out of the room using the photocopier which was very off putting and I didn’t feel like the consultant had much time as he said to keep it short. He didn’t acknowledge my facial weakness or my neck and he said I am not saying nothing wrong but I don’t know what’s wrong. They didn’t carry out the Cushing Test.

JUNE 2008
I am currently being referred to a specialist in the Parry Romberg Syndrome, which I stumbled across whilst trying to help my self. I wrote to the specialist after contacting the PRS support group. He agreed to see me based on my symptoms and Cathy Rehill at my doctors has organised this referral.

I am struggling with the constant awkward feeling of my neck as it has no strength on the right side, I cant lift anything above my head as it locks into a more rigid spasm and also affects my shoulder.

I am back on the celiac diet as I ant function otherwise due to the many symptoms I get. I am struggling with the diet as I have other intolerances other than the celiac diet, sugar, yeast, dairy, fermented foods. I do have a letter from Mary McStay confirming that you can only have systemic Candida if you have an celiac, or other autoimmune disease and if immune compromised.

I am naturally worried about the diet I am doing as fruit is very important with diet but I then suffer the faecal impaction. I am now also concerned that maybe where I have been on and off the diet it has affected the tests that I have had but I can feel that I am damaging my body further every time I eat the foods that affect me. It is very difficult to stick to such a rigid diet especially when I am struggling to get around some days and have difficulty getting to supermarkets.

I am very upset about the affect this illness has had on my appearance, my skin is so dry dehydrated, loss of skin elasticity, facial drooping, twisted neck, hollow eye, wasting on nose, general loss of muscle tone all over , flattened buttocks, bloating all the time. I am hoping this will improve once I know what’s wrong and when I am treated.

The palms of my hands keep shrivelling up, drying out and going tight and then the skin flakes on and off throughout every day and this is really worrying me also. Along with the pain in the right side of my back. My skin has got so thin that when I rest my elbows on a table for a couple of minutes they really hurt and go bright red and look like I’ve fallen over. I have marks on my arms which are months old from blood tests, spots and cuts that don’t heal.

I also just went back to the ladies clinic for a second biopsy as they found HPV virus last year. They advised me that I still have this infection and normally the body gets rid of it but my immune system must be compromised as its still there. I have got to go back in 6 months for another check up.

When I eat wrong I have also noticed that my body seems to be swollen like I have water retention and my face and eyes are very puffy. I can also feel the weakness / wasting a lot more if I’ve eaten wrong. I have no quality of life, I don’t go anywhere as don’t feel up to it or due to restricted diet and not able to drink alcohol, I cant go to the gym like I did due to the weakness or wasting in my right leg neck and arm. Fatigued and never feel well, I have no libido or sensitivity at all and I still have no period.

My Parents are now being very supportive as they are concerned about my health and recent deterioration, which has given me the strength to try and stay positive that I will get to the bottom of this. I do appreciate the help I have had from doctors and specialists but it is frustrating as I seem to have a complex illness or maybe something rare, which is making this difficult to diagnose. I have been very patient and I have done everything I’ve been advised to do but this has gone on to long and I cant live like this much longer.

Thank you for support and for reading this document. I hope it makes it easier to understand what’s going on and why I am so upset when I visit the doctor.

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