"I pray to be like the ocean, with soft currents, maybe waves at times. More and more, I want the consistency rather than the highs and the lows."~Drew Barrymore
Are you feeling well while living with Addison's disease?
If the answer is "Yes", please read what I have written and comment on what I have said. I don't know many Addisonian's who feel well and I would love to have your input.
If the answer to this is "No", there are things you can do to change that answer to "Yes". Just because you read journal articles that say that people with Addison's disease don't have as high of quality of life as other people, don't accept it. Has your doctor told you that you won't feel as well as other people? Don't accept that BS either.
Here are some steps you can take to have better overall health:
Determine if you have primary or secondary adrenal insufficiency. Is the problem with your adrenals (autoimmune, hemorrhage, bilateral adrenalectomy, etc) or secondary (pituitary tumor, autoimmune pituitary)? IF YOU DON'T KNOW, YOU HAVE TO FIND OUT!
List your other diagnosed diseases and removed organs. For example, have your ovaries been removed?
Do research about your specific conditions and find a doctor that has experience with Addison's. Call doctor's offices and ask if a doctor has adrenal patients. You'll be surprised at how many don't!!
Get tested for the right things. Renin and aldosterone if you're primary. Pituitary hormones (IGF-1, PRL, LH, FSH [ACTH is pointless to test at any time except diagnosis - it's pulsitile, fragile and not a direct negative feedback loop with cortisol]) if you're secondary.
ANYONE WITH ADDISON'S DISEASE SHOULD GET THESE TESTED because Addison's is often found with other diseases: Thyroid (FT3, FT4 AND TSH), testosterone (Free, % Free and Total), Endomysial antibody (EMA-IgA), Tissue transglutaminase antibody (tTG-IgA), Total serum IgA, Antibodies against gliadin (AGA-IgA, AGA-IgG), electrolytes.
- Don't rely on your doctor.
- Do research through PubMed or MedScape (both are free) get the Addison's Owner's Manual (see link on sidebar or Google it).
- Take the right medication at the right time in the right dose. Chances are if your doctor told you to take your hydrocortisone 10 mg in the morning and 10 mg before bed, he/she doesn't know what the hell he/she's talking about! That's very old school information and will wreck your sleep, growth hormone cycles and generally make you miserable. If your doctor has you on more than 30 mg of hydrocortisone or the equivalent of prednisone, for uncomplicated adrenal insufficiency, get a second opinion. If your doctor put you on prednisone and has never tried hydrocortisone, DO SOME RESEARCH and get another doctor.
- Take your meds at the same time every day
- Generally take the same doses of hydrocortisone and florinef every day
- Sleep regularly
- Have good "sleep hygiene", a regular bed time and waking time, dark room, etc
- Stay away from caffeine within 8 hours of bed time
- Eat well and eat regularly
- Keep your blood sugars stable by eating regularly throughout the day. EAT BREAKFAST. Eat protein.
- Avoid chemicals like dyes and sodas (soda has phosphoric acid. Phosphoric acid aids in osteoporosis) ESPECIALLY DIET SODAS. Diet soda has aspartame. You can do your own research but if you feel awful AND drink aspartame, maybe you should think twice about it.
- Stay away from refined foods they have chemicals and no nutritional value
- Get enough water, avoid juice (juice, even real juice is sugar water)
- Exercise if you can, regularly
- Exercise is all relative, for some of us it might be getting up during a commercial for an entire hour program. For others, it might be a walk with the dog.
- If you feel crappy, DON'T exercise! Use your judgment. If your body gives you warning signs (diarrhea, gut cramps, exhaustion, aching muscles and bones), DON'T exercise until you feel better.
- Be kind to yourself
- If you can't do whatever, don't!
- Don't be hard on yourself if you can't.
- If your family tries to make you feel bad about yourself, don't listen!