Anyone who loves a good puzzle, look no further! I am at my wits end and someone suggested this community for some possible help.
Female 5'9, pre pregnancy weight 122. No significant health problems. History of low blood pressure, iron deficiency anemia corrected with iron pills, mild mitral valve prolapse.
After childbirth and cessation of breastfeeding, I began having episodes where I would be pale, anxious, hungry, shaky, lightheaded, etc. They were diagnosed by ER as panic attacks. At the same time, I began contraceptive pills. I quickly gained about 30 pounds and the episodes continued. One evening, after a particularly carb heavy meal, I felt the same symptoms and checked my blood sugar on a home meter. It was 72. Juice brought it up and I felt better. I continued to experience this and my blood sugar was always in the 70's when I felt this way. Food/juice corrected the feelings. I saw an endocrinologist who ran every test known to man. BMP, CBC, TSH, T3, T4, Adrenal hormones, liver enzymes, insulin levels, a lot of autoimmune labs, thyroid ultrasound, etc. He suspected Hashimoto's Thyroiditis. All were normal, except elevated cortisol. Fasting sugar was 80 and fasting insulin was always 6-9. He diagnosed adrenal fatigue and reactive hypoglycemia due to poor diet. My problems improved with diet overhaul and life went on.
A few years later, I suddenly began losing weight rapidly without cause. I got down to 110 pounds, and I am a very tall woman. My BMI was under 18. I was put through another battery of the same tests, and everything was normal except the blood sugar dropping to the 70's after meals. I had been sticking to the low carb diet and mixed meals as prescribed, and I would still experience these problems. After eating a portion of red meat and vegetables with 2 bites of roasted potato my sugar would drop to 64.
I was hospitalized for a 72 hour fast with a suspected insulinoma. After the hourly sugar checks and every 6 hour insulin, proinsulin and c peptide tests, insulinoma was ruled out. In fact, any condition of excessive insulin was ruled out, because as my sugar was down to 51 after 26 hours, my insulin was appropriately turned off. The only odd thing is that I was given a glucagon injection to recover my sugar, and it was expected to bring up my blood sugar significantly, and it only came up 6 points by serum blood testing in 30 minutes. No one could explain that.
I continued to suffer with what appeared to be reactive hypoglycemia, no matter how low carb or mixed my meals were. Eventually it seemed to just come under control even though I did nothing different. My fasting blood sugars are always normal, from 77-85. I had continuous glucose monitoring for 3 days. Results showed low blood sugar. Meals didn’t bring it above 100 very often. Lowest mid day reading was 59. I haven’t mentioned yet, but I take no medications and do light exercise.
Years passed, and I had another child. During the pregnancy instead of the standard glucose testing, I was fed eggs, toast, orange juice, etc. and my one hour sugar after that meal was 63. I felt hungry.
This prompted another visit to the endo. Same battery of tests run including going to the lab 3 days in a row for fasting sugar and insulin. 1st day fasting sugar was 82, insulin was 3. 2nd day was low carb breakfast. One hour later sugar was 67 and insulin was 38. 3rd day was high carb breakfast. One hour later sugar was 63 and insulin was 44. Doctor says they don’t know if that insulin level is too high because it could have been at its peak, and insulin release varies on food, etc. I was told that there was a problem, but they can’t understand exactly what it is. I have had CT scan of my pancreas, but they messed up the test and did not give me contrast, so all they could see was a “diffuse, prominent pancreas”. Doctor says that means nothing.
I had to switch to a new doctor who, knowing all this information, says that this is not “true hypoglycemia”. Doctor says the number on my meter must be 55 or she cannot diagnose hypoglycemia.
I continue to have these problems. Fasting sugar is normal and I often feel fine until I eat. I eat a carb monitored diet, mixed meals, whole grains when I do have those very few grain carbs, tons of organic fresh veggies. Drink lots of water. Try to avoid processed foods, avoid sweets and sugars even hidden sugars, pay close attention to labels and nutrition and it doesn’t appear to help.
I am still nursing a baby now also. Still take no medications or vitamins. My weight crept back up by another 30 pounds AFTER I lost my childbirth weight, and just now I am slowly losing some, although I haven’t done anything different. I have lost 10 of those 30 pounds now.
Symptoms again are after eating, usually 30 mins. Feeling anxious, shaky, weak, “flat” and I will check sugar at it will be in the 60’s-70’s. I can eat the same meal 5 days in a row and 1 out of the 5 I will have low blood sugar after. Makes no sense. I got low blood sugar after snacking on 4 pieces of raw vegetables.
To throw the wrench in the gears here, I have had my blood tested for antiGAD antibodies and they were positive. Apparently Type 1’s test positive for these autoimmune antibodies, sometimes having the number in the thousands. My result was 1.7. Doctor thinks that my symptoms could match up to more of a pre diabetic state and says hypoglycemic episodes can precede a type 2 diagnosis, but then that doesn’t match up to the positive antiGad which would only show up in relation to type 1 diagnosis. I have never had a high blood sugar ever.
Anyone out there have any thoughts, experiences, help, crazy ideas?? I have an appointment this summer at a teaching hospital to go over all of this with a specialist endo there. HELP!