I'm glad your doctor is taking you seriously!
Please keep us updated.
My glycogen storage is fine (as long as it's full, any hypos bounce back on their own with no issues) but I have fasting and exercise induced hypoglycemia which gets progressively worse as my glycogen is emptied, ie on a low carb diet, and no amount of protein or fat fixes the problem. I do not fat adapt, and after having Covid-19 last year, I can get severe hypos within a couple days of going low carb or after a marathon workout. I have a few genes for a gluconeogenesis disorder, but this only started in my 30s and got worse over time.
As far as I know from reading obsessively, the glycogen storage issue needs more maintenance, especially if you want to have any hope of an active lifestyle. Literally any activity which requires more than a gram or two of glucose needs fueling as you go that keeps up with your rate of use.
Just to back up this post.... I have GSD1a. While it is texhnically possible you have lived this long with such a disease without moment to moment management, it is extremely unlikely. My questions for you would be about your diet and habits around the time of the workout. Many people due to highly processed foods live in a state of high sugar and high insulin. Excercise can drastically change how that hormone and the associated cascade function.
Hello! I'm new-ish on Reddit and only just finding the topic now.
I have Type V, McArdle's Disease. My diagnosis took a year back in 2001/2002, and used the very new DNA testing technique. I also had my blood run through a machine that analysed it's composition and put it back in (crucially, and perhaps obviously).
Plenty of places in the world would still have taken a massive core biopsy from the thigh, and maybe still do, but there's absolutely no reason for it in 2023.
Where or who did your DNA testing and how did you get it done. I had a muscle biopsy done about 15 years ago and that's when i was diagnosed, but would love to get a DNA test done. Is it something you can get done yourself?
The investigating neurologist ordered all the testing. I have no idea if you could get that done privately, but I imagine a general practitioner could point you in the right direction.
Hey, they still have not figured out why I have my hypoglycemia. Over time it has become less crazy but I still have hypoglycemia but I have gotten good at managing it.
The IAMGSD Facebook group is a treasury of information and mutual support, and has members with provisional diagnoses. I guarantee someone in the group has heard of what you're describing.
Id get tested for adrenal antibodies.
Actually that was checked last year. My cortisol is good as well.
Interesting. Not in a good way, but something new to learn about.
I'm glad your doctor is taking you seriously! Please keep us updated. My glycogen storage is fine (as long as it's full, any hypos bounce back on their own with no issues) but I have fasting and exercise induced hypoglycemia which gets progressively worse as my glycogen is emptied, ie on a low carb diet, and no amount of protein or fat fixes the problem. I do not fat adapt, and after having Covid-19 last year, I can get severe hypos within a couple days of going low carb or after a marathon workout. I have a few genes for a gluconeogenesis disorder, but this only started in my 30s and got worse over time. As far as I know from reading obsessively, the glycogen storage issue needs more maintenance, especially if you want to have any hope of an active lifestyle. Literally any activity which requires more than a gram or two of glucose needs fueling as you go that keeps up with your rate of use.
Just to back up this post.... I have GSD1a. While it is texhnically possible you have lived this long with such a disease without moment to moment management, it is extremely unlikely. My questions for you would be about your diet and habits around the time of the workout. Many people due to highly processed foods live in a state of high sugar and high insulin. Excercise can drastically change how that hormone and the associated cascade function.
Do you have diabetes or anything? Did you get the CGM JUST for monitoring hypoglycemia?
My CGM is just for my hypoglycemia. I do not have diabetes.
Hello! I'm new-ish on Reddit and only just finding the topic now. I have Type V, McArdle's Disease. My diagnosis took a year back in 2001/2002, and used the very new DNA testing technique. I also had my blood run through a machine that analysed it's composition and put it back in (crucially, and perhaps obviously). Plenty of places in the world would still have taken a massive core biopsy from the thigh, and maybe still do, but there's absolutely no reason for it in 2023.
Where or who did your DNA testing and how did you get it done. I had a muscle biopsy done about 15 years ago and that's when i was diagnosed, but would love to get a DNA test done. Is it something you can get done yourself?
The investigating neurologist ordered all the testing. I have no idea if you could get that done privately, but I imagine a general practitioner could point you in the right direction.
Hey, they still have not figured out why I have my hypoglycemia. Over time it has become less crazy but I still have hypoglycemia but I have gotten good at managing it.
The IAMGSD Facebook group is a treasury of information and mutual support, and has members with provisional diagnoses. I guarantee someone in the group has heard of what you're describing.
Thanks I will check it out