Monday, September 5, 2016

Misdiagnosed Diabetes

It's been a while since my last post, but I'm back with an interesting update on the diabetes front. Looks like I may not have Type 2 diabetes after all, but some version of Type 1, which was only discovered by questioning conventional diabetic advice and being proactive in my own research.

It's been almost 4 years since my prediabetes diagnosis and I'm still struggling to get my HbA1c down from 6.5%. In layman's terms, the HbA1c test measures the average of blood sugars over a 3-month period and ideal ranges are high 4s and low 5s. When my GP handed me the UK diabetes guidelines, I immediately doubted the dietary recommendations because I was already in the habit of avoiding processed foods, eating whole grains, reading nutrition labels and watching my fat intake. This prompted me to question my diet and lifestyle and dive into the diabetic literature. I thought I was a skinny-fat person and experimented with a vegan diet, inspired by Dr. Neal Barnard's program for reversing Type 2 diabetes. I started weight training to build more muscle to improve insulin sensitivity and lost a little bit of weight; however, none of this reduced my HbA1c sugar levels from 6.5%. The lowest I've been able to get my bloods down is 6.4%, which is when I wrote this post praising veganism, which in hindsight was not a significant improvement at all.

Last year my cousins put me in touch with Dr. Salzarulo and he gave me the best advice and changed my diet from low-fat, high-carb vegan to low-carb, paleo-esque carnivore. He also urged me to buy a glucose monitoring device to get a feel for how certain foods affected my blood sugar, which the NHS told me was not necessary. This was a total game changer for me and as I started measuring my morning fasting blood sugars and my postprandial sugars, I began to notice a few things:

  • My blood sugars would go up after I ate, which is normal, but then they stayed elevated all day. In healthy non-diabetics, blood sugars will go up within a healthy range and then return to fasting baseline levels usually 2 hours after eating and with Type 2 diabetics, depending on the severity of insulin resistance, blood sugars should eventually come down at some point after eating. Mine did not and I could never get my blood sugar as low or close to my fasting blood sugar in the mornings. 
  • My blood sugars would spike when I ate healthy carbs, like beans or sweet potato, even in the recommended portion sizes alongside fat and protein. I noticed the fewer carbs I ate, the better my sugar readings were.
  • Sometimes I would eat a low-carb dinner like a large piece of salmon with lots of non-starchy veggies and I would have high blood sugar after wards and the following morning too.
  • I can only hit near normal blood sugar readings by eating a very low-carb diet whilst keeping my portions small.

This past May I was introduced to Jessica Apple, founder of online diabetes magazine A Sweet Life. I started telling her my diabetes story and she asked me, "have you ever been tested for LADA?" In all my endless research about Type 2 diabetes, I never came across the phrase LADA or latent autoimmune diabetes in adults. LADA is similar to Type 1 in that the pancreas is losing it's ability to produce insulin and overtime will stop altogether, but it's more gradual. Insulin is the hormone that controls blood sugar and is responsible for moving sugar from the blood into our cells for energy use or fat storage. We cannot live without insulin and we cannot maintain healthy blood sugar levels without it. LADAs are often misdiagnosed with Type 2 diabetes because of age, but LADAs are usually leaner, physically active adults. Hello light bulb!

I went to NYC in June and immediately paid for Type 1 diabetes testing, which was expensive. I had my C-peptide levels measured because this peptide generally matches insulin levels and can indicate how much insulin your body is producing. Low levels of C-peptide and insulin paired with high blood sugars usually points to Type 1 diabetes whereas in Type 2 diabetics, you find high blood sugars alongside high C-peptide levels which indicates high insulin levels due to insulin resistance. One exception is someone with advanced Type 2 diabetes and overtime has not managed their blood sugars, thus killing the pancreas's ability to make insulin. I also tested for GADA and ICA antibodies, which looks to see if the autoimmune system is attacking the pancreas thus killing it's ability to make insulin.

Out of a normal range of 1.1 to 5.0, my fasted C-peptide levels came in at 1.1 and on this day my fasting blood sugar was 104 mg/dl and my HbA1c was 6.5%. My doctor said that my C-peptide was very low, but my fasting blood sugar was in the prediabetic range and my HbA1c was in the diabetic range. After reviewing my low-carb food diary along with my lab results, my doctor said that my diabetes looked like an autoimmune issue as in Type 1. Surprisingly I tested negative for the antibodies, but according to several diabetic forums this is not uncommon. Dr. Salzarulo thinks I need insulin therapy, but advised me to start working with a diabetic doctor probably an endocrinologist. Unfortunately, I'll have to wait until I get back to the US and get health insurance. In the meantime he suggested I go very-low carb, which is where I am today.

There's still more testing to be done and I don't have all the answers yet, but I finally feel like I have a better grasp on my diabetes. What I want you take away from this rather long technical post is that when faced with disease, it's important that you do your own homework and research. I would have never gotten to where I am today if I had solely taken my GP's advice. 
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