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Marianne
@mrmie

Posts: 36
Joined: Jul 05, 2018

Possible Adrenal Issues

Posted by @mrmie, Mon, Jul 16 4:25pm

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.

REPLY

@mrmie
I have secondary adrenal insufficiency and my disorder is managed by the Mayo Clinic in Rochester, Minnesota. I live on the east coast and visited Mayo for consultation last summer. I am returning for further consultation this summer. My endocrinologist at Mayo is Dr. Alice Chang. Choosing to go to Mayo was the best decision my husband and I could have made regarding my health situation. They set up a completely different and very effective action plan for both daily management and management of emergency situations (adrenal crisis). They were kind and extremely helpful both with the adrenal dysfunction and other conditions I have which affect the primary disorder. I highly recommend them.I saw endocrinology first and then they added in other specialists for the other conditions. It can be a bit of a whirlwind as they try very hard to manage all aspects of your medical condition during the time you can be there but at the same time it was so helpful! I am returning for followup due to some unexpected complications and am confident they will be able to improve my situation. Your listed symptoms sound similar to mine, especially during the early stages of my problems but I'm not a medical doctor so I strongly recommend Mayo. I couldn't get answers where I live despite it being a major city with well known hospitals. Mayo had the answers, the treatment plans and the resources. They also coordinated with my primary care team and continue to do so. They have also been available to me as needed. From my perspective, going to Mayo was both life saving and vastly improved my quality of life. What else can I answer? I'm available and happy to answer any questions or concerns that I can. I wish you all the best. Rhoda

@rckj

@mrmie
I have secondary adrenal insufficiency and my disorder is managed by the Mayo Clinic in Rochester, Minnesota. I live on the east coast and visited Mayo for consultation last summer. I am returning for further consultation this summer. My endocrinologist at Mayo is Dr. Alice Chang. Choosing to go to Mayo was the best decision my husband and I could have made regarding my health situation. They set up a completely different and very effective action plan for both daily management and management of emergency situations (adrenal crisis). They were kind and extremely helpful both with the adrenal dysfunction and other conditions I have which affect the primary disorder. I highly recommend them.I saw endocrinology first and then they added in other specialists for the other conditions. It can be a bit of a whirlwind as they try very hard to manage all aspects of your medical condition during the time you can be there but at the same time it was so helpful! I am returning for followup due to some unexpected complications and am confident they will be able to improve my situation. Your listed symptoms sound similar to mine, especially during the early stages of my problems but I'm not a medical doctor so I strongly recommend Mayo. I couldn't get answers where I live despite it being a major city with well known hospitals. Mayo had the answers, the treatment plans and the resources. They also coordinated with my primary care team and continue to do so. They have also been available to me as needed. From my perspective, going to Mayo was both life saving and vastly improved my quality of life. What else can I answer? I'm available and happy to answer any questions or concerns that I can. I wish you all the best. Rhoda

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Thank you @rckj for your response! I'm so glad Mayo has been helpful for you. Currently I'm waiting for a referral to another doc. With the waxing and waning of my symptoms over the years, I'm wondering if I have an isolated ACTH deficiency. My cortisol was 8 a year ago with a proper response to ACTH stim test. My endo said my cortisol was normal. I actually became worse a few months after that but had no cortisol drawn. My cortisol level was 17 last month which makes sense since I am able to do house chores and enjoy getting out some. It just seems like once I hit a certain level of activity, my body can't keep up and I relapse to the point of barely able to shower and it takes months to recover to just half of what I was. I thought I could handle a part time job this past Spring but relapsed a month later. So I'm on a mission for answers but I feel in order for my bloodwork to show anything, I will have to fall into a serious relapse. Thanks for listening Rhoda!

@rckj

@mrmie
I have secondary adrenal insufficiency and my disorder is managed by the Mayo Clinic in Rochester, Minnesota. I live on the east coast and visited Mayo for consultation last summer. I am returning for further consultation this summer. My endocrinologist at Mayo is Dr. Alice Chang. Choosing to go to Mayo was the best decision my husband and I could have made regarding my health situation. They set up a completely different and very effective action plan for both daily management and management of emergency situations (adrenal crisis). They were kind and extremely helpful both with the adrenal dysfunction and other conditions I have which affect the primary disorder. I highly recommend them.I saw endocrinology first and then they added in other specialists for the other conditions. It can be a bit of a whirlwind as they try very hard to manage all aspects of your medical condition during the time you can be there but at the same time it was so helpful! I am returning for followup due to some unexpected complications and am confident they will be able to improve my situation. Your listed symptoms sound similar to mine, especially during the early stages of my problems but I'm not a medical doctor so I strongly recommend Mayo. I couldn't get answers where I live despite it being a major city with well known hospitals. Mayo had the answers, the treatment plans and the resources. They also coordinated with my primary care team and continue to do so. They have also been available to me as needed. From my perspective, going to Mayo was both life saving and vastly improved my quality of life. What else can I answer? I'm available and happy to answer any questions or concerns that I can. I wish you all the best. Rhoda

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@mrmie happy to hear from you and wishing you all the best. Hope we can stay in touch. Rhoda.

Hi @rckj and @mrmie, I'd like to invite @dawn_giacabazi and @kdubois into this discussion. Both members (and mentors) have been through extensive investigations related to endocrine and suspected adrenal issues. Their insights into searching for answers, finding a diagnosis and pharmacogenomics (drug-gene testing) may be helpful for you.

Marianne and Rhoda, Have either of your heard or or had drug-gene testing done?

Thanks @colleenyoung. I have not had drug gene testing done. I'm guessing it has to do with the way our bodies metabolize medications.

@mrmie

Thanks @colleenyoung. I have not had drug gene testing done. I'm guessing it has to do with the way our bodies metabolize medications.

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@mrmie Yes, @kdubois, speaks very highly of how it helped her. Teresa

@mrmie

Thanks @colleenyoung. I have not had drug gene testing done. I'm guessing it has to do with the way our bodies metabolize medications.

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Hmmm i'm not sure how it can help since I don't have a diagnosis. I'm curious @hopeful33250

@colleenyoung

Hi @rckj and @mrmie, I'd like to invite @dawn_giacabazi and @kdubois into this discussion. Both members (and mentors) have been through extensive investigations related to endocrine and suspected adrenal issues. Their insights into searching for answers, finding a diagnosis and pharmacogenomics (drug-gene testing) may be helpful for you.

Marianne and Rhoda, Have either of your heard or or had drug-gene testing done?

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@colleenyoung Colleen, I have never heard of drug gene testing but just did a little research and I think it might be enormously helpful to me. Also more than happy to talk to the other members of the group and I hope it would be of mutual benefit. I am so struck by all of our struggles and am so appreciative of all the support and shared knowledge. Thank you. Rhoda

@mrmie

Thanks @colleenyoung. I have not had drug gene testing done. I'm guessing it has to do with the way our bodies metabolize medications.

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@mrmie @rckj: indeed pharmacogenetics is the study of how your genes affect your body’s response to medications. Here is more information about pharmacogenetic testing from Mayo Clinic http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp

While I'm not suggesting that this is the answer for your specific issues, I know that both Dawn and Kelly found life-altering information after doing the testing. They were able to understand what drugs did and did not work for them. In Kelly's case, she discovered that her diagnosis was not endocrine related. You can read more about her story here:
– Learning to Trust Again – My Journey with Drug Intolerance – Experts by Experience https://socialmedia.mayoclinic.org/2018/05/04/learning-to-trust-again-my-journey-with-drug-intolerance-experts-by-experience/

@kdubois and @dawn_giacabazi talk about their experiences here on Connect:
– Cytochrome P450 Drug Metabolization Polymorphisms https://connect.mayoclinic.org/discussion/cytochrome-p450-drug-metabolization-polymorphisms/
– First appointment at Mayo with Medical Genetics https://connect.mayoclinic.org/discussion/first-appointment-at-mayo-with-medical-genetics/

Hope this helps.

I am so sorry for the delayed response. By all means, I am no expert! But we use Genetic testing on a daily basis to help doctors treat patients more efficiently and effectively. Their are numerous different types of genetic testing used based on the end goal. In my Home Health practice we us in regards to medication prescribing and dosing. The testing we use is called pharmacogenetics testing or otherwise known as PGX testing. In Illinois is is covered 100% by most Insurance companies and Medicaid. If you were to pay privately for it the cost is approximately $850. It is a test that you take once in your life.

An overly simple explanation of pharmacogenomics is that by analyzing and understanding and individual’s genetic makeup and how their genetics may affecttheir reactions and responses to certain medications or drug treatments, healthcare providers and patients can make more informed decisions about medications and healthcare overall.

In our practice we have taken 45 geriatric patients who all agreed to the testing with the sole purpose is cross referencing appropriate drug therapy. Of those 45 geriatric patients 38 were on more than 10 prescription drugs. All 38 were found to be on more than 5 prescriptions with either severe drug reactions and/or unable to metabolically process the drugs. All 38 were successful discharged off our services with new drug therapy and returned to a more functional Independence. All reported more than a $250 monthly savings in their pharmaceutical expenses.

The remaining patients were found to be on the appropriate medications for their diagnosis.

I hope this helps!! Have you discussed with your physician?

Hello @mrmie
I have secondary hyperaldosteronism. I was diagnosed after 3 ER visits 2 hospitalizations each lasting 10 days in one month. My blood pressures were very labile over the 300/200’s, severe headaches, extreme fatigue, felt like I was running a marathon. Strangely I felt like I had Fibromyalgia in the worst form. Every joint aches and swelled. Seen alot of local doctors and specialist all concluded hypertension and “sometimes we just don’t know why”

Well I’m kind of stubborn and the morning after my 3rd hospital stay at my physical therapy appointment, my therapist took my blood pressure because my face was very flush, my therapist started to cry. He said to me “Dawn, your going to dye on my table some day!” My blood pressure was 317/246 and my heart rate was 142.
Well I packed a suit case and left for Mayo Clinic within the hour. About 35 min outside Minnesota I started to get into some trouble ended up having a mild heart attack and landed myself in St Mary’s Hosp. I was told many times how very fortunate I was that the on call doctor who they called in was truly the best of the best (I think they all are). I ended up with a tumor in my right adrenal gland and my left Adrenal gland is not functioning appropriately.

2 years later and ALOT of complications and testing and treatments and doctors, I am Finally on the mend taking the right medication. No more 300 blood pressures!!

I am confident that your medical team will find the right treatment for you!!

That is good to know Dawn. Thanks for your work.

@dawn_giacabazi

Hello @mrmie
I have secondary hyperaldosteronism. I was diagnosed after 3 ER visits 2 hospitalizations each lasting 10 days in one month. My blood pressures were very labile over the 300/200’s, severe headaches, extreme fatigue, felt like I was running a marathon. Strangely I felt like I had Fibromyalgia in the worst form. Every joint aches and swelled. Seen alot of local doctors and specialist all concluded hypertension and “sometimes we just don’t know why”

Well I’m kind of stubborn and the morning after my 3rd hospital stay at my physical therapy appointment, my therapist took my blood pressure because my face was very flush, my therapist started to cry. He said to me “Dawn, your going to dye on my table some day!” My blood pressure was 317/246 and my heart rate was 142.
Well I packed a suit case and left for Mayo Clinic within the hour. About 35 min outside Minnesota I started to get into some trouble ended up having a mild heart attack and landed myself in St Mary’s Hosp. I was told many times how very fortunate I was that the on call doctor who they called in was truly the best of the best (I think they all are). I ended up with a tumor in my right adrenal gland and my left Adrenal gland is not functioning appropriately.

2 years later and ALOT of complications and testing and treatments and doctors, I am Finally on the mend taking the right medication. No more 300 blood pressures!!

I am confident that your medical team will find the right treatment for you!!

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Wow! Glad you are on the mend!

@dawn_giacabazi

I am so sorry for the delayed response. By all means, I am no expert! But we use Genetic testing on a daily basis to help doctors treat patients more efficiently and effectively. Their are numerous different types of genetic testing used based on the end goal. In my Home Health practice we us in regards to medication prescribing and dosing. The testing we use is called pharmacogenetics testing or otherwise known as PGX testing. In Illinois is is covered 100% by most Insurance companies and Medicaid. If you were to pay privately for it the cost is approximately $850. It is a test that you take once in your life.

An overly simple explanation of pharmacogenomics is that by analyzing and understanding and individual’s genetic makeup and how their genetics may affecttheir reactions and responses to certain medications or drug treatments, healthcare providers and patients can make more informed decisions about medications and healthcare overall.

In our practice we have taken 45 geriatric patients who all agreed to the testing with the sole purpose is cross referencing appropriate drug therapy. Of those 45 geriatric patients 38 were on more than 10 prescription drugs. All 38 were found to be on more than 5 prescriptions with either severe drug reactions and/or unable to metabolically process the drugs. All 38 were successful discharged off our services with new drug therapy and returned to a more functional Independence. All reported more than a $250 monthly savings in their pharmaceutical expenses.

The remaining patients were found to be on the appropriate medications for their diagnosis.

I hope this helps!! Have you discussed with your physician?

Jump to this post

No I have not discussed this with a physician. It does not sound like me. I am only on one medication and I wasn't even on that when my issues first started in my early 20s. But thanks for sharing. It is good information to know

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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