Rant: Self-Confidence, get some, get better treatment

After 15 years working with and talking to people with adrenal insufficiency, I've determined that the only ones who get treated decently by the medical community are those that are lucky or who have self-confidence.   I will not go into the lucky part here.  If you have a great doctor, feel great and have all of your adrenal insufficiency and hormonal imbalances addressed, this rant is not for you.

If you lack self-confidence and are not lucky enough to feel fabulous, you need to get some self-confidence.  You might wonder how self-confidence can help you get better treatment.  Here's how.

If you walk into a doctor's office knowing your adrenal insufficiency information, you know more than the doctor.  You've probably read more and you have definitely experienced more.  Doctors like to say adrenal insufficiency is complicated.  It's not.  If you don't understand AI, it IS complicated.  What they are saying is that they don't understand adrenal insufficiency.  You can't expect them to understand it.  YOU have to understand it.  When you come in acting self-confident (not overbearing) and matter of fact, you will make them feel like they ought to step up and fake their own self-confidence.

A self-confident person walks into the office and says:

1.  Here is a paper listing my current meds and dosing schedule.  At the bottom is a list of the refills I need with the name of the med, the strength and the number of refills.  .
     a.  I call the nurse a month before my appointment and ask for orders so there is something to talk about in the appointment.  Without the numbers, a doctor should not even know where to start making changes in your meds.  Get your results ahead of time, know what they mean and go in being an informed consumer.
     b.  Know about each and every test you want ordered.  There's no excuse for not knowing what tests you need.  NONE.  If your doctor has refused in the past, bring ONE piece of excellent, reputable, medical documentation that backs your position.  Ask what the harm would be in getting DHEA-S tested, for example.  What would be the harm of replacing one of the most abundant hormones in the human body to mid-range levels, it's good for bone density and an androgen precursor!
     c.  State all of these things as matter of factly as possible.  No big deal.  This is what you always get done.  Even if it isn't what you always get done, pretend it is.

2.  If you have issues that need to be addressed, put the top three on a separate piece of paper.  You have one copy, the doctor has another.  Bring a pen and paper and eagerly await his answers.  Write them down.  Insist on follow up testing and a follow up appointment to discuss results and their meaning.  Do all of this at once so you can streamline the conversation.

What self-confidence comes down to is educating yourself and clearly asking for what you ought to have tested and treated as someone with adrenal insufficiency.

Call it what it is, adrenal insufficiency

Adrenal insufficiency, Addison's disease, PAI, SAI, hypoadrenalism, hypocorticolism, Sheehan's, Polyglandular Autoimmune Disorder on and on.

Yeah, I know my blog and website and business are all called "Addison's Support" but I made that call nearly a decade ago.  I'm not changing it now.  Live and learn.

When you don't produce cortisol, you don't.  95% of the time, it doesn't much matter what causes it*.  The treatment is the same, the monitoring is basically the same, emergency protocol is EXACTLY the same.  *Yes, I know 5% of you have a ginormous tumor or some odd thing going on or CAH.

For the most part, it's really stupid to use any terminology besides "adrenal insufficiency" in a medical setting (unless you're at the veterinarian, they seem to have a clue) unless you want to die a little faster or get poor treatment.  Addison's Disease means nearly nothing to most lay people and medical professionals.  You can't get good treatment if your doctor doesn't know what's going on!

Call it adrenal insufficiency.  Anyone who thinks about the words can figure it out.  Adrenals are not working right.  Sure they will probably jump to adrenaline but at least they will know what gland has an issue.  "Addison's Disease" says nothing more than some dude thought he was important enough to name a "Disease" after himself.

I put "Adrenal Insufficiency" on my emergency bracelet.  EMTs have less training than a doctor and will be on site first.  Do you think they will stop and look up "Addison's Disease"?  My guess is no or if they do, it will slow down the process of getting you to the ER.  They can't give you a shot (in most counties of most states in the US) so they have to transport you to the ER FAST.

In an emergency, there was some talk that secondaries didn't need 100 mg Solu-Cortef.  I'm not sure why.  If you don't make ACTH, you can't make cortisol.  If you can't make cortisol due to lack of ACTH stimulation or damage to the adrenal cortex, you can't make cortisol.  No cortisol in an emergency=death or brain damage.

Primary or secondary, you need to have the exact same hormones monitored.  Interestingly, many people are misdiagnosed as secondary because they had ACTH tested at the wrong time of day and protocol was not followed.  If a person is truly secondary, growth hormone should be monitored.  If a person is secondary, the adrenals can eventually atrophy and cause issues with sodium.  All the same stuff needs to be monitored.

No matter the cause of your AI, you need HC, maybe florinef, sodium monitored, thyroid monitored, sex hormones monitored.  If you're deficient, you need them replaced.  It makes no difference what you call your issues.

Make it easier on your heath care professional, call it adrenal insufficiency.  Heaven knows they have a hard enough time treating us properly without making them look things up.

Rant: Doctor's threat of osteoporosis from steroids

The medical community constantly threatens us and bullies us with the threat of steroid induced osteoporosis.  We take too little hydrocortisone for YEARS at a time.  We lose quality of life so that we can comply with the lower dosing that doctors want us to take based on numbers that they pull out of their asses.  Sometimes, we end up in the hospital in crisis because we've been desperately attempting to take less steroid than we need.

Let's dissect our overall medical treatment as people with adrenal insufficiency and how doctors are causing us to have osteoporosis by their inadequate treatment.  I say "inadequate" because most doctors are taught, "give the patient 20 mg of HC per day and they will live life".  That's all they know.  It's not cost effective for them to look any further into our situation.  They might have one or two patients on long term steroids.  Most studies say that people with adrenal insufficiency have impaired quality of life.  As patients, we are right on track, "20 mg of hydrocortisone and poor quality of life, now get the hell out of my office with your complaints!"

When I write my book, I will go extensively into each point below.

Here is what you need to do:

• Don't settle for poor quality of life, it's not necessary.  True, quality of life can be a challenge but it doesn't have to be poor
• Investigate, study, learn
• Know your body, keep a journal of your meds, times, doses.  Keep track of your sleep, weight, injuries
• Get all of your test results from as far back as you can.  You're welcome.  You will find out how many times important things were overlooked and that you've suffered needlessly
• Find ONE or TWO medical papers (scholar.google.com) that back any point you might make when you go in to talk to your doctor

Why hydrocortisone is NOT the cause of osteoporosis and your doctor's inadequate treatment of your situation is probably the cause.

• Physiological doses of hydrocortisone do not cause osteoporosis but prednisone might.

• Conclusions: Adult PAI and CAH patients on low glucocorticoid doses showed normal BMD within the normal reference range. The use of longer acting prednisolone resulted in significantly lower BMD in PAI. In addition, DHEA treatment may have a beneficial effect on bone in Addison’s women. (J Clin Endocrinol Metab 97: 85–92, 2012)

•  DHEA-S (the stable and testable form of  DHEA) needs to be tested and DHEA needs to be replaced to mid-range for gender and age matched  ranges
• Personally, I think this is the most important and overlooked.  HYPONATREMIA (low sodium) causes osteoporosis.  Doctors have no idea how to test and replace Florinef  and sodium.  The test is done under entirely incorrect conditions and then assumptions are made on incorrect test results that more often than not lead to too little Florinef and the inability to retain sodium.  For years, you might be hyponatremic causing your bones to slowly crumble.  Hell, your doctor might be so dumb about AI, he might not know what to test or how to test it or what drug to give you under what conditions. Cramp a lot?  Crave salt?  Orthostatic much?  You might want to do some research on this very basic, very treatable point if you answered yes to any of those questions.  Your bones will thank you
• Too little HC will lead to fatigue and lack of weight bearing activity.  Weight bearing activity is needed to form bones
• Too little HC will not allow you to form new bone.  Cortisol is needed in the bone modeling process
• Unmanaged celiac will lead to osteoporosis.  Your doctor probably hasn't screened you for one of the top four comorbid conditions to adrenal insufficiency.  Chances are, if he did, he did the wrong tests or did the tests under the wrong conditions so you were "negative for celiac!"  
• Unmanaged celiac and poorly managed thyroid or undiagnosed thyroid issues (Hashimoto's and Graves) will lead to lots of inflammation of the gut, poorly digested food, poor health, fatigue, inability to exercise and anemia.  Both iron deficiency anemia and B12 anemia willl lead to more fatigue and little to no weight bearing exercise.
• Vitamin D deficiency will make the body unable to absorb calcium properly.  Calcium is needed to form bones.  You can take all of the calcium horse size pills you want and you'll still pay a lot of money for pills that do nothing except hurt when you swallow them.  Once again, proper testing of the proper form of Vitamin D is needed to determine a deficiency.  Does your doctor know what needs to be tested?  Probably not.  
• Testosterone deficiency in women.  Doctors don't want to touch this one in general.  There's plenty of evidence to suggest that testosterone helps build muscle (think male and female body builders) and bone.  Doctors WANT women to be deficient in testosterone because they are scared to learn more.  Do your research ladies.  Testosterone is a game changer when replaced to age appropriate ranges.  Bones need testosterone to form properly.  If you don't believe me, look at Susan Davis's research.  

That's it in a nutshell.  Yes, your doctor might be freaking awesome and test you and treat you for all of this stuff.  You don't even need to taunt the rest of us with this information in the comments unless you want to share your location and doctor's contact information so others can be helped instead of feeling bad that their doctor is inadequate.  I have been at this for 15 years, moved a few times and checked out my fair share of doctors recently, I have had to guide my care.  NONE of them knew anything.  The good ones were the ones who were willing to run the blood work and then listen to me.  The good ones didn't kick me out of the office when I brought in my last 20 years (no exaggeration) of lab work and 10 years of exercise journals with all of my symptoms and meds.  The good ones trusted that I have been on different doses of different drugs and I actually know what doses of what drugs make me feel like I'm not dying.  The good ones also explain to me why I'm wrong about things.  I learn from them.  They learn from me.

Start learning about your hormones and how they affect your bones.  There's a lot you can do to keep your bones strong if you want to!