Hi all. I'm Jess and am lost in all this. Got CFS but being referred to Fibromyalgia team too.
It's nearly a year ago my blood sugars started to drop. Done some tests including the 72 hour fasting. Been diagnosed with Reactive Hypoglycemia. I'm also seeing a dietitian regarding this.
I haven't got a blood sugar monitor yet so can't say what my levels are, but really struggling as soon as I've eaten anything and then keep struggling until I eat again, which is every two hours or so. Might get a window when feeling OK ish.
As my husband is a dietitian as well, I do eat well and well balanced meals and trying to follow a low GI diet.
Any advice or experiences you want to share is helpful to try to get my head around this horrible condition.
And any good monitors out there and what one's to avoid?
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Hi
@JDub
Welcome to our forum.
Even though you have been diagnosed, you are not the good health that everyone has assured you about eating 'healthy!' Even your partner has never come across something like this and the normal dietary advice that is given to people with the condition or symptoms of the condition.
You have a rare condition, the 72 fasting test, is testament that you have a pancreas that doesn't behave like any others except those with RH!
I have the condition, I am intolerant to many foods, which means, that if I eat anything with carbs or sugars, my blood glucose goes up and then down making me feel awful.
Normal dietary advice doesn't work.
If you had food allergies, you would be advised to avoid them.
So if you have a group of foods that trigger an overshoot of insulin that will make you ill, why eat them?
My endocrinologist, doctor and dsn are now agreeing with me as to control the condition. I have experienced and experimented with all the food I like and found others like spinach, that I can tolerate without messing my blood glucose levels up and down.
The crucial advice is to be really healthy as possible with the condition is to maintain normal blood glucose levels, all the time. The avoidance of the food that exacerbates the symptoms is how to get control.
Usually glucometer is crucial in helping you understand what is happening.
If you eat carbs of any level of the GI foods, that will raise your blood glucose levels up, often very quickly, you hyper! This is because your initial insulin response is weak.
You get a second insulin response, because the amount of glucose in your blood is too high, so the second insulin response is too much for the glucose and you overshoot and too much insulin causes low blood glucose levels, a hypo!
The hyper then hypo over those hours is bad enough, but your body is not designed to cope with such a fluctuation in blood levels, this is why you feel awful.
I was advised by many practitioners and elsewhere on the internet and usually eating every two to three hours is the recommended treatment.
But that is because most practitioners believe we need glucose derived from carbs to help our brains cope and also stop the hypos. This is a reasonable piece of advice for some conditions but not RH!
For some reason, that is in the long run not going to help you get good control.
In my experience and my opinion of living with this condition for about four years since diagnosis. Very low carb (under 20gms per day) and intermittent fasting has helped my health be as good as possible with my age taken into consideration.
A couple of questions?
How did you feel at the end of your extended fast?
Did your energy return?
Where you hungry?
Did the brain fog go?
I know you have other conditions as well and I have no experience with advice on those, but please read the advice and experience of those who have posted on the forum. We have had some good success helping other RH ers.
Again welcome, and if you need questions answered, please ask!
RH is a dietary condition that can be controlled by a 'healthy' diet that is tailored to your particular personal lifestyle and finding that balance is and will make you healthier.
Best wishes.