Help. I'm afraid that I'm masking my own MODY diabetes and not getting treatment.

30f

TLDR: I think I'm getting false/exadurated hypoglycemia readings and I'm on an extreme diet. So my endocrinologist won't acknowledge my hyperglycemia when eating normal foods. She wants me to do a mixed meal test but it will HURT me.

Symptom history:

Neuropathic pain in hands in feet, confusion after eating lots of carbs, low weight regardless of calories, high cravings of carb foods, blurry vision, numbness, tingling. Diagnosed with pots syndrome and a tendency towards potassium deficiency like my mother and brother. I was offered no treatment and didn't take it seriously because I felt it didn't explain all of my symptoms.

I eventually noticed that I needed to stop eating desserts and large amounts of simple carbs in order to avoid episodes of severe confusion. It was bad enough doctors thought I had some kind of seizure but I don't.

At one point things got so bad that I was stuck in a boot for nerve pain. I decided to cut all carbs entirely and was able to walk on my feet again.

I started thinking about diabetes, especially since I was prone to skin infections, frequent urination, and other symptoms.

Blood sugar and ketone readings

I bought a glucometer. Blood was difficult to draw, which I accepted because my mother has the same complaints. Readings two hours after eating low carb foods such as low carb breads would range from 20-70. Even at 20, I didn't feel well but I was able to walk and talk, which was mysterious. I bought urinalysis strips and found that I had ketones every morning from mild to high. I saw an endocrinologist. Together we decided that I must have some kind of glycogen storage disease, after checking for other conditions like Addison's. One morning I started blacking out while walking down the hall. My blood sugar was fine. My ketones were at the highest level on the urine strip. I did a lot of research and started drinking ucan every night which is a type of cornstarch meant to take 8 hours to break down for the purpose of stable blood sugar for glycogen storage disease. This kept ketones at bay for the most part.

Later that year I wound up getting a tonsillectomy. My endocrinologist was on leave and her colleague covered her. This endocrinologist prescribed me a CGM in case I have issues during the procedure. This is where my story became more confusing. The cgm was reporting hypos not only after eating light meals, but every night within minutes of falling asleep to the point where I had to turn it off at night. No matter what I ate in bed it would alarm as soon as I fell asleep, even if I wasn't laying on it according to my husband. It would also plummet after leaving the bathroom after showering. It would also plummet after going for a walk or doing housework. I should mention that my BG would never spike before dropping.

The craziest thing I discovered is that I actually have high blood sugar after eating real simple carbs like rice, juice, or pasta. As soon as I hit 180 ketones are high; extreme peripheral pain and confusion ensues. I do not crash after spiking. I just stay 250+ for hours, I'm talking after a quarter cup of rice. For days after hyperglycemia I would never have a hypoglycemic episode.

I know that my BG was way higher before I started cutting sugar because I would feel like this before and think I'm tired and just keep eating. I would eat WAY more than a little bit of rice and I would feel WAY sicker and had cognitive impairment as a result. I was literally getting in trouble at work and my hands were swelling with pain. I've even passed out a few times after eating an acai bowl.

At this point in my story, I start thinking, okay, just like my mother and brother I somehow have hypoglycemia and diabetes. However, because I'm on a diet of meat and pea protein shakes, my endocrinologist continues to see me as a hypoglycemia patient as I'm concealing the diabetes numbers with extreme dieting, motivated by my nerve pain.

The current situation

Currently my mom only has diabetes and pancreatitis, no more hypos. Mom and brother's doctors are thinking MODY. All of our genetic tests come back negative, but that doesn't rule it out. We have other relatives we don't know well or are deceased with pancreatitis and diabetes, such as maternal grandmother and uncle.

My current theory is that low perfusion and/or blood pressure is giving me false low blood sugar reports on both the glucometer and cgm.

I'm not sure what to do. I'm scared that I have will low insulin and literally cannot access treatment without eating pasta for a mixed meal test. All because I may or may not have hypoglycemia too, am on a mostly meat diet, and my doctor still thinks I have glycogen storage disease. Meanwhile I only have ketones when I eat something with a lot of simple carbs.

Please help. I want to prevent the progression of the disease so that I do not have to deal with more complications in the future.

Thank you!!!