Discouraged, Frustrated, Undiagnosed

Hi all.
I’d like to first of say I don’t have diabetes. But I have been dealing with horrible hypoglycemic episodes since I was 11 and I feel like maybe some could relate. I’m 20 now. The first time I ever brought it up was with my second Gastroenterology doctor. I never caught it under 70ml. I just dealt with it for years later. My gastro eventually went to PCP and I went to someone else. I brought it up again at 16 with my new gastro. He checked my A1C which was normal. He sent me to a neurologist who wasted my time and said it was anxiety.

I’d like to mention I’ve also been to a endocrinologist for goiters and nodules on my thyroid that went away. Never had levels that were off. I went to another endo for an unrelated issue. He is about and hour and a half away.

My PCP sent me to a dysautonomia doctor after some battling with my high heart rate. My second gastro brought it up at an earlier time. She’s also an hour and a half away. She did diagnose me with dysautonomia/POTS but I did pass the tilt table test. She diagnosed me based on my history.

I finally went back to my PCP for my episodes. She ordered a OGTT. My fasting was 83, half hour was 185, one hour was 129, two hours was 67. My ALT was also high at 42. They redid labs did ultrasounds on liver, pancreas, right kidney, bile duct… All were normal as I was told today, and I guess my ALT was too. I don’t know they didn’t tell me much other than everything was normal.

I’m just genuinely frustrated and emotional about this. I want to cry. I already have so much stress on top of this as a 20 year old college student. I work part-time in a job that was not accommodating till I switched departments a week ago. During my shift, I’d have several days a week were I’d start feeling low and could not get out till my break. I couldn’t even drink water in front of customers. I can hardly predict it. Some weeks it won’t happen. I’ve trained myself to scarf as much as I can before doing something that requires any exert, or I know won’t be a place to easily get snacks.

I’m so close to breaking down. I just want to not deal with this anymore. I don’t want to sound like I’m jumping ship because I don’t have diabetes and hardly any evidence to support my struggles but I feel a CGM would genuinely improve my quality of life. I’m tired of never knowing when it’s going to drop. Or having to stop my life because it dropped and now it’s low and I had no idea it was dropping.

There are tears. I want answers. I want prevention.

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Could this be reactive hypoglycemia? Have doctors mentioned that?

Here is discussion on it.

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Your idea of using a CGM to document periods of reactive hypoglycemia is a good one. You’ll have to get a doctor, however, to prescribe one. Failing that, you could buy a fingerstick glucose meter and test strips (no Rx required) and do a series of fingersticks, especially during times when this is more likely to happen.

Before I was diagnosed with type 1 diabetes, I experienced reactive hypoglycemia about 2-3 hours after a sugary breakfast of cereal, milk, and fruit. Reactive hypoglycemia is a real thing and doctors should take it seriously.

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Some endo offices may have a CGM that they can loan to monitor you for 2 weeks. I thin’ it is called a professional CGM. Nancy50

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  1. Professional Continuous Glucose Monitoring - FreeStyle Libre Pro

www.freestylelibrepro.us/content/dam/adc/libreprohcp/

The FreeStyle Libre Pro Flash Glucose Monitoring System is a professional continuous glucose monitoring (CGM) device indicated for detecting trends and tracking patterns in persons (age 18 and older) with diabetes. The System is intended for use by health care professionals and requires a prescription.

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That’s the first thing I thought of is Reactive Hypoglycemia too. What you have to keep in mind that sometimes the knowledge is different with different doctors. Unfortunately sometimes it takes finding the right doctor to know what’s going on. The more uncommon things are harder for doctors to spot or recognize.

If you don’t have a meter, get one. Start documenting your blood sugars over a 7 day period. It will also give you a better picture of what is going on. Most important is to make sure you test when you have an episode so you know what numbers you are hitting and can document it…

I also have a feeling that you might change some of the foods or combo of foods you are eating? I would have to say simple sugar foods would not be good for you. (except for treating a hypo event) They have a tendency to boost blood sugar and then drop suddenly even in a “normal” person. Fats slow down carb absorption, proteins are usually more stabilizing.

I hope you find out what is wrong. Hugs!