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Kristi (kingskid), Undiagnosed Bio

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Hi my name is Kristi and I’m seeking any help or advice on Cushings.

I had always been active growing up into sports, running, weight lifting and horseback riding.

27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy.  Less then a year later I was carrying my second daughter.  I had no appetite and could barely eat but was gaining 10 pds every other day.  My blood pressure soared and I was diagnosed with pre-eclampsia.  I have been sick ever since I gave birth.

In the past 20yrs I have put on over 150 lbs and I can’t get it off.  I was told I had a fatty liver and my cholesterol and triglicerites are off the chart.  I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/   I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping.  Get cyst on my breast, head, ears and pubic area.  Have little hard bumps on pubic area that never go away.  No sex drive left for husband and even when we are active it’s very painful..  Major swelling in face, neck, legs and feet, backaches, headaches.  When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair.  I sweat even in winter.  I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast,  behind neck and arm pits.

Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit.  My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery.  It has been 5 months and I still can’t heal.  Have been packing the wound every day and seeing the surgeon every 2 wks.  Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.

Today I recieved a call that the urine test I took for cushings came back with normal levels.  Needless to say I sat down and sobbed.  I am 46 yrs old and I have been sick for half my life.  I have seen so may doctors, been through so many surgeries and painful testings.  I have been told over and over that there is something wrong but the Doctors can’t find it.  I thought cushings was the answer and that I could finally get treatment and get better.  I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers?  Where will I get the strength?

Jarryd (Medboy), Pituitary Bio

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I’m a 19 year old male student with Cushing’s syndrome. Basically had accelerated weight gain since late 2011, despite frequent exercise and heavy dieting.

Started to feel a lot more irritable and tired, lost strength at the gym, developed big unsightly purple stretch marks across my abdomen

Initially my doctor just told me that I was getting fat and should do more cardio/eat less. She even commented on how it showed quickly in my face (mild moon facies)

It was entirely reasonable for her to think this, but when the stretch marks didn’t fade as they normally would i did a google search and returned.

Urine test, blood ACTH and cortisol test, repeat urine test. Soon I was sent to an endocrinologist who confirmed Cushing’s syndrome.

I just had an MRI of my pituitary after the ACTH signs pointed to a pituitary source. The Endocrinologist said it appeared to have a 3mm lesion, but it was not 100% conclusive so I am to undergo petrosal sinus sampling for confirmation within the month. Hopefully that will confirm the adenoma with surgery ideally soon after that.

I’m happy to have got it reasonably early; most of my symptoms are still relatively mild, but it really does make you put other things on hold until you can fix it, which means i’m sort of stuck in a lull until its all fixed. I would appreciate any advice for things to do in the mean time to help me feel like i’m doing something positive rather than just waiting.

Location of the pituitary gland in the human brain

Location of the pituitary gland in the human brain (Photo credit: Wikipedia)

Grace (Grace), Undiagnosed Bio

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Hi Everyone

I suspect I may have cushing’s syndrome or disease but all I know for sure is I’m sick, I don’t know what’s wrong with me……..and I want to get better.

I just turned 25 in March but looking back i think i’ve been showing symptoms for the last 13 years.

At the age of 13 over the school holidays I gained a bunch of weight (14 kg in a month and a half) and since then my weight just keeps climbing up. I also became lethargic, depressed, unmmotivated, struggled with my concentration and continue to do so. The  stretch marks followed the weight gain.  I definitely have a really round face, which I guess could be moon face. My face gets really red and flushed. I have very little body hair but its quite strange that i have hair growth on the lower part of my fingers and toes. I have a significant amount of foot pain especially when I get up in the mornings. I have lower back pain too. I wouldn’t say my periods are highly  irregular but they are often off from my usual 28 day cycle by about 5 to 14 days. This is becoming a more frequent occurrence.  My skin is really thin, soft and doesn’t heal well. Small cuts and bruises take longer than usual to heal and almost always leave scars. I feel hungry and tired all the time.

The depression and fatigue is by far the most debilitating of all the symptoms I have suffered from. My grades in school and later on University have steadily dropped since the age of 13. I find it really hard to concentrate. It was only when I began failing in uni that my parents finally allowed me to see a doctor who was a psychiatrist in 2009.

I had an abnormal EEG showing evidence of seizures. The evidence was not sufficient enough to diagnose me with epilepsy but he called it seizure equivalent depressson. I was then put on heavy rounds of anti-depressants and anti-convulsants which kept on being adjusted. Different dosages and combinations would work for awhile then stop so that meant  more combinations, stronger drugs and higher dosages. To cut a long story short I finally quit the meds in Dec 2011 and began to see a new psychiatrist in May 2012 who ordered blood tests, a thyroid test, sleep-deprived EEG and an MRI.

My blood sugar and cholestrol is normal but heading towards the high range which worries me but not suprising given that I’m obese. The EEG again showed slight evidence of seizures but when I was referred to a neurologist he said I show no evidence of seizures and that normal people have abnormal EEGs all the time(?????) This is despite a history of epilepsy on my Dad’s side of the family. What about non-convulsive seizures-could this explain the lack of poor concentration?

The MRI came out normal, only showed that I  suffer from chronic sinusitis. But then again it wasn’t done by a specialist in the diagnosis of pituitary tumours and they most definitely were not looking for one so if there is a microadenoma, its flown under the radar. The blood tests showed I have a low white blood cell count (neutrophils and monocytes). My cortisol level was normal but then again it wasn’t a 24-hour cortisol test.

From my own research I found that chronic sinusitis could be linked to the depression but my Psychiatrist seemed to be unwilling to explore these leads any further and advised me to stop researching so much online. At the same time he put me a new round of anti-depressants and anti-convulsants which left me feeling weak, tired and drained. For the first two weeks I slept all day and could barely get out of bed. I quit these too in September 2012 and since them haven’t seen any doctors but symptoms remain and its a struggle to live with them every day.

I am still financially dependent on my parents who are tired of my constant “depression” which they feel is an attitude problem so I don’t even speak about it with them any more. They feel I should just try harder. I hope to graduate from  Uni this year but due to my health problems I’m  3 years behind and my grades have suffered. I have health insurance which makes it very difficult to get referrals to specialists and they hardly covers pre-exisitng conditions. All treatment described above was paid for by my parents and not health insurance. They are retired now and don’t want to spend a ton of money they don’t necessarily have, looking for a phantom condition. I understand their point  of view but I feel if I had a child I would do all I could to help them get better.

The more time that passes the more difficult it becomes and the more paralysed I feel. I have a part time internship at a law firm that is even becoming too much now. I can barely study. I’ve lost almost all my friends either because I isolate myself or am too tired and depressed to be there for them like a good friend should.

As of March 2013 I went to see a gynacologist about my irregular periods he ordered another thyroid test, prolactin test and a Pelvic scan so i’ll see how that goes….maybe its PCOS.

Anyway I have no one to talk to . I don’t know what to do next. I wonder if anyone else has been/is in a similar position.

Thanks for listening

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Jennifer (jennifer), Undiagnosed Bio

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i am not sure that i have cushings yet, as i have just made my first appointment to discuss this with my dr.

I first noticed a small hump on my back about a year ago, but just assumed it was poor posture. (yes, i tend to slouch a lot).But, i have been gaining weight steadily, despite weight watchers, low carb diets, trying to exercise regularly (difficult when you are so tired you can hardly get off the couch) (i assumed this was due to depression). i’ve gained about 40 pounds over the past  year. I realize this doesnt sound like a lot , when some people with this disease gain that in a couple of months, but ive always been able to lose really easily.

I dont have stretch marks either, but i have so many other side effects listed (the buffalo hump it seems distinguishes this from a lot of other things. im really scared that ill have this disease, but on the other hand, at least i’d know what is happening to me. I just cant get a hold on my own body. its so awful.

I dont know who to ask, but is there any other disease that has similar symptoms AND a hump?

Voices From the Past: Jane (tiggy2166), Undiagnosed Bio

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Hello all,

I’ve been looking at this board for a little while as my 17 year old daughter developed a buffalo hump last November. She’s not overweight at all but does carry a lot more weight than the rest of our family around her middle and chest. She’s a different build entirely. Her arms, legs and hips are relatively skinny in comparison to her mid section, though she does have very long legs so perhaps that’s natural too.  She’s tried to tone up but the weight does not come off easily.

The hump looks weird! It sticks out a lot. Her neck used to be flat/straight down. I’ve looked at old photos to compare.

I have 3 other children, a 21 year old son who recently discovered he has fused cervical vertebrae in his neck which has been the source of his pain for the past few years (there since birth apparently), a 14 year old daughter who is healthy and a 12 year old son who was diagnosed with Leukaemia last August (he’s doing very well)

My daughter’s been referred to a plastic surgeon for hump removal since it causes her pain and looks ugly. At first we were told it was a lipoma, nothing to worry about, but the plastic surgeon wanted to check with a senior doctor since it was not just a lipoma but a buffalo hump. I’m waiting for an appointment to hear the outcome of her enquiry to the senior doctor but I spoke to her secretary the other day and apparently they are not worried about it. An MRI has shown that it is indeed a fatty lump.

She’s had no blood tests or any tests at all. She does not take any kind of steroid medication.

Her symptoms are:

the hump

daily headaches

severe anxiety

occasional exhaustion

occasional throbbing/aching in or around the hump

weight gain around her stomach/chest

 

She does not have:

thinning skin

stretch marks

excessive thirst

excessive hairyness

 

I’m worried since two of my other children have recently been diagnosed with quite rare conditions. Normally I would say the chances are that it’s a fattty lump that just happened to appear there, liposuction it off, job done. However the odds have not been in my favour this past year! What if she does have a tumour somewhere? that’s my worry and things are moving too slowly for my liking. Next appt with plastic surgeon is 24th April.

I will post some photos of her and maybe some of you can tell me what you think. I can’t see any fat pads at the front but I’m not entirely sure what I’m looking for.

I’ve made an appt with my GP for 21st March to ask him to refer her for tests.

Thanks for reading my bio!

Renee (Renee), Pituitary Bio

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pituitary-location

I am really not sure where to start! I have struggled with medical issues my entire life. I am 25 born with many anomalies–bladder, cleft lip/cleft palate, dilated aorta, hydronephrosis…the list really goes on and on. Thankfully, I have had great doctors and everything is under control until recently.

I had my first appointment with my new endocrinologist. She listened to my history that I highlighted for her and she actually took the time to *think* about me and all of my little medical issues. It was great to see her brain trying to piece things together. When she was doing my exam, she gently touched my shoulders and made a comment that my shoulders were holding a lot of weight. I said that I’ve noticed and that it makes me feel that I look like a football player. She told me that it isn’t that bad, but then asked me if I have stretch marks on my body. I told her that I do and that I’ve actually noticed that they are getting worse and deeper than usual. She looked at my belly and she said that she wants to get my checked for Cushings Syndrome.

She asked if I was on any steroids, and I am not, but I did have a pituitary cyst in 2008 that was surgically drained (specifically a Rathke’s Cleft Cyst). From what I’ve learned, whenever a doctor works near the pituitary there is a risk that hormones will be effected. This may be what is happening to me.

Last April 2012, I was also diagnosed with a pseudotumor cerebri. It is basically under control and I am on Diamox for it. These are my symptoms for why I really think I have cushings:

» Extreme weight gain

» Moodiness, irritability, or depression

» Muscle weakness– my leg muscles get tired very easily, even just walking a few blocks. It feels like I have shin splints, at times!

» Hypertension–possibly, but undetected because  of I am on meds for other heart anomalies.

» Immune suppression– a possible reason why I got pertussis (whooping cough) during the end of 2012 even after being given the vaccine

» Hirsutism–embarassing, but true

» Hypercholesterolemia–to the point that I am on a medication for it

» stretch marks

» “moon face”–it isn’t too bad, but it is noticable.

» the storage of fat on my shoulders/back

Today I got my blood tested with the dexamethasone. I don’t know how long I have to wait for results, but I am really fighting urges to call my MD immediately. I found this board because I need support. I am nervous for what my future holds because I really don’t want to have ANOTHER brain surgery, but I think all that I can do it be positive and wait. Thanks for this forum!!

Lavane V (lvowell), Pituitary Bio

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The pituitary gland

The pituitary gland

I was diagnosed with Cushing’s Disease in September 2012.  I started my search for a diagnosis back in March.

So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise.  I had weight to lose from a previous pregnancy.  I began working with a nutrionist and personal trainer.  I spent a lot of time working out and logging everything that went into my mouth.  I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong.  i was gaining weight instead of losing.  I was also feeling very run down.  I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff.  I decided to go have my hormones checked.

At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water.  He said we need to run more tests.  He did a salivary test and some bloodwork to check my corisol levels.  On my follow up with him he said that i had very high cortisol levels and wanted to run more test.  He then went on vacation for a few weeks.  I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.

I started researching on the interenet about high cortisol levels.  Everything that I was reading sounded like me.  Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc.  I found another endocrinologist and made an appointment.  I told him all my symptoms and what I felt was wrong with me.  He asked me what i wanted him to do.  I suggested some of the tests that  I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.

After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome.  He indicated that this was very rare and that he had not seen but one case before.  He ordered an MRI.  The radiologist that read my MRI said that he did not see a tumor.  However, he did say that he saw “sinus disease”.  Now I have never hear of that so i questioned it.  I was told that I would need to go to a ENT doctor for learn more about that.

The endo doc wanted to proceed with the IPSS test.  I keep studying on the interenet about the disease and all the testing.  I even watched a few pituitary surgeries.  I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours.   I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test.  I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take.  I was totally not comfortable with just losing part of my master gland.  I kept my scheduled test but started to research experts in cushing’s.  Then I researched which were covered by my insurance.

In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time.  I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation.  Now then, how do you not know this before you prep someone for the procedure?!?!  I told the doctor that there were other hospital that were treating cushing patients and were performing this test.  I had been reading about them on the boards.  He told me that there was not anyone in the US that had the meds.  That was when I really knew that I was going to have to leave my state to get treatment.

I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX.  I also went online and did a self referral.  I just kept following up with them.  They have a pituitary tumor board that reviews cases.  My case was approved and I had my first appointment in Sept 2011.  I spent on day running tests, having an MRI and meeting with the a new endo.

Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary.  In November 2011, I underwent transphenoidal pit surgery.  An 8mm tumor was removed.  There was some concern because the tumor was right up against my cavernous sinus cavity.  This is where your carotid artery is and the surgeon did not want to get close to this artery.

Unfortunalely, I did not experince a “crash” after surgery.  My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.

English: Cavernous sinus

English: Cavernous sinus (Photo credit: Wikipedia)

for me.  He is going to confer with my endocrinologist and then I will go from there.

Cleo, Ectopic Cushing’s

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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/

Marki (Marki), Undiagnosed Bio

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Hi!

My name is Marki, and I am a 21 year old student. I have been suffering from Cushing’s-like symptoms for a while now, and the doctor at my college health center just recently told me that I most likely have Cushing’s.

My symptoms have all intensified over the past few years. I have gained almost 60 pounds in the last 11 months, I feel weak and tired almost all the time and my muscles have gotten so weak that I have a hard time walking up 2 flights of stairs to my apartment. I sleep for at least 10 hours a night, and have to set at least 5 alarms to be able to wake up for my 9:15 class, and I still end up missing it a lot of the time. I feel like I am walking around in a fog most of the time, and school is harder than it’s ever been. I am having a really hard time retaining information, even after studying for hours.

About 3 years ago I started growing hair under my chin, and getting stretch marks on my boobs. The stretch marks have now appeared on my belly below and around my belly button. My hair has always been really thick, and I have noticed that it is a lot thinner than it has ever been. I have also developed a lot of new allergies, including raspberries, tide laundry soap, nickel, and something else that I haven’t figured out yet, so I have a rash all over my stomach, armpits and thighs. I have had severe headaches since I was about 14, and they are getting more and more common. I also get frequent sinus infections. I got implanon (a type of birth control that they implant in your arm) about a year ago, and haven’t had a period since it was inserted. I have been on birth control (perscribed because of the hair on my chin) since I was 17, so I don’t really know if my period would be regular without it or not.

When I went into the health center I told the doctor about all of these symptoms, and his first thought was PCOS. I had an ultrasound, and there were no cysts. He then started testing me for Cushing’s and referred me to an endo in San Francisco. The endo ordered both a 24 hour urine test and a midnight saliva to be done before my appointment. These were the results:

24 hour-

range- 0-50

me- 49.7

Midnight saliva-

range- .5-1

me- 9.16

So, my free cortisol was within range, and my saliva was more that 9 times the normal levels. I have read a lot about Cushing’s in the last two weeks, but I still have a lot of questions! If anyone has any advice on how to deal with the sleep issues, what tests to request, or any other advice, I would really appreciate it! I need to figure out how to stay awake during the day so I can pass my classes!

Update:

My names Marki, and I am a 21 year old senior at Westmont College. After I finish my bachelors I plan on going to Physicians Assistant school to get my masters. This has been a crazy year for me. A few months ago, my doctor told me that I might have Cushing’s, and since then it has been a constant parade of tests. My body and attitude have changed SO much, and it is making school and life in general really hard. I am lucky to have the support of my family and friends, and I can’t wait to get through this and get on with my life! If anyone has any advice, feel free to message me 🙂

Emma (emma22), Undiagnosed Bio

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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 🙂

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