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Emily B-C (EmilyBC), Undiagnosed Bio

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undiagnosed3

 

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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Elaine, Undiagnosed Bio

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golden-oldie

 

 

 

Hi my story is so much like all the others that I have been reading on this site.

For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can’t take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.

This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!

In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.

I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH’s came back normal (2.7) but my ACTH and Cortisol is high. I don’t have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.

My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.

 

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Laura (Loves2Cruise), Adrenal Bio

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The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with Cushings over 14 years ago and really thought it was over and done with. After seeing several doctors while starting in high school and into college, primarily to explain why my cycle had completely stopped, I was given various responses from the typical, “oh, it’s probably just stress” to “let’s just put her on birth control and it will start right back up.” And while the latter may have been true, it certainly didn’t explain the weight gain round my midsection, especially when I was eating so little while in college because I just couldn’t figure out why my pants wouldn’t fit anymore. It also didn’t explain the “buffalo hump” at the base of my neck, or why my hair seemed to be falling out. Or why my blood pressure was high all the time. Or why I had constant headaches. So only after my mom refused to accept “stress” as an answer, she turned to Dr. Google, and started looking up my symptoms. She finally convinced a doctor to test my cortisol levels, which were off the charts.

Luckily, I went to college in Milwaukee, and saw Dr. Findling who immediately diagnosed me with Cushings. After dealing with this for several years, Dr. Findiling diagnosed the disease, located the tumor (left adrenal gland), had it removed, and was on my way to recovery in a matter of a few months. By the time I returned to college in the fall, after having the turmor removed over spring break, people did not even recognize me, my appearance had changed so drastically.

Well, fast forward to today, and I am wondering if the one adrenal gland could have anything to do with what my husband and I have dealt with for the past 2 years. We conceived 2 children easily with no problems who were born in 2006 and 2009. When we tried to have baby #3, two years ago, something was different. We practice natural family planning, so I was very aware of my cycles. But after a surgery and terrible cold, things changed. No longer could we get pregant. I saw several different doctors who all said again, “it’s stress” or “there’s nothing wrong with you.” One even gave me a brochure on how to have a baby. Really! Anyway, I started myself on an “adrenal fatigue” diet last fall, started taking Maca root (because I read it was good for adrenal health), and we got pregnant last November after trying for over a year and a half.

Unforunately, at a 13 week ultrasound, we discovered that the baby stopped growing at 9 weeks. We figured we were just a statistic, and 1 in 3 pregnancies ends in miscarriage. We did not have any testing done because we figured we were just one of the odds. We conceived again in May, only to find out at 12 weeks that our little peanut stopped growing at 11 weeks. We opted for testing this time and are awaiting the results to determine whether or not there was a chromosomal abnormality. Although I am sure it happens, to lose 2 babies, after confirming heartbeats multiple times, seeing it move around, and find out it has passed is devestating. I won’t forgive myself if this happens a third time without ruling out the role my one adrenal gland may have played in this.

One doctor did test my thyroid during our efforts to get pregnant, and my RT3 was very high, especially in relation to my T3. He just put me on T3 and said I was “stressed.” I am now wondering if yes, I was stressed, but my one remaining adrenal could not handle the necessary work required to sustain a pregnancy. Or affected our efforts to even conceive. I have read (though don’t completely understand) the relationship between the RT3 and adrenal glands. I am going to return to Milwaukee to have my remaining gland tested to see if it is indeed working at an optimal level.

I guess my point in joining this board is to not only share my story with Cushings, but also to see how patients have fared after the Cushings was resolved. Has anyone had any long-term affects from only having one adrenal glad? Specifically as it relates to fertility? Curious to hear from others who have gone through this experience. I know there are not many of us. I can’t tell you how many times I have heard, “wow. I have never met a cushings patient before” from various doctors. But I am glad to find others who have shared this experience.

 

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