Michael B’s Story. Michael B was first diagnosed with Cushing’s in 1979 and had a bilateral adrenalectomy in 1980. In 1983 the symptoms reoccurred and he had a third adrenal removed in 1983. He then developed Nelson’s syndrome and had his pituitary (plus tumour) removed, followed by another pituitary surgery then 5 weeks of radiotherapy.
This Golden Oldie was last updated 06/07/2008
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I was diagnosed with Cushing’s in late 1979 and had a bilateral adrenalectomy in 1980. After the operation my weight reduced and my blood pressure stabilised to normal. In 1983 the symptoms re-occurred and I had a third adrenal removed in 1983 (this was found by the use of radioactive cholesterol isotope injection).
The anterior pituitary is the anterior, glandular lobe of the pituitary gland. (Photo credit: Wikipedia)
After this I felt good until 1987 when I developed Nelson’s syndrome and had my pituitary (plus tumour) removed. Again all went well until an MRI scan discovered that the tumour had returned.
In 1998 I had this removed followed by 5 weeks of radiotherapy in the hope of preventing a further growth of this tumour. To date and several MRI’s later it seems to be working.
In the early days my symptoms were all physical e.g. moon face, high blood pressure excess weight, abdominal striae, localised headache, I never suffered from depression.
I write to reassure people that it is possible to live a normal life after Cushing’s. Keep up the work on the website. I did not have the luxury of so much information. My information came from trawling through my local library for information for, like others, I got little information from my doctors.
After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!
During her too-short life, she provided help and support to other Cushies.
Hi y’all! I will try to make this short, but there is a lot to say.
I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.
At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.
Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.
Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?
Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.
At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.
At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.
Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.
At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.
Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.
So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.
By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?
Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.
I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.
In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.
But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)
Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).
Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.
When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.
Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.
Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”
Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?
I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.
I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.
So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.
And, I’ll keep you posted.
Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.
Be well, my new friends,
Kate
p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.
Hi my name is Kristi and I’m seeking any help or advice on Cushings.
I had always been active growing up into sports, running, weight lifting and horseback riding.
27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy. Less then a year later I was carrying my second daughter. I had no appetite and could barely eat but was gaining 10 pds every other day. My blood pressure soared and I was diagnosed with pre-eclampsia. I have been sick ever since I gave birth.
In the past 20yrs I have put on over 150 lbs and I can’t get it off. I was told I had a fatty liver and my cholesterol and triglicerites are off the chart. I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/ I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping. Get cyst on my breast, head, ears and pubic area. Have little hard bumps on pubic area that never go away. No sex drive left for husband and even when we are active it’s very painful.. Major swelling in face, neck, legs and feet, backaches, headaches. When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair. I sweat even in winter. I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast, behind neck and arm pits.
Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit. My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery. It has been 5 months and I still can’t heal. Have been packing the wound every day and seeing the surgeon every 2 wks. Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.
Today I recieved a call that the urine test I took for cushings came back with normal levels. Needless to say I sat down and sobbed. I am 46 yrs old and I have been sick for half my life. I have seen so may doctors, been through so many surgeries and painful testings. I have been told over and over that there is something wrong but the Doctors can’t find it. I thought cushings was the answer and that I could finally get treatment and get better. I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers? Where will I get the strength?
Hi I’m Becky a 34 year old wife, mother of twins and teacher.
I’m having surgery to remove a pituitary tumor this week and am told it will really help to alleviate the Cushings symptoms I’ve had for years!! I wish I had had this diagnosis sooner but I know I’m lucky to have it now as I had planned on bariatric surgery as my last hope.
The opening in a GE Signa MRI machine (Photo credit: Wikipedia)
When the headaches became too much to handle and my face went numb I was given an MRI and now I know the truth.
I’m new to this, scared yet hopeful. I’m determined to get control over this but still, this is hard for me.
I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.
Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.
I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.
When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.
In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.
I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!
I’ve been looking at this board for a little while as my 17 year old daughter developed a buffalo hump last November. She’s not overweight at all but does carry a lot more weight than the rest of our family around her middle and chest. She’s a different build entirely. Her arms, legs and hips are relatively skinny in comparison to her mid section, though she does have very long legs so perhaps that’s natural too. She’s tried to tone up but the weight does not come off easily.
The hump looks weird! It sticks out a lot. Her neck used to be flat/straight down. I’ve looked at old photos to compare.
I have 3 other children, a 21 year old son who recently discovered he has fused cervical vertebrae in his neck which has been the source of his pain for the past few years (there since birth apparently), a 14 year old daughter who is healthy and a 12 year old son who was diagnosed with Leukaemia last August (he’s doing very well)
My daughter’s been referred to a plastic surgeon for hump removal since it causes her pain and looks ugly. At first we were told it was a lipoma, nothing to worry about, but the plastic surgeon wanted to check with a senior doctor since it was not just a lipoma but a buffalo hump. I’m waiting for an appointment to hear the outcome of her enquiry to the senior doctor but I spoke to her secretary the other day and apparently they are not worried about it. An MRI has shown that it is indeed a fatty lump.
She’s had no blood tests or any tests at all. She does not take any kind of steroid medication.
Her symptoms are:
the hump
daily headaches
severe anxiety
occasional exhaustion
occasional throbbing/aching in or around the hump
weight gain around her stomach/chest
She does not have:
thinning skin
stretch marks
excessive thirst
excessive hairyness
I’m worried since two of my other children have recently been diagnosed with quite rare conditions. Normally I would say the chances are that it’s a fattty lump that just happened to appear there, liposuction it off, job done. However the odds have not been in my favour this past year! What if she does have a tumour somewhere? that’s my worry and things are moving too slowly for my liking. Next appt with plastic surgeon is 24th April.
I will post some photos of her and maybe some of you can tell me what you think. I can’t see any fat pads at the front but I’m not entirely sure what I’m looking for.
I’ve made an appt with my GP for 21st March to ask him to refer her for tests.
I have been seeing the endo for the last couple of weeks. Lots of blood tests, saliva test, 24 hour urine test. Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.
Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance. First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH. Doctor said possible cushings. Have had extreme fatigue, beard on chin. Muscle and bone pain consistently. Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia. Appt. with endo tomorrow to get results of 24 hr. urine test. Salavia test said was normal.
Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all. She said that I had the hump, muffin top, and belly fat, lean arms and legs. Eyes are puffy all the time now. Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free. Eat lots of vegetables and fruit as well as a little protein. Have not had a mri or cat scan yet. Probably will be next on the list. Will post after my doctor’s appt. tomorrow and update my bio.
I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.
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 🙂
Hello, my name is Dana. I am a 43 year old female. I live near Dallas, TX. I attend college and spend allot of my time taking care of my crazy family, whom I love very much. After reading posts on this site I decided to document my symptoms and experiences.
A couple of days ago I was discussing my endoscopy and colonoscopy results with my mother-in-law. They showed I have GERD, esophagitis, stomach erythema, duodenitis, hiatal hernia, hemorrhoids, nine polyps, and IBS. Wow. After all that she asked me if I was checked for goiter. GOITER? I told her I was just fat. Over the last several years I have gained weight. I did the Atkins diet in 2000 and lost 70 lbs, but gained back 100. Most of my weight is in my abdomen, face and neck. I have relatively small legs, hips and rear. I have had several people think I was pregnant and told how disproportionate my body is. Recently my kids and even my 4 year old grandson have commented on my weight and health. I have noticed that my neck is getting larger, despite being the same weight for a while now. I have poor eating habits, which I am trying to change. I only eat once or twice a day and I am an active person. I do not exercise except for walking. After my mother-in-laws comment I decided to do some research.
I have almost every symptom of Cushing’s. Central obesity, thinning skin and bruising, especially on my hands. Oral candidiasis, axillary and cervical skin tags, round, fat, red face and neck, oily skin and hair with recent increased acne, headaches, fat pad on back of neck, blurry vision, fatigue, back pain, arm weakness, heat intolerance, pain in joints and swelling in hands and feet, thirst, facial hair, and increased heart rate at weird times. I have been treated for depression/bi-polar for several years now. It took two and a half years of experimenting to find something that would keep me stable. I still have emotional instability, depression, cognitive difficulties, and mood swings. I have many stretch marks but only a few are red. I have very fair skin so my coloring is not the same as others. The only symptoms I do not have are irregular periods. I do have what feels like a soft mass under my chin fat. There are lymph nodes under the area, so this could be the cause.
I pray I am able to find a doctor who will not dismiss my symptoms as some of you have experienced. My first appointment will be next week with my primary care physician and we will go from there. Wish me luck and I will update regularly.
Does anyone know of a good endocrinologist in the Dallas-Ft. Worth area?
My name is Kathy Casey. I am a 63 year old retired school nurse. I am married with two wonderful sons and a grandson. My husband and I live in the mountain town of Mt. Shasta in northern California. I have always been athletic.
In 1995, I was diagnosed with a pituitary tumor. At the time the only symptom I was aware of was a severe headache. I had a transphenoidal resection by Dr. Wilson at UCSF Medical Center followed by radiation therapy for 23 days. At the time they said they could not remove all of the tumor.
In 2008/2009. I exhibited symptoms of Cushing’s and my cortisol level was outrageous, and I had to be hospitalized initially for a potassium level of 2. I returned to UCSF and Dr. Anwar Sandeep operated . By removing part of the tumor. My Cushing symptoms resolved. However, he said that the tumor was not encapsulated and was invading the cavernous sinus and stella turcica so it was still not possible to remove it all.
I was OK until December 2013 when I began exhibiting the symptoms of Cushings. One of my 24 hr. urines was 14,000. I had to be hospitalized for a potassium level of 1.9. Dr. Heaney said he has never seen a cortisol level that high. This time I decided to go to the UCLA Pituitary Tumor and Endocrinology Program where they were more oriented to follow-up and treating this disorder. Dr. Bergsneider decided that surgery was not an option. He and Dr. Heaney decided radiation was not an option. So now I am being followed by Dr. Heaney to see if medication can help.
I am now on Cabergoline 0.5 mg three tabs twice a week and Signifor 0.9 mg subcutaneosly twice a day. I think they are alleviating some of the symptoms. However, the Signifor caused my blood sugar to rise, and I had to go on Metformin which is causing nausea to a point where I have a hard time eating.
Anyway, this whole situation is depressing and overwhelming. I am tryng to stay positive, but I wonder how it will turn out. I am fortunate to have a supportive and helpful husband.
I am interested in communicating with people who may be going through a similar experience and learning more about this rare condition.
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