My Bio for starters
Well I am a 52 year old female. I have had problems all my life from not having but 3 periods a year, difficulty getting pregnant, I do have two sons, ages 29 and 19. In between them I had 3 miscarriages. The 19 year old was a twin and one did not make it. Early in the pregnancy the twin's heartbeat stopped.
The doctors tried clomid which did nothing. I was told I was overweight, needed to lose, but I was not overweight. It was suggested I see a dietitian which I did and she put me on a 1200 calorie a day diet, which I adhered to strictly and I gained 5 pounds. Of course they thought I lied. So there was a dead end. This was three years after the birth of my first son.
Until the age of 38 my periods were only 3-4 a year very and heavy. Then at 38 years old, they started getting very regular, every 28 days like clockwork. I have had stress in my life as I was part of the 9-11 scare. I was there at the Pentagon. Shortly before then I began having panic attacks, while driving to work on the interstate in DC. At first I did not know what it was, but it literally froze me. I had to breathe deeply to keep on driving. Soon I had to have someone drive me to work. No longer was I able to drive. The feelings of panic, sweaty, heart pounding, dizzy spells etc. took me over.
I moved to Florida 5 years ago to get away from the busy city of DC. Right before I left I had this fullness under my right rib, I thought it was from eating our 'going away' meal at a Japanese restaurant. From then on eating was difficult. Prior to that I had always had acid indigestion so bad from everything I ate that I carried Tums with me everywhere I went, and limited myself on eating. I started to gain weight, that over the next 5 years; I gained 60 lbs on my 5'2" frame. I dieted, although I never ate much at all, so someone said I didn?t eat enough so I tried eating more regularly. This did not work. I would gain lbs in fluid, hands, feet and face. When I moved to Florida I went to a doctor and he said maybe it was my gallbladder. So I was admitted that day to the hospital and they ran tests saying it was not my gallbladder. So I left the hospital. Still having that uncomfortable fullness under my right ribcage, I went to the doctor again. I had endoscopy, and colonoscopy done, to find I have barretts esophagus, and a mild sliding hiatal hernia, and an ulcer. They put me on aciphex, this worked well because other anti acid medications made me retain fluid in my legs, Aciphex did not. I still have this fullness, and decided to ask them to take out my gallbladder. (Meanwhile I still have anxiety, heart palpations, dizzy spells, for which another doctor gave me 2mg Lorazepam, three times a day as needed) I do not take the lorazepam, unless I feel uneasy, and I take half a pill. This is not on a daily basis but whenever I need to.
I'm trying to make this long story short but, it is difficult. I finally have my gallbladder removed, and had a bad reaction to the Benadryl they gave me.
After this I still have the fullness, with sometimes a radiating around the back, with gallbladder removed. So I guess that surgery was not needed.
In the meantime I start having difficulty sleeping; going to another doctor he gives me the salivary test. This shows my cortisol levels at midnight shooting off the charts. Nothing was done. This insomnia is not all the time but comes in waves and when I fall asleep I wake up every half hour to hour. I try 1.5mg of melatonin to sleep and this helped but not any more. But I wonder if it is because it is on the downside of the wave?
So I finally find an endocrinologist, he requests all my records for the prior two years before he will see me. I provide those and in the meantime, I am having bad heart palpitations, which scare me. I have had PVCs before (premature ventricular contractions) the doctor up north told me to stay away from caffeine which I did, but none of these PVCs went away, I had them for 4 months 24 hours a day. It was too much for me to handle, then they mysteriously went away.
Back to the present, I went to a cardiologist to see if they were PVCs and requested a holter monitor, they said they wanted to do a stress test on my heart because they saw in an EKG that it looked as if I had had a heart attack. They also said that it seemed strange because there was a portion missing that confirmed a heart attack, I asked what, I cannot remember what they told me but I asked what else could make the EKG turn out like that and they said ?something pressing on your heart?. Well there we are back to the pressure I feel again, only this time it is getting worse as it is on both sides now. I refused to let them do the nuclear stress test, and asked if someone would give me a CAT scan of the upper and lower abdominal.
Throughout the years I have done all the research matching them up to my symptoms, and all I ever come up with is something with the adrenal glands. Well after phoning a few doctors I finally find one that will schedule my CAT scan. The day before going I was told that they would approve the bottom of the stomach scan but not the top. Well when I go to have the scans done, I do not tell the imaging people the message and I get both top and bottom of my abdomen done.
On the way to the first endocrinologist appointment, I get a call from the doctor who ordered the CT scan, and the results were not good he said. He proceeded to tell me that I have a tumor on my left adrenal gland, and it was 3.8cm. I was so happy to hear this as I knew all these years something was wrong. I asked that he fax over the results to the endo as I was on my way there. He did so immediately.
When I got to the appointment he called it an incidentaloma, well I know this was not ?incidentally? found, but I did not care, at least they knew. So this endo orders me another 24hr urine test as well as blood tests. I return with the results and the cortisol levels are fine. (During this time I knew they would be because I was sleeping through the night) this I told my husband, and I was right. The endo gave me metformin, saying I am producing way too much insulin. The dosage was to be worked up to 1,000 mg morning and 1,000mg evening. I did this within less than two weeks. I lost 10 lbs. The endo had told me that my problem with insulin was so bad that ?if he locked me in a room with just water for a week, I would gain weight? those were his words.
So I lose the 10 lbs in the first month, and then stopped. At that time also I felt better for about a week, my anxiety went away, dizziness went away, I thought I was on my way to getting better. I was on that dosage for 4 months. I had a follow up appt. with him and he said that the Metformin saved me from becoming diabetic. But that my insulin levels were still not within the range they should be. I told him what symptoms I was having and that I could not sleep at night, he said well the 24hr urine came back last time fine. I said yes they did and I knew they would, but I need another test to show you when I cannot sleep at night my levels are high. And reminded him that I gave him the results of the salivaries I had done before with another doctor, and the levels were ?off the charts?. He made an appt. for Feb. 2010. I told him the way I have been feeling lately there was no way I could make it until Feb 2010.
I was having bad palpitations for which I take lorazepam. I had to stop the metformin because one day while I was at work; I had the worst thing happen to me so far. I felt disoriented, had to hold on to the walls to walk, kind of woozy as I call it, it?s not dizzy nothing was spinning, but I just could not get focused. I almost called my husband to take me to the emergency room but I was afraid of what they would do. I stuck it out and felt a little better, called my endo and today is Friday and they never returned my call.
So, yesterday I did more research and found this wonderful website and a doctor in Gainesville Florida that I plan on visiting.
My symptoms include, loss of hair on legs and underarms, I do have hair on my chin which I shave and hide with camouflage makeup. I told this to the endo and he said I did not fit in to the category of Cushings or Addisons, or a Pheo. He told me that my tumor seemed to just be a lump and did nothing. I do not agree with this as I told him my symptoms and just because it does not fit into a category he thinks it is nothing. So I am in the process of gathering all my test results and calling this new endo in Gainesville, to set up an appointment.
I found out the endo in Gainesville that specializes in Cushings moved to Ohio, Cleveland Clinic last March 2009. I called him to find out if he knew of any endos in my area that specialize in Cushings. He never replied but did tell me that he comes to Florida once a month to visit patients, and this is a one day trip. (I spoke with him on a Friday) He said he had some good news and bad, the good was he comes to Florida and would be glad to see me. Bad news was he was to be here Monday. He is no longer in Gainesville but affiliated with the Cleveland Clinic of Florida in Weston.
We made the trip there for an appointment time of 9am. Dr. Kennedy spoke with us and examined me for an hour and half. He made the diagnosis of Cushings Syndrome with an adrenal tumor. He also ordered another CT Scan that day.
Before the above incident my previous endo did order a 1mg dex suppression test for overnight. I took the pill as prescribed at 10pm and had the blood draw at 7am the next morning. When the results came back his assistant called me and asked that I do another dex suppression test only it was 2mg every 6 hours for 24 hours. I agreed. When I asked her about the previous test she said the endo said I did not suppress and doubted I even took the dex pill the night before, saying I must have forgotten! So on to the next dex test. When I received the pills to take I took one at 7:30am at work, by 11:30am I had to go home from work. I felt so bad I could not function. Knowing I had to take another at 1:30pm, I was scared. Palpitations were fierce, head felt weird, whole body was in super running mode, only so fast I felt slow? (if that makes any sense) I put a call into the endos office and finally reached the assistant and told her how I felt and if I should take the next pill. She consulted the endo and he said ?if she doesn?t take the pill we cannot do the test?. I was so upset about how I felt, like I was going to die, and told this to the assistant. She felt bad but had no choice but to tell me what he said. So at 1:30pm I took the other pill. Now the feeling I was having was much worse, I was walking around in circles in my house not knowing what to do. Twenty minutes later I took 2mg of lorazepam to calm myself down, knowing it may interfere with the test but at that point I did not care. The results came back and I did not suppress with that one either. In the meantime I found Dr. Kennedy and went to him for diagnosis as stated in the previous paragraph.
Now, I have test showing high midnight salivary cortisol, 2 dex test with no suppression, CT scan results with a tumor and low ACTH when the blood was drawn for the dex tests. (Which I had to ask the old endo to include ACTH results) I found out that low acth and no suppression indicated that it is adrenal in nature. Well I already had the CT scan results, what more did the old endo need? So I requested all my paperwork from him and never went to see him again.
Dr. Kennedy told me of a surgeon he used in Gainesville that has performed this type of surgery before. Pituitary Cushings is called Cushings disease, Adrenal Cushings is called Cushings Syndrome. Dr. Kennedy after reading the 2nd CT scan said I had an adrenocorticol adenoma. The surgeon he referred me to was Dr. Juan Cendan. 70% of Cushings is from pituitary and 15% adrenal, 15% ectopic. I asked the surgeon how many times had he performed this type of surgery and he said around 160. He is in his 40s, so I estimate he does them approximately 5-7 times a year. Then I found out that regular surgeons do them 1 time in 5 years. It is a rarely performed surgery.
On December 17th I had an appointment with Dr. Cendan. While at Shands UF in Gainesville, I also had all the pre op work done. Chest x-ray, ekg, blood work etc. When the ekg came back the anesthesiologist called me back into his office. I was actually speaking with their assistant. He asked me how I felt. I said I felt bad as usual. Then has asked how my heart was feeling. I said usual, palpitations etc. He asked me if I was having a heart attack. I have heard this before last June 2009. I went to a cardiologist to see about my palpitations which have in the past been diagnosed as PVC?s (premature ventricular contractions). The assistant spoke to his higher ups as he called them and requested an echo of my heart that day. (Originally surgery was scheduled for Jan. 6th.) The echo was done and heart was fine except SVT?s my tachycardia. So I guess the surgery was on.
My parents are in their late 70s and flew down from Virginia to meet us at the hotel in Gainesville the night before the surgery. I was instructed to call a number given to me by the hospital the day I was there for pre op. I promptly called the number on the night of Jan. 5 as instructed only to find that they did not schedule me for next day surgery!! I had been told by Dr. Cendan that the one who schedules me will have to schedule when he is town the whole time I am in the hospital, as his words were, ?I am the only one who can do anything should something go wrong?. He wanted to be there the whole time I was in the hospital. Well needless to say we were all upset to have to go home after all that planning and missing work and parents wasted money to fly down here for me. After long talks on the phone they rescheduled it for Feb. 9th 2010. They did say should something change they would call me and put me in early, but not to count on it.
This surgery has to be done first thing in the morning as Dr. Cendan said. It could be a 3-4 hour surgery.
I do know that after surgery, I am to be put on some type of steroids because with my left adrenal gone, and my right one dormant, I will need supplementation. I called the endo Dr. Kennedy suggested in Gainesville, but the office had no idea who I was and would not allow me to send the reports myself and suggested I come see her before the surgery. I cannot take any more days off work, because as it is now, even being salaried I will have to take almost two weeks as leave without pay. And the questions I had for the surgeon, they wanted me to have a face to face appointment also. I cannot afford this. So I asked his assistant to find the answers to the questions I have.
As for an endo to monitor me after the surgery, I feel I need someone who is interested in Cushings and the taper process of whatever steroid I will be taking.
I also need a good family physician for me and my husband as I have not found one since moving here in 2004.
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