- Messages
- 26
- Type of diabetes
- Reactive hypoglycemia
- Treatment type
- Diet only
First off, hello everyone! I'm super stoked to have found this forum - FINALLY, I've found other people who are like me! I know I've written a lot, but I hope it's at least entertaining - it has been a strange journey for sure.
I've been dealing with reactive hypoglycemia from the moment I hit puberty - I'll never forget the first event. I was 11 years old, with my parents in a shopping mall, when suddenly I began shaking violently, sweating, and feeling like I was going to faint. I could barely even walk, so my parents had to hold me by my arms and rushed me to a McDonalds, because my mom had a feeling that whatever was happening to me had to do with blood sugar. Sure enough, 10 chicken nuggets later and some sugar had me feeling alive again. But unfortunately, this has been my life ever since - I experienced RH pretty much daily all throughout my teen years and early adult years, because I never got diagnosed (A1c and fasting glucose were always normal), and I didn't know the connection between RH and carbs, and my diet was mostly carbs. I thought RH happened because I didn't eat enough (I've always been super skinny), so you can imagine the constant blood sugar rollercoaster I was always on, constantly eating carbs all day.
Fast forward to today: I'm 26 years old, still thin as a rake, and have reason to believe that RH has taken its toll on my body. First, I was completely blindsided by a diagnosis of autoimmune thyroid disease last year (Hashimotos) because nobody in my family has ever had this. But whatever, I started on Levothyroxine and went on with my life, and thought all was well. But THEN, just a few months after that, my periods completely stopped. I knew I couldn't be pregnant, so I went to the doctor to see what could be going on. Turns out, my testosterone levels were massively elevated - over half of the maximum amount that a woman should have! I took a closer look at my face - I was beginning to sprout chin hairs that definitely weren't there before! An ultrasound revealed my ovaries were completely covered in cysts, and with that, I was diagnosed with PCOS (polycystic ovarian syndrome).
Absolutely nobody, not one woman in my massive Mexican family of 38 first cousins, has PCOS. But nobody in my family has reactive hypoglycemia either - believe me, we've been on a journey of asking and investigating in an attempt to understand what on earth happened to me/who placed a curse on me. Needless to say, I'm pretty angry at life because it all seems massively unfair.
The good news, I guess, is that I've got my RH under control now. Upon researching PCOS, I learned that there is significant evidence that chronically elevated insulin is the thing that stimulates the ovaries to overproduce testosterone in this condition. Insulin resistance, in fact, is now largely accepted to be the driver of PCOS, so much so that reversing insulin resistance through diet and exercise can reverse the PCOS. So, off to the endocrinologist I went, to check my insulin. I thought this was going to confirm insulin resistance for sure, so I was braced for that news when I received the call from my doctor:
"Good news", he said, "you have no signs of insulin resistance. Your HOMA-IR is excellent, OGTT was normal, fasting insulin is nice and low".
WHAT!? But how can that be? How then, can my reactive hypoglycemia and PCOS be explained? Mind you, at the time I had these tests done, I was still eating bowls of noodles and giant burritos, so I was expecting the worst. I suppose I should be happy I'm not insulin resistant, but I feel more confused than before. I resented my doctor for not checking postprandial insulin during the 2-hour glucose tolerance test - I have a feeling we may have caught something unusual. Anyway, my glucose was normal at the end of two hours, so we didn't even catch the hypo. But, an hour after I had walked out of the lab - BAM! - I almost passed out from a massive hypo attack. I told my doctor this, he almost laughed at me and said I was freaking out over nothing. Thanks doc.
I've had to take all the research into my own hands, since doctors weren't going to help me. I read about low-carb eating, and started applying it - problem solved. As long as I don't eat sugar and refined carbs, I'm fine. But I still have PCOS, and have to take powerful anti-androgens to keep my masculinizing symptoms away. I don't understand, and it has really decreased my quality of life.
So, I come to y'all with some questions, and to hopefully connect with others who've experienced anything similar to what I have. Absolutely any insight is appreciated!
1. Is Reactive Hypoglycemia not related to Insulin Resistance? What are your theories on what causes Reactive Hypoglycemia in the first place? I was so young when it started in me, that I don't think lifestyle could have triggered it!
2. I don't know how much I can trust the accuracy of glucose monitors, but I checked my glucose one hour after eating a burrito from Chipotle (they are massive and very high-carb) and was disturbed when I saw my spike was over 160 mg/dl (8.9 mmol/L)! I read somewhere that normal people never spike over 140 (7.8 mmol/L), but I don't remember where I got that from and don't know if that's true. Thoughts? My glucose was normal when I checked 2 hours later.
3. A commercial genetic test revealed I may have the mutation for Non Classical Adrenal Hyperplasia, a rare condition more common in Hispanic populations that, symptoms-wise, looks exactly like PCOS, but the pathology is different. I need to run more tests to confirm this, but I'm interested in knowing if anyone here has experience with NCAH and knows whether that is related to blood sugar dysregulation (I can't find a lot of info on it, though at least one source I read claimed that it does affect blood sugar).
4. Because I was stupid and had gotten so used to them, if I was too busy to eat I would sometimes let my hypos go on for a long time - pretty much until my liver took over and started slowly raising my glucose on its own. I would manage to continue working, walking, or whatever I was doing, while tolerating the horrible feeling of a hypo. Can frequent and prolonged hypoglycemia damage the body or endocrine system?
And finally, I'd just love to know of any thoughts or similar stories anybody here can share. Thank you so much, and greetings from Los Angeles.
-C
I've been dealing with reactive hypoglycemia from the moment I hit puberty - I'll never forget the first event. I was 11 years old, with my parents in a shopping mall, when suddenly I began shaking violently, sweating, and feeling like I was going to faint. I could barely even walk, so my parents had to hold me by my arms and rushed me to a McDonalds, because my mom had a feeling that whatever was happening to me had to do with blood sugar. Sure enough, 10 chicken nuggets later and some sugar had me feeling alive again. But unfortunately, this has been my life ever since - I experienced RH pretty much daily all throughout my teen years and early adult years, because I never got diagnosed (A1c and fasting glucose were always normal), and I didn't know the connection between RH and carbs, and my diet was mostly carbs. I thought RH happened because I didn't eat enough (I've always been super skinny), so you can imagine the constant blood sugar rollercoaster I was always on, constantly eating carbs all day.
Fast forward to today: I'm 26 years old, still thin as a rake, and have reason to believe that RH has taken its toll on my body. First, I was completely blindsided by a diagnosis of autoimmune thyroid disease last year (Hashimotos) because nobody in my family has ever had this. But whatever, I started on Levothyroxine and went on with my life, and thought all was well. But THEN, just a few months after that, my periods completely stopped. I knew I couldn't be pregnant, so I went to the doctor to see what could be going on. Turns out, my testosterone levels were massively elevated - over half of the maximum amount that a woman should have! I took a closer look at my face - I was beginning to sprout chin hairs that definitely weren't there before! An ultrasound revealed my ovaries were completely covered in cysts, and with that, I was diagnosed with PCOS (polycystic ovarian syndrome).
Absolutely nobody, not one woman in my massive Mexican family of 38 first cousins, has PCOS. But nobody in my family has reactive hypoglycemia either - believe me, we've been on a journey of asking and investigating in an attempt to understand what on earth happened to me/who placed a curse on me. Needless to say, I'm pretty angry at life because it all seems massively unfair.
The good news, I guess, is that I've got my RH under control now. Upon researching PCOS, I learned that there is significant evidence that chronically elevated insulin is the thing that stimulates the ovaries to overproduce testosterone in this condition. Insulin resistance, in fact, is now largely accepted to be the driver of PCOS, so much so that reversing insulin resistance through diet and exercise can reverse the PCOS. So, off to the endocrinologist I went, to check my insulin. I thought this was going to confirm insulin resistance for sure, so I was braced for that news when I received the call from my doctor:
"Good news", he said, "you have no signs of insulin resistance. Your HOMA-IR is excellent, OGTT was normal, fasting insulin is nice and low".
WHAT!? But how can that be? How then, can my reactive hypoglycemia and PCOS be explained? Mind you, at the time I had these tests done, I was still eating bowls of noodles and giant burritos, so I was expecting the worst. I suppose I should be happy I'm not insulin resistant, but I feel more confused than before. I resented my doctor for not checking postprandial insulin during the 2-hour glucose tolerance test - I have a feeling we may have caught something unusual. Anyway, my glucose was normal at the end of two hours, so we didn't even catch the hypo. But, an hour after I had walked out of the lab - BAM! - I almost passed out from a massive hypo attack. I told my doctor this, he almost laughed at me and said I was freaking out over nothing. Thanks doc.
I've had to take all the research into my own hands, since doctors weren't going to help me. I read about low-carb eating, and started applying it - problem solved. As long as I don't eat sugar and refined carbs, I'm fine. But I still have PCOS, and have to take powerful anti-androgens to keep my masculinizing symptoms away. I don't understand, and it has really decreased my quality of life.
So, I come to y'all with some questions, and to hopefully connect with others who've experienced anything similar to what I have. Absolutely any insight is appreciated!
1. Is Reactive Hypoglycemia not related to Insulin Resistance? What are your theories on what causes Reactive Hypoglycemia in the first place? I was so young when it started in me, that I don't think lifestyle could have triggered it!
2. I don't know how much I can trust the accuracy of glucose monitors, but I checked my glucose one hour after eating a burrito from Chipotle (they are massive and very high-carb) and was disturbed when I saw my spike was over 160 mg/dl (8.9 mmol/L)! I read somewhere that normal people never spike over 140 (7.8 mmol/L), but I don't remember where I got that from and don't know if that's true. Thoughts? My glucose was normal when I checked 2 hours later.
3. A commercial genetic test revealed I may have the mutation for Non Classical Adrenal Hyperplasia, a rare condition more common in Hispanic populations that, symptoms-wise, looks exactly like PCOS, but the pathology is different. I need to run more tests to confirm this, but I'm interested in knowing if anyone here has experience with NCAH and knows whether that is related to blood sugar dysregulation (I can't find a lot of info on it, though at least one source I read claimed that it does affect blood sugar).
4. Because I was stupid and had gotten so used to them, if I was too busy to eat I would sometimes let my hypos go on for a long time - pretty much until my liver took over and started slowly raising my glucose on its own. I would manage to continue working, walking, or whatever I was doing, while tolerating the horrible feeling of a hypo. Can frequent and prolonged hypoglycemia damage the body or endocrine system?
And finally, I'd just love to know of any thoughts or similar stories anybody here can share. Thank you so much, and greetings from Los Angeles.
-C
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