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My Endocrine History

The following is a chronological history of my major endocrine related events:

  • 1978.02 : Diagnosed with type I diabetes at the age of 15.
  • 1987 : Doctor discovered a thyroid goiter on me.  Had tests done that detected thyroid antibodies indicating that my thyroid gland was under attack by my immune system.  Started on a small dose of synthroid that tricked my immune system to stop the attack.
  • 1998.06 : Diagnosed with hypothyroidism.  Over the previous year I was going through a period of progressive decrease in energy, decreased appetite, losing weight, increased sensitivity to cold, lower blood sugars, and generally not feeling well.
  • 1999.02 : Diagnosed with Addison's disease.  Following the hypothyroidism diagnoses, I got worse instead of getting better.  I have since found out that hypothyroidism treatment should not be initiated before Addison's treatment.  This can cause an Addison's crisis.  After I started the hypothyroidism treatment, the fatigue, weight loss, appetite decrease, low blood sugars, low blood pressure, and darkening of the skin, all increased in intensity.   The low blood sugars were a very dangerous development.  I was found multiple times passed out by friends.  This was happening even after decreasing my insulin dose by about 40%.  My doctor couldn't figure out what was going on so thankfully he sent me up to Stanford University were the Addison's diagnoses was quickly made.  They started me on hydrocortisone and my condition improved quickly.  Most of the Addison's symptoms were alleviated.  My energy levels returned to near normal.  I was able to resume my usual cycling training of about 60 miles per week.  The darkened skin remained.  The major difficulty I was having now was my blood sugars - it was out of control with high and low sugars.  The doctors at Stanford attempted to refine my diabetes therapy - tighter dietary control with carbohydrate counting, more sugar testing, and made changes/adjustments to my insulin therapy.  These changes only helped marginally.  The key problem was that I was on injection therapy.
  • 2001.04 : Started on insulin pump therapy.  I was very fortunate that a good endocrinologist started practice in my home town.  I no longer needed to make the 3.5 hour drive to Stanford.  This endocrinologist aggressively pushes pump therapy and she suggested that it could help me regain control of my diabetes.  She also explained the drawbacks of injection therapy and how this combined with Addisons to cause my erratic sugars.  Injection therapy's main weakness is long acting insulin.  It's performance can vary widely from day to day - it's not predictable.  With Addisons, I could not handle this inconsistency in performance.  Pump therapy only uses fast acting insulin and is much more adjustable/customizable than injection therapy.  Adjustments can be made to account for changes in sugars caused by the steroids used to treat Addisons as opposed to the "one size fits all" approach of injection therapy/long acting insulin.  My A1c's have been between 5.8 and 6.7 on the insulin pump and low blood sugars are now a rare event.
  • 2002.06 : Switched from 15mg hydrocortisone(HC)/mornings, 5mg HC afternoon to 5mg prednisone before bed.  On hydrocortisone, I was having problems getting going/feeling tired in the mornings.  In a normal person, higher levels of the glucocorticoid cortisol are produced around 4am to prepare the person for awakening.  Taking HC, when I would wake up my glucocorticoid levels would be too low.  Prednisone is a longer lasting, slower onset steroid than HC and results in a more normal level of glucocorticoid in the early morning hours.  On prednisone I definitely have more energy and find it easier to get going in the mornings; however, it's had a greater impact on my sugars.  I've had to increase my insulin dose by about 20% - mainly from 3am to 12pm.  This adjustment would have been very difficult to make on injection therapy.  Check out this link which explains the prednisone therapy approach I'm using: Treatment of Adrenal Insufficiency
  • 2003.09 : During a routine appointment with my endocrinologist, I mentioned that two months prior to the appointment I had experienced mild heartburn and a sensation like something was stuck in my throat over about a six week period and then a disappearance of these symptoms. My endo examined my thyroid gland and noticed a very small nodule. An ultrasound and then biopsy was performed which led to a diagnoses of papillary carcinoma, a type of thyroid cancer. My otolaryngologist stated that the symptoms that led to the diagnosis were most likely not related to the thyroid cancer. 
  • 2003.10 : Had surgery performed to remove my entire thyroid gland. The surgery went well with no complications caused by my other endocrine conditions.
  • 2003.12 : Had radioactive iodine treatment. This turned out to be the most difficult part of the treatment. Had to go on a low iodine diet and modify my thyroid medication dose to become hypothyroid. This was done to optimize absorption of the radioactive iodine. The impact of the preparation for this treatment lasted about 2.5 months with about 3 weeks of feeling very lousy when the hypothyroidism was peaking. The radioactive iodine was administered by a big blue pill that was brought to me in a lead container. Had to stay isolated in the hospital for 2 days after taking the pill.
  • 2003.12 : Couple weeks after the radioactive iodine treatment had a full body scan. This scan detected that cancer spread to a lymph node. Radiologist was very confident that the radioactive iodine would handle this.
  • 2004.10 : Started preparation for a follow up full body scan. Prep was not as extensive as for the radioactive iodine treatment. Didn't have to get nearly as hypothyroid which made prep much easier. Took a small dose of radioactive iodine only for diagnostic purposes.
  • 2004.11 : Results of full body scan came back clean - great news! 
    Over the past year I've experienced several medium to long term consequences of the surgery and radioactive iodine treatment. 1) Soon after the surgery, I started to have tingling sensation in my fingers. This was caused by my parathyroid glands being stressed which causes low calcium levels. I started taking calcium supplements and rocalcitrol which normalized calcium level and decreased tingling in fingers. Parathyroids seem to be recovering as decreasing rocalcitrol dose by 50% didn't significantly increase tingling in fingers. 2) After the radioactive iodine treatment, my saliva output and taste buds sensitivity were decreased. This intensified after the follow up full body scan. I started to experience swelling of the salvia glands. 3) Increased need for thyroid replacement medication. Before the surgery, I was taking 150 mcg levoxyl. After the surgery, I was taking 300 mcg levoxly. This increased dose caused sugars to be higher. Made adjustments to pump therapy to counter increased sugars.

 

 




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