So many people, especially the undiagnosed and newly diagnosed ask me, "Why didn't my doctor know what tests to do? Why didn't he* tell me X, Y or Z?"
It's incredibly simple. Your doctor doesn't know. Your doc doesn't know the tests, how to interpret them, what other hormones to check for or how to instruct you to take your meds.**
How could your know anything about AI? The incidence of AI in the general population is 40-60 cases of AI per million. That's not many people. The chances of your doctor having any experience with AI are very small. More than likely, your doctor might have had someone who became secondary because of steroid treatment for a different disorder (like lupus) or because of an organ transplant. Let's give your doctor the benefit of the doubt, he's got FIVE AI patients out of hundreds of other patients. FIVE. How much time can he spend researching and reading about AI? Why would he? He learned a little blurb in med school, give the patient steroids once or twice a day, they will have a poor quality of life but they will live. If your quality of life is slightly above poor, he's not going to try to do more. You are ahead of the curve why should your doctor do more?!! Numerous studies say that people with AI have poor quality of life. If your quality of life is poor, well, that's what happens with AI and it's acceptable. Why do more?
How to avoid being a mismanaged AI patient.This is going to be so boring for some of you. Sorry.
- Learn about AI Adrenal Insufficiency & Addison's Owner's Manual
- Insist on an injection kit. If your doctor won't give it to you, he wants you dead and you need to find a different doctor. IN MOST STATES, EMTS AND PARAMEDICS ARE NOT PERMITTED TO CARRY OR INJECT THE LIFE SAVING SOLU-CORTEF.
- Adrenal crisis in treated Addison's disease: a predictable but under-managed event. CONCLUSION: The endocrinologist has a responsibility to ensure that Addison's patients have adequate access to life-saving emergency injection materials and repeated, practical training sessions in how to use them, while the general practitioner plays a vital role as in arranging prompt emergency admissions.
- Join a forum that fits your needs and provides support.
- Replace all missing hormones in the appropriate order.
- Test and retest for comorbid conditions.
- Lose weight if you are fat and stop drinking all types of soda (OK, that's my personal bias)
- Get 30 minutes of exercise every day of the week to maintain some semblance of health, get more exercise if you want to be healthier.
So you've done everything above.
Now you know your shit. You've got the AI info down, you know what your hormone status is. You need to educate your doctor. Be kind, be thoughtful, hand him info to put in your "file". If you take the nice approach and this dude is totally unwilling to discuss the benefits of physiologic dosing, DHEA, or the basics that will keep you from keeling over, stop right there and either fire him or back out of the room. Get another doctor who treats you like a living, breathing, intelligent human.
- Let's say you've found a good doctor.
- Make sure you get copies of ALL of your radiology reports and blood work. Put them in a neat binder by date.
- Read about AI, read, read. Use reputable sources (medscape, pubmed, scholar.google.com). Share the info on a forum. LEARN.
IF YOU ARE THE EXPERT, YOU WILL SUCCEED!
**I'm SURE someone out there has a super fab doc that knows EVERYTHING and has done EVERYTHING right. Please post his name, address and phone number in the comments section. The very competent AI docs are few and far between. If you're not comfortable posting publicly, post on my forum at www.addisonssupport.com or firstname.lastname@example.org.