Wednesday, April 22, 2009

Kirsty (kirstymnz), ectopic adrenal bio

I don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing's syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing's.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing's was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

Together they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing's disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Email Kirsty

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Friday, February 13, 2009

Lori (Frog), Ectopic Cushing's

My name is Lori. I was diagnosed wtih Cuhsing's Syndrom in Dec.

Despite all the testing, we have yet to locate the source. It's been very frustrating and my symtoms seem to be getting worse. My doctor is in contact with a Dr. Neiman out of Bethesda in the hopes of getting me into her clinical trial with the PET testing using some new drugs. In the meantime I wait.

My doctor thinks it may have started about 4 years ago. I had more acne around my jaw line than I ever did as a teenager. My weight started to creep up so I started WW. Even though I lost 22 lbs, my face was very much the "moon face" and I couldn't understand why. Bouts of depression had my weight going back up again despite WW and walking 3 miles 4-5x week. I had been in and out of the doctors office.

I had severe pain in my right hip, had an MRI and it showed lots of fractures in my sacram, pelvic bone and 4 fractured ribs. My doctor thought I was being beaten at home because I could not recall any "trauma" to have caused all of this. So the tesing began and I was deficent in calcium, Vit. D, potasium. My bone density tests came back way abnormal for a 42 yr. old, my muscles are extremely weak. So I was diagnosed with osteoperosis and put on supplelments and did lots more testing until my doctor suggested Cushings and sent me to an endocrinologist and more testing began.

Now I'm in a holding pattern to figure what to do next. Any one else been in this situation?

Most ectopic patients the tumors are found in the lungs but the CT scans didn't show anything, nor did the CT of my abdomen or pelvic areas. Nothing on the adrenals or pituitary. I've not been given any medications to help lower the cortiso levels in the meantime because I have high blood pressure as a complication as well.

Any information or contact with anyone in my same situation would be an enormous relief. Hopefully I'll be hearing something soon from my doctor to set up some kind of treatment plan.

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Friday, January 9, 2009

Tins (Tina) ectopic bio

I am 46 years old

I started to notice my blood sugars would not come down from 300-400 on 200 or higher units of insulin a day sometimes it would go even higher. My doctor told me I was insulin resistance and just need to watch my diet more.

Then I noticed my middle section started to grow and my face started to swell my insulin resistance got worse I was put on u500 insulin at high doses over 500 units aday. One doctor told me that I was not following his diet as he told me too and that I was storing fat to work it off.

I finaly found a doctor that was concern and sent be to Utmb the experts this has took over two years. This doctor has run every test know and since it is not cut and dry to the point she don't know what to do my 24 hour urine has been high until this last one it was normal but it went up in my blood this time.

CT Scan picked up a very small leison in my lung and the octuride scan picked up one in my adrenal gland but since both didn't pick them up she don't beleave them.

She consulted a friend and she told her to just repeat 24 hour urine every 2 to 3 months and something will grow big enough to show up.

I need help I don't know what to do I am about ready to cry. If anyone know what I can do please let me know.

I was diag with cushings maybe.

Thank you Tina

Email Tina

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Tuesday, November 11, 2008

Daniel (Danny Boy), ectopic bio

I have been dealing with this for about a year now and from what I am reading we are actually lucky to have found it that quickly.

It all started while I was at work one day and we tested my blood pressure just to check it. I am a firefighter and we had just came back from a call.

After about 4 months of going to tons of Drs. and having every test imaginable my wife and I were doing our own research.

We came across Cushings and noticed that practicully every sign and symptom that was listed. The bruising was continually getting worse, I was getting weak, my blood pressure couldnt be controlled and I was gaining weight despite eating right and daily exercise.

My family Dr. tested for Cushings and quickly came to my current diagnosis. We then had to go through a series of test to try and find the tumor that was thought to be in his pituitary glad since this is the most commen place to find them. After MRI's, CAT scans, Venus sampling, more blood work, they were unable to find anything. One MRI that was done was of my chest and adrenals and did show up a mass in my right lung. Though our constant questioning of this mass was ignored this came to be the root of the problem.

So I find out that not only do I have a rare disease but that I have an even more rare form with the tumor in my lung. I am at the point of getting ready to go into surgery to remove the tumor from my lungs and I have to look forward to the recovery and what lies ahead for me in life.

My wife and I are expecting our first child in Feb. and I have to keep my head up and get better for them and myself.

Email Danny

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