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David T (Wombat), Adrenal Bio

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adrenal-locationHi, I have been diagnosed with probable cyclical adrenal cushings. This all started after a scan on my abdomen for something unrelated revealed bilateral adrenal adenomas. When I googled adrenal adenoma everything fitted into place. I had been depressed , put weight on which were my main symptoms along with anxiety.

I was then referred to an endocrinologist in the UK who ordered some initial tests. I did Two 24hr UFC’s on consecutive days one came back at 36 and the one the day after was 91(normal below 50. Another time the normal range was 165 and the 1st one was 108 and the one the day after was 393.

I then did an overnight dexamethasone test and suppressed below 50 to 48. My endocrinologist then said he didn’t think I had cushings and said come back in six months and said it might be due to stress. I then got a second opinion and then the real testing started.

Roll forward four years and I have done about 30 – 24hr UFC’s numerous ACTH and full blood counts. renin and aldersterone, metoclopramide test, glucagon test, vassopression test, oral glucose stimultation test, day curve cortisol, spent a day in hospital walking round the ward for two hours, then eating a mixed meal and then sitting down for two hours while they tested my cortisol every hour . Did a Low Dose Dexamethasone Test and came out in a rash and my blood pressure dropped so got told I can’t do the test again. Had a bone density scan. I hIad a pituitary scan that revealed a lump inside my tongue and then had to have a whole body scan followed by a tongue biopsy(which turned out to be benign.

I have had about five CT scans on my adrenal glands and was referred to an endocrine surgeon this week who is going to perform a right adrenalectomy. The right one is 4cm in diameter.

He said looking at the scan he thinks it looks like macro nodular adrenal hyperplasia but wont know till pathology get to examine the specimen.

It’s been a long, long journey but finally looks like it’s coming to a conclusion now.

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Sue, Undiagnosed Bio

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A Golden Oldie

Hello – My name is Sue and I’m 42 years old.  Before Friday, 10/15/10, I had never heard of Cushing’s.  I went in for a physical and had routine blood work done (fasting) and then went in the next day for a cortisol and aldosterone test.

This was a new doctor who didn’t know my history… she noticed my ::blush:: beard, red puffy face, and central obesity and then started asking me some questions.  I stll had no idea why this many questions.  She said that she wanted to get an abdominal ultrasound and wanted me to seen an endocronologist.  Ummmm…. ok… still had no clue. After my cortisol came back at 23, she called me back in and explained that she wanted to get a CAT scan of my abdomen.  I asked her what this was all about, and she said that she thinks that I have Cushing’s.

I have been on blood pressure medication since 1998, and my ‘normal’ bp is 135/90.  At my physical it was 155/100, another warning sign… she doubled my meds and had me come in the next day.  BP was better 145/90, but was still high… so she prescribed an additional medication.

I don’t want to make this too lengthy, but I have several other symptoms too…  I am currently disabled due to depression/anxiety, and I have even gone through ECT treatment twice for it.  I take meds for depression, anxiety, sleep and psychosis.  I have to take a potassium pill every morning to maintain a healthy level and some mornings I can’t even move for a while due to joint pain.  Hot flashes and night sweats are not frequent, and I thought I was going through the beginning of menopause.  At times I would have sweat dripping off of my forehead.  If someone would look at a picture of me and see if maybe I resemble a Cushie??  I am waiting for the appointments, but the more I read about it, the more it sounds like me.  Thank you.


Sue also submitted a second version of her bio:

Hi!  My name is Sue, I am 42 and I live in Central Massachusetts.  During my physical with a new doctor, my blood pressure was found to be high, even though I have been on Hypertensive meds since 1998.  She doubled my dose, and it was still high.  She then put me on an additional medication, and that took it down a little bit. She then noticed my razor stubble on my neck and chin and asked about that.  Prior blood work showed that my cardiac inflammation was 5X’s the “high” limit (2 years ago) and the doctor at the time told me to take 1 adult dose asparin a day.  I had severely low potassium and she told me to take a supplement.  I am 5’5″ and weigh 224 pounds an it’s literally ALL in my stomach and cest and back.  My face is all puffed out and red and splotchy.  I suffer from sleep apnea and I lose my breath if I lay down flat on my back.  I thought I was having hot flashes, because I have been having night sweats and during the day I sometimes get so flush and hot that the sweat literally drips onto the table.  I have rosacea and I flush easily.  I am disabled due to depression/anxiety/psychosis and I have even undergone ECT treatment for it (electroconvulsive therapy-shock treatment)

I was reading some of the bios and started to cry…  I could see me in so many of the stories and pictures.  Could it be possible that all of my issues are related to this disease that I had never even heard of before?  I do not want to be sick, but if it is Cushing’s that I have, I will have hope that I haven’t let myself go. 🙂  You all seem to be very loving and supporting.  Thank you for being here.

There are other symptoms I have, but these are the most bothersome.  My blood cortisol level came in at 22 and my aldosterone was high also.  I am waiting for an appointment for an abdominal CAT scan and a referral to an endochronologist.

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