Hi. I am a 40 year old female who has been feeling “not quite right” for almost 10 years. I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years. I continually have vitamin D deficiency issues. I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.
This year, I started feeling worse than usual. I have zero energy and my brain is in a perpetual fog. My muscles and body ache, my face is round, and I have gained 40+ lbs over the years. There are days that I physically cannot get out of bed. I have fainting spells and a racing heartbeat at times. I crave carbs and salt. There is not enough water in the world to drink and I have to run to the bathroom frequently. No matter how hard I try the weight will not come off. When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.
I was an avid equestrian- 3 day eventer. I was riding and showing no less than 3 times a week. I was getting fit. Now I am just a useless blob that can’t do anything. I have been pushing to go to the barn to just groom and be with my horse as much as I can.
My doctor found that I have an unusually high blood cell count a couple of months ago. I was sent to a hematologist to find out why. We did so many tests I quit counting. The conclusion was that I am not sick enough to be sick. So many tests were coming back normal or high normal. No lupus, no leukemia, no answers. I finally asked about Cushing’s because I have a majority of the symptoms listed. My doctor was skeptical, but agreed to let me do a 24 hour urine test. It came back high. This has allowed me to move to an endocrinologist. I also have high levels of reverse T3.
So far I feel like a complete lab rat. I have now done 2 salivary Cortisol tests and have another urine test this week. One of the 2 saliva tests came back very high. My doctor said we have to do yet another saliva test to test the last results. After all of this we will do a dex suppression test.
At this point I am very depressed that I am unable to live my life. Riding is not an option because I just get “floppy” and risk falling off. I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.
I am so lucky to have a doctor that believes my symptoms are real. She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do. For now, I am just a good lab rat.
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Oct 14, 2020 @ 12:44:04
Are you still around to add to this bio?
Mar 26, 2021 @ 07:16:01
Hello! I came across your post somehow and am curious of whether you got any answers. I too have vitamin D deficiency, Ebstein Barr Virus, ibs-c, high A1c and elevated glucose (am thirsty all the time and use the bathroom frequently as well), elevated cortisol, extremely high cholesterol levels, pituitary adenoma, chronic fatigue, and hyperpigmentation on my face….not to mention the weight gain in my midsection front and back.
I am a 46 year old female and was diagnosed with a prolactinoma in 2006. It is now 15 years later and have had to become my own advocate because nobody would listen. I’ve been told I’m just depressed, lazy, and a hypochondriac. The journey has been long and exhausting, to say the least. I am getting ready to do the 24 hr urine again tomorrow and the saliva test. I see my endo today and praying to get some answers to some of my other lab values and ailments. I pray that she listens…and in all honesty, I pray for a diagnosis so that I can get my life back. I’m so tired of the aches and pains, the headaches, the noise in my head that doesn’t go away, and the chronic fatigue with weakness. Prayers for you as well and hoping you have gotten some answers. Please feel free to email me back and let me know how you are feeling now. 😊