Possible Adrenal Issues

@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

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!

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

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

@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 @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?