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Denise (Jeff’s Mom), Undiagnosed Bio

October 13, 2026

MaryO Male, Undiagnosed , , , , , , , , , , , , , , , , , 2 Comments

My son is almost 16 years old and so sick he hardly gets out of bed anymore.  Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more.  My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him.  He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless.  He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range.  I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.

His symptoms are as follows and the explained away answers from the Dr.s –

1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around.  Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired.  He told me it’s like his mind sleeps but his body doesn’t feel rested at all.  Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6.  He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly

I am sure there are other things but these are the first to come to the top of my head.  His biggest complaint is the memory loss, lack of sleep and pain.  I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old.  I am watching him get worse and watching his precious teenage years just pass right by him.

Contact Denise here.

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David T (Wombat), Adrenal Bio

October 12, 2026

MaryO Adrenal, Adrenal Surgery, Cyclic, Male, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

adrenal-locationHi, I have been diagnosed with probable cyclical adrenal cushings. This all started after a scan on my abdomen for something unrelated revealed bilateral adrenal adenomas. When I googled adrenal adenoma everything fitted into place. I had been depressed , put weight on which were my main symptoms along with anxiety.

I was then referred to an endocrinologist in the UK who ordered some initial tests. I did Two 24hr UFC’s on consecutive days one came back at 36 and the one the day after was 91(normal below 50. Another time the normal range was 165 and the 1st one was 108 and the one the day after was 393.

I then did an overnight dexamethasone test and suppressed below 50 to 48. My endocrinologist then said he didn’t think I had cushings and said come back in six months and said it might be due to stress. I then got a second opinion and then the real testing started.

Roll forward four years and I have done about 30 – 24hr UFC’s numerous ACTH and full blood counts. renin and aldersterone, metoclopramide test, glucagon test, vassopression test, oral glucose stimultation test, day curve cortisol, spent a day in hospital walking round the ward for two hours, then eating a mixed meal and then sitting down for two hours while they tested my cortisol every hour . Did a Low Dose Dexamethasone Test and came out in a rash and my blood pressure dropped so got told I can’t do the test again. Had a bone density scan. I hIad a pituitary scan that revealed a lump inside my tongue and then had to have a whole body scan followed by a tongue biopsy(which turned out to be benign.

I have had about five CT scans on my adrenal glands and was referred to an endocrine surgeon this week who is going to perform a right adrenalectomy. The right one is 4cm in diameter.

He said looking at the scan he thinks it looks like macro nodular adrenal hyperplasia but wont know till pathology get to examine the specimen.

It’s been a long, long journey but finally looks like it’s coming to a conclusion now.

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Monika (Mokitsa), Undiagnosed Bio

October 7, 2026

MaryO Undiagnosed , , , , 2 Comments

undiagnosed3currently waiting on my test results

24 hour urine test

11 pm x3

and blood tests

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Voices from the Past: Margaret S (Maggierose), Possible Adrenal Bio

October 1, 2026

MaryO Adrenal, Diabetes, Other Diagnosis, Undiagnosed , , , , , , , , , , , , , Leave a comment

undiagnosed 5

Hi

I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.

I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.

I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.

My symptoms are as follows.

Sweating mainly evening time around 9pm

Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.

Changes in face. When I look in mirror I often think this does not look like me.

I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.

I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.

Some things I can maybe put down to age.

I would appreciate any comments from members. I will let you know when I get results.

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Dalygirl, Undiagnosed Bio

September 14, 2026

MaryO Golden Oldies, Undiagnosed , , Leave a comment

A Golden Oldie

well, hmm, after years of wondering whats wrong with me, I came across this thing called Cushings on the net, and low and behold it explains everything… now I am on the quest of getting a dx.  But my husband works for the local goverment and here they send us to a “free” dr.  I really think that this “free” dr is paid to NOT find things wrong with us….

Wish me luck, I just did my first 24 hour urine, (waiting on the results) and after I get those results based on if they find anything I will pay for a REAL dr. out of my own pocket….. HELP!!!!!!!!!!!!!!!!!!!

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

July 10, 2026

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

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

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

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

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

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

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

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

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

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

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

~~~

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Voices from the Past: Emily B-C (EmilyBC), Undiagnosed Bio

July 1, 2026

MaryO Adrenal Insufficiency, Other Diagnosis, Thyroid, Undiagnosed , , , , , , , , , , , , , , , , , , , , , 2 Comments

undiagnosed3

 

Hi.  I am a 40 year old female who has been feeling “not quite right” for almost 10 years.  I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years.  I continually have vitamin D deficiency issues.  I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.

This year, I started feeling worse than usual.  I have zero energy and my brain is in a perpetual fog.  My muscles and body ache, my face is round, and I have gained 40+ lbs over the years.  There are days that I physically cannot get out of bed.  I have fainting spells and a racing heartbeat at times.  I crave carbs and salt.  There is not enough water in the world to drink and I have to run to the bathroom frequently.  No matter how hard I try the weight will not come off.  When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.

I was an avid equestrian- 3 day eventer.  I was riding and showing no less than 3 times a week.  I was getting fit.  Now I am just a useless blob that can’t do anything.  I have been pushing to go to the barn to just groom and be with my horse as much as I can.  

My doctor found that I have an unusually high blood cell count a couple of months ago.  I was sent to a hematologist to find out why.  We did so many tests I quit counting.  The conclusion was that I am not sick enough to be sick.  So many tests were coming back normal or high normal.  No lupus, no leukemia, no answers.  I finally asked about Cushing’s because I have a majority of the symptoms listed.  My doctor was skeptical, but agreed to let me do a 24 hour urine test.  It came back high.  This has allowed me to move to an endocrinologist.  I also have high levels of reverse T3.

So far I feel like a complete lab rat.  I have now done 2 salivary Cortisol tests and have another urine test this week.  One of the 2 saliva tests came back very high.  My doctor said we have to do yet another saliva test to test the last results.  After all of this we will do a dex suppression test.   

At this point I am very depressed that I am unable to live my life.  Riding is not an option because I just get “floppy” and risk falling off.  I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.  

I am so lucky to have a doctor that believes my symptoms are real.  She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do.  For now, I am just a good lab rat.

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Robyn N (Robyn), Adrenal Bio

June 30, 2026

MaryO Adrenal, Adrenal Surgery, Cancer, Golden Oldies, Other Diagnosis, Treatments , , , , , , , , , , , , , , , , , , , , , , Leave a comment

A Golden Oldie

~~~

Hi!  My name is Robyn and I am a 48 year old wife, mother, daughter, sister, aunt, 1st grade teacher and a recovering Cushing’s patient.

My story is so very similiar to the others on this site but because they helped me so tremendously, I felt that I needed to add my own.  Until I was 40 I was extremely healthy and extremeley thin (92-100lbs. on a 5ft. frame)  My menstrual cycle had been like clockwork.  I had normal periods every 26 days.  I had had no problem getting pregnant and was the proud mother of a daughter and a son.  I had never had PMS or pain with my periods.

This all changed around 40.  My periods started becoming very irregular, I had severe cramps, crazy PMS (my husband said it was like Linda Blair with her head spinning around), and heavy bleeding.  I was diagnosed with fibroid tumors.  Dealt with that with hormones but by the time I was 45 I had Premature Ovarian Failure and the pain had become incredible and the bleeding was almost to the hemorraging point.

I had a hysterectomy in July of 2007 (I was 45).  One month later in August of 2007) I was getting out of my bathtub, slipped and fell and broke my acetabulum (hip socket).  I spent 14 weeks non-weight bearing in bed and walking to the bathroom with a walker and in horrible pain until it was decided that I would have to have a total hip replacement.  It was another 9 months before I recovered from that.  By that time my weight had steadily increased.  I thought it was due menopause that I had gone through as a result of the hysterectomy and not being able to walk much less exercise in the last year and a half.

In December of 2008 I decided to have a tummy tuck and a breast reduction because of the weight gain.  In January of 2009, when I went for my post op appointment with my plastic surgeon, I was told that breast cancer had been found in the tissue removed in the reduction.

In March of 2009, I had a mastectomy.  At that time, the plastic surgeon started my reconstruction by putting in a tissue expander.  I had poor healing and all the incisions opened so I had the expander removed.  Since then my weight has increased dramatically.  I got the moon face, the red chest and neck, the buffalo hump and stomach that looks like you are 9 months pregnant.

During this time my primary care physician just left her practice with no forwarding address.  I waited for several months to see if she would resurface in another practice and when she didn’t I had my oncologist recommend another internist.  I saw her in Feb. 2010.  She asked me what my biggest complaint would be and I told her it would be my weight gain in my stomach and how my face and neck looked.

My mother has Multinodular adrenal hyperplasia and I told my doctor that my mother thought I had Cushings.  She told me she thought my mother was right.  She did blood tests and called me to tell me that my cortisol levels were sky high and that she was referring me to an endocrinologist.  She also had me do a 24 hour urine test and a 1mg. dexamethasone suppression test.  Both were indicative of Cushings.  The first time I saw Dr. Rolbands he looked at me and said I was a classic Cushings case and sent me for a CT scan.  I had the scan and I had a tumor in my left adrenal gland.  I went swiftly down hill with symptoms.  The leg pain and fatigue became overwhelming.

By the time I had my surgery, I could hardly walk across the room and my blood pressure was 168/110 taking 2 blood pressure medications.  I had my left adrenal gland taken out on June 29th, 2010.  I am now recovering.  Dr. Rolband is very pleased with my progress in 2 weeks.  My blood pressure was 90/70 and took me off one medication.  I have lost 6.1 lbs. and the pain in my legs had gone away.  All very positive.  I started weaning from the prednisone and that has not been pleasant.  I went from 10 mg. to 7.5 yesterday and I had diarrhea, nausea, body aches and pains.  I’m better than I was before the surgery but I’m ready to feel “normal” again.

Contact Robyn

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Kirsty (kirstymnz), Ectopic Adrenal Bio

June 25, 2026

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Ectopic, Golden Oldies, Lung Surgery, PCOS, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Another Golden Oldie, Kirsty’s bio was last updated 08/18/2009.

~~~

I don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing’s syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing’s.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

lungsTogether they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing’s disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Fabiana, Pituitary Bio

June 24, 2026

MaryO Adrenal Surgery, Interview, Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Fabiana had transphenoidal surgery (pituitary) July 30th 2004.  She had a recurrence after seven years of being Cushing’s free.  A second pituitary surgery on 10/26/2011 was unsuccessful.

Another Golden Oldie, this bio was last updated 9/12/2015

interview

Fabiana will be our guest in an interview on BlogTalk Radio  Wednesday, October 21 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.

The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you’re waiting, there are currently 88 other past interviews to listen to!

~~~

Well it has taken me a year to write this bio…and just to give some hope to those of you just going thru this process…I have to say that after surgery I have not felt better! I am back to who i always knew I was….the depression and anxiety is gone and I am living life like a 24 year old should!

I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno…who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry.

My mom wasnt hearing that and demanded a script for an endo. I went….he did blood work…and metioned cushings. But nothing came back definitive…so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work.

As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist….but i knew there was no reason for my depression. Two of them told me “i had very good insight” and that I didnt need them. I started getting more anxiety..especially about going out socially.

High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out…i exercised everyday..hard….i joined weight watchers…i stuck with it. I was at 103 lbs….that crept up to 110…that crept up to 117…each time my weight goal would be “ohh if i could just get back to 108..112…115” with each weight gain my original weight goal would get higher and higher.

Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends…why was i depressed? I was becoming emotionally draining to the people closest to me…I would go home a lot on the weekends…i was diagnosed with PMDS….like severe PMS..and was given an antidepresant…i hated it it made me feel like a zombie…i stopped taking it and just made it apoint to work on fighting the depression….and the weight gain.

When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms…and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me…i went to my PCP with this and she said it was possible and that i should to talk to my gyno….I am 4’8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just “itailan” ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily…and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries…..NOTHING.(i kept thinking i was going crazy and that it was all in my head)….she also decided to do some blood work…and as i was walking out the door she said..”you know what..i am going to give you this 24hr urine test too. Just so that we cover everything”. I just kept thinking please let something come back ….please dont let this be all my fault…please dont let this be all in my head…..please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x’s the normal.

I went to an endo…by the time i got to the endocronoligist i was up to 130…i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time…in my room…and was becoming more and more of a recluse…i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings…that was it! I went to the endo and told him..i think it is cushings….he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI’s….my adrenals my pituitary my lungs….he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes….it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it…..finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits….i could not make it thru a whole day)

In April i had to change to office work…i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating…my boss was very willing to work with me and willing to hold my job for me.

July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later….i am down to 108 lbs, i have so much energy…no depression….and i dont mind looking at myself in the mirror…i am enjoying my friends and my boyfriend…(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!!

It was a crappy time…(as i am sure you all can atest to) but i learned a lot…..most importantly i was bombarded by good wishes and prayers….friends requested masses for me…a nun in brazil prayed for me…people who i never thought i touched their lives…took the time to wish me well…send an email..or call….I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey.

This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months…i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak…needless to say i love my PCP and my endo ..and that i changed gyno’s…

I just want to let anyone out there going thru this disease to know..you are not alone….and to take each day is stride…when you need help ask for it….and that this road can lead to a happy ending. God Bless!

ps- it is ok to feel bad about what you are going thru…it is a tough thing to endure…and when the docotors tell you there is noting wrong…..follow your gut…and you keep searching for the doctor that will listen… If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me…fapadula@hotmail.com…i will help you out the best i can!

Update November 6, 2011

Well- here is an update, after seven years of being Cushings free it has returned.

With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole “roundness” of my body, buffalo hump. I decided I was going to work out hard, eat right, and see – I didnt just want to jump to any conclusions. I stuck to it- and nothing…..my hair started thinning again and the acne was coming back and then the missed periods…..so I went to my PCP- told them i needed the 24hr urine and wouldnt you know…..427 cortisol level (on that 0-50 scale)……here we go again.

So back to endo- now at Penn Pituitary Center…..it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling…..but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA…….after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011.

It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication……BLURG……Sooooo on to the next step…..after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful.

I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey.

Many Blessings!

Fabiana

Update September 12, 2015

So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven’t felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of….my “new normal”.

My husband and I decided to try for a second child…my pituitary was damaged from the second surgery and we needed fertility…after 8 months of fertility I got pregnant and we had our second son January of 2015.

In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures.

So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options.

Again Cushing’s is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids….I am now on my 18th year of fighting this disease. I never imagined it would get to this point.

But here we all are making the best of each day, fighting each day and trying to keep things as “normal” as possible. Blessings to all of you fighting this disease…my new go to saying is” ‘effing Cushing’s”! For you newbies…Fight, Advocate for yourselves, and find a doc who doesn’t dismiss you and hang on to them for dear life.

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