Desperately seeking corticosteroid

Posted by sherriec1964 @sherriec1964, Oct 21, 2022

So it's been 5 months since I had one of my adrenal glands removed and the other one refuses to produce. My endocrinologist keeps titrating but my levels are dropping. In September my cortisol level was at 3.1 in October 1.9 but thyroid panel is in normal range. Right about now I feel like I'm a guinea pig. After every cortisol test it's back to 15mg in the morning and 5mg in the afternoon for one week. The next week 10mg in the morning and 5mg in the afternoon. An if you can tolerate it on the 3rd week then take 10mg in the morning and none in the afternoon. An retest. I am totally frustrated 😠 with this process. But it is called medical practice and not medical sure thing.

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Sue, Volunteer Mentor | @sueinmn | Oct 23, 2022

@sherriec1964 Ouch, I feel your frustration when you say, "But it is called medical practice and not medical sure thing." Our bodies, and recovery times, are all so different that we do, in effect, become laboratory experiments sometimes. Here is an article which reports case studies just like yours. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4366787/
I think if you click on the links at the bottom, you may find more details on how each person progressed. At least it can help knowing you are not the only person with this issue.

Has the doc tried a different corticosteroid? Have you and your endocrinologist considered contacting a research and teaching hospital? Or are you in a position to seek care at Mayo (http://mayocl.in/1mtmR63) or another large facility?

Sue

sherriec1964 | @sherriec1964 | Oct 24, 2022

In reply to @sueinmn "@sherriec1964 Ouch, I feel your frustration when you say, "But it is called medical practice and..." + (show)

Thanks for the information link. We have never discussed different corticosteroids just the weekly titrating levels of hydrocortisone every three weeks and another cortisol level test. I actually live 126 miles from Jacksonville, FL if I'm not mistaken there is a Mayo Clinic there. I don't know if there is a facility in Tallahassee, FL. We have never discussed a research or teaching hospital.