I am a new member. 6 months ago at the age of 62, I was diagnosed with
type1 diabetes while touring the middle East on a cruise ship. I was
perfectly fine when I boarded the ship but 5 days later I had diabetes.
I spent a good part of the 18-day cruise in the ship’s infirmary
receiving insulin drips and when the numbers just wouldn’t stay under
control despite taking the recommended small dose of 70/30 Novolin, I
was taken off the ship and brought to a hospital in Suez City, Egypt.
The “hospital” was a tiny facility located in a store front - dark and
dingy with crumbling plaster falling off the walls in the exam rooms.
As scary as it was, the doctors were excellent and took very good care
of me. After 4 hours, I was sent back to the ship with a combination of
Metformin and Amyril. These drugs were to be added to the insulin I had been
prescribed by the ship’s doctor.
Although our trip was to continue for an additional 10 days during which
we were to be traveling around Europe, when we disembarked the ship, I
was just too ill, with numbers reaching 400 and above, to continue our
travels. We boarded a plane and came home to Florida. The next day my
blood sugar level was over 500 and I was admitted to our local hospital
where I stayed for 4 days. Despite levels still at around 375 and an
HbA1C of 9.5, I was released. So began my roller coaster of highs, lows
and treatment with now 4 different Endocrinologists.
As soon as I got home from the hospital, I started my in-depth study of
my disease, combing the internet and forums for information, voraciously
reading books such as “Using Insulin” and “Think Like a Pancreas” as
well as those by Dr. Bernstein. I began for me what is to be considered a
low carb diet of under 75 carbs a day, keeping charts of everything I
put in my mouth using “MyFoodDiary.com” and charting my blood glucose
levels on “SugarStats.com”. I was spending 12-16 hours a day for the
first 3 months carefully charting, learning - and practicing everything I
was learning. I tested 10-15 times a day during those first months, in
order to learn what my body did with food vs. insulin and trying to get
my Insulin to carb ratio tightly established. I was assured by everyone, if I
just followed all the expert advice I was given, that in a few weeks I
would surely get my disease under control.
When the first Endo I saw gave me advice that went against everything I
was reading and learning, I switched to another. When the insulin
regimen which he put me on did nothing to provide any decent
control of my seesawing numbers, I switched again. The third Endo
lowered the total insulin I was taking and advised me that I was not
eating enough carbs. She did this because I was experiencing too many
lows. However, the new regimen raised my numbers to over 200 most of the
time. She experimented with different basal rates of Lantus and
sliding scale doses of Humalog for meals. After a couple of weeks, I took
things into my own hands and experimented with different combinations,
giving each new tweak a week or 10 days before trying a different combination.
I was always either too high or too, low - fluctuating wildly, and mostly felt like
someone had put a straw into me and sucked out all my energy.
I have always been a very upbeat person - centered spiritually and
looking at the bright side of situations. People tell me they
admire me for these qualities. I stayed very optimistic until very
recently - which is the 6 month anniversary of my diagnosis. I am now
beginning to lose hope especially since 3 weeks ago, I saw one of the
top doctors at the University of Miami’s Diabetes Research Institute and
he has not been able to help me obtain better control. Since he saw
that I was experiencing lows every day and that the HbA1C he took in his
office showed 5.75, he cut back my insulin intake again telling me that I
was paying too high a price for getting my A1C to such a low level. So now the
highs are worse with my numbers staying in the 300 range most of the
time. First the huge swings and now these consistently high numbers have
really taken their toll on me. I have hardly left my house in the last 3
Here is where I stand today: Lantus - 18U before breakfast and 12U
12 hours later/ Humalog ratio of 1U to 5carbs with no correction doses
between meals. Total insulin intake approx. 52U. My weight is 167 lbs.
and I am 5’6" tall. Total daily carbs under 75, little to no exercise
due to constant high sugar levels.
I may be 63 but I look like 43 and I don’t want to feel that I am a
hopeless case, in fact I was hoping to get into one of the research
studies at Miami U, but 45 years old is the cut off age.
Any suggestions, advice, hope or just commiseration will be
appreciated. Thanks for providing a place for me to be able to tell my