Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Monday, August 31, 2015

Rant: Many doctors do not know the first thing about adrenal insufficiency nor hypothyroidism. Caveat Emptor.

At the request of my new DO, I went to see an endocrinologist.  Because I want to keep this DO, he's highly recommended, I went against my instincts and saw the endo that he said he would hypothetically have his wife or daughter see.

No surprise, I walked into the waiting room to be greeted by a multitude of Type II diabetics.  Type II diabetics are the bread and butter of most endocrinologists.  For this reason, the endocrinologists know the most about...you guessed it...diabetes.

The doctor promptly met in me at the appointed time.  I was encouraged by this.  We talked for a minute and he asked to see my test results from my diagnosis.  mistake on my part.  My diagnosis was not text book depending upon what information was used to determine this.  At 30 minutes, I stimmed to 16.  That's a failure of the ACTH stim test if you use the 30 minute reading.  I stimmed higher than 18 for the 60 minute reading which this doctor declared a "pass".  I asked why a 90% failure of the adrenals was used to determine the need for replacement steroids and what would have happened to me if I had been in an accident at that time in my life where I had an obvious 80+% failure of my adrenals.  His reply, "That's just the criteria that was established a very long time ago and that's what I use!  You didn't have adrenal insufficiency! Now you have iatrogenic (that's doctor induced (yes, no shit Sherlock)) adrenal insufficiency."

I showed him my insulin tolerance test.  The baseline was high and he declared that because of that number alone, the test didn't matter.  He could not explain to me why the cortisol went down when my body was stressed with insulin nor could he explain why I went unconscious from low blood sugar.  I can tell you why and I don't have a medical degree. Cortisol is used to synthesize glycogen.  Glycogen is released when the body is stressed as in the case of an insulin tolerance test.  When the body has no glycogen stores due to long term, untreated adrenal insufficiency, it will do what it can to keep the blood sugar up, like, duh, use the cortisol to synthesize glycogen.  If there's no glycogen, the person will a) have lower and lower cortisol readings as time progresses b) go hypoglycemic.  BINGO.  I did both.  A diabetes doctor didn't understand the insulin tolerance test, sigh.

He saw my thyroid results where my TSH was 3.6, within the lab range but high if you consider 85% of the US population has a TSH of 1.5 or so.  I didn't have hypothyroidism either according to him!  I asked why the American Association of Clinical Endocrinologists recommend keeping the TSH at 1-2.  He said that I would have to use the same lab as the AACE to find a TSH of 3.6.  At this point, I collected everything I had and got up to leave.

I am healthy.  I am very healthy.  I have AI and hypothyroidism yet run ultramarathons.  I blew out my shoulder and had reconstructive surgery and can still to pull ups. I have streaked walking for five years and running for three.  I teach spin classes.  I rarely get colds.  Since I've quit drinking, nausea occurs infrequently.  He claimed he could not take me on a a patient since he did not agree with my 15 year old diagnosis.  From a visual perspective, it's quite obvious that I'm not over replaced on steroids nor on thyroid medication.  My life went from illness and struggle to good health yet this man thought my diagnoses were wrong.  On a positive note, he said he would recommend to my DO to continue to prescribe my medications to me.  Except testosterone.  I would need an OB/GYN for that.  WTF?! An endocrinologist who has no understanding of the adrenals.  60% of a woman's testosterone is produced in the adrenals.  My adrenals don't work.  Testosterone is not an OB/GYN issue in my case.  Complete and utter lack of understanding of the adrenal glands by a medical professional.

Here is what I learned from seeing an endocrinologist:

  • Never give a doctor information that won't help with your current situation unless they are absolutely positively textbook failures.  For example, I should not have brought ANY medical records that were more than a year old.
  • When a doctor shows his absolute, positive lack of interest in clinical symptoms paired with lack of understanding of basic endocrinology (IE not knowing the AACE guideline and, worse yet, not understanding them in the slightest), RUN.  
  • When a doctor only uses only one lab range (incorrectly, I might add) to determine a diagnosis, he's neither intuitive nor caring.  He doesn't care about alleviating symptoms nor helping you feel better.  He wants to be right.
  • I will try to never see an endocrinologist again unless he or she has a proven track record with AI.  I'm sure I can see an anti-aging doctor who would be tickled pink to have a healthy middle aged woman as a client.
  • I came out of the office, mad and hurt.  I doubted myself and my diagnosis as a result of the things that were said to me and the misinformation that he tried to spread.  I felt horrible for those who have not studied adrenal insufficiency and hypothyroidism the way that I have.  The doubts they might have would be overwhelming.
  • MOST IMPORTANTLY, I NEED TO MAKE A DIFFERENCE IN THE MEDICAL COMMUNITY.  I NEED TO FIND A WAY TO EDUCATE THEM SO THAT THEY DON'T KEEP TRYING TO MAKE US FEEL TERRIBLE ABOUT OURSELVES, OUR DIAGNOSES AND THE SYMPTOMS THAT WERE VERY REAL AND DEBILITATING.  THE SYMPTOMS THAT WE HAD AND THE AWFUL LIVES WE USED TO LIVE THAT WERE ALLEVIATED BY PROPER TREATMENT COUNT FOR SOMETHING.  ALLEVIATION OF SYMPTOMS IS AN INDICATION OF PROPER DIAGNOSIS AND MANAGEMENT OF OUR DISEASES!
  • More than anything, I would love to see a doctor who listens and will talk to me.  I would like a doctor who can trust his own eyes and my current lab work.  I am healthy.  I want to stay that way.  What's so hard about working with a patient to help him or her achieve her greatest potential?  I suppose it's not cost effective to spend time with a patient, listen and discuss things only to have a healthy patient who will only see you once a year?  It's a much better business model for a doctor to be all knowing and keep your business coming in throughout the year.
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