Renewed Frustration

[Oh766]

Hi everyone,
You all were so helpful earlier in the year when I was struggling, and I’ve been feeling really alone so thought it was time to reach out again. I’ve been following a pretty strict keto diet for over 6 months now and for a while it was brilliant. No hypos, fewer hot flashes, much more energy, less hunger and far less thirst. The thirst was a big problem this time last year! But recently I’ve been feeling bad again. Wobbly, hot flashes that make me feel prickly all over after eating (not spicy food), tired. Putting a CGM on tonight because I’ve had enough and need some insight. But bottom line is I can’t keep doing no carb. But now my body is even more sensitised to carbs so any time I do have them the reaction is even worse than before. But I’ve had enough - I can’t join in with friends and family at parties, I miss lots of foods, and as someone with a history of anorexia, it’s bringing back horrible memories of feeling isolated and scared of food. Not really sure what I’m asking but hoping you can help. I have a follow up endo appointment after waiting about 15 months since my first appointment. Should I push for an OGTT and 72h fasting? I’ve had a mixed meal but it didn’t have as much of a reaction as most carbs I eat for some reason. 3.5 isn’t low enough for them. What would be the point of those tests? Thank you, and happy new year!

 

[Lamont D]

Hi everyone,
You all were so helpful earlier in the year when I was struggling, and I’ve been feeling really alone so thought it was time to reach out again. I’ve been following a pretty strict keto diet for over 6 months now and for a while it was brilliant. No hypos, fewer hot flashes, much more energy, less hunger and far less thirst. The thirst was a big problem this time last year! But recently I’ve been feeling bad again. Wobbly, hot flashes that make me feel prickly all over after eating (not spicy food), tired. Putting a CGM on tonight because I’ve had enough and need some insight. But bottom line is I can’t keep doing no carb. But now my body is even more sensitised to carbs so any time I do have them the reaction is even worse than before. But I’ve had enough - I can’t join in with friends and family at parties, I miss lots of foods, and as someone with a history of anorexia, it’s bringing back horrible memories of feeling isolated and scared of food. Not really sure what I’m asking but hoping you can help. I have a follow up endo appointment after waiting about 15 months since my first appointment. Should I push for an OGTT and 72h fasting? I’ve had a mixed meal but it didn’t have as much of a reaction as most carbs I eat for some reason. 3.5 isn’t low enough for them. What would be the point of those tests? Thank you, and happy new year!

I do feel sorry for you. Happy (ish) new year. Usually it is keto or just above that will help with continuous normal blood levels, as you said, you have done it but it is now extremely difficult to maintain.
I do know, how you feel, through my battles with RH, and the other conditions of anxiety, depression and others (listed below) there has been quite a few times, when I have said, sod it!
And because of circumstances, I have fell off the wagon, life does this to you.
And I had to find something to help with these feelings etc.
It is fasting and intermittent fasting.
I limit my food to a window of around five to six hours in late afternoon/evening.
And no, I never feel hungry doing ths. Nor do I have symptoms. Or hypos etc.
It is a daily break from food.
And because you are non diabetic(?) Your fasting BG levels are in normal levels, and the longer you don't eat, you should remain in normal levels. And that is much healthier for us RH ers.
I know it sounds weird but it is true, doctors can't get their heads around it!
And yes, I would take evidence of your CGM, of how you react to foods, to your endocrinologist.
And yes take a list of questions, along with your questions about further tests, especially the extended oral glucose tolerance test, because that should be the next step.

I hope this helps.
I will always say I will not go back to my hypo hell to being ill, feeling awful and all the dreadful symptoms.
I want to be as healthy as can be. That is my drive, and if others don't support that....... I would not want their friendship. It is your body, it is ok for them, you are different, and need to do things differently.

Good luck with your appointment, let us know how you get on.
Best wishes.