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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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Voices from the Past: P. Hyde, Undiagnosed Bio

March 14, 2026

MaryO Cyclic, Male, Other Diagnosis, Prolactinoma, Undiagnosed , , , , , , , , , , , , , , , , , , Leave a comment

48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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Alicia (Alicia), PCOS Bio

January 3, 2026

MaryO Pituitary , , , , , , , , , , , , , , , , , 1 Comment

Hi everyone,

I’m Alicia and I’m 18. I’ve been diagnosed with PCOS but it does not explain all of my symptoms. I used to be super athletic and played 3 sports. I got my period at 13 and it was regular. However, I started losing my periods.

At first they would come every few months but have since stopped completely. I have lost a lot of weight, especially muscle. I had to stop playing soccer because my leg muscles were giving out. At the same time I got very bad acne and started sweating through all my clothes. My hair started falling out of my head. I ordered rogaine at age 15 because the bald spots on my head were so embarrassing.

I’ve been on 3 different acne medications and accutane. I have been working since I was 14 but I can no longer stand through my shifts even though I am only working 5 hours at a time. I feel like absolute crap and the worst part is I’m so weak. And my appearance has changed a lot. My face is round, red, and my eyelids are swollen. I don’t recognize myself and can’t stand to look in the mirror. My arms and legs are sticks and I can’t gain muscle no matter what I try. I get sick all the time, I’ve had strep twice, oral yeast infections, UTIS in the past couple months.

I went to an endocrinologist about a year ago who tested for a bunch of common hormone problems. All of my adrenal hormones were high. Testosterone, DHEA, androstenedione, and aldosterone. However, my cortisol levels were never tested. I was told I have PCOS but there were no cysts on my ovaries.

I found a new endocrinologist who mentioned testing my cortisol levels, but later decided not to because I am underweight and cushing’s usually causes weight gain. To me, it seems like I could have the atypical kind, which causes asthenia instead of weight gain.

Let me know if anyone has suggestions on what to do now, I would really appreciate it. I am still in high school and I’m genuinely worried for my future if I can’t figure this out.

Peace and Love,
Alicia

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Tiffiny D (Tiffiny 3), Pituitary Bio

December 6, 2025

MaryO Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , 2 Comments

Hi! My name is Tiffiny.  I am 34 years old. I was diagnosed with anxiety and depression back in May because of weird pains in my back and on the right front of my stomach. I thought something was wrong with my kidneys and sciatic nerve. I kept getting weird tingling in my legs and face. I was told it sounded like anxiety attacks, which I am sure they were. I am stressed all the time and I don’t know why. I am also very short tempered. I was prescribed meds but I didn’t think I was depressed or have anxiety, so I didn’t take them.

About a year ago I started having weird things going on with my tongue.  Every time I would eat anything my tongue would burn and wouldn’t quit bothering me.  I noticed that I had white, longer looking taste buds too. I thought it was something I was eating so I kept cutting out foods. Nothing was helping, is it anxiety, is it my imagination, what is wrong with me? I googled burning tongue and lots of things came up, geographic tongue, burning mouth syndrome, and thrush. I decided on August 17, 2014, to go have a doctor take a look at it. He diagnosed me with thrush. I was treated for two weeks. The meds seemed to help but the burning was still there.  A month later, one of my kids had a doctor’s appointment. At that appointment, I asked the doctor then if he thought the thrush went away. He said “no it looks like you still had it.”  I mentioned to him that I also have major peach fuzz on my face, lots of darker hair on my belly, and darker pigmented spots on my face. I thought I had too much testosterone. He thought my body was for sure out of whack because of the thrush and ordered a bunch of hormone tests. I came in the next day and had my labs done. This is when I found out I had high cortisol!! My results were 28.5 should be between (6.2-19.4). Okay, what the heck is cortisol?? He referred me to an endocrinologist to have it checked out.

The endocrinology appointment was scheduled for November 3, 2014, three months later, really! I put myself on the cancelation list and got in rather quickly, September 30. Thank goodness because I am a severe stress case! At the endocrinologist visit, the doctor walked in and said “wow, you are not what I was expecting.”  He started talking about the symptoms of Cushing’s syndrome.  I am 5’3, 110 pounds, an avid runner and I eat pretty well. I do have very thin arms with bulkier muscles.  My veins do poke out on my lower arms and are very visible, very dry hands and red fingers. The red hands/fingers started about two or three years ago which I was told it was Reynold’s disease or some skin condition. The red hands bother me very much, they look very old for my age and it is embarrassing.  The doctor then ordered me an ACTH test and two 24 hour urine tests because my blood cortisol results were very concerning to him. Both tests have confirmed Cushing’s.  My ACTH levels indicated that it most likely is a pituitary tumor. I was ordered to have an MRI a week later and they found a 6.5mm to 7mm. tumor in my pituitary gland. At this point I was referred to a neurosurgeon.

I met with the neurosurgeon a week later. Their pituitary clinic happened to be the following Friday and they only do it once a month, which happened to be on Halloween.  He ordered two more night time saliva tests, a week a part, and the results where two and three times past the limit. I am now scheduled for surgery on Dec. 9th and I am totally freaking out. I do notice weakness in my muscles and have an achy body sometimes. My hair on my head has been falling out a ton for many months. I thought it was from nursing and a bad hair coloring! I keep finding more symptoms I really didn’t notice. Face is getting rounder on one side, I am shaky, cold all the time and believe I am losing feeling in my fingers. It is very hard to distinguish between hot and cold, I have to use my arm. My memory is horrible! I do get acne under my chin and on the sides of my jaw. I get obsessive about everything! I am very antisocial, think everyone is judging me or looking at my face hair, hands, etc. I feel so bad for my girls and husband! My obsession with my tongue and peach fuzz has hopefully saved my life! Trying to be POSITIVE for the steps forward!!

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Mak M, Pituitary Bio

November 26, 2025

MaryO Pituitary , , , , , , , , , , , , , 1 Comment

 

My name is Makena, I’m a 20 year old in California recently diagnosed with Cushings.

I have been having a really rough couple years with a multitude of symptoms. I have been suffering from severe depression since I was around 14, and have been prescribed an endless amount of antidepressants over the years. None of them have worked for me no matter the dose or brand.

The first symptom to cause me to visit the doctor was an extremely high blood pressure and pulse rate. I could always feel my heart pounding in my ears and felt on edge 24/7. My psychiatrist first told me it was anxiety and put me on anti-anxiety medication. That did not help, which led me to see my primary Dr. since my resting heart rate was around 150bpm. I have been put on blood pressure medication which has helped regulate me but I still feel very on edge.

My blood tests show very low vitamin D, very high testosterone, and very high cortisol. My Dr ordered an MRI on my brain and a CT of abdomen. The CT came back normal, but a 6mm microadenoma was found on my pituitary gland so I was referred to an endocrinologist. After doing a 24hr urine test and a saliva test, the results for that came back normal.

My main concern being: I can only physically feel my cortisol levels rise at night. I’ve had severe insomnia and daytime fatigue but the jittery and anxious feeling comes at night and then I crash during the day. I have had severe weight gain in my stomach and face as well as purple stretch marks all over. Losing hair, light sensitivity, vision loss, muscle and bone weakness, easily bruising, a stomach ulcer, a buffalo hump, and constant fatigue have ruined my life. I feel like my body is deteriorating and am not the same person I once was.

I’m hoping I will be able to get surgery to remove the tumor but am concerned that I won’t be approved for it because some tests came back normal. I am not sure what my next step will be but am happy to find stories I can relate to here on this website.

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Kim, Undiagnosed Bio

November 10, 2025

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

golden-oldie

Hello, everyone. Below is information from my introduction at Cushings-Help.

“So, about me…I’ve had various non-specific symptoms since I was a child and various specific diagnoses as an adult … hypothyroid, fibromyalgia, adult ADD (misdiagnosed and treated as bipolar from 2005-2008), chronic atrophic gastritis and chronic duodenitis (diagnosed via biopsy), colon polyps, non-celiac gluten sensitivity, sinus polyps, insomnia alternating with hypersomnia (sometimes I sleep up to 15 hours a day), plus an REM sleep disorder (REM sleep latency 287 min/378.5 total sleep time, REM sleep 37.5 min with 12 upper airway resistance episodes during that time) … and the list goes on. I have multiple vitamin deficiencies too (C, D, zinc and iron) and other abnormal blood levels (low arginine and dopamine, and high folic acid, glutamine, glycine, norepinephrine and ornithine). The levels that made some people suspect Cushing’s (vs. PCOS) were my DHEA and Testosterone. My highest DHEA was 1342, lowest Free T is 0.2.

From a CT scan of my abdomen in August 2011, I know there’s a “probably benign” lesion on my liver, a cyst on my kidney (plus medullary sponge kidney), a 10 mm cyst on my ovary and an umbilical hernia. My PCP considers all of this normal. Also, I’ve had four fractures as an adult (two in 2008 alone, one that required surgery) partly because of poor balance and coordination (frequent trips and falls, dropping things, etc.). I was through an EEG and 24-hour EKG because I fainted and collapsed on the sidewalk outside of my kids’ school at the end of December 2011. Those tests were normal.

…In terms of my physical appearance, I don’t have stretch marks but the shape of my face changes almost daily. It’s been hard for me to piece together a visual timeline since I hate having my picture taken and therefore, steer clear of camera lenses. (NOTE: I did manage to put a timeline together…You can find it here. http://cushings.invisionzone.com/index.php?app=gallery&album=408) How sad is it that I have very few pics with my kids because the person I see in the mirror is a stranger! I don’t even resemble the person I once was…my weight just continues to creep up regardless of how little I eat or how much I exercise. The fatigue has gotten REALLY bad lately and my tolerance for any physical activity is gone. I have regular shortness of breath and my blood pressure and heart rates are all over the place. Just the thought of doing stairs to throw in a load of laundry is overwhelming. And after showering to get ready to go somewhere, the only place I’m ready to go is back to bed. I also have a small buffalo hump and my neck is very thick. 16″ necklaces that used to fit comfortably won’t even close now.”

January 30, 2012

Today I had an initial appt with an endo who ordered the following tests:

Gave blood today to measure:

UR/CS/CBC/FT4/T3RIA/TSH (have confirmed hypothyroid; TSH has been remaining high even on 125 mcg Synthroid)

GONAD #1

Thyroid Antibodies

Vitamin B12/Folate

IGF-1 (have two kids with GHD being treated, third child is being tested; endo suspects IGF-1 may come back low)

IGF-BP3

ACTH

Cortisol

Cardio CRP

DHEA (history of high DHEA … 554, 717, 1342)

Ferritin

Prolactin

Free Testosterone (history of low Free T)

Vitamin D, 25 (have confirmed Vitamin D deficiency, rechecking levels)

Vitamin B1

Vitamin B6

Vitamin C

Tuesday, January 31 having DEXA scan of spine, hips, and right wrist and ankle (have had multiple fractures on right side…cuboid (foot), anterior process (heel), elbow, wrist).

Thursday, February 3 having nerve conduction study because of peripheral neuropathy in hands and feet

Friday, February 4 meeting with opthamalogist for vision testing (peripheral vision is diminished, causing dizziness, balance issues, resulting in falls)

I’m waiting for endo’s order to have an MRI of the pituitary. Endo reviewing report from the CT scan I had in December 2011 after my fainting episode/collapes on the sidewalk outside my kids’ school. The report says nothing except there were not hemmorages, so anticipate order for MRI will be coming soon.

This seems like a lot of tests, but I think the endo wants to determine where to dig deeper. The nurse practitioner asked a lot of questions that led me to believe she may have been suspecting Cushing’s and/or growth hormone deficiency. And they were interested in a timeline I’d put together demonstrating my eight month experience on Ketoconazole, which allowed me to shed weight and caused an improvement of symptoms. (The weight went back up and symptoms flared off Keto as posted above.)

I guess I’m in a waiting pattern now as the endo pulls together the results of all these tests and decides which tests will be next. The only next test that was discussed was GH stim testing, again leading me to believe the endo may think he’ll uncover that issue, especially since I have two kids who are GHD. (My son also has smallish pituitary and chiari malformation and my daughter has a Rathke’s cleft cyst.) I know a lot of the standard Cushing’s tests are missing from the above list, but this is a starting point. I’ve never had such a full endocrine workup, so at least I’ll have a baseline.

I’ll post more about my journey as my test results start coming in.

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Drew (DrewP), Undiagnosed Bio

October 15, 2025

MaryO Male, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , 1 Comment

Hello, I am a 24 year old male who has been feeling out of wack for 4 years now.

I have been going to numerous different doctors to figure out what is going on. It all started with the indication of low thyroid, then noticed low testosterone. I was on levothyroxine for about 2 years. I recently went off all medication, and just had my labs done and i have all normal levels.

Everything i get done is contradictory to my last lab test. I have had positive 24hr cortisol urine results but nothing high enough to diagnose.

Sorry if this is a confussing post 🙂

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Patrick, Undiagnosed Bio

September 18, 2025

MaryO Golden Oldies, Male, Undiagnosed , , , , , , , , , , , , , , , , , , , , , 2 Comments

A Golden Oldie

Hello everyone,

My name is Patrick and I live in Montreal, Quebec, and I’m 35 years old. I’m not very good in english so my bio will be as short as possible. Sorry about that, and let’s hope that you will be able to read my bio without any problems.

I have found this web site (cushings-help.com) because I was doing some research a few weeks ago on the internet about hypogonadism. Back in April, my new GP (one of the many I’ve been seeing for the last 10 years) wanted to test my testosterone levels and finally find out that I was indeed suffering of hypogonadism. Based on those results, he did recommended to me a Testosterone Replacement Therapy for a few months which I did start immediately.

Three months after the beginning of the TRT, I’ve been tested again to see if any improvements were noticed but, surprisingly my testosterone levels were lower then before I’ve first started the TRT (twice as low to be precise).

So, he then ordered a CT Scan of my pituitary gland to make sure everything was okay with my pituitary gland. I received the results of the scan two weeks ago and, according to him, everything is “normal”. He suggested that I should try some testosterone injections insted of both gels I’ve tryed so far. During my last visit, I talked to him about some ressemblance between the symptoms of Cushing disease and my symptoms which are :

– Rapid weight gain (70 lb in 18 months mainly at the torso)
– Severe depression for the last 7 years at least
– Broken vertebrae in 2005 for no apparent reason
– Circadian rhythm completely out of whack (can’t sleep without  my 15 mg of Zopiclon each night for the last 5 years)
–  Suicidal thoughts (one attempt in 2004)
– Hypogonadism (total and biodisponible testosterone levels of 4.32 nmol/L after three months of TRT)
– LH and FSH deficiency
– Higher cortisol level at 4 pm than 8 am
– Stretch marks
– Changes of my skin (thinner and dryer, take longer to heel)
– Deacreased libido
– Lost of strength, body mass and stamina
– Joint pain (especially in the knees and hips)
– Headaches
– Congnitive difficulties
– etc. etc. etc.

He did try to reassure me that it wasn’t Cushing, but because I know that Cushing is often misdiagnosed, I ask him to see an endocrinologist anyway. Thankfully, I have an appointment next December 3rd.

I will try to update my profile as soon as I will have any further developments. If you have any questions or advices, please feel free to let me know.

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Voices from the Past: Angela Marie (Angela M), Undiagnosed Bio

August 18, 2025

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

Growing up I’d always been anywhere from underweight to average with a couple chubby phases in my pre-teens and teens. I actually got into modeling work for nearly 10 years and I found myself having to take time off in 2008..At least I thought it would just be little while. Between anxiety, being fairly active and a high metabolism, I never had trouble losing weight until In 2007 out of nowhere, I found myself rapidly gaining a lot of weight. All together I had gained about 60-70 lbs in well under a year without my diet or lifestyle ever changing and I’d always been a light, picky eater. I went from a usual size 5-7 to 15 or S/M to XL/XXL. I got back into yoga, pilates and even bought a Total Gym. Working out and dieting even I wasn’t losing even so much as water wieght. I was notiing a whole host of new symptoms. From purple stretch marks, gaining weight, my fingers, toes and palms of hands constantly bright red. Weight gain/appearing swollen only in my torso and upper body, to even my features changing. Adema, constantly craving and eating ice. My once heart shaped face was now completely round and full starting from the top of my ears. I appeared more swollen than anything.

My first endo diagnosed me with hypothyroidism. He was the first to suggest Cushings and my first 24 UFC was 4 times higher than normal and the next was slightly above normal. The rest after that were in the normal ranges. Eventually hypothyroidism was ruled out after routine tests came back normal without taking the Synthroid and telling my doctor I was. Once I admitted it, he was so angry I proved him wrong that he dismissed me as a patient.

I was sent to another Endo and a specialist he referred me to. The next endocrinologist ended up being the most arrogant, rude person I’ve ever met and the few appointments I had with him ended up being mostly arguments or me breaking down into full blown panic attacks. The specialist I seen and his fellow who are supposed to be the best in my state initially believed I have Cushings once they went over my symptoms, medical history and photos documenting my physical changes. The specialist and my past endocrinologists even had grand round meetings on my case and still blew me off!

In 2008 I started having fluid/discharge from my right breast and after tons of testing to rule out breast cancer I was sent to surgery to remove the ducts. After this traumatic surgery, I still have fluid and from both breasts now that’s been ongoing for 6 years. Even after expalaining my situation and medical issues, I’m just told to lose weight. I went from completely normal sugar levels to borderline diabetic to “full blown” diabetic within a matter of months at the age of 26. I’ve seen numerous dieticians, nutrition and diabetic classes and no one can figure out why I’m not losing weight doing everything right. I was prescribed Metformin and lost a little over 20 lbs, but it was such a high dose it had to be lowered and I stopped losing any more weight.

Since everything started in 2007 it seems I’m adding more and more symptoms almost monthly to my already too long list with no answers as to why or what is causing them. I’ve done more research than some would consider humanly possible and probably more than some doctors I’ve seen! Reading blogs, forums, bio’s, etc. I can’t believe how many of the same symptoms I have as other patients. Mystery Diagnosis anymore is hard to watch relating so much to the stories I break down crying. The only symptoms I seem to be lacking is the constantly high cortisol, pronounced buffalo hump and thinning skin. Other than that I seem to have every single one, even the rarest or some I’ve never even seen associated. I’ve been offered so many possible diagnosis’, but nothing definitive. Everything from metabolic syndrome and PCOS to auto immune, parathyroid and that’s just your body!

I’ve seen or been pushed off on just about every specialist there is. At least my primary doctor admits there is something serious going on, but it’s over his head. Every single one of my other doctors, PA’s, surgeons or specialists believe I have Cushings, but I need an Endocrinologist to agree.

6 years later I still with labs all over the place, a list of literally 30+ symptoms and health problems because of this mystery disease that’s yet to be diagnosed. My Cortisol tests seem to be back and forth, but mostly showing low. My testosterone, ACTH and Insulin Like Growth Factor are all elevated. My vitamin D and iron are extremely low even with prescription strength vitamins. My white cell count is high enough to be sent to a cancer center to rule out different types of cancer. I was dagnosed with fattly liver disease and no answers as to why. Hair growth on my face and body, acne breakouts worse than I ever had in my teens. Chronic reoccuring skin, bacterial and viral infections.Dark pigmentation under my arms. Excessive sweating to the point my hair is soaked or sweat drips from my face in cool weather or shopping. Severe intolerance to heat. Growths or polyps on different organs without any further testing and more abnormal labs and symptoms than I can keep track of. I’m just at that point where I’m not sure if I give up and let it take me out or just keep searching for that one possible doctor who will listen and order the right tests.

All I know is I’ve lost so much of my life being so sick and disabled. Not working, not even modeling work on the side, no college to work with animals and be a veterinary tech, turning 30 and still not being able to get pregnant, going out and having fun like I should or even recognizing myself in the mirror. Loving swimming and summer, but can’t stand looking at myself or being engaged for over 5 years and pushing off a wedding because I don’t want to walk down the isle like this and look at my wedding photos remembering this time in my life.

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Voices From the Past: Paul M (Paul), Pituitary Bio

July 28, 2025

MaryO Male, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , 1 Comment

 

Hi All,
I was diagnosed 4 years ago. I had extreme weight gain despite a very physically active life style. I would require less than 2 hours a night of sleep. Eat less than 1,000 calories per day and exercise 3-5 hours a day. I had the emotional swings as well. I would bruise or cut very easily. Doctor suspected Cushings after I displaced my knee cap for the second time due to Patella Tendonitis.

Months of testing resulted in what the doctors considered a low likelihood for positive outcome, the surgeon (supposed to be one of the best) agreed to remove the tumor either way. It was filling the Sella to the point it was pushing on my pituitary. It was wrapped around my optical nerve and would probably cause problems with my eyesight.

I was told that I would be back to work in 3 weeks.

Post Surgery my Cortisol levels never rebounded. The doc gave me 10mg of cortisol with no affect. Then they gave me 40mg and I could get up to go to the bathroom. Within an hour levels were back down to 3 (whatever).

They put me on 80/40mg of Cortisol for morning and noon each day. I still was basically unable to move. After 1 year. I was off cortisol and passed the suppression test. And still wasn’t losing weight, felt sick all the time.

It appears my anterior pituitary gland has not recovered. I don’t make enough TSH or the hormone to induce Testosterone. I took the Gel for testosterone with poor results. My thyroid tests are considered inconclusive. I try to feel out my thyroid dosage. Now I get testosterone implants. They seem better.

Basically put, four years later I feel almost as bad most days as before the surgery. Weight gain is still an issue. The major differences are, I sleep really well. I don’t bleed at the touch. My feet are very week, I could sleep 15 hours a day.

 

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