Tuesday, May 5, 2015

Rant: It's not OK to have a poor quality of life with adrenal insufficiency

Every study I've read regarding adrenal insufficiency (AI) and quality of life (QOL) states that we all feel like shit and that's the status quo.  Our doctors might (but probably don't) read these studies and believe them.  Most doctor's experience with AI patients is that they are elderly, on long term steroids or transplantation recipients.  These are people who generally don't feel well because of other issues and may be on huge doses of steroids to further exacerbate their poor QOL.  Your doctor probably has decided that people on steroids feel terrible.  You will have to live with feeling terrible.  Get a therapist to feel better.

No, not true.  Living with feeling terrible or getting a therapist is not the whole answer to feeling better.  Learning about AI and how your doctor is failing you is the best way to feel better.  A therapist may help you adjust mentally to AI.

Generally (yes, you might be the exception), undiagnosed AI is a slow slide toward death.  Symptoms of AI are so subtle that we look healthy (tan!  thin!  low blood pressure!) and very lazy until we are in a hospital bed with people wondering what went wrong.  If your medical care is even moderately decent, you will be given 100 mg of Solu-Cortef and saline IV until you are hydrated, BP comes up and color returns to your face.  You will be discharged with  a prescription for 20 mg of hydrocortisone per day and instructions to take 10 mg morning and night.  Find a good endocrinologist.  For the first time in months or years, you will actually feel OK, barely nauseous, no diarrhea for the first time in who knows how long.  You might even want to eat.  Coming from feeling like death warmed over, the improvement once you are put on hydrocortisone is incredible.

For most doctors and patients, this improvement will be enough to maintain treatment with 20 mg of HC per day.  Once the patient is able to reenter life, bad shit happens.  All the signs of under replacement are ignored.  Nausea, vomiting, diarrhea, low blood pressure, low blood sugar and overwhelming fatigue are completely acceptable because your doctor said taking 20 mg of HC per day was what you needed to do.

Here's where you or an advocate for you comes in.  It's NOT OK TO FEEL AWFUL AND SUFFER FROM THE SAME SYMPTOMS OF ADRENAL INSUFFICIENCY THAT YOU DID BEFORE BEING DIAGNOSED BUT TO A LESSER EXTENT.


  1. If you are showing symptoms of under replacement, you are under replaced.  It's unnecessary and much more dangerous to be under replaced consistently than slightly over replaced once in a while.
  2. A lot of doctors do not know that the adrenals produce more than cortisol.  Other hormones need to be replaced in addition to cortisol.  Your body wouldn't have made them in the first place if it didn't need them for something!  Yes, women, you need testosterone.  Do you like having a heart muscle that beats?  Testosterone keeps your heart muscle and bones strong.
  3. Make sure your Florinef dose is right.  Low sodium is a major factor in osteoporosis (and low BP).  Hyponatremia-induced osteoporosis  All these years that your doctor has tried to guilt and shame you into taking less and less HC to avoid osteoporosis is misguided and probably detrimental.  Make your doctor focus on sodium.
  4. Do you have other diseases?  Have you even been tested properly?  Probably not.
Unfortunately, it's too hard for many people to take responsibility for their health.  I do know how hard and stressful it can be to find a doctor. Research is time consuming.  The hardest part of feeling well is believing that you actually deserve to feel well.  Adjusting to a crappy new normal is fine if you are happy with it.  Don't be happy with crappy quality of life  Adjust to a new normal that feels good most of the time.  Take enough meds to live life well.  Research.  Learn.  Get your test results.  Don't settle for feeling like shit.  It's not OK.  

Shameless self-promotion coming up.  Join the FREE Addison's Support Forum if you can't seem to get better on your own or want support or want to talk about the frustrations of adrenal insufficiency.  If you don't want to be on a semi-private forum, I offer my advocacy services to help you understand adrenal insufficiency, help you understand your results and/or help your doctor have the information she needs to treat you properly.

Saturday, February 21, 2015

RANT: HELP YOURSELF!

A health related rant coming on.  Don't read it if you're not interested in health and/or rants!

I find it absolutely amazing how many people go to a doctor and just expect him/her to come up with all the answers in a ten minute meeting.  I'm not sure how you can expect someone to figure out what's wrong with you in such a short period of time.  No doctor can do this unless you've got a broken bone sticking out of your skin.

You have to help yourself to get the medical care you deserve.  You have to do WORK.  You can't rely on someone to know all of your complaints, medical history and family history without laying it out for whomever you are seeing to get a diagnosis or follow up for a disease.

You might argue that if you give a doctor too much information, he/she will think you are a hypochondriac.  If you are NOT a hypochondriac and the doctor thinks you are, you have several options:
  • You can walk out of the office right then and there.  This doctor is not the doctor for you.
  • You can fire the doctor after the appointment.
  • You can file a complaint with the doctor's office and the State Medical Board.
There is no reason for a doctor to dismiss you or treat you as a hypochondriac because you are acting like you want to get well.

Homework before an appointment.  Get a binder and compile the following information.
  • I can't stress enough that making a clear comprehensive list of your symptoms in a logical order (top down or body system) will help your doctor.  Date this list and keep a copy.  Make a copy for your doctor.  Stay away from mental symptoms specifically if you're female.  Depression is a catchall.
  • Personal heath history, list diagnoses that you already have, head injuries, body parts that have been removed.  Date it, copy it, put one copy in your binder give the doctor the other copy.
  • List all medicines and supplements you take.  Note the times you take them and doses.  Date it, copy it, put one copy in your binder give the doctor the other copy.
  • Family history of causes of death and diseases.  Date it, copy it, put one copy in your binder give the doctor the other copy.
  • Most important page:
    • Make a list of the three most important questions for your doctor.  Leave plenty of space to fill in the answers. 
    • List the meds for which you need refills.  
      • Name of med
      • Dose
      • How taken
      • How many day supply
    • List the tests you would like to have run and the CPT code if they are unusual tests.  It might be helpful to list why you want them as well.  Some of us get a little nervous and can't remember things when push come to shove.  Know if the tests (like renin and electrolytes) need to be done fasting so they don't just heard you into the lab.  As a general rule, I like to have all of my tests run at 8 am, fasting so I am ALWAYS limiting as many variables as possible and trying to get the most accurate test results that I can get.
    • Date it, copy it, put one copy in your binder give the doctor the other copy.
  • Get copies of all of your medical records and labs as far back as you can.  If you reside in the US, you are legally entitled to all of your medical records.  If you are refused your medical records, you need to file a HIPAA Complaint.  I keep mine in a binder arranged by year.  Bring the binder to your appointment!  All the doctors that I think are great have appreciated the binder.  All the most horrible doctors have attempted to put me down because of it.  
  • Have your copies of your papers in your binder.
  • Leave the doctor's copies loose.  If you have an advocate with you, allow the advocate to handle the distribution of the paperwork to the doctor AND take notes for you.  You take notes as well.
During the appointment, breathe deeply and relax.
  • Allow the doctor to enter the room and make whatever small talk needs to be made.
  • When the doctor asks about your symptoms, hand over the Symptoms page.  When the doctor asks about your meds, hand the Med List over.  History, do the same.
  • When he or she asks if you have any questions, hand over the "Most important page".  You deserve to have all three of those questions answered if they haven't been.  Go get 'em tiger!

A friend to all Addisonian's over the years, Dick Loeppky


I apologize for not posting this sooner.  


Our friend and fellow Addisonian passed away from a combination of atypical Parkinson's and some Addison's complications (I have no details).  Dick was known on Addison's forums for being supportive, generous, explaining scientific things in simple terms and for being kind.  He was loved by many and will be missed.  I feel very fortunate to have met him in person when he passed through Teton Valley in 2004.  We had dinner, drinks and some laughs.  Dick played a big role in my diagnosis in 2001.  



Richard Loeppky, 1937-2012


Richard Norman Loeppky passed away on Saturday, April 21, 2012. He was cherished by his family and friends and appreciated by his colleagues and students.

Loeppky
Richard was born in Lewiston, Idaho, on Aug. 2, 1937, to Norman and Helen Loeppky. He received his Bachelor of Science in chemistry from the University of Idaho and his Ph.D. in organic chemistry from the University of Michigan. After finishing his post-graduate work at the University of Illinois, he spent his entire academic career as a researcher and organic chemistry instructor at the University of Missouri.
A very generous man, he dedicated most of his life to cancer research. His work led to several discoveries that identified cancer-causing chemicals in retail products.
For his excellence in cancer research he received international recognition, the Founders Award for Outstanding Scientific Achievement from the American Chemical Society and was inducted into the University of Idaho's Alumni Hall of Fame and College of Science Academy of Distinguished Alumni. Recently, he worked with the European Union on the construction and revision of regulations related to cancer-causing chemicals.
He also had a passion for teaching the next generation of scientists and received the Purple Chalk Teaching Award, which acknowledges teaching excellence of select faculty members, from the College of Arts and Science Student Council. This was the award of which he was most proud.
He loved to travel the world, meet new people and take photographs of his surroundings. He had a very inquiring mind and was a gifted individual in so many ways.
Richard is survived by his daughter, Ann Loeppky-Finn (Robert); son, Greg Loeppky (Nicole); granddaughters, Keira Finn and Emma Loeppky; sister, Marilyn French (Carter); niece, Katie (Joel) Yates; and nephew, Ryan French.
He was truly loved and will be deeply missed. A memorial service will be held at 1 p.m. Saturday, May 5, at Central Lutheran Church in Everett, Wash. In lieu of flowers, please donate to the charity of your choice.