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.

Wednesday, March 5, 2008

Addison's:Getting diagnosed with something

One has a greater sense of intellectual degradation after an interview with a doctor than from any human experience.
- Alice James
"We have two options in life both medically and emotionally, give up or
fight like hell." -Lance Armstrong


How to get diagnosed
· Get a 3 ring binder and dividers.
o Section 1 – Family health history & copies – write a complete family health history, talk to relatives, get all of your facts straight and complete. Find out why your relatives have died
o Section 2 – Personal health history & copies- Write YOUR health history with as much information as you can, talk to relatives. Include things like: surgeries, menses, libido, courses of medicines, concussions, allergies, food sensitivities, migraine headaches, all pregnancies, be specific and include dates with as much accuracy as you can.
o Section 3 – Symptom list & copies - Write a list of your symptoms. Keep them objective so they can’t argue with them. Avoid anything that might sound like depression. Skin? Eyes? Finger nails/toe nails? Digestion? Etc.
o Section 4 – Labs/divide by year (label them “Master” with a highlighter and NEVER allow them to be removed from the binder unless they are given back to you immediately. Get copies of all labs as far back as you can. You CAN NOT be refused these documents! If you are, immediately contact the American Medical Association.
o Section 5 – Research (this is where you put journal abstracts and explanations of each test you look up – you may need to subdivide this section). Use only reputable sources that cite scientific journals like PubMed and MedScape.
· Once you get copies of labs, this is where it gets tricky!
o Study your labs and if you find values that are outside of the norm, research, research, research.
o Go to bulletin boards on the internet and ask for help with lab values, similar experiences and guidance. Never believe anything you are told on a BB, use it as a spring board for research.
o When you have an idea of what might be wrong with you, copy pages out of the Merck Manual.
o Ask on a BB for what the standard diagnosis tests are.
o Consult the online organization for the disease you might think you have. Print off as much information from that site as you can. Ask what the standard diagnosis tests are for the disease you might have.
o Go to www.labcorp.com and get lab protocols for each of the labs you are requesting so that you look informed. Very often, the lab workers won’t let you know that you need to fast or come in first thing in the morning and the doctors certainly don’t know the protocol for blood work. Make sure the test is done right when you get it done! This is vital!
YOUR DOCTOR’S VISIT:
o I prefer to make my first appointment with a General Practitioner because they don’t look at you as one body system, they look at you as more of a whole organism.
o Prior to the appointment fax (or drop off the following):
§ Your specific concerns (see below)
§ Your personal health history
§ Your specific symptoms
§ Family history
§ List of requested tests & lab protocols
o Bring copies for yourself and your doctor of the above (specific concerns, personal and family health history, list of requested tests) to your appointment (they will often claim that they didn’t get the fax!), bring your notebook with your labs and bring your specific concerns. Remember a pen so you can take notes.
o If you are refused any of your requests, have the doctor sign a paper that he/she is refusing to test you for that specific item.


Here's an example of what I take to the doctor's office EVERY TIME I GO. I take two copies, one for me and one that I request to be put in my file. Interestingly, I've never been denied a request for blood work or testing.
August 18, 2006
Goals of today’s meeting:
1. Have this appointment cost as little as possible by providing background and documentation
  1. Get electrolytes tested today and tomorrow after my long run
  2. Figure out the reason why a well trained athlete would be impeded by dehydration and then, more importantly, fix the problem
Current medications:
  1. 25 mg/ day of hydrocortisone taken the following way
    1. 10 mg at 6:00 am
    2. 5 mg at 9:00 am
    3. 5 mg at 11:00 am
    4. 5 mg at 2:00 pm
  2. Hydrocortisone dose increased 7/1/06 from 20 mg/day to 25 mg/day because I had an ER admit, got a cold and had constant, debilitating nausea and malaise
  3. Hydrocortisone is only increased during running/exercise after 12 miles or 3 hours
    1. 5 mg extra/1 hour of exercise after 2 hours of consistent, strenuous exercise
History:
    • Diagnosed with Addison’s Disease 11/02 (See Appendix A or Endocrinology text book for explanation of Addison’s Disease)
    • ER admit for dehydration due to vomiting 5/30/06
    • Currently training for a marathon 09/03/06. I’ve been training consistently since December 15, 2005 and I was in shape before starting marathon training.
    • When I run 17 – 20 miles, especially in the heat I get
i. Stomach cramps
ii. Nausea
iii. Diaphragm cramping
iv. Severe hypotension
v. Lack of urination despite drinking water constantly
vi. When I do finally urinate after drinking and ceasing exercise, it’s infrequent, orange
Request:
  • Electrolytes tested today
  • Electrolytes tested Saturday following 12 mile run
  • Potential standing order for electrolytes (believe me, I won’t abuse it. I want to be charged to have my blood taken less than you’ll want to do this for me)
  • Renin & aldosterone tested today (needs to be done in conjunction with electrolytes to provide an accurate picture for the potential need of Florinef supplementation (See Appendices B & C for explanations of Renin and Aldosterone testing)
  • Suggestions for salt supplementation to prevent dehydration
  • See Appendix D for abstract “The effects of stress on salt and water balance”
  • See Appendix E for Q&A from the National Adrenal Diseases Foundation about adjusting medication for exercise

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