Home

Lavane V (lvowell), Pituitary Bio

May 8, 2026

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

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.

Judi L (judi), Undiagnosed Bio

May 7, 2026

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

I have been seeing the endo for the last couple of weeks.  Lots of blood tests, saliva test, 24 hour urine test.  Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.

Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance.  First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH.  Doctor said possible cushings.  Have had extreme fatigue, beard on chin.  Muscle and bone pain consistently.  Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia.  Appt. with endo tomorrow to get results of 24 hr. urine test.  Salavia test said was normal.

Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all.  She said that I had the hump, muffin top, and belly fat, lean arms and legs.  Eyes are puffy all the time now.  Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free.  Eat lots of vegetables and fruit as well as a little protein.  Have not had a mri or cat scan yet.  Probably will be next on the list.  Will post after my doctor’s appt. tomorrow and update my bio.

I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.

Coleen (EyeRishGrl), Pituitary Bio

May 4, 2026

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dee (Dee), Pituitary Bio

May 4, 2026

MaryO Addison's Disease, Adrenal Insufficiency, Menopause, Pituitary, Von Willebrand , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

My menstrual cycle ended when I was 38 years.  After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving.

I saw numerous doctors, and each worked with the symptoms as the came, but no one put everything together.  My feet and fingers were numb, and I was losing the ability to think correctly.  I had severe depression and anger issues.

I saw an article in Reader’s Digest about a mysterious illness and took it to my current doctor.  She really didn’t think I had Cushing’s because it was so rare, but my 24 hour urine test came back postive.  Next I was sent for the MRI which showed the tumor on my pituitary.  I had surgery June 27,2007.

It took 18 grueling months to wean off the Prednisone.  I had chronic nausea and diahrrea during this time.  My Endocrinologist did not study up on Cushings and removed my Prednisone 1 week after my surgery.  I crashed and was taken to the ER in serious condtion.  He did it to me again a few weeks later, with the same results.  After the second time, he left my Prednisone alone for the next 18 months.

October 27, 2011 I had Paraespohcial surgery where my stomach had been pushed into my lungs.  It was a very diffcult surgery and recovery.  I am now batteling Celiac, which after reading up on Addisons, I am wondering if I have Addisons?  I had Addison’s crisis twice when my predisone was removed to quickly after my brain surgery.

Even though I am cured of Cushings, it seems the side effect continue to make their debutes.  I am grateful for where I am today, even though I don’t know what is around the corner.   I guess what’s around the corner will be dealt with when I get there, but for today, I am thankful.

Sheara (sbailey), Pituitary Bio

March 8, 2026

MaryO Cyclic, Hashimoto's, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , 1 Comment

golden-oldie

 

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

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

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Nancy, Pituitary Bio

March 4, 2026

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

The pituitary gland

The pituitary gland

I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order. 

In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.

I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.

I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Lisa B (Lisa/FNP2B2017), Adrenal Bio

March 2, 2026

MaryO Adrenal, Adrenal Surgery, Recurrence, Treatments , , , , , , , , , , , , Leave a comment

adrenal_glands

 

Hello,

Where do I start? I have had Cushing symptoms since the late 1990″s. I was tested for cushings and was told that I did not have it.

Then in 2007 I was diagnosed with a tumor in my adrenal gland, mind you I still had symptoms off and on since the 90’s. I went to every endocrine in the Fredericksburg area and was on the OR table to have my adrenal gland removed when the Endocrine said that Cushings was not completely ruled in as what was going on with me, despite 3 24 hour urines showing elevated cortisol levels.

Then I went to this doctor then that doctor…….still saying they couldn’t confirm my diagnosis. In October 2007 I was admitted to the hospital with a pneumonia and did an MRI of my head (again) because I was having severe headaches which showed a lesion of some kind.

After 6 weeks of IV antibiotics and a repeat MRI I decided that I should go see a neurosurgeon. As soon as I walked into his office and never saying a word with medical records in my hand he said “Have you ever been worked up for something called Cushing Syndrome? I replied yes and he said you are very sick and need to have it taken care of and sent me to Georgetown Hospital in Washington DC….where I saw a surgeon and had my right adrenal gland removed 12/29/2008.

I have been pretty healthy until about 18 months my primary doctor was concerned about my heart rate being so high and my brother had just had a quad bypass surgery and sent me to the cardiologist. My heart rate has never been lower than 100 since I can’t remember…..and back in March 2014 I started having weakness going up the stairs, then in September my hips and back started hurting and I was having problems falling asleep and staying asleep.

My HbgA1c was 13.7 and I could not figure out why my blood sugars were spiking despite being on a diet and insulin. My cortisol level was normal in October. I started a really strict diet and not cheating the week of Christmas…..yes I know crazy…..I was only eating veggies, protein and 2 fruit servings a day…to detox my body….I gained 6 pounds.

When January came and I had to see my cardiologist for a follow up my heart rate was 128 and I i had gained 17 pounds in four weeks and guess where it all was…..my abdomen…..I felt like my Cushings had been causing havoc on my body. I was noticing the thin skin and bruises that wouldn’t heel. But I was thinking this can’t be returning until my cardiologist ordered that dreaded 24 hour urine and my levels were 98….2 times the normal….

I just did a repeat last week and had a MRI of my abdomen which the urine was guess what positive for elevated cortisol and the real shocker came today when my doctor called and said my MRI showed both adrenals….but how can that be I had the right one removed in 2008 that had a 4cm tumor in it??? My doctor is wondering if there was residual tissue left behind and what seems to be an adrenal is really a tumor??? Has anyone experienced a re-growth or Cushings for a second time….

My doctor is trying to get me into Georgetown asap because obviously the beast has returned.

Thank-you for your support and understandings in advance!!!!!

Lisa

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Brenda, Steroid-Induced Cushing’s

March 1, 2026

MaryO Adrenal Insufficiency, Steroid-Induced , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I have had Cushing’s for two years. I have been to Mayo Clinic four times in the last two years, and just recently was accepted and seen at the National Institue of Health’s Rare Disease Program in Bethesda, Maryland. I am from Michigan.

I am 34 years old-a RN, BSN who had worked for ten years happily as a nurse-then I became quite ill due to my Interstitial Cystitis-my Urologist put me in the hopstial-I came out of the hospital after five days, and ten days post hospitalization I awoke with severe joint pain, pitting edema, night sweats, fever, Short of Breath, I had a seizure the next day…..I had only been 135 puonds-very active, worked out-played the clarinet in my church orchestra weekly for three services.

After this illness-I was put on steroids to decrease the joint swelling-turns out I was exposed to Legionella disease during the hospital stay and most likely contracted it after taking a shower at the hospital. My world has been turned upside down since then…I was gaining 10-12 pounds of fluid WEEKLY…finally when I went to Mayo Clinic my first visit in 11/07, they felt the Cushing’s was related to the steroid’s I was on-which was not a high dose, to try and decrease all the swelling-no one thought could pin point why I had so much fluid retention-this was about four months from when I first became ill and I know was 195 pounds!

I returned again to Mayo 1/08 and then again 4/08….in April of 2008 it was an urgent visit-I had been passing out DAILY in my condo in Grand Rapids, MI-two hours from my family-my friends would find me-or I’d wake up fallen on the floor, etc-my internist had me come immediately to Mayo-I was set up with a leading Endocrinologist at Mayo and within 24 hours I was diagnosed with Cushing’s Syndrome and Adrenal Insufficiency-my Urine Cortisol and ACTH stim test were awful. I was put on Replacement Hydrocortisone (At this point I had been off ALL steroids for five months-but continued to gain fluid-I was now 240pounds…they did a tissue biopsy-when they cut into my skin fluid came running out-they-at Mayo had NEVER seen anything like this!).

After returning from Mayo-(my father took me for the ten hour drive each time, we would be there about 8 days-he was such a rock for me as I had always been the independent child in the family…now I needed help-and that was hard to accept). I forgot to mention at this point I was developing many skin rashes, my hands looked like they had been chemically burned all the way up to my elbows….I had allergy/PATCH testing done-found out I was literally allergic to almost everything in the environment-All preservatives in medicine, formaldehyde, lanoline, rubber, adhesive, all chemicals, fragerances-even toothpaste, makeup, it was unreal!

Five days after returning home-I ended up in the hospital in GR-I had a secondary cellulitis/bacterial infection with fever on my hands and arms-I was put on IV antibidics …unfortunately the “hospitalist” I was assigned (In Michigan your internist doesn’t round on you-you are assigned a hospitalist to take care of your inpatient care)…anyways-he didn’t believe I needed to triple my steroid dose when ill-so he refused-I fell into a coma that day! Thankfully one of my good friends, also a RN, came to visit when all th staff was trying to awake me-and my friend said, “my God-she’s in an adrenal crisis!” Once they got the Cortisol in me I was okay. But that was terrifying-I could hear everything the nurses, and medical staff was s aying and I couldn’t talk, blink, move anything-I had tried to call my internist before I slipped into the coma-but I couldn’t talk-I remember hearing the receptionist-but I coudln’t talk-they found my cell phone on the floor where I had dropped it.

it has been a hard road-i returned to Mayo 11/08……at this point I was 300 pounds-they did a full body CT, MRI’s of knee’s, etc-all my tissue is full of fluid-they honestly wre not sure what to do-they just hoped that by tryijng to wean down on the steroids my body would start making aCTH and “Cortisol-I brought intormation on the Rare disease Program at the NIH-my internist at Mayo and in Grand Rapids, MI referred me-I also sent a letter with photo’s. I kept a photo journal from the beginning of my journey-taking photo’s of my striae, abdomen, buffalo hump, arms, legs, abdomen, and SEVERE fluid retention – I took these photo’s monthly so the doctor’s could see how this progressed-this was one of the most helpful things I did.

Thousands are referred to the Rare Disease Program-only 50-100 are accepted. I was accepted. My father and I flew out to the NIH May 17th and returned May 22nd. They paid for our travel, all hospital charges, and lodging for my father at the Safra Lodge there on the NIH campus.

I met the guru of Cortisol-Dr. Nieman-she was incredible. It was an amazing experience to be there-like Mayo-their philosophy is “we are here for the patient” unlike many doctor’s I had run into in Grand Rapids-I’m sure many can relate to some doctor’s that don’t even have ten minutes for you-here and at Mayo then spend 1-2 hours with you-you are their priority. It’s refreshing.

They changed my replacement steroids from Prednisone to Hydrocortisone, I’ve slowly been weaning-but I’m stuck at 10mg in the am, 5mg at 2pm, and 5 mg at 6pm. I also had many other consults while there.

Currently I have a WONDERFUL internist in Grand Rapids-I had to change doctors 2/08-I had been with a family practice doctor and this was just way out of his expertise, I also have a wonderful Urologist, Dr. Casamento whom has been my urologist for over ten years-he has been SO kind and helps me handle my Interstitial Cystitis.

Other than that I have transferred my care to Univ. of Michigan. I have the Chief of Endocrinology at U of M as my Endocrinologist-he is awesome-so intelligent-and he works with the NIH and my internist to help formulate a plan.

I also have a wonderful Rheumatolgosit at U of M- I have a lot of damage to my knee’s-and as I said-my weight is now at 300 pounds-they say over 50% is fluid-and you can tell-my skin is SO taught, nothing is flabby….I’ve been on so many diuretics-nothing helps-next step is to see nephrology at U of M.

They Cushing’s Syndrome symptoms are hard to deal with-you have to learn to adapt-the abdomen, the buffalo hukp, the stria-I look just like the diagram on your website-I had to cut my hair very short as I was sweating ALL the time-another bad side effect. I have had to go from being able to live in my third floor condo-to moving home to my parents-I can’t do stairs anymore-I do PT exercises daily at their home-I have to use a walker at all times, I also have to sleep upright-as my abdomen is SO distended if I like even at a 45 degree angle I feel like I’m suffocating. I PRAY for a miracle-the NIH and Mayo had NEVER seen someone with such severe symptoms of Cushing’s. They now are not sure if I have primary or secondary adrenal insufficiency.

In the meantime I have some major damage and arthritis in my spine/knee’s ankles-but I’m not a surgical candidate per my ortho doc….he’s just doesn’t know how to help me.

I think the hardest things for me are just ADL’s (Activities of Daily Living) shower, even using the bathroom, hygeine, etc….and still not allowing anyone to help me-I’m stubborn that way-but the worse the abdomen distends, the worse the fluid gets-the harder it is for me.

Thankfully I have so much loving support from family and friends-but qualify of life is so low. I no longer get out of the home-it’s too hard-and the stares I get from people, and the laughs because of the Cushing’s is hard….I had been getting my groceries using an Amgio cart-but now that I’m living with my parents they take care of that.

Thankfully I had no problem getting disability-but COBRA and my medical bills have taken my entire savings. My church family even pays every other COBRA-but at 540.00 a month-plus all my other bills/mortgage, etc-it’s been a devestation financially.

I wish everyone with Cushing’s the best of luck-just know you are NOT alone. My faith has sustained me in hard times-I can’t imagine not having faith to get throgh this.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Elizabeth, Pituitary/Adrenal Bio

February 10, 2026

MaryO Adrenal, Golden Oldies, Pituitary, Undiagnosed , , , , , , , , , , , , , , , , 2 Comments

golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries Newer Entries