And It's About Time There Was Some Support For Cushing's!
My name is Linda, I am 55 years old and have had so many of the cushings symptoms I read about here for years. I've just always attributed them to various other things like genetics, weight, age, etc. I, nor none of my doctors I have gone to over the years, have ever looked at the "big picture". I have a cousin, who lives out of state and recently visited, who has Cushings Syndrome from taking prednisone for asthma. She asked me if I had ever been screened for Cushings. Of course not -- I had never heard of it. So, I got on the computer and eventually found this site. Like all of you, I was astounded -- You all sound just like me!!. I hate to bore all of yall who are soooo weary of all the old familiar symptoms, but I know how eager I was to see if anyone but me had ever had this or that. So I'm just going to list them. It won't hurt my feelings if you want to tune out now!
Hypertension; chest pain; accellerated heart rate; shortness of breath; extremely poor memory and difficulty thinking of words I want to use; difficulty sleeping; headaches; dizziness (lasts a very short time thankfully); fluctuating high pressure in my eyes; pulsing visual disturbances upon exertion; indigestion/acid reflux; abdominal pain; history of pancreatitis; back pain; can feel and hear bones grinding in my neck; bones in feet/knees pop; finger that locks; joint/muscle pain and weakness; difficulty rising from sitting position; legs tremble after minor exertion; exhaustion after minimal amount of exercise; swelling of hands and feet; frequent nausea; chronic diarrea; frequent urination; extreme intolerance of heat; acne; blood vessels breaking in weird places; dozens of skin tags; large subclavian fat pads; growing hair on chin and upper lip; thinning hair on top; have recently broken a tooth. I do NOT have a red face or a really, really round face as many report. My stretch marks are not a deep purple like many report but are very wide and pink. I have a small hump -- not nearly as impressive (?) as some I have seen pictures of on this site. I have diabetes and hyperlipidemia (cholesterol 648 and triglycerides 2044. Triglycerides have been as high as 8200 when I had pancreatitis. That is what all the doctors I see nearly stroke over -- then don't even want to talk about the other stuff. Nuff said.
I live just outside Benton, AR with my husband who just retired in July from Union Pacific Railroad as a locomotive engineer. My grown daughter Alicia also lives with us and my granddogs Zoe, who is a Westie and Scout, a Yorkie.
I have just begun testing and am already frustrated. I can't even imagine being in this same boat years from now as so many apparently are. Is God trying to teach us patience?? Some of you should qualify as martyrs by now.
Can't think of anything even remotely interesting to share, so bye for now. When I get copies of my lab reports I'm sure I will have questions.
Like so many others, I am grateful for this website. Best resource there is on Cushings -- Thank you Mary O and all the others who put so much time and effort into helping and sharing your experiences with us all.
Woke up at 3:30 am with thoughts of Cushings dancing through my head! Bummer. I thought of a some more things I do/don't have. Do not have the thin, fragile skin and easy bruising that most of you report. In fact the skin on my hands and arms seem to have gotten thicker because they can no longer get an IV in anywhere but the bend of my elbow. All of the "vampires" comment on my thick skin. I also have cardiomegaly and an enlarged fatty liver -- and ankle pain --when I first stand up (this is new -- has been going on for a couple of weeks.) These and some of my other symptoms make me think acromegaly but then there's all the other stuff too. It just wears me out trying to sort through all of it. I have two uncles (brothers) who have had pituitary tumors. One of them in 1979 and the 2nd in 1995, however, neither of them had Cushings. Doctors commented on the liklihood of 2 brothers having pit tumors. Don't yall just get weary thinking about all of this all of the time!!!???
Hi everyone, I'm 57 years old and I'm from Benton, AR. I believe I have had Cushing's for many years. I have most of the symptoms that many on this board report but they have been explained away to other causes for many years, not only by my doctors, but also by me.
In looking back, I believe my health began to decline in early 1987 when I first began having problems with my blood pressure. My son was killed later that year, and so for many years, my many complaints were blamed on the anxiety and stress of losing a child . I initially lost quite a bit of weight after my son's death but sometime thereafter put it and more back on with all of it going to my tummy.
It seemed I spent much of my time in the emergency room for all kinds of symptoms including chest pain, pain in upper right quadrant under my ribs, abdominal pain, you name it, I had pain there. By 2003 my health was really at a critical state. I had a bout of pancreatitis and my cholesterol at that time was nearly 600 and my triglycerides were 8244, despite having been on medication for it for years. My liver enzymes became elevated so I was taken off the medication and was later diagnosed with a fatty liver. Instead of grief, my health care providers now blamed my problems on my weight which had ballooned up to 200, my lipids, etc. , and of course, now my age came into play -- I was probably menopausal.
Over the years I had a number of surgeries -- a hysterectomy at age 25 for uterine cancer, gallbladder removal in 1999, 2 hernia repairs in 2002, I also had 2 mysterious abdominal infections that required them to go in surgically to clean them out and then leave the wound open for weeks. I had visiting nurses coming twice a day to pack and clean the wound. I also had pnemonia and various other infections. My tummy became bigger than it was when I had my children while the rest of me remained thin in comparison.
In 2005 a cousin I had not seen in years was visiting from California. I was so surprised to see that she had gained a tremendous amount of weight, particularly the face and tummy. She was also surprised to see me I suppose. She asked if I had ever been screened for Cushing's disease and told me she had steroid induced Cushing's from meds they had her on for her asthma. I, of course, had never heard of Cushing's, but after our visit, began researching and found this site. I was stunned to learn that so many of you have the same symptoms and problems I have.
I immediately made an appointment with my pcp , whom I adore. He told me he knew nothing about Cushing's but what little he remembered fom med school, and told me I didn't look "cushingnoid" because I did not have a moon face. He stated he would do a 24 hour urine if I wanted him to. It came back normal, and of course, he said I did not have Cushing's.
I told him things I had read on this board about having to be persistent in testing and he told me he would do anything I wanted him to do if it would relieve my mind about "this cushing's idea". We did a few more 24 hour urines and a few blood draws. The only thing not within normal range was one midnight blood draw which came back at 6.7. My doctor, nor I, realized this was a little high because the lab report did not show a range for midnight. My doctor suggested I see an endocrinologist -- not because he was suspicious of Cushings, but because of my diabetes and lipids. He suggested I also discuss the Cushing's thing with him just to satisfy my own mind about it.
I think the endo I saw knew even less that my pcp did about cushing's. He did a number of 24 hour urines which came back normal. I aked him about doing other tests I had read about but he said they were not warranted unless I had a high ufc. He seemed genuinely interested in my health problems and was willing to do ufcs so I continued doing them for many months.
The endo sent me to a neurologist to do nerve conduction studies for my diabetes as it was believed I had diabetic neuropathy in my feet. The neurologist did several tests and also some labs which included a 5HIAA which came back quite elevated.
My pcp called me in for an appointment to discuss it with me because the neuro said he didn't order it. I was told this was an indicator of carcinoid syndrome which might explain many of my symptoms. After researching carcinoid syndrome I decided I needed a Cushings's specialist ASAP so I began gathering up all of my med recs.
I was stunned to find on one of my old ct reports that I had a 16 mm tumor on my right adrenal gland. No one had ever mentioned it to me. Nor had they mentioned a cyst on a kidney, nor had they mentioned something that "appeared" to be a dermoid cyst on one of my ovaries.
I made an appointment with Dr. L and had my first visit and 5 day testing with him in October, 2006. I had some high midnight serums and salivaries but all ufcs and acth was normal. I also suppressed on the dex test. Midnight serums were 12.3, 10.3, 13.3, 13.7 and a 25.0 at 9:45 (am?). I had an IGF-1 of 63 and growth hormone of 0.1. My midnight salivaries were 4.0 and 4.1. I was ecstatic! Techs messed up my dynamic MRI in Portland and were supposed to call me back in before I left to redo it but that didn't happen. Had my 2nd 5 day workup in Seattle in May and had the following results: No high ufcs again, Midnight serums of 18.1, 15.6, and 14.4 and 25.3. Acth readings were 66, 52 and 51. Suppressed again on the dex. They did a stim test on my growth hormone and my highest stim was 1.6.
Paperwork is being done to start me on growth hormone thru Bridge program. Dynamic MRI showed 2 mm tumor on pit -- Hallelujah!! Hoping I'm on my way to a diagnosis. Thank you all -- I have learned so much thru your experiences and posts. I read on these boards that isolating oneself is one of the effects of low growth hormone. When I first read that I thought, that isn't me. Ha ! Then I thought about how long I have been reading everyone else's experiences but never post anything myself. So maybe that is me after all. I have always thought that I just didn't know enough to contribute anything to the conversations. That's why I decided to do my bio -- sorry if it is too wordy -- just trying to piece it all together.
Thanks again one and all for your willingness to share your experience and knowledge.