Cushing's Info

Well I am a 51 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. 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 24hr urine test. This shows my cortisol levels at night 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 helps. 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 adrenal area. 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 gi 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 have been on that dosage for 4 months now. 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 one prior to that, and the levels were ‘off the charts’ so he gave me the test again, and I told him I would wait until I know I am not sleeping. 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. Currently I am having bad palpitations for which I take lorazepam, and I take melatonin to get to sleep. I had to stop the metformin as last Monday afternoon 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 things 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.

Well I was so excited to find this website that I have not read any else’s bios yet, but hope to see if anyone out there has the same issues as I do. I am sure I have missed out on lots of symptoms but hopefully someone (this new doctor) can help me because I absolutely cannot live like this. No energy, palpitations, anxiety, jumpy, chest hurts from palpitations, and the adrenaline surge all the time hurts me a lot. I cannot stand it. Feeling like I’m scared all the time. It’s driving me crazy.
I guess this is all I will write for now.

12/14/2009 Found out the Cushings specialist in Gainesville Fla. moved to Ohio March of 2009. Meanwhile I am with endo number 1 and he has the ct scan of the tumor with all the tests of high salivary cortisol at midnight and says no that is normal. Then he proceeds to give me the 1mg dex supp test and I take the pill at 10pm and 6am i have blood drawn. Results of that were NO suppression and I was accused of not taking the pill. He orders another dex 2mg 24hr test, and I take the first pill and had to leave work, I felt so bad i thought I was going to die. Time for the second pill approaches and after many tries to contact the endo he says, "if you dont take the pill we cannot do the test". So I endure this with Lorezapam 2 mg and make it through. Meantime waiting for the results I contact the Endo specialist in Ohio and actually get to speak with him, this is Friday at 4:50 and I am about to leave work. After a brief rundown of my results and symptoms he says he can practically dx me over the phone, however, he has some good news and some bad, good news is he comes to Florida once a month to visit patients, bad news is he will be here Monday, then he asked if I could make it to where he is (I am assuming Gainesville, a 1hr 15min drive from me) but he informs me he is in Ft. Lauderdale 4 hrs away. I told him i would be there. He gave me an appt. for 9:30 am that following Monday. My husband and i were there, and Dr. K spoke with us for and hour and half. He also had the hospital pull some strings and I was able to have another CT Scan. So...He suggests a surgeon in Gainesville that he used to work with and said leave it to him to contact the surgeon and they would contact me. Within 2 days I had an appt to speak with the surgeon and it is Dec. 17th.
My dx was adrenocortical adenoma, wants to do a unilateral left adrenalectomy. I am so happy and Dec 17th i will know when the good day will be.
I am getting worse and worse as everyday goes by. I hope to talk him into doing this soon.
I will update after the 17th.

Thank you for listening

Renata (Marisa)

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