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!

Rant: Too tired to shower

Do you ever feel like this?  Do you feel like this all the time?  Hello!  I have news for you.  

1)  You're chronically under replaced with hydrocortisone

2)  You're not taking your cortisol physiologically

3)  You're thyroid is not optimized

4)  A combination of these three things

5)  Something else entirely

It's that simple.  Yes, there could be something else wrong that you don't know about it which would make #1 happen.  You have to fix #1 to figure out #5 or you could kill yourself.  Chronic under replacement of hydrocortisone will KILL you.  

How do you test this theory?  Double or triple your HC for 2-3 days.  If you feel better, you might be smarter than the person who prescribed you not enough HC!  If you feel worse, you should safely be able to return to your maintenance dose.

Are you taking your cortisol physiologically?  If you don't know what this means, you're not taking your HC physiologically.  You need help.  Study and research.  Join the free forum at www.addisonssupport.com or hire me to help you understand what "physiological dosing" means.

Is your thyroid optimized?  Probably not.  Most doctors have a hard on over TSH.  TSH is NOT an accurate measurement of thyroid status.  This blog post should get you started:  http://www.tiredthyroid.com/optimal-labs.html I did not write this.

You should not be too tired to take a shower.  If you are, you need help.  Get it.  If you can't do it yourself, Force someone close to you to help.  Join my free forum.  Hire me if you have money.  You deserve a better life than what you're living.  

If you decide it's totally normal to feel so tired that you don't want to shower day after day, you like to be sick.  It is not normal nor is it acceptable.  If you think it's normal to be so tired you can't take a shower and you took offense at my statement that you like to be sick, let that anger be your catalyst.  You know what's right.  You know there's a better quality of life.  Find a way to at least tend to your basic needs of #1-#4 for someone with adrenal insufficiency.

Rant: Depression

Depression is such a loaded topic.  I'm going to flounder through my opinion about it briefly.  Feel free to comment.

What is comes down to is that if you've been sick for a long time, undiagnosed and passed from doctor to doctor or not optimized and feeling lousy due to poor medical guidance, you're going to be depressed.  If you are NOT depressed and have felt lousy for an extended period of time, you are crazy.  Who in his or her right mind can suffer from impaired quality of life for an extended time and take it in stride?  Is THAT normal?  No, it's clearly not.

I am advocating for a patient who admitted to "situational" depression to his physician.  The physician immediately wasted about 25% of the session recommending a psychiatrist, discussing the anxiety (in a very unconstructive way) and talking about how the depression could affect sleep and other things in his life.  The physician should have seen that what the patient was acceptable and completely normal given the years of illness and poor quality of life.  The physician should have moved on to the blood work, radiology reports and explanations of the past results as well as my client's symptoms.  Most likely, situational depression didn't cause his ANA and RF to go high, rashes to appear on his body or give him frequent debilitating headaches.

I have learned something.  As an advocate, I will never again allow a doctor to waste a patient's time discussing SSRIs, psychiatry and mood unnecessarily.  I will keep the physician focused on the matter at hand, finding solutions to my client's physical problems.

There are very, very few people in this world who go from doctor to doctor to doctor seeking degradation and questioning of his or her mental state.  People who have issues with their mental state seek help for their mental state.  A rhuematologist or dermatologist is not qualified to discuss a person's mental state when there are undebatable physical symptoms coupled with abnormal lab work. It's the physician's job use his or her expertise in his or her field to put pieces of puzzles together.  It is NOT the physician's job to ignore or refuse to explain the results and symptoms so that he or she can focus on an area outside of his or her realm.

For a patient who has no advocate, please keep discussion of your mental state to a minimum.  Get your paper out with the top three things you would like to discuss and hand it to the doctor.  If you have mental issues (and you might and that's OK), discuss your issues with a profession in that field, not your proctologist or hematologist.  I mean, unless you want to open that can of worms and discuss the wrong issues with the wrong medical professional.  If that's how your roll, roll that way.  It's not efficient nor helpful to getting well.