Possible Adrenal Issues

Posted by Marianne @mrmie, Jul 16, 2018

I'm wondering if there is much discussion on here related to adrenal diseases (primary or secondary). I have had live-changing, wicked fatigue for 2 years. It has also happened in my twenties and 1 year in my thirties. This round hit at age 43. I was working full-time, working out, and loving life. I had an endocrine work-up and was told everything was negative except for reactive hypoglycemia. However, in doing my own research (from reputable medical sources), I have found some things that contradict what my endo told me. He thinks my symptoms are related to elevated Epstein-Barr titers. However, I was told by an infectious disease doctor that I do not have EBV. So, the endo recommended Mayo Clinic. Has anyone had experience with going to Mayo for these symptoms (extreme fatigue, hypoglycemia, salt cravings, increased thirst, decrease appetite)? It seems like most doctors just write it off as depression, not exercising, not eating right. But I'm probably one of the few patients that actually eats tofu and sardines! And I absolutely would love to get back to running and lifting weights. But that was difficult when I couldn't even take a shower at my worst. Now I am able to take care of house chores and I do go on walks. However, I usually need to nap later in the day and feel worse after physical activity. Thanks for listening! I appreciate any input.

@catnip

Hi. I am new to this forum. I have an adrenal gland tumor and have had it since 1991. It finally decided to act up within the last 6 months growing larger and my cortisol level is sky high which is a problem. I now have an endocrinologist who has run a boat load of tests and believes the adrenal gland should be removed. I am gaining weight and no matter how much I exercise the cortisol releasing is the problem. My doctor also is associating this with Cushings' Disease. I have had new onset of headaches, high blood pressure, fatigue, and lack of energy in the past 6 months. I have had a variety of blood work and urine testing along with CT, MRI, Octretide scans which do not report it as being a metastatic problem at present but I very much look forward to surgery at Mayo Clinic. I wondered if anyone here has had an Adrenalectomy and how they felt after the surgery. Also was in laparoscopic or surgical?

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Hi there @catnip ! I recently had my gallbladder removed at Mayo Clinic and while looking for some advice on diet modification when I stumbled upon this group. I wanted to give you a little of my history with Cushing's. I am now 38 years old but when I was a senior in high school, I started to gain weight for no obvious reason. I was getting headaches, and my cycle basically stopped. I had the puffy face, my hair was thinning, and I had the "buffalo hump" on my back. I was taken to a couple of doctors who just said I needed to watch my eating. I started my sophomore year of college in Milwaukee and when I came back for a break, my parents took me to my OBGYN who said that I was just "stressed" from college and suggested that I be put on birth control. Well that wasn't a sufficient explanation for my mom. She had read somewhere about the effects of cortisol and Cushing's in a medical article and asked that my cortisol be tested. It was EXTREMELY high. So she referred me to an endocrinologist in town who said we should just wait and watch it for a while. Well, I can tell you as 19 year old girl in college who had always been healthy and slim, I did not want to wait anymore. I was barely eating and still growing out of my pants. My parents contacted the Cushing's Research Foundation who referred me to an endocrinologist in Milwaukee who specialized in Cushing's. He took one look at me and said he could almost guarantee that I had it. So after a series of tests, we found out that I had a tumor on my left adrenal gland that was about the size of a golf ball. I had surgery during spring break of sophomore year, and it was the best thing that I could have ever done.

The entire adrenal gland was removed. My other one was "sleeping" but the doctor said that it would wake up eventually. The biggest fear for my parents at the time was that I would get into an accident or have some trauma that would have required adrenaline and my other adrenal gland would be asleep on the job. So I had to wear a medical bracelet for a while to alert medical professionals that I needed adrenaline in an emergency. Honestly, the worst part was the "withdrawal" that I went through after the cortisol-producing tumor was removed. I supplemented with artificial cortisol that gradually tapered off when the other gland started working again. I probably cut it back too far too fast because I just wanted to lose the weight. I remember feeling so anxious sitting in class, like my legs could not sit still. But that didn't last very long and eventually my other adrenal gland turned back on only a few months later. I started to loose weight almost immediately. But when I returned to school my junior year after being home for the summer, I had so many people who didn't even recognize me. The change was so dramatic. For the first time in years, I felt like my old self. I had energy, no headaches, my blood pressure was lower, I felt normal. I didn't have any long-terms complications at all. So the point of all this is for you not to be afraid of having the adrenal gland removed. I felt better than I had in years and the recovery was about as easy as could be. Perhaps that was because I was a lot younger (it's taking a bit longer to bounce back after this gallbladder removal but I am almost 20 years older:). I was so glad to know that it wasn't "stress" or "bad eating" that was causing me to feel the way I did. I hope your surgery is equally as successful and you start to feel better soon!

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Three years ago I had a ct scan at a heart clinic for pain in right calf looking for a possible clot. When I requested the year's records I found they had noted a 14mm nodule on my right adrenal. When I enquired about it they tried to deny it until I produced a copy. Then she said she would check into it. Nothing ever happened. I have been seeing them for years with heart rhythm and blood pressure problems. The urologist said not his expertise. I had developed a left-hand tremor and was sent to a neurologist who immediately pronounced it Parkinsons tremor. After some research, I found the connection of adrenals to several of my problems but no one is interested in pursuing it. At age 79 is it worth looking further into this or do I just write myself off as too old like everyone else seems to. I am very active and do more physical work than most folks half my age. We are in Texas Panhandle but after a 50-year trucking career, Rochester isn't that far away. A little guidance would be appreciated.

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Hi @robjohn and welcome to Connect. You may have noticed I moved your post to this existing discussion on adrenal gland issues so that you can read what others have said about adrenal related problems. Simply click VIEW & REPLY in your email notification and it will allow you to read what others have posted.

Those problems you are experiencing sound awful and it must be so frustrating to not have anyone listen to your thoughts.

I wanted to introduce you to @rckj @mrmie, @dawn_giacabazi and @kdubois as they are fellow Connect members who have experience dealing with the adrenal gland.

Back to you @robjohn, when you bring up the adrenal nodule now, do your physician's ignore you or do they say they will look into it but never get back to you?

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@ethanmcconkey

Hi @robjohn and welcome to Connect. You may have noticed I moved your post to this existing discussion on adrenal gland issues so that you can read what others have said about adrenal related problems. Simply click VIEW & REPLY in your email notification and it will allow you to read what others have posted.

Those problems you are experiencing sound awful and it must be so frustrating to not have anyone listen to your thoughts.

I wanted to introduce you to @rckj @mrmie, @dawn_giacabazi and @kdubois as they are fellow Connect members who have experience dealing with the adrenal gland.

Back to you @robjohn, when you bring up the adrenal nodule now, do your physician's ignore you or do they say they will look into it but never get back to you?

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Hi Ethan, Thanks for the reply. The physicians mostly seem to have the attitude that I am just old and ignorant. I did manage to get an appointment with an Endocrinologist who took a blood sample and sent me for a ct scan. She said we will watch it and see what happens, didn't schedule anything else. I asked Neurologist do I have Parkinson's or something else. His reply was you have Parkinson's tremor but not full-blown Parkinsons. His exam was walk to the end of the hall and back. Prescribed Leva-dopa and Selegiline. I am concerned that I could be harming myself taking something inappropriate and letting the true problem do its damage.

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@mrmie I have been seen at the Mayo Clinic in Rochester for very similar issues. I have all the same symptoms as you except for the blood sugar. I had similar problems with doctors blaming depression and lack of exercise for my fatigue but I finally got a referral to the Mayo Clinic and it has been life changing for me. They found that my vitamin D levels were externally low, I have subclinical hypothyroidism, and my cortisol levels were 5.8. Unfortunately, they weren’t able to diagnose me because my insurance didn’t want to cooperate but they gave me a letter to give to my regular doctor to have my vitamin D and cortisol levels rechecked. They came back low again (4.8) but my regular doctor is claiming that is within normal range. I’m going to try and get a referral to an endocrinologist anyway. The point is, in my week at Mayo, they managed to catch 3 health problems that all my other doctors (about 12 over the course of 3 years) missed and they were able to advise me on how to move foreword. I highly recommend going to Mayo if you can!

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@robjohn

Hi Ethan, Thanks for the reply. The physicians mostly seem to have the attitude that I am just old and ignorant. I did manage to get an appointment with an Endocrinologist who took a blood sample and sent me for a ct scan. She said we will watch it and see what happens, didn't schedule anything else. I asked Neurologist do I have Parkinson's or something else. His reply was you have Parkinson's tremor but not full-blown Parkinsons. His exam was walk to the end of the hall and back. Prescribed Leva-dopa and Selegiline. I am concerned that I could be harming myself taking something inappropriate and letting the true problem do its damage.

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I saw my neighbor with Parkinson's last night and he is slow but functions o.k. in public. He doesn't communicate much, but then it was not his social group, just his wife's. She said he is supposed to exercise a lot. I learned in my Physiology class that the doctors wait until you have a real disease and then they try to treat you. My doctor has changed to Pediatrics and he is salaried to the big Hospital company, so I get checked, offered pills, and that's it. At my age, I dismiss surgery unless it is cancer, and I believe surgery is a good approach for cancer, as well as diet and exercise, if possible. I read that the brain can regrow new cells. It's a start. Dorisena

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