Worst treatment plan ever

I just met with a client.  An intelligent, lovely, young woman who is struggling with many physical symptoms.  She has been attempting to improve her quality of life for five years.  She has seen ten or more doctors.  In an effort to discover what was wrong, she went to a very well respected medical institution.  She presents with nearly every symptom of adrenal insufficiency and was diagnosed with POTS.  Her 9 am cortisol was 8.  She was given Florinef and the information below.

When I read this "treatment plan", I cried.  I cried for her and I cried for me and I cried for all of you (don't get the wrong idea, I didn't sob for hours.  It was a few tears for each of us) who have been mistreated by physicians who have "great" reputations and very little knowledge.  

This woman was nearly at the point of "definitive adrenal insufficiency" with her cortisol results but was not given an ACTH stimulation test.  She was told to meditate and read for 20 minutes a day.  This was in 2015, we are nearly to 2017.  So much life wasted because a doctor only looked at lab ranges and had no idea about the circadian rhythm of cortisol in the human body.  No amount of reading inspirational crap nor meditation has ever been documented to cure adrenal insufficiency.  Worst treatment plan ever.

Why you need an injection kit-if you don't have one, read the bottom of this post

The other day, I had a real life experience that reminded me why people with adrenal insufficiency need an injection kit.  Negligent doctors will not prescribe Solu-Cortef and the needles (in some states, prescriptions are needed for the needles).  It is standard protocol and life saving to have an injection kit on hand at all times.

 "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."  Adrenal crisis in treated Addison's Disease: a predictable but under-managed event, Katherine White and Wiebke Arlt

Here is what happened to me.  I went to sleep on Thursday night after spending some of the day in preparation for the approaching hurricane.  Not a big deal, I was not stressed about the hurricane nor the preparations.  I awoke twenty minutes later and thought, "OH SHIT, I'M GOING TO THROW UP."  I have not thrown up for four years, since I quit drinking.  I knew this was serious.  I immediately put an 8 mg Zofran ODT in my mouth and grabbed a throw up bowl.  I threw up immediately.  I knew it was not over.  My husband got my injection kit and began studying the directions.  In the mean time, I contacted a fellow adrenal insufficient person and then threw up a couple more times.  Stupidly, I was uncertain as to whether I needed the injection or not.  The answer was a resounding, "Yes!"  I hate shots so I tried to put HC under my tongue but it didn't make me stop throwing up.

 "...gastroenteritis is a particular dangerous cause of adrenal crisis, oral hydrocortisone is frequently insufficient to reverse impending adrenal crisis, current education of patients is often not sufficiently effective, unwillingness to call for help...carries a huge risk, and at a certain point in time damage from adrenal crisis will become irreversible no longer responding to medical measures."  Adrenal Crisis, Bruno Allolio

Here is where things went wrong:
1)  My husband didn't know what to do and felt the need to do everything perfectly as opposed to quickly.  He was VERY slow to give the shot
2)  I was hesitant to receive a shot despite its lifesaving qualities
3)  I had several Acto-Vials that were expired and/or battered.  It took several tries to find a vial that would work properly

I was given the shot by my husband with coaching from the AI friend.  Her advice, "Just stick her now!"  I didn't feel better immediately but the vomiting did stop after about an hour.

This is the part I want you to read if you have adrenal insufficiency and don't have an injection kit.

Hurricane Matthew was to take a direct hit on Vero Beach, Florida 2:00 to 4:00 am.  I began the vomitfest at about 11:00 pm.  If I had not had an injection kit, there was no way in hell that my husband could have gotten me to the hospital nor was there any way for EMTs to come to my house.  I could have died waiting for the opportunity for things to clear up enough and roads to be open.

If your doctor has put you in the position of dying by refusing to prescribe an injection kit, find a new doctor or find the White and Arlt study that I quoted above and take it to your doctor.  Don't die just so your doctor can be "right" that you do not need an injection kit.  You do need an injection kit.  It could save your life.

An injection kit should include:

1. 100 mL Solu-Cortef Acto-Vial
2. 21 gauge needle
3. 25 gauge needle (length will depend upon how much fat you have on your leg)
4. Zofran ODT (I can't stress the ODT enough)  ODT, ODT, ODT
5. Alcohol pads
6. NADF emergency crisis form
7. Instructions on how to give the shot are vital.  I like the NZ Addison's injection directions
8. A few hydrocortisone pills and some salt pills

RANT: Diagnosed but not treated is malpractice and trying to kill people

This is going to be short and sweet.

Recently, someone came to me and told me they were diagnosed with primary adrenal insufficiency but sent home to wait for the results of more blood work.

THIS IS BULLSHIT!

Symptoms, low sodium, high potassium, a random cortisol draw of less than 1 (it was not 8 am but it was NOT midnight either) and hyperpigmentation.

The proper protocol would have been to draw blood and test all basic adrenal hormones (give an ACTH stim test immediately if available) give a bolus of Solu-Cortef, send the person home with a prescription for hydrocortisone to be taken in divided doses and a somewhat high dose for the first week or so, a prescription for Solu-Cortef and Zofran and the NADF emergency protocol.

I'm actually laughing while I write this.  Doctors have NO CLUE.  They will send any other person home on massive doses of steroids for almost no reason but not send someone who might DIE or become BRAIN DAMAGED from low blood sugar due to lack of cortisol home with nothing.  Undiagnosed people can also have a HEART ATTACK from the classic symptom of low sodium and high potassium.  On two occasions over the last year, my husband (who does not have AI) was sent home with as much steroid as I would take in a month "as an experiment" "let's see if things improve".  He couldn't sleep and felt worse.  Experiment over.  In someone who is symptomatic for AI and has test results to indicate AI is a possibility, a week of steroids will NOT HURT.  If nothing else, the trial will alleviate the symptoms, keep the person alive and the experiment will have been a success.

Is there any disease that presents with low cortisol, hyperpigmentation, low sodium/high potassium and weight loss that's helped by physiological doses of steroids?  I think not.

A doctor who does not send a person home with the following is comitting malpractice:

• A bolus shot of Solu-Cortef
• Rehydration
• A prescription of HC and instructions on how to take it
• Emergency instructions from the NADF
• Prescription for Solu-Cortef and Zofran and instructions on how to use it
• A follow up appointment three days later to go over blood work

How can I/we get this life saving information out to doctors?  Most never have a patient with AI.  Why should they learn anything?  Thinking along those same lines, why would they not reach out to a physican who can help the patient quickly and better?

157 miles pushing a 200 pound cart across Death Valley and adrenal insufficiency

This blog is one place that I'm going to make a big deal about my latest adventure.  I am not looking for kudos or comments.  I want you to rethink your life if it is not what you'd like it to be.  People with adrenal insufficiency need to know that they can do whatever they would like to do as long as they are willing to put in the work, research and effort.  

The picture above is me crossing Death Valley.  I went from -280 feet below sea level to the top of Mount Whitney 14,500 feet and then had to go 11 miles down the trail to hitch hike to town.  The actual run I did is called the Badwater 146 solo-selfcontained (total of 157 miles with the 11 miles down from the top of Mt. Whitney).  I was the only participant.  I carried all of my own food, water, clothing and gear.  Temperatures ranged from 67 degrees Fahrenheit to a two hour sustained high (a few feet off the pavement) of 138 degrees.  It took me 80 hours 57 minutes.  I am the 5th person to successfully complete the crossing and the second woman.  I bested Lisa Bliss's time by 8 hours.  Lisa did an inspirational TED talk about her experience.  

I have been treated for adrenal insufficiency since 2001.  I have been treated for hypothyroidism since 2006.  I am an active participant in my health.  I research, counsel and study adrenal insufficiency and comorbid conditions.  I say this because so many people use adrenal insufficiency and horrible medical guidance as excuses for being non participatory in their own health and well-being. 

Because there is NO research on menstruating women with adrenal insufficiency who do true endurance exercise (dudes on an indoor bike for one hour, three times a week is NOT endurance exercise!), I have spent the last ten years making mistake after mistake and then learning from those mistakes.  The guidance of adding 5 mg of hydrocortisone for exercise doesn't translate when you're doing true endurance exercise.  If you follow this guideline for endurance exercise, you will vomit, poop your pants and then fall asleep on the side of the trail.  For years, I experienced this in an effort to "follow the rules".  It almost killed me a time or two. 

Nearly everything about adjusting meds for adrenal insufficiency has to be done by feel when you're in the moment.  This rule applies for mowing the lawn as well as it does crossing Death Valley pushing 200 pound cart uphill at 135 degrees.  Here is my example.  I was taking 10 mg HC and 200 mg of sodium per hour for each hour that I was exercising.  At one point, I noticed I was severely dehydrated (tenting skin on my hands) and I had salt all over my pants.  So I think to myself, "I'm drinking adequately, taking sodium and yet I'm unable to retain either fluids or sodium.  What will fix this?"  The answer is that I did not have enough Florinef to help me retain the sodium.  Without enough sodium, I was unable to retain water.  Solution:  Increase Florinef by .025 and double sodium intake.  It worked like a charm.

You might wonder how I got to the point of doing what I did.  I did the things you ought to be doing now no matter who you are and what your circumstances.

1. Sleep-sleep regularly, do what you can to sleep well.  If you need sleeping pills to sleep well, shed the guilt and just freaking sleep.  If you have poor sleep hygiene, improve it.  Sleep regular hours.  Say "no" to stupid social commitments that keep you from sleeping.  For most people, sleep improvement is something they can do without "help" or medical guidance.  
2. Eat-eat well, eat regularly.  Don't give me the BS that good food takes too much time.  It doesn't.  Salad comes premixed, eggs come boiled, potatoes can be thrown in a microwave, fish can be defrosted and cooked in minutes, beans can be tossed into a crock pot and the excess frozen.  Quinoa takes 20 minutes and you can cook it ahead of time or in a rice cooker.  Buy this book:  Food Rules an eaters guide It's an easy, no nonsense read.  Think you don't have time to read it?  Buy it and read a page each time you eat.  
3. Take control of your health.  Get all of your medical records.
4. Get help with your diseases by joining a forum or getting advocacy assistance (shameless plug for Addison's Support Advocacy.  I can help you for a fee.  The forum is free.)  Make sure the forum is a good fit.  My forum is full of healthy people with adrenal insufficiency who want to help others get healthy.  A forum full of sick people who can't figure out why they are sick is great for emotional support but not good for getting well.
5. Set goals.  Get life counseling if you need it.  Get training help if you need it.  Yet again, I'm going to plug myself.  I have a training business called "Tough Love Training" My specialty is as one client put it, "old and broken" as well as mid to back of the packers.  I can refer you if you are fast and really good, I like helping the people who are like me, chronically ill, have special things in their lives that need to be considered and want to reach goals that are high but not unattainable.
6. Stick to a plan but not to the point of hurting yourself.  Set goals and set steps to achieve those goals and then take time each and everyday to make baby steps to your goals.  It is possible.

People with adrenal insufficiency, you can.  I am a perfect example of that.  I set my goal high and took baby steps for years.  I achieved my goal.  You can too.

www.addisonssupport.com

www.toughlovetraining.net

RANT: Believe in you (similar to the last one but a little different)

The last rant was about self-confidence.  It was intended mostly for getting better medical treatment.  This rant is about believing in you and why you should believe in you.

We all experience life differently.  We all have different genetic make ups, physiology, diet, exercise and deficiencies and/or excesses (known and unknown).  We all manage our AI and other issues differently.  As a result of all of these differences and many more, we all will experience life very differently from others.  At different points in our lives, we may experience similar situations differently.  For example, I used to be a puker.  Now, I'm not.

When you experience things, good or bad, write it down.  Have proof of the things that are happening in your body.  No offence, you probably don't have a photographic memory (OK, you over there, you might, most of us do not).  Written proof of your experience is evidence of how you feel and when you felt that way.  We all need this information to believe in ourselves and to see patterns.  I digress!

Even if you don't write things down so that you can see concrete patterns (or total chaos), if you have symptoms, you have symptoms.  Believe it.  Do not let a friend, relative or medical professional tell you that it's not possible for you to feel something.  Just because people might tell you that something is not possible, it doesn't make your experience less valid.  Yes, you can be fatigued on 20 mg of hydrocortisone.  Your thyroid numbers might be "normal" (according to unresearched medical professional who is ignoring all of your obvious symptoms).  If you are tired, you are tired.  If you have a doctor invalidate your experience, get a new doctor IMMEDIATELY.  If friends and family tell you that you're not tired or what you are experiencing is not actually happening, I don't know what to tell you but personally, I wouldn't share information with them any more because they are jerks.  Friends, family and medical professionals should believe in you and your experience.  They should listen and feel empathy.  They should help you find solutions to your issues.

If you don't have a good support system that listens and empathizes, find one.  You deserve it.  You will get well faster if you believe in you.  If you believe in you, you will feel that you deserve to get well and you will find ways to make that happen.  BELIEVE IN YOU.

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!

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.

Rant: Addison's is complicated (said with a tremendous amount of sarcasm)

It's not.

Here is the real translation:

Addison's is complicated=my doctor is too lazy to research adrenal insufficiency management and I'm too lazy or sick to teach him.

Did I make you mad?

If you say, "Yes!" or even, "Maybe..." this means you know what I'm saying is true.

Addison's is NOT complicated.  You need to be tested to determine if you have it.  Once that occurs, you need to know if you need Florinef.  Next test for thyroid disorders and correct them.  Lastly, test for the deficient sex hormones and replace them.  This is spelled out in the literature over and over.  If your doctor would read anything written about adrenal insufficiency written in the last decade, he would find the same thing.  Read anything by Arlt, Allilio, Quinkler and Crapo.  Read Medscape.  Read an old endocrinology text book.

He won't read.  He won't manage you properly. He only wants your $250 and for you to feel awful.  He doesn't give a shit.

Here is a link to the newest guidelines as put forth by the Endocrine Society:

Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline

Stefan R. Bornstein(chair), Bruno Allolio, Wiebke Arlt, Andreas Barthel, Andrew Don-Wauchope, Gary D. Hammer, Eystein S. Husebye, Deborah P. Merke, M. Hassan Murad, Constantine A. Stratakis, and David J. Torpy

- See more at: http://press.endocrine.org/doi/10.1210/jc.2015-1710#sthash.Z8UuD2Wa.dpuf

I have not made the time to read the whole paper but what I have read lays out management in a way that a six year old could manage one of us.

Read it.

Print it out.

Highlight the things your doctor needs to learn.

Take a highlighted copy to your doctor visit and give it to the doctor while you hold a copy in your hand with the same highlighting.

Ask to have an 8 am, fasting BMP drawn, DHEA-S, yadda, yadda, yadda.  If the doctor says, "No".  Ask why.  My response would be, "But is says here in section 3.7 that..."  I would then walk out and never go back.

What the hell does it matter if a doctor draws routine labs outlined by every medical publication to be printed about adrenal insufficiency for the last decade and a half?  How is he negatively affected?  I'll tell you how.  He will get information that he doesn't know how to interpret.  He will feel dumb or obligated to understand.  He will have to care and work a little bit.  If he refuses to test the basics of adrenal insufficiency, he is a TERRIBLE DOCTOR.   Because he's a terrible doctor, he will then blame YOU for being "complicated".  

For hell's sake, not much has to be tested for adrenal insufficiency.  Managing HC is a matter of taking enough at the right times and having a prescription that will allow for you to have enough HC in hand.  Managing Florinef is largely based on symptoms as well.  Other hormones need to be tested and other diseases ruled out or in.  It's NOT complicated.

Doctors are complicated.  They are overworked, overpaid, largely uncaring and very intimidated when a patient comes to them who knows her shit and is, unexplainably, 100% healthier than the doctor himself.  Doctors, by and large, refuse to take responsibility for themselves.  You, the patient, suffer because the doctor would prefer to blame you for being complicated than himself for being unwilling to learn how to manage you or refer you to someone would could.

You know what's uncomplicated about adrenal insufficiency.  Learning and understanding the basics.  DO IT.  If you need help, go to my forum or any forum where the whining is minimal (mine's the best :).  I know, I'm biased. ), hire me to help you understand adrenal insufficiency, seek answers if you don't want to get help from people who know their stuff, get answers, stay away from Endos (they tend to be the biggest morons) and go with an NP, PA, GP or DO for managing your adrenal insufficiency.


Addison's is NOT complicated

Rant: Invalidation vs Validation by a doctor

This is a rant about the dichotomy between being validated and being invalidated and how it affects the patient.  I have two completely opposite experiences in which I was a participant although not the person to whom the experiences happened.  It's an interesting place to be, on the outside looking in yet totally invested in each person's outcome.  I feel good, my brain is working.  I am lucky.  It makes the vicarious experience of these situations much more painful and joyful than when I was the one experiencing it myself.  When I was invalidated, it hurt but I was so tired that I didn't care.  When I was validated, I cared but was too tired to feel much beyond sweet relief.

I will start with invalidation.   I am advocating for someone, have access his to medical records and attending doctor's appointments with him.  The simple fact that he has asked for help and will finally see a medical professional was a huge hurdle that we overcame.  

"Yes", I told him, "the slow decline in your quality of life paired with abnormal test results IS A VALID CONCERN.  The unilaterally swollen neck, hip pain so bad that you can't get in and out of the car and other physical symptoms cannot be faked, they are not in your head."

Finally, I found someone in the medical field that I was comfortable with and he was willing to see her.  Victory #1!  She was awesome.  She listened, she heard, she asked questions of him and then asked my opinion.  She ordered a lot of lab work, she asked me if I wanted more things tested.  He ended up having a very comprehensive blood draw that turned up a couple of rheumatological abnormalities.  Sigh of relief.  Yes, something really was clinically wrong.  Both of us felt very satisfied with the visit to the medical professional.  We felt relieved.  We were going to get answers!

We went to the specialist who promptly fixated on the patient's light sleep, hip pain and possibility of depression (Damn, who is sick, hiding it for years and doesn't feel down?!).  He then very unnecessarily gave us the name of a psychiatrist.  INVALIDATION #1 (IT'S ALL IN YOUR HEAD). He ordered more blood tests.  He even mentioned Lyme.  At that point, I whipped out the Igenex.com lab form.  Igenex performs very thorough Lyme testing.  All he had to do was sign it.  He didn't have to interpret it or have any liability.  He refused, instead he chose to run a Lyme test that was for an acute infection (has occurred in the last 4-6 weeks) and one that has a high percentage of false negatives.  INVALIDATION #2 (YOU DON'T KNOW ANYTHING AND I REFUSE TO BELIEVE THAT YOU MIGHT ABOUT ONE THING)

The blood tests turned up yet more abnormal rheumatological results.  Granted, the results were not an emergency but the sub-receptionist told the patient to keep his appointment for a month and a half from the date he called, February 15th!  INVALIDATION #3 (YOU DON'T FEEL AS BAD AS YOU SAY YOU DO, YOU CAN WAIT AND WORRY ABOUT THE SIGNIFICANCE OF THE RESULTS AND FEEL SUPER DUPER CRAPPY FOR THE NEXT SEVEN WEEKS).  We finally spoke to the main receptionist who was kind and caring.  She was validating and thoughtful.  She was helpful throughout.  Basically, she kindly said the doctor didn't think the patient's numbers warranted concern despite the severity of his symptoms.  It didn't appear that the doctor was at all concerned about the painful to confess symptoms, abnormal blood results and increasingly debilitating fatigue.  No referrals (except a psychiatrist, I don't know how a psychiatrist could help with abnormal blood results!?), no suggestions, no nothing except the very vague and disturbing "monitor for future"  What the fuck does that mean?  Nothing if you're not the doctor.  INVALIDATION #4 (YOU ARE SO UNIMPORTANT THAT I WANT YOU TO KNOW YOUR RESULTS WERE ABNORMAL AND THEY MIGHT INDICATE SOMETHING BUT MAYBE, JUST MAYBE, I'LL TELL YOU IN THE FUTURE BUT YOU HAVE TO GUESS WHAT I MEAN BY "MONITOR FOR FUTURE" AND DO WHAT NEEDS TO BE DONE BUT I'M NOT GIVING YOU ANY CLUES!  HA!  HAVE FUN SUCKA!"  

OVERALL EXPERIENCE FROM BEING INVALIDATED OVER AND OVER:  COMPLETELY DEMORALIZING.   So demoralizing, in fact, that the patient feels like avoiding doctors and the medical community all together.  He'd rather live with the increasingly debilitating physical and mental symptoms by further modifying his lifestyle to accommodate the limitations that have become larger and larger over the years than go to yet another doctor who will basically tell him he's crazy (I'd say the patient is magical since he can fabricate test results that are backed by symptoms!).  Even as an outsider to this process, I was invalidated and demoralized.  I have cried more than a few tears over the unnecessary way the patient was treated.  It is even more frustrating for the patient who now doesn't always believe his symptoms are real

VALIDATION STORY

Another friend of mine has been struggling for a few years with odd and seemingly unrelated symptoms.  He came to me because many of his symptoms and some test results pointed to adrenal insufficiency.  Yes, he ended up getting diagnosed with adrenal insufficiency but after months of well managed adrenal insufficiency, he didn't get significantly better.  He finally had some testing done that could indicate a specific disease that generally needs to be diagnosed on clinical symptoms.  This is an over simplification but you get the picture.

He found a specialist in the area of his suspected issue.  This doctor did a "group" appointment.  I think the patient was slightly wary.  The group appointment turned out to be enlightening, informative and very positive.  VALIDATION #1-3 (1)  YES, THERE MIGHT BE SOMETHING WRONG WITH YOU 2)  I WANT YOU TO UNDERSTAND AND BE A PARTICIPANT IN THE PROCESS SO I WILL EXPLAIN THE REASONS WHY THERE MIGHT BE SOMETHING WRONG WITH YOU 3)  HERE ARE SOME HANDOUTS TO TAKE WITH YOU SO YOU CAN READ THEM ON YOUR OWN TIME AND REVIEW THE INFO WE HAVE COVERED IN CASE YOU CAN'T ABSORB IT ALL RIGHT NOW.)  It was followed by a brief one-on-one where the doctor reviewed the symptoms and lab results.  He explained the results and how the correlated with the symptoms and his philosophy of treatment.  VALIDATION #4  (YOU ARE IMPORTANT AND I WANT YOU TO UNDERSTAND WHAT IS GOING ON AND WHY IT IS GOING ON).   The doctor followed up the diagnosis with a written treatment plan VALIDATION #5 (I WANT YOU TO KNOW WHAT IS EXPECTED OF YOU FOR THE NEXT SIX MONTHS.  I WANT YOU TO KNOW YOU WILL FEEL LIKE SHIT BEFORE GETTING BETTER.)

OVERALL EXPERIENCE FROM BEING VALIDATED:  RELIEF, HOPE, BELIEVED, WEIGHT LIFTED.  PRICELESS!!