Rant: It's not OK to have a poor quality of life with adrenal insufficiency

Every study I've read regarding adrenal insufficiency (AI) and quality of life (QOL) states that we all feel like shit and that's the status quo.  Our doctors might (but probably don't) read these studies and believe them.  Most doctor's experience with AI patients is that they are elderly, on long term steroids or transplantation recipients.  These are people who generally don't feel well because of other issues and may be on huge doses of steroids to further exacerbate their poor QOL.  Your doctor probably has decided that people on steroids feel terrible.  You will have to live with feeling terrible.  Get a therapist to feel better.

No, not true.  Living with feeling terrible or getting a therapist is not the whole answer to feeling better.  Learning about AI and how your doctor is failing you is the best way to feel better.  A therapist may help you adjust mentally to AI.

Generally (yes, you might be the exception), undiagnosed AI is a slow slide toward death.  Symptoms of AI are so subtle that we look healthy (tan!  thin!  low blood pressure!) and very lazy until we are in a hospital bed with people wondering what went wrong.  If your medical care is even moderately decent, you will be given 100 mg of Solu-Cortef and saline IV until you are hydrated, BP comes up and color returns to your face.  You will be discharged with  a prescription for 20 mg of hydrocortisone per day and instructions to take 10 mg morning and night.  Find a good endocrinologist.  For the first time in months or years, you will actually feel OK, barely nauseous, no diarrhea for the first time in who knows how long.  You might even want to eat.  Coming from feeling like death warmed over, the improvement once you are put on hydrocortisone is incredible.

For most doctors and patients, this improvement will be enough to maintain treatment with 20 mg of HC per day.  Once the patient is able to reenter life, bad shit happens.  All the signs of under replacement are ignored.  Nausea, vomiting, diarrhea, low blood pressure, low blood sugar and overwhelming fatigue are completely acceptable because your doctor said taking 20 mg of HC per day was what you needed to do.

Here's where you or an advocate for you comes in.  It's NOT OK TO FEEL AWFUL AND SUFFER FROM THE SAME SYMPTOMS OF ADRENAL INSUFFICIENCY THAT YOU DID BEFORE BEING DIAGNOSED BUT TO A LESSER EXTENT.

1. If you are showing symptoms of under replacement, you are under replaced.  It's unnecessary and much more dangerous to be under replaced consistently than slightly over replaced once in a while.
2. A lot of doctors do not know that the adrenals produce more than cortisol.  Other hormones need to be replaced in addition to cortisol.  Your body wouldn't have made them in the first place if it didn't need them for something!  Yes, women, you need testosterone.  Do you like having a heart muscle that beats?  Testosterone keeps your heart muscle and bones strong.
3. Make sure your Florinef dose is right.  Low sodium is a major factor in osteoporosis (and low BP).  Hyponatremia-induced osteoporosis  All these years that your doctor has tried to guilt and shame you into taking less and less HC to avoid osteoporosis is misguided and probably detrimental.  Make your doctor focus on sodium.
4. Do you have other diseases?  Have you even been tested properly?  Probably not.

Unfortunately, it's too hard for many people to take responsibility for their health.  I do know how hard and stressful it can be to find a doctor. Research is time consuming.  The hardest part of feeling well is believing that you actually deserve to feel well.  Adjusting to a crappy new normal is fine if you are happy with it.  Don't be happy with crappy quality of life  Adjust to a new normal that feels good most of the time.  Take enough meds to live life well.  Research.  Learn.  Get your test results.  Don't settle for feeling like shit.  It's not OK.  

Shameless self-promotion coming up.  Join the FREE Addison's Support Forum if you can't seem to get better on your own or want support or want to talk about the frustrations of adrenal insufficiency.  If you don't want to be on a semi-private forum, I offer my advocacy services to help you understand adrenal insufficiency, help you understand your results and/or help your doctor have the information she needs to treat you properly.