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Michelle's Story

I am 24 years old now and my problems all started a few years after my son was born in 1999. I had gone back to my pre-pregnancy weight and was always active, running about 5 miles a day. I was at about 145-150 pounds, but I was not fat.

The first thing that started happing in my case was I started to gain weight and become tired all the time for no reason. From February of 2003 to September I had went from 145 pounds to 175-180 pounds despite no changes in my eating habits and exercise. I started to notice that I was growing facial hair, then my arm hair started to darken and get thick, so much I had to shave them so I wouldnt look like a man. I started to experience shortness of breath, extreme sweating, thinning hair, missed periods for months, alot of acne everywhere. My face and stomach just kept growing.

I made an appointment with my primary care dr. who I had been seeing for 6 years who just told me I was lazy and I needed to exercise. I continued to complain untill she ran a thyroid test on me which showed no problems.

By the beginning of January 2004, I was packing on the pounds, feeling worse everyday, I went back to the dr and she said basically it was all in my head, I was fine, just fat....Be more active....I finally gave up.....I guess I was just fat..

On Nov 19, 2004 I went back to the same dr. after talking to a friend from work whos late husband was an endocronoligst, by then I was at 208 lbs., she had mentioned to me after hearing me complaining about my symptoms and weight gain that she had noticed my "moon face" and asked if I had ever been tested for Cushing's. I had never heard of Cushing's before and immediately went online for answers. I talked to the dr about it and on my medical records from that day, it clearly states "she thinks she has cushings disease" but she wouldn't test me, said it is so rare but she would test me for P.C.O.S. Since I was not having regular periods, well, the test came back negative even though I had 9 cyst on one ovary and 7 on the other...another dead end.

I was still feeling worse by the day, on 1-07-2005 I decided to go back....This time I had the "flu" weight was up to 212...She gave me diet pills, Meridia 30 mg..and my blood pressure was really high so some hctz for swelling and to help with the pressure...Said on the report from this visit" denies S.O.B., chest pain.." Hello, thats why I kept going back.

I was so fat by now, I could hardley keep my breath just doing minor things....I started the pills, they made me really sick, so sick I thought one night my heart was going to beat out of my chest and I was going to die...My heart rate was well over 100.

On 03-03-2005, my next apointment I lost a whole 7 pounds but felt sooo bad. I quit the pills. The blood pressure kept going up, so did my weight but still, I was told basically by now I was a hypocondraic and it was all in my head and maybe I was depressed, thats why I was gaining weight. I tried everything, not eating to eating 700 calories a day, I would lose 20 pounds and put on 25, I tried l.A weight loss, spent $1000.00 on there bars and alot for the program itself to only lose 20 lbs and then be repremanded by the staff for "cheating" when the loss halted, I was doing everything right....It just started comeing back.

I finally made an appointment again on the 11th of August now at 220 lbs I was feeling worse now than ever...Headaches, nausea, the blood pressure was still high...High heart rate....My face and neck so swollen you couldn't hardley tell I had ears...My stomach getting big purple marks..Looking more pregnant than I did at delevery with my son....Blurred vision .....Dizzness...But again, I was nothing...She stated on my record from that appointment "visual syndrome" what the heck is that.

By October of 2005 my fiance' was at his wits end, I was getting worse and my dr. was not listening, I was missing work, laying around, I could hardly get out of my own way at times, he told me he was going with me to my next appointment which was on October the 11th. When we got there, he insisted she refer me to someone else, she finally agreed to send me to the infertility endocronoligst here in town. My appointment with him was on 10-31-2005, as soon as they seen me they knew there was a problem, the re-tested me for PCOS, I had it, really bad, 19 cysts on one overy and 11 now on the other...But...He asked me "have you ever heard of Cushing's Disease?" I told him about the conversation with my co-worker and the dr and he said he was making me an appointment with a medical endocronoligst, he said, I think you have cushings.......I was thinkg in my head.......Oh my gosh....Maybe I have found my answer....He ordered blood test for me to get before my appointment with the endo as well as the first of many 24 and 48 hour cortisol tests. ...They were all so far off he said he couldnt believe my primary care dr waited so long to refer me out for help.

My appointment with the endo was on 11-14-2005, I was at 230lbs, he had already went over my records and was ready for more test, this time, he ordered an mri and a ct scan...And by going over the labs with my blood sugar over 500...I was diagonsed with type 2 diabetes....He put me on some meds for the diabetes as well as the S.O.B. And high heart rate, I went for the scans on November 17 and 18, 2005, at my next appointment on the 27th, now up to 235 lbs or so, he told me I had a tumor on my pituitary gland(8mm) and refered me to U.A.B. to meet with the neurosergen there.

On Dec 5th I was feeling so bad, I had my mom take me to the dr. My blood pressure was so high, they made me sit in a chair with arms and told me not to move, my heart rate resting was 135-140. He sent me to the hospital right then, they took me straight back...I was in the E.R for 12 hours ...They gave me lasix which almost killed me, made my heart rate go to 195 and I was really thinking, am I gonna make it out of here........I was finally released on the 7th.....They ran every test I think that could on me at that stay........I seen the heart dr, the lung dr......He set up a sleep study for apnea...Now I had to add apnea to my list of findings.

My appointment at U.A.B is on January the 17th 2006, I just hope that now 3 years and at 248 lbs as of 01-12-2006, they can remove this tumor and I can return to normal.......Or close to it......I am so glad I came across this site......I feel like I could sign my name to most of the stories I have read.......I don't feel alone anymore....I cant wait till my appointment.....

Update November 15, 2006

Just wanted to give an update on how things are going for me....It has been a year today( 11-14-2006) since my first appointment with my endo....he is GREAT!!!!!...and is the reason I am here today to give you this update.

On January 18th 2006, I had to get an inferior Petrosal Sinus Sampling done at the University of Alabama in Birmingham. During the procedure in which I was awake the entire time, the Dr. ran test to see what my cortisol (ACTH) levels were at certain times ...when I was laying on the table, I had an allergic reaction to the chemicals they were using and turned bright red and was nauseated, I held out and the gave me a dose of medicine to get me through, the test was a success.....my cortisol level(ACTH) was extremely high...5,927 to be exact, the normal level is between 9-27. I was totally scared to death..

I got home from Alabama late Thursday night.....Early Friday morning, I got a call from the nurse from UAB, she said the test was so high they needed to do surgery right away to remove the tumor...she asked if I could be back on Tuesday for another MRI and CT scan.

MY family and I left on Monday and on Tuesday morning, reality set in.....I went in for the MRI and then to the pre op and to see my Surgeon. He discussed the surgery and some possibilities to me ......I thought I was just going to get the tumor removed and so did everyone else...

so, at 5:00 am on Wednesday, January 25, 2006......I went in for surgery and my life forever changed.... they went through my nose and to the Pituitary gland.....when they got there, they couldn’t see a tumor....they had to remove the whole pituitary gland and the path test revealed that the tumor was enloged into the pituitary since it took so long to get a diagnoses....

I woke up in ICU a while later and my family was allowed to come in and see me....I had my nose packed with what seemed to be gauze rockets and a killer headache...as few hours passed and I was told my potassium levels were off, ...I got Diabetes Insipidus...I was severely uncomfortable...my nurse had her hands full and thank god my mom is an RN, they let her stay in ICU with me and empty my catheter that was filling up every 4 minutes......that night was the worst in my life....I think I watched every episode of mash that had ever came out and by morning I couldn’t wait to get the arterial lines out of my arms and the cath out....and those rockets up my nose out...

I was moved to a private room later that day and had to stay a couple days ......I left the hospital on 60mg of corteff ....since all that, my thyroid has quit, I have to take DDAVP, coreg for the blood pressure and high heart rate and a long list of other meds....my job fired me for not being able to go back to work, I had to get an attorney and I was approved on OCTOBER 30th for my Social Security.........

I do feel better that before surgery but I also have lots of days where I cant get out of bed....my memory is terrible...I have no energy ...on a good note, I have lost about 70 pounds without having to do a thing and I hope it keeps coming off.....I am depressed I cant have anymore kids because of the loss of my pituitary gland.....I am in full menopause which at 25 years old I sympathize with you older gals...........hot flashes and all........I hate them.. I have bad headaches and the Dr. put me on topamax.......and my bones and joints ache like I am 100 years old, I have a handicap thing for my car and when I get out at a store, people make remarks and it really hurts but I AM ALIVE!!!!!!!!!!!!!!!

I Feel like a SURVIVOR and I am so grateful for my endo and the Staff at UAB....for all of you without a diagnoses, never give up.......I almost did but someone will eventually listen.........and when they tell you its all in your head.........let them know that they are probably right.........you are likely to have a tumor...............

this site is great!!!