And It's About Time There Was Some Support For Cushing's!
Hi Everyone - get ready - this is a long one and I apologize in advance. My name is Cynthia and I'm 34 years old and I live in San Rafael, California. I was raised in Tempe Arizona where I swam on swim teams and went totally crazy skateboarding and rocking out to any live music event that my mother would let me go to! I moved to Tucson in 1987 to go the University of Arizona. I was always a healthy, very active and petite person. I was also very social - a spaz - as my friends called me. I was really into music - joined a band and worked in live theatre. I still love live music and now I'm into surfing and gardening (when I have the energy). I have a degree in Drama Production with a minor in Architecture and I'm also a professional chef. I work full time managing an Architect Firm in San Francisco and part time as a Chef for a catering company in Marin California. My partners name I David and we have two cats, Ginger and Sonora and a tarantula named Sophia (Ugh!)
I noticed that my body began to change my senior year in college. I started to gain weight even though I hadn't changed my eating or exercise habits. At first I thought maybe it was just a slow down of the metabolism or that I was just being "lazy" or eating too much. So I went to weight watchers and starved myself on 1100 calories a day. I lost 3 pounds in 5 weeks. Then I kept getting skin infections and ear infections. I even ended up hospitalized for three weeks from a staff infection that went crazy in my body and nearly killed me. They tested me for diabetes at this time, but it was negative, and sent me on my way with a six months supply of antibiotics.
I finally graduated from the University in 1993 and got married - in my first year of marriage, when I was 24 years old, I started gaining weight at a very fast pace. I didn't even notice it until all of a sudden nothing fit. I weighed myself and my weight had shot up from 140 to 165. I started noticing that my periods were becoming irregular. Two months later my weight shot up to 188 (this was a lot of weight on my 5'1" frame) and my periods ceased all together. I was tired all of the time and started to withdraw from social activity.
I actually thought I was pregnant at first because my belly was getting so big and I usually carried any spare weight in my butt and thighs. A few weeks later my weight jumped to a nice round 210 and I had two negative pregnancy tests to confirm my suspicions that something else might be wrong! I noticed too that I had also gained a lot of weight in my neck and back (I had a hump!) and my once thin face started to turn into a big 'ol pancake! My face, neck and shoulders seemed to meld into one! My lower arms and legs stayed very thin and never got any larger - so I kind of looked like a ball with sticks sticking out of it. lol.
I had developed horrible bright purple stretch marks from under by breasts to my pubic area - they looked and felt like huge slashes in my skin. I was so achy and weak and nauseous all of the time and my blood sugar would crash right out of the blue. I'd get all shaky and feel like I going to freak out! I had the worst edema in my ankles at least 4 days a week and even though I was barely eating and I was exercising all of the time, nothing seemed to make my weight budge downwards.
I think the hardest part for me with all of this was the weight gain. People started treating me so cruelly. My coworkers teased me if I ate anything in their presence. I had a guy come up to me at a nightclub and say that pregnant people shouldn't be here and actually touch my belly! One of my own family members greeted me with a facetious "Hey Skinny - bet your husband loves you all the more now that you've lost all that weight!" and the final Great Insult "what a waste of a pretty face!" (Thanks to the ugly guy at the 7-11!) I was getting very depressed and suicidal and I never left the house anymore. I felt like a failure and useless to anybody. At this time I finally got into see an OB-GYN and a Psychiatrist at the Tucson medical center. And thus began my "Journey of Doctors".
I went from OB-GYN to OB-GYN they did sonograms and a few tests and said everything was fine and then would send me off to the next. They even told me the edema was from the heat and I bought it. The psychiatrist I was seeing said I had a "cushinoid appearance" and referred me to an endocrinologist. He had me do a 24 hour urine collection and said it was normal, mumbled something about cyclical Cushing's and sent me on my way. He did recommend that I consider taking the UFC test again in a year. A month later I finally got an appointment in Phoenix with a well respected OB-GYN and he said it looked like I had PCOD. Told me to give up on having children and that he wanted me to go on the pill and see him in a three months. He never ran a single test EVER.
Then something weird happened. My weight started to drop, the edema was less frequent, my neck began to emerge from all the fat. I started taking the BC pill after my weight was down to 175 from 210 and my periods (actually withdrawal bleeds) began. Unfortunately at this time my marriage ended - my husband couldn't deal with changing looks, social withdrawal or that I might be infertile. I moved to San Francisco in 1996 to be near my closest friends. I thought perhaps all of my problems "were in my head" as so many doctors had told me. Perhaps it was the stress of a bad marriage. I even heard that you are unconsciously gaining weight to protect yourself from your marriage. And believe it or not I actually believed this malarkey for a few more years!!
My weight settled at 155 - way above my normal weight but better than 210 on my small frame. I now had a lovely "skin pouch" with a bunch of stretch marks, which had faded to white, that got in the way of me ever wearing jeans. I was still occasionally mistaken for being pregnant and that was hard to handle. I still had the edema too and let me tell you there's no way it was from the heat! Have you ever been to San Francisco!!
I had way more energy. I was working as a chef and starting to enjoy life and then I was blind-sided again. I tripped in a parking lot (yes tripped) and tore both my cruciate ligaments in my right knee. I had to have reconstructive surgery and I was out of work for 6 months. During this time an OB-GYN wanted to verify if I really had PCOD and not Cushing's. He ran tests (including another UFC) and said they all appeared normal, but put me on metformin just for good measure. I was sick all of the time from this drug. It did nothing for me but make me more hypoglycemic. I went off the drugs and just went about my life for the next couple of years trying to cope with recovering from my surgery and getting into better shape and losing more weight if possible.
Then I met a really wonderful man David at work (my current partner). We enjoyed backpacking, hiking and just hanging out together. I thought everything would be fine. We started talking about marriage and he didn't even care if I couldn't have children! I was in the best shape since I had that "episode" a few years back.
In 1998 I had a yearly physical done and they said my thyroid tests weren't normal. I had started having horrible palpitations, flushing and I couldn't sleep - I was having horrible edema again and I was peeing ALL OF THE TIME! And then I started to gain weight again - I was up to 180! I thought I was going crazy. I was sent to another Endo, supposedly the best in the field out here. He ran some tests and said that I had elevated Chromogranin A and thought maybe I had a pheochromacytoma or hyperthyroidism (I guess some people get weight gain from this - I thought that only happened with hypothyroidism). He put me on Spironolactone and Atenelol. Lowered my pill dosage as he thought this might be causing the edema (even though I had edema way before I ever took BC pills!) I tried to tell him about the PCOD or possible Cushing's stuff in the past - I brought him a picture of what I looked like before I had ever gained weight and what I looked like only a few months before.
And he pushed it all away and said he was starting from scratch. I got an adrenal CT scan and he found no pheo's, I peed in more bags than I can tell you about! I did another UFC after begging him! ALL NORMAL.
I was freaking out - I just didn't want to balloon up again. He said that I was healthy and that there was NOTHING wrong with me. He said in fact that I wasn't fat - it was just loose skin and what I needed was plastic surgery. He referred me to a reconstructive surgeon at San Francisco's UCSF. After consulting with him I decided to have a full abdomenoplasty and even some liposuction, to remove all of the torn up skin and adipose tissue that hung from the front on my body and the fat under my chin that I had never lost. The surgery went well except that I had a really hard time recovering. My body kept rejecting the stitches. I ended up with a secondary infection that put me back in the hospital for three days. I finally healed and I was a flat stomached, nicely formed chin, size 12, yet I still weighed 180 pounds. I started to gain weight within just a few months after the surgery. I would go to put on some piece of clothing that I'd worn the week before and all of a sudden it just didn't fit. I still had severe palpitations and a racing heart rate even on the atenelol. I started getting severe edema and MAJOR mood swings. I was bloated all of the time and had horrible acid reflux. I tried altering my diet and over the counter remedies. Nothing seemed to help. I got put on Aciphex (this brings the total of daily medications to four!) I started seeing a therapist and she put me on antidepressants. (That makes five!) They made me feel worse (and I'm now starting a lengthy withdrawal off of them).
David and I decided to move to San Rafael which is just north of the Golden Gate Bridge, he thought maybe the stress of living in the city was causing all of my problems.
We've been here for eight months now and let me tell you it's peaceful here. Stress free living if you know what I mean. But to no avail my periods stopped the first month after we moved here so I stopped taking the pill. Again I though maybe I was pregnant - how else could your periods stop when you are on BC pills? My weight has shot up to over 200 and my whole appearance has changed. I basically flushed $12,000 dollars down the drain on plastic surgery. Now I'm in debt and I have a very full face and my neck is so fat that it gets in the way of things. I can't even zip up a wetsuit over my neck anymore. My lovely hump on my back now touches the back of my skull! My face is always red and greasy and I'm now getting what looks like age spots on my cheeks. I have skin tags growing in my armpits and around the base of my neck. The skin around the base of my neck, mouth and in my armpits and under my breasts has also turned a strange orange/tan color. I normally have very pale almost "translucent skin" and this looks really obvious. Any exercise makes me feel so hot and turns my chest and face so red that it feels as if I've been sunburned. I've always had clear skin even during the first "episode" but now I have acne all over my face, back and arms. I'm itchy all of the time and the edema in my ankles is so bad I can barely walk. I'm basically a hairless blonde person but now I have this weird stiff white hair all over my cheeks and neck and the back of my arms. I ache all over all of the time. I've started snoring - in fact so loud that David has been sleeping in another room for the past two months. My energy level is non existent and I can no longer do all the things I enjoy. I've quit going out except to work and home again. And I'm such a moody person now that I can barely stand to be around myself. I still have major palpitation and I'm depressed all of the time. All I want to do is sleep and even if I can actually sleep a good eight hours I still feel as if I've not gotten any rest.
I went back to my primary care physician telling him what was happening and he sent me back to the Endo that I had been seeing. He ran a few blood tests and said everything was fine. He even said to me, "you don't look bad and who wants to be a skinny little thing anyway", my response, "this isn't about my weight this about quality of life - and I have none". I asked him about the amenorrhea and he said it was from stopping the pill. "But my periods stopped before I quit taking the pill and what about the first time this happened to me". He said "was I treating you at that time - no - so how should I know why you didn't have periods before, you're being paranoid". I asked about the tumor marker and he said it could just be a fluke. I asked him about a pituitary or adrenal tumor he said my blood cortisol was normal and the CT scan done two years ago was normal. I left feeling completely pissed off and determined not to go down without knowing what was wrong with me.
David works is medical research at UCSF and he got me in to see a well know pituitary specialist there a couple of weeks ago. I took my list of symptoms, my photographs from before and after - I didn't even need them - he took one look at me and said Cushing's. He ran a ton of tests and had me do a UFC. He did blood work to rule out PCOD and he is convinced that is not what is causing me the problems. They were all VERY normal. The only tests that were abnormal were the Chromogranin A tumor marker, which was still elevated, and the UFC. My number was 58 (2-30 being the range). He had me do the dexamethesone overnight test last week.
He called me two days ago to tell me that the test was normal and that he didn’t think that I had Cushing's after all. My track record with doctors has not been great so David and I prepared for this. I asked him if the dexe test was 100% accurate and he said 99.8% accurate. I asked him if he thought maybe it was cyclical Cushing's. He told me that there really was no such thing. He'd only seen two percent of cases out of the 500 hundred patience (10 out of 500) he'd diagnosed - so I said, "then it does exist - could I possible be in that two percent?" "No, most likely not." I asked him if he knew of anything that would cause all of these symptoms. He said PCOD - but he'd ruled this out and he'd never heard of elevated cortisol in patients with PCOD. I asked him if he would do a three day UFC test - so that we could rule out cyclical Cushing's and said he'd never heard of this test - even though David found reference to this in over SIX well know medical journals. He said it might be worth doing another UFC in a year and wished me good luck. And that was it.
I'm still in shock. I've taken that last two days off at work and I have no idea where to turn. I'm about to lose my job due to having so many sick days and worse David wants to postpone our marriage until I'm better - what if that never happens. I've lost most my friends and the few that remain don't want to hear another single thing about doctors and they don't understand when I say I don't have the energy to do anything, even going to a movie. I'm thirty-four and I feel like my life is over. I'm still convinced that there is actually something physically wrong with me and that it's not all in my head. I'm afraid that I'm going to die - especially when my heart is racing and skipping beats and I can barely walk up a short flight of stairs. After much research I'm convinced its Cushing's so hopefully over the next year I may get some answers and that to date is my long story.
Thanks so much to all the wonderful people who put this website together. I would probably have totally given up if I had not run across this site and read through all of the message boards. Your stories are heartbreakingly familiar. But in the stories that you share, even in your misery, anger and confusion I have found hope. Thank you.
The first picture is before I got sick.
The second one titled "during first bout etc." is 6 months after I started getting sick,
"the in between phase" and a sort of current from March 2003. (about 20 pounds ago!) I wish. I'll send a more recent one if I can find the courage to stand in front of a camera this month.
Once again thanks so much for this site! I do believe you may have saved my life as I got the strength to keep pushing and moving forward even in the face of many idiot doctors. I may just have gotten a final diagnosis as of Friday!
Much news since my last udate.In late 2002 I finally got a diagnosis of cyclical cushings (with mini cycles within each "grand cycle") after a new endo looked at all of the pieces of the puzzle; the high chromogranin A tests, the PCOS tests that ruled OUT this disease and my continuing lack of menstruation, muscle tests, my appearance, and then I had more than three elevated UFC (not supper high but still out of the acceptable high range) and finally a dexe suppression that didn't supress (this was my third one and the only one that didn't suppress) and the search for the source was on.
Pituitary was most likely the source.
But low and behold I went into a "full remission" which is what my new Endo called it. All of my symptoms went away again and all of my labs became normal again - I felt great again. He said why fix something that isn't broken ...for now.
Unfortunatley my relationship was too stretched and wrecked, much like my abdominal and neck skin, and after 5 years David and I seperated for good.
The good news is that I had five years of good health. My weight dropped off. I got my periods back. My appearence started to normalize.....oh yah and the ability to have normal sweet sweet sleep patterns came back! My Chef career took off. I dated and had fun again. Moved into my own place in the city (SF).
In 2007 I met a wonderful man - I felt trepidatious about sharing my Cushings past with him but I had to be realistic....it could and most likely would come back. Luckily I never had to approach the subject, turned out he had googled me and already knew all about it. He let me know that whatever came he would be there for me. We were married in 2008.
Fast forward to July 2008. I started having anxiety and sleep problems.....Oh oh this felt familure. I started to gain weight and have irregular periods. Oh no....went to my PCP and due to my past diagnosis I didn't have to fight anybody on getting a UFC. The results were shocking. For the first time my UFC was over 2 1/2 times the normal high limit. I want to and Endo this time as my previous one had retired. He did some basic tests. And then lost the results.
So I said I'm not messing around this time. I went right to Dr. Friedmen. He found my case curious and interesting. Specially with all the cycles, with cycles within cycles, and my family history of endocrine tumors, my grandmother's agromegaly and my high Chromogranin A tests. I did the late night salivary cortisal tests for the first time and had my Growth Hormone tested for the first time. He wanted me to have a pituitary MRI but they were unable to get us in while we were in town. My GH was low and my salivary was highest in the normal range.
My local endo was able to get the MRI done through my insurance. And lo and behold the MRI revealed a tumor 8mmx6mmx5mm. I switched endos due to the fact that my old one never followed up with me and had lost test results. And the new one that I now have I couldn't love more.
I have an inferior sinus sampling set up for early June to see if the tumor is really there and is the cause of all these years of problems. He is also the first Endo to really pursue the MEN1 possability and he is going to be testing me for this genetic disease. More to follow (PS. I had an MRI in 2001 the radiologist said there was no tumor yet my 2009 MRI looked exactely the same and three out five radiologist saw a tumor - how is this?)
Don't anybody ever give up - your life could be at stake!!
Before Cushing's [Photographer: Cynthia's family]
During first bout of sickness [Photographer: Cynthia's family]
In between [Photographer: Cynthia's family]
Sort of Current, March 2002 [Photographer: Cynthia's family]