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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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