And It's About Time There Was Some Support For Cushing's!
Hello, my name is Valerie. It's been a few weeks since my doctor uttered the word "Cushing's". I have spent numerous hours on the internet trying to learn more, and finally found this site. This is my story...so far.
Since some symptoms remain constant daily and others seem to vary from day to day, it appears that is time for me to regularly document my condition for future reference.
I can’t say that I have always been in “perfect shape”, but eight years in the Army certainly keeps you within the military’s acceptable physical standards. I left the Army in December 2000, four months after the birth of my daughter (2nd child). I gained more weight with her than I did with my son, (the stretch marks I got while pregnant with my son, doubled with my daughter) but within a few months, I was slimming down nicely. Life got very tumultuous in January, as my husband and children and I, left Texas (and the military) and moved to PA. I began to think that my weight gain could be caused from a combination from the stress of the move and the “winter blues”.
I do know that when I first went to my physician’s office (I saw his Physician’s Assistant) in May 2001, I was complaining of fatigue, weight gain and feelings of depression/anxiety. I think it was around that time I noticed that my scalp was extremely sensitive, achy to the touch, but I don’t think I thought that was important enough to mention at the time.
I believe around that time, my weight was somewhere between 174-180, but I’m not positive. Still, this was at least 10 lbs above my “high, normal weight”. I suspected that since hypothyroidism ran in my family (both Mother and Father), that this may be the problem. All results returned “normal”. The solution, Paxil, an anti-depressant.
Paxil made me feel better emotionally, but it killed my sex-drive, so I went to see a female psychiatrist who prescribed Celexa, with the assurance that this had the least sexual and weight gain side affects for this kind of medication. I guess you could say I felt better emotionally, but the fatigue and weight were still an issue.
I went back to college full-time in September 2001. I know that I did have a physical with the Physician’s Assistant prior to classes beginning. I’m not sure what I mentioned during that visit, but I’m positive I didn’t tell him that I “felt great”.
In October 2001, I went for my annual OB-GYN appointment. I complained of cramping during ovulation. The doctor changed my BCP from Estrostep fe (the one I had been taking since the birth of my son in April 1997) to Yasmin. He said this was necessary, because he detected slight ovarian cysts, and a higher dose of estrogen was needed to get rid of them. That seemed like a reasonable solution, since the ovulation-cramping has stopped. I also started working a part-time job helping a handicapped woman in mid-October.
Months had passed and although I was doing very well in school (GPA 3.9) and my marriage and family were doing well, I noticed that I had difficulty concentrating and required more and more sleep. I would leave school, with the intentions of going home to do housework before picking up the kids from daycare or going to my PT job, but would end up napping for hours. I would think to myself, “I’ll just sleep for 30 minutes and then get up to clean.” When the alarm would go off, I would be so exhausted that I would either reset it for a later time, or hit snooze every nine minutes for 2hrs. The only thing that would FORCE me out of bed was the fact that I had to get the kids and start dinner or had to get to work. I NEVER woke from sleep or a nap feeling like I had enough rest.
In the meantime, my weight steadily increased. Once able to focus my attention on my weight and successfully drop unwanted pounds, I now felt powerless. All my efforts to get in shape or lose weight were failing. At the end of March, weighing 202 lbs, I joined a gym in an attempt to try to “jump start” my metabolism. I forced myself to go at least 3 times a week and I tried to eat well at home. Not satisfied with the minimal results I was seeing, I joined a weight-loss program, which guaranteed results. I seemed to get more tired every day. The weight-loss supplements from the program that are designed to give me energy did NOTHING.
Soon, I was too tired to go to the gym and opted to sleep whenever possible. I wanted to get my children right after my college classes were over, but I knew that I was so exhausted, I would not be a “fun” mom/playmate and that they would have a much better time with the kids and care-providers at daycare while I rested for the evening. Both my husband and mother questioned my motives, insinuating that I was “avoiding my motherly obligations”. This was very difficult and hurtful, especially since they had no way of comprehending how I could be so tired. What could be so exhausting about a few college classes?
In May, I noticed that when I would lie down to sleep, particularly at night, I felt like I was being choked by my own neck. On 13 June 2002, I went back to see the Physician’s Assistant (only because the waiting list for the doctor was weeks long and I wanted to be heard immediately). This time I was very upset about my fatigue and weight gain. The PA noticed that my neck appeared “thick” and said that my thyroid seemed slightly enlarged. He ordered more blood work and a thyroid ultrasound.
On 17 June 2002, I decided I was not well enough to continue my summer courses. The same day, as I was accompanying the house inspector around my new home, I noticed that I had a lot of pain in the back of my right leg, which made it difficult and painful to stand for any length of time. I would have to squat down or lift and bend my right knee just to get a little relief. In the days that followed, I noticed flu-like backaches and different aches and pains that seemed to travel around my extremities. Sometimes the pain was in my wrist or forearm, sometimes in my calves. I also began to notice that I would have “hot spots”. Certain places on my body that did not feel warm to the touch but would “burn” internally.
I phoned to hear the results of the tests and the nurse reported that the “ultrasound showed an enlarged thyroid with no mass and the blood work came back ‘normal’ again”. (This time my T4 free was 0.8 and my TSH was 4.45.) Frustrated, I told her “well, I don’t FEEL NORMAL and I want to get in to see the Doctor to discuss steps needed to get to the bottom of this). Of course, my physician’s waiting list was still a mile long, so she made an appointment with a doctor (a “floater” who helps out once a month or so) for 27 June 2002.
This doctor agreed that most of my symptoms appeared to indicate hypothyroidism, but since my TSH level wasn’t high enough (apparently it needs to read 15-20 before it can be confirmed as hypothyroidism) he wanted to refer me to an endocrinologist. I told him about the “burning” sensations and also informed him that I seemed to cry easily. He suggested an anti-depressant, but I said I wanted no parts of any of that until we figured out what was wrong with me.
I got my referral slip and attempted to make an appointment with the endocrinologist, only to discover he had a waiting list of 4 MONTHS! I phoned my family physician’s office and informed the receptionist that “as a mother of two small children, feeling as bad I have, this was a death sentence.” For a couple of days, she worked on finding some alternative endocrinologists in the area, but when I left a message Friday afternoon, I never heard back from their office.
On Monday, 1 July 2002, I decided that I was going to go back to the gym and do something once and for all about this weight gain. As I pinned up my hair, I noticed a rather big “lump” at the base of my neck above the shoulder blades. If it had been there, this was the first I noticed of it. I phoned the doctor’s office and informed the receptionist that I had not injured my neck and had full mobility, but there was a “lump on my back, about “softball-size” in diameter and sticking out noticeably. A few hours later, she phoned me and said that my family physician wanted to see me that evening.
This was the first time I had ever been treated by my family physician. He termed this lump on the back of my neck as a “buffalo hump” and muttered Cushing’s Disease and went to get his medical book. If it was Cushing’s, it would explain the hump, the back pain and the weight gain, but of course, my recent blood work wasn’t confirming this diagnosis.
He apologized and said that although he had spoken with his physician’s assistant about my case on other occasions, he had not realized the “severity of my symptoms” and would “take of me”.
He has ordered a battery of blood tests, which he admits he has “never ordered before” and an MRI of the brain and a CAT scan of the chest and torso. He convinced me to resume taking Celexa and also prescribed Zanax, to help with the roller coaster emotions. He also prescribed Synthroid, a very low dose to try to stop the growth of the goiter and also stop the weight gain. I can begin taking that once my blood tests are complete.
8 July 2002, in the last week, my leg muscles almost feel like they are deteriorating; they ache for no reason at all. My right leg has been the main problem since yesterday. It feels tight and achy and has been “burning” constantly. I continue to have a flu-like back ache and I get very tired after doing the simplest things. My children are home with me for the summer, and I am sad that they are not seeing the “real Mommy”, the one who 2 years ago, seemed unstoppable with tons of energy. I feel trapped in a body that doesn’t look or feel like my own. I worry that I might feel worse before I get better and I’m terrified that I will get lost again in the shuffle if my test results come back “normal”.
I had a CAT scan on Friday and an MRI this morning. Today was a "good day", I don't ache very much and I don't feel exhausted. My lab work isn't back yet, but hopefully it will be in by the time I see my doctor on Thursday.
Saw endo at University of Pennsylvania Hospital at the end of July. Brought photos, symptoms list, MRI of brain and CT of adrenals…and husband, Rich. At the end of appt, endo was 99% certain that I DID NOT have Cushing’s disease…because scans did not show tumor and no new purple straie (the many that I have are either silver or pink now). She did diagnose me with Hashimoto’s thyroiditis and ordered 2 more 24 hour UFCs. Both of these turned out well within the normal range: 13 and 17. (First one was 33…with normal range high being 34).
Started on 75mcg of Synthroid in July and have had my thyroid checked every 4-6 weeks. Found out that I was pregnant on Halloween 2002…found out it is a boy Feb 2003. At the moment, am taking 125mg of Levoxyl and feeling pretty good, still tired, still sore…but most of that can be attributed to pregnancy. I started the pregnancy at 224lbs (60 lbs over my “normal” weight) and have only gained a half a pound in 23 weeks. I believe that the fact that my thyroid is now actually slightly overactive has help w/ the weight (TSH has been .16 for about 8 weeks now, normal low is .4…I think). I am not dieting, but certainly don’t consume the 3000+ calories daily (and never have) that it would take to maintain this weight, so I don’t quite understand why my weight just hovers at this number. My face has thinned out a bit and I am getting a little curve back in the waist, belly is BIG and not all baby. Still, I am optimistic that I may be able to drop weight once the baby is born, if the culprit was in fact my thyroid.
Next step is to see if I can take the weight off after baby is born.