Hi, My name is Diana. I have been sick for over two years now.
I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.
I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.
I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.
Here are my symptoms:
Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)
Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test
Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery
Extreme fatigue/ as tired when I get up as when I go to bed.
Muscle weakness with any exertion, especially going up stairs and most days just walking across the room
Pallor
low grade fever on and off
blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently
Rising cholesterol over the last couple of years with no change in diet
Right flank pain
Low back pain
Burning pain in upper buttocks and upper back thighs
Stomach and groin pain
Extreme hip pain
Shaky and fine tremor in hands and sometimes my head also shakes
Mildly elevated cortisol (24hr urine cortisol test)
Have been diagnosed with osteopenia in the past
Hashimoto’s
I break out with clammy/flushing skin sometimes during the day but mostly at night.
Cannot tolerate carbohydrates (not for many years) /have many food intolerances
Easy bruising
So, that’s pretty much it. Thank you for letting me join!
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Oct 07, 2014 @ 14:43:36
Hi there ,
I too have been diagnosed with subclinical Cushings. The difference from full blownCushings is primary the “look” .
I too was extremely tired, had hair loss and confused emotions border line high blood pressure but above all a large adrenal tumour on my left adrenal gland and high cortisol in the blood.
If it could help you, I had to undergo surgery and had the left adrenalectomy. It went good for me but when I awaked I became adrenal insufficient for a while but no worries you will get over that too.
I think that overall we are lucky that treatment are available for us now.
Do not worry things will be better 🙂
Jul 14, 2016 @ 03:29:23
Thank you for sharing your journey and fight against this unpredictable disease. I had an MRI of my Adrenal glands and came back normal. Abdominal ultrasound upper and lower came back normal. No POS or possible tumors of organs my Endocrinologist said. I had a CT of my head and came back normal but to my understanding a CT is not sometimes through enough. I have an unknown mass lump in my mediastinal area I told Endocrinologist and primary doctor about but was ignored. Now I am going for an chest Xray Thursday. Like many other bios I read this in common and very frustrating. Thank you
Jul 13, 2016 @ 02:32:34
Hi,
I’m having similar symptoms myself. Please feel free to contact me at cmt1980@att.net I would like to know more and perhaps it would help me as well. Thank you. very
Jun 26, 2018 @ 12:35:51
Hello! I know that this post was back in 2014, but I am hoping that there has been an update for you. My symptoms are almost identical to yours, but I have yet to have any cortisol testing done (I have doctors appointments coming up that I will ask about having the tests done).