And It's About Time There Was Some Support For Cushing's!
I'm a 45 year old female. Married and the mother of a 22 and 19 year old daughter and son. In 1997, I began having female problems and was put on the pill. That was the start of my gaining weight. I am an aerobic instructor so weight has never been an issue for me.
The fall of 1999, I was diagnosed with intraductal hyperplasia and in May of 2000 I was put on Tamoxifen. That also created a weight gain for me. In 3 years I had put on between 10-15 pounds. In August of 2002, my face started getting puffy, more weight gain and bruising very easy. I was having female problems due to the Tamoxifen so underwent a hysterectomy in October. I actually dropped weight in October and part of November. Then I started gaining and put on another 10-15 pounds.
In January of 2003, my feet and hands were very swollen. I called my breast clinic physician and she could not treat me for this but referred me to a family practice doctor in Fargo, ND. She did blood tests on me and found that my liver enzymes were elevated. This could be because of the Tamoxifen but she wanted to test me in one month to make sure.
In February and March they were still elevated so I saw a Gastroenterologist and had an abdominal sonogram. The tests were all negative. I was having additional symptoms besides the edema. My face was definitely moon shaped, had a significant weight gain in the abdominal and neck area. My bruising wasn't getting any better. I was losing my hair. I had a hump on my neck and I was having persistent breaking of blood vessels in my right eye. My doctor put all the information together and told me that she thought I had Cushing's. She ran a 24 hour urine cortisol and it came back at 316mcg. I could not get in to see the endocrinologist until May 20th, so my doctor had a CAT scan done of my adrenal glands in which no lesions were noted.
In May of 2003, my endocrinologist performed a dexamethasone-CIH stimulation test and a CRH stimulati on test. The results indicated a pituitary Cushing's. He then ordered an MRI. I had the MRI done in June and it showed a generous pituitary gland, suggestive but not diagnostic of pituitary tumor. For that reason, he sent me to the Mayo Clinic in Rochester, MN. I couldn't get in until July(which was really fast). The good Lord was looking out for me. Dr. Nat (who is wonderful) performed blood tests on me and had me take another urine cortisol test. She also had me do a saliva test for research purposes. My blood cortisol level was only 22 but the saliva test when it came back was 3x what it should have been. My urine cortisol at that time was only 50. What Dr. Nat wanted to do was a petrosal sinus sampling but the levels had to be up for the sampling to be conclusive. I could always tell on my body when the levels were higher so she told me to do another urine when I thought it was up again.
The 3rd of July the level was at 50 and the 22nd the urine cortisol was at 320.
On the 29th, I underwent the petrosal sinus sampling (IPSS). The procedure for me went really well but there were technical difficulties and the results were inconclusive. Due to their mistake, I was not charged for this procedure nor for the following tests that I had done to rule out an ectopic cause. None was found. My husband and I had to make the decision whether I should go through another IPSS or go ahead with a transsphenoidal exploration. Because of the MRI, they were pretty certain there was a tumor on the right side of the pituitary.
We decided to do the transsphenoidal exploration. On August 6, 2003, I had the surgery. A per sae tumor was not found. What was found appeared to a pituitary adenoma in a liquefied semi gel fashion. I had no complications from surgery other than I could not sleep. That was another symptom I had when my cortisol level was high. I had so much energy when my level was up, it was scary. My blood cortisol level the next two days after surgery were 34 and 39. Dr. Nat wasn't sure the surgery was a success and talked to me that I might have to have further tests and surgery. I came home to recuperate. I went to the local clinic and had my blood cortisol taken the next week and it was at 12 so Dr. Nat was cautiously optimistic. The next week we were disappointed again because it was up to 23. She was going on vacation until after Labor Day but wanted me to come in when she got back for another (IPSS).
In the meantime, I was having symptoms that the levels were going down. My face had started to slim, I lost a couple of pounds, the bruising was normal and I was tired. I also was having muscle weakness and having a hard time walking as my feet hurt. I did another blood and urine cortisol and they were both at 12. Dr. Nat talked to me about putting me on a low dosage of (I believe it was) hydrocortisol. I asked her if I had to as she still is not sure I am cured and I did not want that to mask any returning symptoms. She said if I could stand the weakness, she had no problem with that. I am on a sabbatical from teaching aerobics so I have the privilege of taking it easy. I have been going in for weekly massages and they have helped me immensely with my muscle weakness. My calve muscles are so tight and that is causing my feet problems. I walk on a low speed on my treadmill and am lifting very light weights.
I am to do another urine test in a couple of weeks and I go back to Rochester on the 3rd of November. The Lord willing, I am cured. This has been such a see saw. I felt good with the Cushing's in regards to energy level. I was very upset with the outwardly changes and am wondering what damage the disease did to my insides. My blood pressure is down. At one time my blood sugar was high, but that is down also. I didn't have a lot of symptoms that some people have and Dr. Nat said that studies have shown that people who are physically fit don't have all the symptoms. She also said I was very fortunate that my family practice doctor diagnoses me correctly. She said Cushing's is the hardest disease the Endocrinologist has to deal with.
Thank you for letting me share my story with you. I have felt so alone as nobody around here has heard of Cushing's so I wasn't able to talk to anybody and see if they had the same issues and what I can expect. My biggest concern right now is how long does the muscle weakness last.
