Undiagnosed

I am currently very confused on what is happening to me. Last 3 weeks, sweet taste in my mouth, ketones, weight loss, feeling tired and exhausted. Went to ER, measured BG, normal. Still thought I had diabetes so cut out all carbs and spent 2 weeks eating proteins and fats. I probably am in ketosis, also was not eating much calories so probably some starvation was involved.

Went to endo, got OGTT, spiked to 13.8 at 2 hours. Got sent to ER, BG went down on its own to 3.8 after 3 hours. Spent 2 days being monitored. Fasting BG was 3.8-4.6. They caught one spike to 8.2 around 1 hour after meal. It went down on its own again. My c-peptide is low: 0.68. At a time of c-peptide, my BG was 4.1. I was also not eating much carbs or food for that matter, so endo thinks my pancreas was “asleep” hence low c-peptide.

I was tested for 3 antibodies: GAD, islet cell and insulin. All are at 0, non-detectable. My liver, kidney values are normal. Endo explained my spikes on OGTT as being on low carb diet and starvation as evidenced by high ketones and very high cortisol that supress insulin and hence build up of glucose in blood.

He told me to go to dietician and start refeeding with more carbs to get back to normal. But I am not convinced. After every meal, I feel like crap, lethargic and so on. 2 days ago, for 2 nights in a row, I woke up with racing heart, cold sweat, trembling and weakness. My BG was 5.0 at a time (measured twice), so not hypo. I ate bacon, eggs and beans before meal each time.

I feel like crap still and am doubting my diagnosis. The c-peptide seems too damn low and am feeling like spiking after carby meals. What else can I do? This is getting unbearable. I will not get my GP on board because it was my initiative to see endo and it panned out as “not diabetic”. What else can I test for?

“The normal range for a c-peptide test is: 0.51 to 2.72 nanograms per millilitre (ng/mL)
This may also be expressed as: 0.17-0.90 nanomoles per litre (nmol/L)”

So your C-peptide is on the low side but in the normal range if you meant ng/mL.

I don’t think 13.8 mmol/L indicates a normal glucose metabolism. It appears the endo sending you to the ER was rattled by that number, too. If it were me, I’d ask to see the endo who sent you to the ER. Something is not right here and your suspicions are reasonable. Some diagnoses do not fit neatly when compared to the classic symptoms.

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It does not. The endo sent me to ER, and then I was under his supervision in the hospital for 2 days. They took my blood glucose every 4 hours, did a battery of tests, including antibodies that are negative. He thinks all will sort itself out over time with more carbs back into diet, but honestly, I don’t think so.

Can you give me more ideas on what to investigate?