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Voices from the Past: Lisa (sagrae), Undiagnosed Bio

July 10, 2026

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

Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

Voices From the Past: Alex C (Alex C), Undiagnosed Bio

July 7, 2026

MaryO Diabetes, Male, Other Diagnosis, Undiagnosed , , , , , , , , , , 4 Comments

Hi, My name is alex and i honestly have no idea what’s wrong with me.

about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…

finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered

one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…

 

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Jarryd (Medboy), Pituitary Bio

May 13, 2026

MaryO Male, Pituitary , , , , , , , , , , , , , , , 7 Comments

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

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

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

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

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

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

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

Location of the pituitary gland in the human brain

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

Jennifer (jennifer), Undiagnosed Bio

May 9, 2026

MaryO Undiagnosed , , , , , , , , , Leave a comment

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

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

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

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

Marian U (MaidM), Adrenal Bio

May 8, 2026

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

HI!

I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012.  Before 2 years ago, I had never even heard of Cushings.  Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today.   Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years.  My goal is to help as many people as possible in battling this devastating disease.

I am so happy that I have a new chance at a real life! Feel free to contract me.  Below is a piece I wrote before surgery and my stats.

🙂 Marian

————————————-

My Experience with Cushing’s Syndrome

The changes came about gradually.  So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else.  I had become someone unrecognizable: the “Not Marian.”

One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference.  Individually, the changes I experienced were easily explained.  I was tired. I had nighttime hot flashes.  I gained weight. I was moody and forgetful.  My sight was blurry.  I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first.  One day, I forgot how to roll down my car windows.  I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.

I also noticed that I stopped getting compliments.  People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore.  I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get.  I had “hit” the proverbial “wall.”

It is easy to look in a mirror and only see a stylized version of yourself.  But, photos are more precise.  For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line.   They just didn’t look like me anymore.  I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.

My epiphany came in the form of the photos on my work identification cards, taken about three years apart.  Not only do I look like I have aged about ten years — I also look completely different.  My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow.  I look like a bad photo copy of my former self.

Now, I realize that how I look is a small part of who I am as a person.  However, it is also the part of me that everyone sees first.  I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror.  I was astonished at my reflection and cried.

A friend suggested that I just realize that this “Not Marian” is who I am now.  I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow.  I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables.  I exercised four or so times a week.  I went to a diet doctor.  I ate under 1200 calories a day.  I bought new clothes.  I got my nails done.  Despite these efforts, I only saw minor improvements in the way I looked and felt.  I still felt as though I was always wearing a rubber suit over my skin that covered my former self.

In many ways, the diagnosis of Cushing Syndrome was a relief.  Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease.   But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop

My initial inclination was to tell everyone.   I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have.   “It’s not really me!  It’s the Cushing’s.”  I tried it a couple of times with mixed results.

Mostly, people said that they had not noticed a significant change in the way I looked or behaved.  My closer friends were more tolerant, expressed concern, and asked questions.  The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments.  And though it was significant to me, the changes were not readily observable.  So, I will try not to talk about it.

I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such.  I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment.  I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation.  Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.

STATS

July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA.  Low ACTH. Referred to NIH.

Late July 2010:  CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)

Sep 2010: NIH testing.

Nov 2010:  NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.

Dec 2010 – April 2011:  Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.

April 2012:  Follow up testing at NIH.  Cortisol is high.  CT of adrenal tumor is stable.

June 2012.  Second cortisol at NIH is high.  Diagnosis cyclical Cushings.  Will not operate.  Note that I do not look like clinical Cushings, so that was part of the problem.

July 2012: Bone density loss of 25% in three years confirmed through Kaiser.  I happened to luckily have had a previous bone scan so that they could compare.  The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.

Aug 6, 2012: Referred for surgery on Aug 27.

Aug 26, 2012: Enter NIH.  Surgery postponed but I can’t leave because of the testing!

Aug 29, 2012.  Surgery!  The surgery itself was easy.

Sep 2, 2012:  Left NIH

Returned to work half days Sept 4 and full time Sep 10.

Marki (Marki), Undiagnosed Bio

May 6, 2026

MaryO Pituitary , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi!

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

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

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

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

24 hour-

range- 0-50

me- 49.7

Midnight saliva-

range- .5-1

me- 9.16

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

Update:

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

Vynn W, Pituitary Bio

May 4, 2026

MaryO Pituitary , , , Leave a comment

Have had 8 grueling months of tests and could have done with support as I was quite confused. Nothing in Australia. Tried internet but didnt see this site.

Have just had R/O pituitary tumour (va noseM & am in recovery phase.

Not clear on what to expect but am experiencing extreme tiredness.

?Normal.

Diana B (Diana Brown), Undiagnosed Bio

April 25, 2026

MaryO Adrenal, Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 4 Comments

Hi, My name is Diana. I have been sick for over two years now.

I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.

I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.

I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.

Here are my symptoms:

Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)

Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test

Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery

Extreme fatigue/ as tired when I get up as when I go to bed.

Muscle weakness with any exertion, especially going up stairs and most days just walking across the room

Pallor

low grade fever on and off

blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently

Rising cholesterol over the last couple of years with no change in diet

Right flank pain

Low back pain

Burning pain in upper buttocks and upper back thighs

Stomach and groin pain

Extreme hip pain

Shaky and fine tremor in hands and sometimes my head also shakes

Mildly elevated cortisol (24hr urine cortisol test)

Have been diagnosed with osteopenia in the past

Hashimoto’s

I break out with clammy/flushing skin sometimes during the day but mostly at night.

Cannot tolerate carbohydrates (not for many years) /have many food intolerances

Easy bruising

So, that’s pretty much it. Thank you for letting me join!

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Kim (lil dickens), Pituitary Bio

March 31, 2026

MaryO Acromegaly, Adrenal, Golden Oldies, Hypothyroidism, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , Leave a comment

golden-oldie

 

March 2009
I was diagnosed in 1995 with hypothyroidism, after the birth of my son vie C section. This was my third Cesarean section. I knew I was gaining too much weight during pregnancy but no one would listen to me. I’ve had hypo for fourteen years now, with ongoing difficulties and no weight loss.

I became suspicious when I couldn’t get my thyroid disease under control and started moon facing. In 2003 my daughter noticed my buffalo hump. I tried to point it out to the doctor but to no avail. Said it was fat. I was tired, depressed and sick.

I have to note that when I was a child I cracked my skull open. My sister said I had clamps on my head. I cannot find anything else about it. I had severe headaches, poor appetite, skinny and fearful. Many emotional problems. I came home from school many times to have ice packs on my head for the headaches. I started to drink alcohol at about 13 yrs old, becoming an alcoholic until age 33. 20 years of drinking! I am now sober 18 yrs.

I am pursuing a diagnose for Cushing disease based on my symptoms and the huge hump on my neck. I’ve been really complaining for the last two years.

My newest PCP was the one who gave me a copy of a printout on Cushings. She is sending me to an Endo but who knows. 3 1/2 month wait to see Endo. Now, wouldn’t you know it, my hubby’s job looks like its going to be terminated in March, so my insurance will only be in for two months after that! I’ll be without insurance!

September 2009
I’m now in the process of testing after going through 2 more Endos and meeting a great Endo in Maysville, KY: Dr Holmes. “Wonderful, Good doctor “as we’d say in PA! I had went to one Endo here in PA and had two UFC24 test done and I showed high, but he just asked if I was stressed and sent me to Hershey. I heard Hershey Medical wasn’t very good for Cushies so I moved on to KY. I’m so glad I took the time and the money to go there. I will never regret that. It saved my life!

I feel so fortunate. Dr Holmes ordered more testing which I am doing now, and he looked over a Pituitary MRI which I obtained from the other Endo. Dr Holmes disagrees with the radiologist that my MRI was normal. BTW, my husband got another job that uses the same Union Insurance! I also have high GFI-1. He said I might have an Acromegaly.

Dec 2009
I am now diagnosed with Cushings and Acromegally. At this present time I have chosen my surgeon and am waiting for his approval for surgery and set a date to meet with him.

All of this testing and paperwork is time consuming and a lot of patients is needed. I am diagnosed during the holidays and this is really a slow process with many delays.

My symptoms are many, including that horrid buffalo hump. I feel really sick sometimes, and bloated like I am going to exploded. I have extreme fatigue. I also feel during my lows like I am just going to die, with waves of dizziness and a huge general weakness that I can hardly turn over in my bed. I thank God that I do not hurt. I am just stiff in the knees and I can’t get up very well from a squat or from sitting too long. My emotional state is awful, from rages to deep depression.

I suffer/suffered from TMJ ,Depression, Mood Swings, Carpal Tunnel Syndrome (2)with surgery, Weight gain, Headaches and Vertigo- dizziness, teary right eye, Teeth gapping, Cavities, infected Root Canals, Hypothyroidism, Hashimoto’s Disease, Tonsillectomy, Costochondritis, Heart Murmur, Tortuous Aorta- a twisted heart valve, shortness of breath, Tennis Elbow, Irritable Bowel Syndrome, Dysentery, Impotency, lost periods, Osteopenia, Ovarian Cysts, 3 C sections, Joint stiffness, chronic rectal itching, Hemorrhoids, Heel Spurs, Ganglion foot cyst, MRSA.

I am very afraid of the Acromegally. I have changed sizes. I was a petite 10, I am now a size 22. I do believe I have gained height by 1–1 ½ inches. My wedding rings size has changed twice and now I can no longer wear them. I suffer chest pains from Costochondritis- inflammation of the rib bone area. As the days go by without treatment, I swear I can feel the damage that is being done to my organs. I suffered terrible dental problems with major infections and I also had an awful infection in my foot from a minor injection for a cyst. I ended up with surgery to clean out MRSA and had two areas of incision! I also show a twisted Aorta valve, which I feel is from Acromegally.

I succeeded in obtaining my diagnose of Cushings Disease with Acromegally from Doctor Holmes through UFC tests (Urine) and blood work for IGF-1, CRH testing, and Glucose Suppression Tests. Salvia testing didn’t work for me. I feel I have problems with my saliva in general, perhaps a malady not yet diagnosed, but nevertheless is present. I was tested once with saliva that proved I had a very low acidic value, and the comment from the lab was “could be due to cortisol access!” 5 years before I was diagnosed with Cushings! I am now waiting to meet my surgeon, Dr Jho and set up a surgery date.

This site is invaluable to anyone suffering. The amount of information can be overwhelming because it is so plentiful. The forum is wonderful. Up to date information, wonderful people who give help, information; support and Hope!

Update April 5, 2011

I had my 1st pituitary Surgery Jan 28th, 2011. My tumor stained positive for Growth Hormone but did not stain for ACTH as suspected. i was on cortisone for less then 3 months, for I was told to wean quickyl when I was actually gaining weight and aquired more stretch marks. I had some relief…such as my tongue had swellling the went down some, my hemmroids disappeared overnight, and my earlobes went down from being swollen so big you couldnt see my post earrings. And that horrible feeling I was being squeezed to death. But, after tesing one UFC and some other blood labs, I was found to be high with my UFC24. It was a 53 (0-50). Even though my doctor said I was cured, I begged for another UFC. He gave me a lab slip and said return in 6 months. I went home and did the lab and it came back 57 (0-50). He made a note to discuss this when I returned in the fall. I knew I wasnt cured. I actually gained more weight then ever and grew more in the waist line. I tried to get help at John Hopkins and Allegheny General Where I had my surgery with Dr Jho’s Endo, but to no avail. They told me to go home and forget about Cushings.
it is then I called Dr Ludlaum with photos and a note explaining my surgery and testing. I went to Camp Cushy in Seattle, Washington @ Swedish Medical Center. 5 Days testing proved successful. I had high Midnight serums, high UFC and High ACTH. Though not quit enough for a diagnose , I went home with a test kit to continue testing. I have just completed my third kit and am waiting for result. Dr Ludlam said this is it for home testing an he will come to a conclusion soon after this. I hope that I will get an ok to have another surgery. I am now suffering more problems …I am now a pre diabetic. Dr Ludlam found that I have a enlarge left Adrenal Gland. I have tested high in all areas now, including one high saliva! ( surprised me! ) My ACTH has been consistantly high ( about 10 units higher than the top limit) and I had a few more UFC highs. I definely feel sicker, unable to clean my house, run the sweeper, wash clothes or even take a walk very far. I get extremely out of breath. I suffer high and very low BP. (92/49/75) I am anxiously awaiting Dr Ludlam’s final say in my matter.

Also, I am dealing with my son who is 16 and is now in testing for Cushings also. He is showing signs of this dreaded disease!

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Erin T, Pituitary Bio

March 18, 2026

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

pituitary-location

 

After six years of trying to get pregnant I finally decided to see an endocrinologist who suggested I might have a tumor on my adrenal glands and prescribed by bromocriptine to make it shrink. Two years later I was able to carry a pregnancy to term and delivered a healthy baby girl. After delivery I was never able to breast feed, kept gaining weight, had horrible stretch marks and odd bruising.

One year later I still had not had my period so I went to my OB-GYN. She shot me full of progesterone and estrogen, which did nothing so I went back to the endocrinologist. That day my BP was 173/121 and I weighed 180lbs (I’m 5’4″).

On first sight he diagnosed me with Cushing’s Syndrome and after a series of tests over many months it was confirmed.

On November 25, 2011 I had surgery to remove the macro adenoma that had completely consumed my pituitary gland. Ever since then my immune system has been weak and I’m tired all the time. Despite losing weight and exercising and eating right I just can’t seem to feel good.

I take .88 Levothyroxine, 2.5 prednisone, 2 doses of desmopressin and hormone replacement. Most days I wish I had never had the surgery. But, through it all I have done my best to live.

6 weeks after my surgery I went back to grad school and graduated on-time with honors, but since then I haven’t been able to keep a job outside of the home because I get sick if someone sneezes within 100 yards of me, and lets not even talk about the stomach bug.

I’ve been hospitalized twice and now carry injections of dexomethozine and anti-nausea meds with me everywhere I go. I’ve told my doctor about my fatigue and he refuses to prescribe Growth Hormone, but I’ve learned to suffer through it.

 

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