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Everything posted by Marisa

  1. I guess you better change your profile name to anything but "fatnsassy"! You look absolutely wonderful!

  2. Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable. Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests. I'm so tired of all this, and my weight loss has stopped. How discouraging. Going to post on the forum see if I can get any advice. Hanging in there, Renata
  3. Well once again its been a while since I posted. Now I am feeling better. Not there yet but definately better. I still have some aches especially in the morning when I get up. My right arm feels like I have carpral tunnel, my two fingers keep falling asleep. I sleep at night with an arm brace and take it off in the daytime. I believe it is getting better. I also have tennis elbow, and that started acting up, but I know not to pick up heavy things until the pain subsides. I stopped taking ibuprofen, because it too was an anti inflammatory and I did want my body to heal on its own. So far so good. My legs started swelling and my bp started to rise. I spoke with the mother of that has a cushings daughter and she said when she took any type of antacid prescription it made her bp rise also. I have taken Aciphex for about almost a year. In the beginning Aciphex was the only prescription that would make my lower legs swell minimally and I had forgotten that. So I stopped taking the Aciphex about three weeks ago, and my bp is normally 127/78!!!! I was so happy, and no swelling in the legs. It had been so high the doctors gave me two types of high blood pressure medicine none of which I ever took. I still have a relatively high pulse, it is usually in the high 90s, but there is stress in my life right now so I attribute it to that. My blood sugar used to be in the low 200s, I am insulin resistant. Once again they wanted me on Metformin, and I wanted to try to tackle each of these problems one by one, as I did the blood pressure. Well I found out that by not eating I was not losing weight. I never ate much before the surgery, and now I do not still. So from the advice of a diabetic dietician, I started to eat small snacks, high fiber, throughout the day. I still need to eat more and more often but I am working my way there. Everytime I snack healthily throughout the day, the scales start to go down...so far I have lost 12 lbs. I try to eat high fiber, good fats, and protein. It seems to be working if I can keep up the eating. I am starting to get small pangs of hunger, and that is when I eat a small snack. I am lactose intolerant, gluten is bad for me, as well as casein. I do not drink milk, or eat bread...yet! I am hoping one day I will be able to eat those again. I take aloe juice for my stomach ulcers, and so far so good. (no prescription antacid for me) I had to endure the rebound effect for stopping the Aciphex, but I just loaded up on Sugar Free Tums, and still have them handy just in case. I ended up having an aversion to most foods as the pains from eating them were horrific. So I opted to not eat much at all and pre surgery was gaining weight...a cushie symptom. However, back to my blood sugar levels...as stated previously, they were in the low 200s, it went to the 170s for a while, then to 140s, yesterday morning I tested it again and it was 135!!! So I must be doing something right. And I will continue to snack, and eat, and hopefully lose the weight and get my vitals in order...and WITHOUT MEDICINE!!! This is just an update from me....oh, but I am still taking Lorezapam on occasion for stress, (I mentioned lots of stress in my life) and I hope to one day stop taking that too. I am so happy to have had the surgery, and my hope is for all cushies out there to get the dx they deserve and get their "repair" so they will no longer have Cushings! Renata
  4. Well as you can tell it's been a while since I have blogged. I went through withdrawals from weaning off hydro and the body aches and pains were very painful. I have found ibuprofen helps. On March 17th I had the ACTH stim test and the next day my endo called and said my right adrenal was working, and I could stop taking the hydro. I had weaned down to 5mg a day. Even now though I get pains in my body still....especially in the evenings. If it gets bad I take ibuprofen again! So far so good. I have begun to lose weight, however so slowly. Only 4 lbs so far. 60 more to go. Oh well someday I will get there. It still hurts to type at the computer, and walk, from what I have been told, it takes a very long time for the body to 'adjust' to not having the loads of steroids running through it. I can testify to that one. Others who have been through a unilateral adrenalectomy have told me the same things. It just takes time. Well so far 7 weeks have passed, and I used to wonder what it would be like on the 'other side of cushings' well I'm here. So there has been time going by. Sleeping is okay, some nights are good, some not so good. But definately better than before surgery. Around July I plan on getting a saliva test done to check my cortisol levels throughout the day and night. That is one test that showed high mignight levels pre surgery for me. I keep forgetting to take my picture now, and then I can have an 'after' picture like everyone else. Note to self: must take this picture...ugh! Well just wanted to update. Renata
  5. Best night so far last night. took lorazepam and ibprofen and slept the most i have so far. Had a 2 and half hour nap today also. Wonderful feeling to sleep. so i guess i am ready and possibly on my way UP...? Just had to share the good news.
  6. Well i am taking 20mg hydro in the AM and 15 hydro in the evening now. So far so good. taking ibuprofen for stiffness and soreness, and lorazepam to rest. I was taking some hydrocodone for pain but honestly, it makes me feel worse than why i am taking it. Ibuprofen does just fine. I still get dried out alot, needs lots to drink. My bp is great, and pulse is now staying under 100. Still having issues with blood sugar but will work on that next. I slept well last night, despite the soreness from turning over. And had an hour nap today. Much better. Even though when I woke up this morning I was feeling so bad wondered if hubby should take me back to the hospital? Endured the day and it actually was not as bad as it initially started. I am to go back to work March 1st. I hope this week proves to be a magical week and I feel like gangbustgers to go back ..... i really have no choice in this, I must go back or lose a weeks vacation in march, and lose my company paying my health insurance for march. Feb paycheck is already going to be short by a week and half. So you see my problem. Gotta get better FAST. Have an appt with endo on Thursday. We shall see what they have to say. I am 12 days post of but my left side of my chest/lung feels sore alot. especially when I take a deep breath. is this normal? i did have a left adrenalectomy. Anyone have any input please let me know. Thank you. Renata
  7. Well last night was a terror. I could not sleep all night, and had pains that I guess were from not enough hydro. Although I did keep check on my bp and it was fine. today i took lorazepam and had a couple of naps. Trying to keep from getting sore....sometimes I wonder if I am healing or not? Is it my not being patient again???? Going crazy here..
  8. Marisa

    Feb 17, 2010

    Well so far so good I think. I did notice something special today! From the cushings I had a very red neck and chest, like a v-shape, before I knew it was cushings I thought it was a sunburn. Well guess what!!! It's gone! My skin is all the same color now. I was so shocked and happy. Yes I know it is one little symptom of cushings but its gone. I have lots of pains in my muscles in my chest, from coughing and possibly picking up stuff I should not. But I had this prior to surgery but its worse now. Feels that no matter what I pick up I pull those muscles. I know in time that will get better also. I plan on going back to work March 1st, and hope that I will be able to without a problem. It was a week ago Tuesday I had my surgery and now I can say I think everyday is getting better. Like I have said before, I do not have much patience with myself, but I am trying to learn No more cushings! Thats the main thing and I sure everyday things will be better and better! Just wanted to share this with everyone Renata
  9. I'm back. Glad the surgery is behind me. The surgeon looked like he was so happy to know he did a good job. ? He was proud of himself. Was in intensive care from 2-9 to 2-11 then moved that evening to a regular room, then the surgeon comes in late that night and asks if I want to go home. Yes of course. So I was out three hours later. NO wheelchair either, I had to walk to the car right out of the hospital. Today is Sunday, last night I started having a fever, I know I have to stress dose and did so but was worrying I did not do it right. Guess I did as I am still here. My BP has been great, heart rate high until today I decided to eat quite a bit of salty chips until I could taste salt again, and my rate when to right under 100. Before this it was never under 100 but in the teens to lower 20s. I have pain today, cant sleep, wish I could. Last time I took pain meds was Thursday morning before they removed the morphine drip thing. After that I guess I had so much in my system still I was not in need of any. I am anemic, and have an appt with pcp tomorrow to get some blood work done. Been eating iron rich foods. Cant do much else. I am going from cold to hot and uncomfortable. I break the fever with ibuprofen before it gets too high, and I only have to double my steroid dose. So far so good. Fevers were last night and today. This evening I am clammy sweaty, warm but no fever. Incision area and left kidney area hurting some, guess I will get some pain medicine tomorrow. Right now I am taking normal dose morning 20mg hydro and between 3-4pm 5mg hydro. (this is normally when with fever I double that if the fever is within a certain range) I will update tomorrow after Dr. visit. I have to learn patience, I am 52 now and I guess do not heal as fast I remember But I think I am doing pretty good. Just wish I could sleep. Renata
  10. Update on Renata Hi, I'm Renata's sister. She wanted me to let everyone know that her surgery went well.
  11. Adrienne is so right. If I had not found this site, I would not have found an endo to dx me in a timely manner. All the information I learned here is more than I could have learned on my own. Not only do I keep this site up daily and check it frequently, it is my lifeline. My words cannot express enough my gratitude for this site. Thank you so much, Renata
  12. They called me back, and schedule another pre op for Feb 8th. So I go there and stay there until the next day for surgery. I hope that nothing spoils it this time. I kept them up to date on what changes were happening to me and they never said anything. I hope the high and low bp wont affect things and the ekg, I had last time they didnt like so they gave me an echo, and I am guessing everything is fine to go. At least it was back then. Hopefully it will be again.
  13. Well thought about it this past weekend about my pre op I had done on Dec 17th. Surgery originally scheduled for Jan 6th, but was messed up by the hospital oversight in no putting my name on the list for surgery that day. I had to go back home. New date for surgery is Feb 9th, next Tuesday....so I call the surgeons office and ask if the date of Dec 17th pre op was ok for a Feb 9th surgery. OH NO she says, certainly not. Well why didnt anyone reschedule me?????? Did they forget I exist???? Such morons. So she says she will try to get info today regarding another pre op and call me back this morning. Do I think she will? I have no idea. Each day passing is closer to the date ...i just dont want that to screw it up again..... I cant take it anymore. So she also says "maybe they will do a bedside pre op" hmmmm, i dont think so because my pre op last time they didnt like my ekg and i had to have an ultrasound, and had to be called back from half way home to go back and have it done that day. Ducks in a row???? I dont think so. If we do not keep track of everything this is what happens. I thought I was being overly cautious, guess its good to be that way. I like being a preventer, so that I can make sure things go right ahead of time by avoiding things or making sure they get done. My sign on should have been The Preventer!!!!! Im mad, I want to roid out, and rage ....but I stay calm while speaking with them because being sweet get us further...but I hate being sweet in this situation, can we say BRING ON MORE STRESS PLEASE?????
  14. What you say is very true. If I can live with cushings I can live with anything. I just know I need some hydro during and after surgery. I dont want to crash and I know the nurses do not know anything. I'm trying to cover all my bases, and I have to rely on myself and who I 'train' as my patient advocate/s for me. Because being out after surgery is what scares me. I am very sensitive to anesthesia and that is what scares me a lot. But I am thinking positive and hoping to get through this successfully. Thank you for your input. It means a lot to me.
  15. When I got home yesterday from work, I had a message on my phone from the surgeons assistant. First of all over a week ago I emailed the asst. with info on my crazy bp and blood sugar number...I had a few questions and never got a reply. This past Wednesday I called and asked to speak to the same assistant I email and they gave her my message which was: I wanted to know what the medic alert bracelet is supposed to say. Next I wanted to know where to obtain the emergency kit with hydro, or when will I get one. Those are the only two questions I had. My message machine at home had this reply. She stated who she was (remember too they know I work and have both a work phone and cell, but they call my house where I am not) then she proceeded to say "they do not have a prescription for the bracelets one normally orders them from the internet." Okay I know this, and of course did not get my answer. Now for the answer about the emergency kit with hydro, she says "you wont need any hydro after the surgery because you are not a bilateral adrenalectomy" okay this scares me a lot. I have no confidence in who is doing anything. And to leave a message like that without talking to me to make sure of what my questions were....need I say more. I dont know what to do as the day gets closer..... Cushings and too much cortisol, now worry more and more....how comforting.
  16. Marisa


    Well it's Friday today. I have one more week of work to go and a Monday before my surgery. Friday's are the most difficult, as all week I never get the sleep I need, and this morning I had a bad sinus headache. Had to stand in the hottest shower I could tolerate and make my headache go away. The changes in temperature here in Florida this year is so varied, everyone is having allergies and sinus problems as well as upper respiratory infections. I go around and spray our offices in our department, door knobs, keyboards, phones, light switches, just to try to keep the germs at bay. I am so tired today, and had that 'woozy' feeling on the way to work. Took bp and it was 154/94, not bad for me right now, and my blood sugar was 206. Only drank coffee with no sugar. The woozy feeling also makes me have a feeling of fear in my chest, so here it is Ativan/Lorazepam time again. With the palpitations and weird doom feeling that is the only way I can make it through the day. I wish so much I could stay home until my surgery but life does not let me, as I have not much time off built up to take off for my surgery. I will actually be taking leave without pay for about a week and a few days. (This is if I am able to go back to work March 1st, which is my goal, surgery is Feb 9th) I am hurting today, back of my neck, and head. I cant wait to post after the surgery and hopefully be able to tell you what is NOT hurting and all the positive things. Every time I get a congestion headache, or allergy sinus problem, the back of my neck where the skull is on both sides of my backbone, aches something fierce. At home I apply heat and it helps a lot. Today I am still reading about how to dose after surgery. Nervous about it and reading Gracie's postings and how confident she is about her BLA and her meds, gives me confidence but I just worry still. I will have one adrenal left, she is so poised and confident with both gone and is so positive in her postings. She should hire herself out as an assistant to all adrenal patients! post surgery. I take lots of vitamin C because I read it helps lower cortisol. But I still cannot get a good night's sleep! Waiting for after the surgery for that. My son is coming home this weekend, and he is the one I worry about cushings. His stretch marks, and lack of healthy sleep pattern make me concerned. A mother's love never goes on vacation, and I worry about him until I can get him tested. What a long trip that will be.
  17. Marisa


    I have to go to work everyday because I have to build up my time for time off for my surgery. I will still have to take Family Leave Medical Act for my time off as it will be without pay. But I will still have a job to come back to. Mondays are bad enough, but I have gained a bit of strength during the weekend when I get to take a little nap in the daytime. Nights are horrible as the cortisol levels are so high I wake up every hour on the hour or half hour, and get no rest. By the time Thursday gets here, I am utterly exhausted and then I think all day I have to come in tomorrow. Its killing me. I have one more week to do this and one more day then my surgery date. Can I make it? Sometimes I wonder if i will or not. I am foggy brained, look horrible, co workers can tell what type of night i had due to the way i walk and talk. Slowly, and sometime I dont say anything at all. Eyes half closed, body does not want to function, and my heart palpitations keep doing their thing, so I take ativan and the fatigue gets worse. Sometimes dizzy spells, and woozy spells....and I cannot even function. I begged to go home one day for fear I would pass out at work. Think? Concentrate? what is that? Did i used to know how to accomplish those two things? Relax is not in my vocabulary either, I guess after the surgery it will be a learned task. I hope I succeed. I am now concerned about having to get my emergency kit before I go to surgery, but from whom do I get it? And I read that I should have hydro and florinef (if needed) filled before my surgery. Also the emergency bracelet...but what should i have it say? I want to be prepared but really am at a loss. Like I need someone to tell me what to do since right now I dont seem to be able to think for myself. Any lists for me please let me know. Thank you in advance, Renata
  18. Marisa

    My story

    I understand your feeling completely. I am scheduled for surgery Feb 9th, and that day cannot get here soon enough. I have a left adrenal adenoma, the exhaustion is getting so bad I can hardly make it through a week of work, and all I do is sit at a computer. Of course my brain is not working but Im here because I do not have any more time to take off and saving every bit of it for the time off after surgery. I totally understand about feeling 90 yrs old. I watch other people in their 70's and 80's walking around enjoying life with smiles on their faces and knew something had to be wrong with me. I cant take life like this, its not fair nor is it living. Keep in trying to get a dx from a doctor, if one dismisses you find another. Keep in searching and finally your work will pay off. I hope mine will. I am feeling so bad today that I can hardly move, or breathe. Cannot go home to lay down and its killing me. We were all told "you are fat lose weight and you will be fine" its a dumb doctor's way of not listening to us when we tell them what our symptoms are. Anytime you need to talk I am here for you. Hang in there, persevere, things will get better. By the way, I'm 52 and have lost 10 yrs of my life to this killer cushings. Nice to meet you, my name is, Renata
  19. Marisa

    Found my PCP

    Called around and found my primary care physician. She is originally from Burma and is interested in Cushings. I met with her and showed her all my results and explained about the surgery date of Feb 9th, and that I will need assistance in weaning off the steroids. She was eager to learn about Cushings. She said she took her exam a few months ago, to renew her license, and they had many questions about Cushings on the exam. She said she was very interested and would learn a lot from me. Well needless to say she got the job! I was out to interview doctors and find one that was not arrogant and would listen. I am very pleased with her eagerness to help me and learn. Today I also found out that I believe my son may have an endocrine problem also. Possibly cushings. His symptoms so far are weight gain, striae that turn colors, difficulty sleeping at night. My son just turned 20 last month. This is going to be a long haul for him as it will be great fun to have him diagnosed. (I say that sarcastically) With this new blog feature for me, I will be posting what is going on daily. I asked my son to wait until after my surgery so I will be able to help him better. Right now I am in cushie brain, until after the surgery. I am not much use to him.
  20. 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.
  21. Thanks for the reminder about forum etiquette. We are all here and receive great support and friendship from all. I hope I have never done anything to make that difficult for anyone. Cushings is a crazy disease/syndrome and I have truly made fast advancements toward my diagnosis and now an appt with the surgeon. (adrenocorticol adenoma left adrenal) If it were not for this website, I would not have gotten as far as I have, nor would I be so armed for the "talk with the surgeon" Thank you one and all for everything. I guess the reminder here is the old saying, "treat others as you would like to be treated". So far I have received that. I cannot thank you all enough for everything. Will update everyone on the appt thursday with the surgeon. Thank all from the bottom of my heart, Renata
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