Today I turn 64 and decided to post my profile.
Profile for Newbeach
I was wrongly diagnosed with Type 2 back in late October 2008. An appointment with my still current Endocrinologist in December that year changed the diagnoses to LADA because “Blood Tests” showed extremely high GAD and IA2 antibodies with low c-peptide and insulin levels but a high blood glucose level.
By exercise and diet I only delayed the injection of insulin until the end of April 2009. My progression to Type 1 occurred within six months and I was diagnosed as Brittle Type 1 in 2011. My HbA1c is usually just under 7 but my blood glucose control is poor.
My son was diagnosed with “Juvenile Diabetes” back in 1996 at the age of 13. Although there was no history of diabetes in my wife’s or my family’s background, my maternal grandmother had other autoimmune diseases.
Looking back I suppose that I was a prime candidate for developing Type 1. I had the genetic background, high levels of antibodies which had shown up in blood tests years previously, and a son with Type 1. Why a head cold then a tropical virus triggered my fast progression to diabetes I do not know? I had been living with these antibodies for years and had many head colds but that October I drew the short straw and was hospitalized with a reading of 27.2 mmol/L (490mg/dL).
Because of my age and because no ketones had shown up in tests, I was diagnosed as Type 2. Although I was given insulin to bring down the high BGL, the meals were not the foods that should have been given to a Type 1 patient. As a result BGL climbed very quickly to the high hyper levels two hours after meals.
After three days with little improvement, I convinced my doctor that I had to be active to stabilize my BGL . I was released on the provision that if my BGL were above 11mmol/L for too long I would go back into hospital.
It would be a difficult three years before I started to understand how to manage my diabetes in the best way that I could. Although my HbA1c was always about 7, within two years I developed peripheral neuropathy with my feet. Most nights the joints in my feet would ache and pain when I walked then burn as I tried to get to sleep. Of a morning it would feel like I was standing on a thousand needles as I got out of bed.
This problem was tracked down to the extreme fluctuations with BLG and was solved by allowing my BGL to be below 6mmol/L and falling before eating and matching insulin and the GI of my meal for that day’s activity. Even today I still have feet problems if I stay in the hyper zone for too long or BGL fluctuate too much. After three days of tight control my feet feel normal again.
Although I started with MDI then DAFNE (Dose Adjustments For Normal Eating), I found that I achieved the best results by injecting according to my day’s activity and meter readings. I go from not using insulin for over 20 hours when I have been working hard for several days and having good BGL to over 100 units when I am doing bookwork and then I struggle to keep BGL out of the Hyper zone.
Occupation and Education.
I own a small cane farm and fish to make a living. In a past life I was a Sugar Chemist with a Certificate in Sugar Chemistry graduating back in 1975. This was a 4 year University standard course involving six months study then six months working in laboratories at sugar mills. During my study years, I obtained a Professional Fishers Licence and fished on weekends to keep the money coming in.
I worked my way through the ranks from Lab Analysis to Shift Chemist Supervisor and left as Assistant Production Manager late in 1991 to establish a Barramundi Hatchery. Fish are my true passion. (My College pass for Senior was not sufficient to study Marine Biology at University so I opted for Sugar Chemistry)
A major flood followed by drought and poor seasons combined with low sugar prices saw my dreams of the Hatchery been delayed as I worked full time on my parent’s and brother’s cane farms. A family fall out and then finally Diabetes saw the Hatchery being mothballed as it was established on their land.
I kept upgrading my Professional Fishers Licence and now lease symbols for the different fisheries which allows me to fish the coastal fishery of Queensland. Fishing with nets is hard work but it keeps me fit. What you enjoy is not a burden. My insulin usage goes right down and BGL becomes stable when I am fishing.
The last time I worked as a Sugar Chemist was September2008 when the first symptoms of diabetes began. I did not have the typical symptoms of thirst or constant urination but I lost weight quickly, lacked energy and my thought process and decision making was very much impaired. The sudden loss of weight I had put down to hard work and the lack of energy due to the virus. I greatly increased the carbohydrate and sugars in my diet to regain weight, only to find my symptoms became worse. I rang my doctor only to be told that there was a 3 week waiting list. I knew I could not wait that long so I insisted that I needed to rule out diabetes and asked if his nurse could take a blood glucose test. After a three hour wait, I received my wish but not the result I wanted; a blood glucose reading of 16.4mmol/L. I was told that this was only a random test but still no appointment for three weeks.
I knew this reading was exceptionally high as I had not eaten for hours and had been working hard that day. I managed to purchase an Accu-Chek Performa meter just as the Chemists’ was shutting. The reading of 27.2 mmol/L at 10.30pm that night put me into hospital.
During the three years after I was diagnosed I had four different doctors, all with very different ideas about the best way to manage my diabetes. Although I had a very good Endocrinologist, I only had contact with him twice a year. During this period I saw several Diabetic Educators (nurses who specialize with diabetes) but I was relying on these professionals to solve all of my problems.
Although everyone’s diabetes may vary, I knew that I was a very different case. After two years when my feet started to cause problems I knew that I had serious issues to deal with. So began a very intense research program into diabetes. Although I have not studied physiology of the human body, my chemistry background helps me understand the why’s and how’s of diabetes. I know the right questions to ask if medication have to be changed. I will only take antibiotics if they are absolutely necessary as they usually kill the good bacteria as well as the bad. After the course is finished I take Probiotic and because I am not sensitive to FODMAPs, I eat foods high in galactans and frutans to reestablish a healthy intestinal microbiome. “What you eat is what you are” and the bacteria that colonize your digestive track play an important roll with your overall health.
Although diabetes came as a shock and changed my life, it has not stopped me from fishing. A healthier lifestyle has been the result and I am waiting for the day when non invasive continuous glucose meters are available for those who can not use pumps or CGM.
TuDiabetes is a site that has helped me through my journey with diabetes and I take inspiration from all who live with this chronic disease and share their stories.
Today I turn 64 and decided to post my profile.
Fascinating life story, Newbeach. I’m so glad you shared it and I look forward to getting to know you better!..Blessings…Judith in Portland
Interesting story, @newbeach. I’m trying to figure out what part of the globe you live. You mention NHS and I know that’s the UK. So, did you work as a food chemist when you were diagnosed? Something make me think you’re in Australia.
I share your disallusionment with doctors. I made the same mistake for many years thinking that all I needed to do was find the right doctor and all will be well. I finally had that “Wizard of Oz” moment when Toto pulled back the curtain and exposed the wizard as a sham. Like Dorothy, I discovered that the power to reclaim my health was mine all along.
I no longer seek any advice from my doctors regarding insulin dosing. I agree with you about the microbiome in our gut. That’s where the majority of our immune system is sourced. I take probiotics every day along with a resistant starch to feed my gut bacteria. “What you eat is what you are,” is absolutely true.
Thanks for posting your story. I look forward to reading your comments in some of the TuD threads.
I live in a rural area south of Proserpine, Queensland, Australia. From my front veranda I have a distant view of the southern Whitsunday Islands. The internet service is shocking and I struggle at times to open emails.
I was contracted by the local sugar cane mill as a Sugar Chemist. Although I trained personal who operated the stations involved with clarification and sugar boiling, most of my time was spent fine tuning the fugal station to achieve premium sugar quality.
I have to say my current doctor who I have had for four years understands diabetes. I see him mainly at my three monthly blood tests. When blood tests are done I know that my random blood glucose may not be correct if it is in the hypo range. But that will be another post.
Thanks Judith and wishing you a great year.
very Fascinating, life story,