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Trent, Undiagnosed Bio

September 22, 2026

MaryO Golden Oldies, Male, Undiagnosed , , , , , , , , , , , , , Leave a comment

A Golden Oldie

My Comments: Onset symptoms: headaches, low back pain, diarrhea, fatigue, muscle/joint pain, memory loss, weight gain in abdomen, bloaded red face, & blurred vision.

Ongoing symptoms: right flank pain (just underneath ribs), stretch marks on stomach and back of upper arms (not purple), impotence, blurred vision, dry/itchy eyes, insomnia, fatigue, muscle joint pain, memory loss, fat around abdomen & face.

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Voices from the Past: Patty L (Answer hungry), Undiagnosed Bio

July 10, 2026

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

I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Genevieve (JenNYC), Undiagnosed Bio

May 8, 2026

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

to-do-diagnosis

 

I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.

Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones.  My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.

I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.

I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.

The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.

I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.

I need advice.

Michelle (Michelle), Undiagnosed Bio

April 25, 2026

MaryO Cyclic, Familial Cushing's, Insulin Resistance, Male, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , , , 6 Comments

Hi, I am a Mother of 3 boys, 20, 18 and 13.  My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.

I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s.  All of his cortisol levels were considered normal.  He also had an MRI of his pituitary and adrenals which were also negative.

The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc.  He has all of the symptoms except for the obvious stretch marks.

I believe he has cyclical cushing’s, which my sister found out she has after many years of testing.  A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.

It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)

Has anyone else had cushing’s WITHOUT the deep red stretch marks.  He does have stretch marks, but not the typical type you see in cushing’s.

Thanks so much

Michelle

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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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Sheryl, Pituitary Bio

March 6, 2026

MaryO Pituitary , , , , , , , 2 Comments

My journey started about 7 years ago. I began with generalized symptoms. I had severe insomnia, muscle and joint aches. I would be wired for a few days than couldnt get out of bed for days. The symptoms continued to get worse.

I sought help from several dr’s which led nowhere. after doing research I really felt that my symptoms were related to cushings. My local endo did run a few urines and salivas which came back elevated, however, he just wanted to re test in 6 months. I was deteriorating so rapidly that I decided to go to LA and see Dr. Friedman. Best decision of my life.

I will be starting on Ketokonazole after he gets labs that he drew back, and he has Dr. M at MD Anderson reviewing my MRI.

For the first time in many years I feel there is a light at the end of the tunnel. I am so greatful that I have found Board s like this one so that I am able to inform myself. So thank you !

Sheryl added her Helpful Doctor, Theodore Friedman, to the Cushing’s MemberMap

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Brenda B (BeBop), PCOS Bio

February 15, 2026

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

I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.

I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.

My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m  back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks.  My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.

In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.

In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.

This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.

Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0

In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.

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J Stone (J Stone), Pituitary Bio

January 11, 2026

MaryO Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Recurrence, Treatments , , , , , , , , , , , 1 Comment

 

Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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Patricia, Adrenal Bio

January 4, 2026

MaryO Adrenal, Other Diagnosis, Pheochromocytoma , , , , , , , , , , , , , , , , , , , , , , , 2 Comments

My adrenal incidentaloma was discovered after an abdominal CT in 2011.  My doctor told me that it was insignificant, and no follow up was needed.

Late 2012 I began having symptoms which led me to believe that something hormonal was going on.  I was having extreme anxiety, headaches, insomnia, new onset hypertension, hair loss, blurred vision, memory problems, dizziness, and extremely heavy menses.  I went to the gynecologist because I thought it might be premenopausal symptoms.  The doctor started me on birth control pills to regulate the periods, which was the only symptom that improved.

My general practitioner sent me to a cardiologist for my blood pressure which was spiking as high as 194/110.  The cardiologist immediately suspected a pheo, and referred me back to the GP with a recommendation for a referral to endocrinology.  The initial round of labs were all within normal limits with the exception of plasma cortisol due to the estrogen pills.  The endocrinologist told me to follow up in one year.

A lot of people started telling me it I was just stressed out, and depressed.  I don’t buy it for a minute.  It feels like something chemically is wrong. It’s hard to explain….I just don’t feel right.  Yes, I have stressful things going on, but not anything that should make me feel like this.  Especially when things are fine, and I am going to meet a friend for coffee why on earth would I almost freak out on the way there? I started feeling better for a couple of months, then the symptoms came back.

I have had 3 near panic attacks in the last 6 months, social withdrawal, rapid abdominal weight gain, hospitalized with 24 hours of amnesia (transient global amnesia…which left lesions on my hippocampus), headaches, hypertension, amenorrhea for 8 months, increased facial hair.

My first lab test was the high dose dexamethasone which I did not supress.  Last week I did the 24 hour urine…a whopping 3650 liters!!  I will get the results on Thursday.  My endo said he will need to do an adrenal vein sampling as part of the diagnosis.

Has anyone else had to do this?  I am in Germany, so maybe it is just different protocol here, but I really don’t want to have to do it.

Thanks for any feedback!

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Helena (hummerbird), Steroid-Induced Bio

December 11, 2025

MaryO (SLE) Systemic lupus erythematosus, Fibromyalgia, Other Diagnosis, Steroid-Induced , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.

I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).

Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.

I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).

We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).

Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.

My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).

Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.

I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.

Love you all and thanks for taking the time to read my post.

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