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.

11 comments:

Unknown said...

Bottom line.....You know you are much smarter than this endo! Just another jerk in the endo field!

HollyM said...

I've been through similar circumstances and I hate how low it makes you feel.

Unknown said...

What I don't get is why he wouldn't say he didn't know stuff? The icing on the cake (which I forgot to put in the blog post) was that a dose of 30 mg HC was standard (OK, fine, don't know where her read that because the literature rarely mentions doses that high). The 30 mg dose was ALWAYS taken 20 mg in the morning and 10 mg at NIGHT. I had to try hard to not pull a face. Obviously, he hasn't read ANYTHING in the last decade or two about physiological dosing.

Unknown said...

it is just plain scary the lack of dr knowledge.. i wish they were required to be up to date on information once they get through medical school. I think most of it falls on the insurance system.when i was able to afford "cash"pay dr's they seemed to me more knowledgeable and up to date about things-. but it seems the insurance dr's are stressed with back to back patients and not enough to to keep up to date.

here is one dr that made a interesting rant on facebook- there are dr's that get it but they are few and far between and perhaps not endos.

DrJohn Crisler
August 13 at 10:20pm · East Lansing, MI · Edited ·

"My friend Dr. Spencer Nadolsky has ignited quite a firestorm on his FB page (to which I say bully for him!), in a thread where the insidious malady of Adrenal fatigue is being attacked as a "myth", and physicians who recognize and treat it as "quacks" (myself included). Finally, it was time to bring the wood. Here is what I wrote there:

So a patient comes in, been to five different doctors already. None could--or would--do anything for them (outside of an SSRI). They have extreme fatigue (can hardly get our of bed in the morning), depression (of course), weakness (can't possibly go to the gym), hypoglycemic episodes, salt and sugar cravings, brain fog, sexual dysfunction, plus the rest of the symptoms of hypothyroidism--but with good serum thyroid hormone levels (if you don't know why that would be, you are so far out of your wheelhouse you should not be commenting in the first place--unless it is to ask an HONEST question). But, surprisingly, more energy at night than in the morning. When you check their blood pressure, it's low. Then the saliva cortisol X4 comes back, and they are low in the morning, but higher at night--the exact opposite of the normal pattern. So.,....they are making all this up? Oh, they must be lying about their symptoms. Now, try to make us believe you just don't know how to take a blood pressure, and they are somehow falsely altering their labwork. Go ahead--that makes as much sense as the rest of the reasoning offered throughout this thread. Who here can explain this? While the rest of you are busy arguing that, I don't know, either this isn't happening, or what the name of the syndrome is (or should be) or whatever you are wrestling to wrap your heads around, kindly remember this is a living, breathing human being. And one who is so miserable they cannot stand to be alive. And THAT is why those of us who understand this insidious malady are busy making them better. That's right: Dr. Number Six. And THAT, friends, is what we call the bottom line.


...and the prescription for them to get to the gym is useless, because they are so fatigued they already can't get through their work day. Just like the prescription for stress relief: THAT will suddenly make their job stress go away, their marriage in...See More

Unknown said...

nite day,I agree that they should be required to be up to date on information or, minimally, admit that they don't know what they are talking about!!!

CJ said...

Amen! People that won't admit they don't know something are either so arrogant that they think they know everything there is to know or very insecure in their knowledge. I wish they would realize that people would respect them more if they were just honest and genuinely cared about what people were going through and be willing to learn so they could be helpful. It is not helpful to question a 15 y/o diagnosis when you can't change the consequences. You need to treat what is in the present,not pass judgement on the past. Sorry you went through that Dusty.

Unknown said...

Thank you CJ!

Wendell said...

Wow I just arrived to this forum. This is my life exactly as it is written by nite day above. What do I do.
Diagnosed with addisons or AI by my DO in May of this year. I've probably had it all my life. Glucose Tolerance test declared that I was extremely reactive hypoglycemic. So I was given the ACTH stimulation test... 12@30 minutes 18 at 1 hour. Treatment followed to "wake up" my adrenals according to my DO (BTW first doctor to ever do anything for me about this so don't knock him too bad). Treatment 60MG Hydrocourt for 3 days step down to 30 for 5 days then 20 for 5 days then 10 for about a month then he reduced me to 5 mg last week. 10MG i would say I was functional. But @ 5 mg now I am pretty much bedridden. I am angry enough about it right now to make enough adrenaline to write this post. Yesterday I saw an allergy doctor who suggested that I drop the DO and go to a "real" endocrinologist. I don't believe there is one of those in my area. My wife is Hashimotos so we have run the gamut looking for a good Endo for her. Got that Endo appointment of course he is Scheduling @ November 30th right now. Im on the cancellation callback list yay! not. Help me with advice please I feel like a morom.

Other part of treatment eat lots of salt - helps some. My BP is never over 100 at this dosage and usually 90 to 95.

Unknown said...

Wendell,

Come join us at the free forum. http://www.addisonssupport.com/about.html or contact me for some personal assistance http://www.addisonssupport.com/pricing.html. You're so close! Diagnosed and have a doctor who might be able to help if he had a little education.

I hope to hear from you soon!

Dusty

Wendell said...

I cant get into the forum for some reason. On the page where I write the 1 line it cuts off and no send bar appears.

Unknown said...

Send me an email at dusty@addisonssupport.com and I'll add you.

Sorry you're having issues!

Dusty