Hey guys. I've been struggling with reactive hypoglycemia for about a year. I'll have multiple lows a day sometimes when I have bad days and even the smallest meal will make me low.
I have a BGM and test so I know I'm having these frequent lows and have had a CGM and it didn't show any highs.
Even though I have this evidence my doctor wont do anything because my hb1 is normal.
How can it be normal? I've checked the tests it is normal but I know I'm having lows.
Is there anything I can do apart from finding a new doctor? I've been having complex carbs and smaller more frequent meals but sometimes that isn't enough to keep me stable.
Hi,
@Justneedhelpinfo and welcome to our forum.
Just a couple of questions if you don't mind.
What is your last hba1c?
Do you still use your CGM?
Could it be possible for you to post one of two of the daily readings?
What is normal? Sorry, had to throw that one in. Most people are not the norm. We are individually different.
I'm weird, been told so!
If I can understand your post, you are saying that even small amounts of food don't give you a high(spike)?
And on many occasions, for no apparent reason, you actually go either lower or into hypo levels?
And even though your doctors have not got a clue, I have heard and read similar symptoms.
You do get symptoms?
Do you know if you have an intolerance or an allergy?
This is, as has been already said, needs a referral to a specialist endocrinologist in these types of rare conditions.
They have been grouped as Hypoglycaemic. Varying types of when, like me, go actually hypoglycaemic, because of something not working as it should.
Mine is intolerance and I have a reaction to carbs and sugars.
It is because of overproduction of insulin, it is in reaction to high blood glucose, after eating.
If you manage to get a referral, to prepare for the appointment, any readings from a CGM, a food diary, with as much information as you can. And a list of symptoms.
You should have a few tests to get a diagnosis.
As for food, at this stage. You are at least trying and testing experimenting and finding what does work for you.
If you are finding, then test around those meals, pre meal, an hour and two hours after. And as you get used to doing the testing, you should see, the results making sense.
And if you do go low, just a small bite to nudge you back up, do not over treat a hypo, as it may cause another reaction.
Just to warn you, there are not many endocrinologist that are aware of some of the rarer Hypoglycaemic conditions. And it may come down to just controlling what you are susceptible to, once you find out what it is.
I have read a report and posts describing a thing called flatline hypoglycaemia. I don't believe that it is reactive hypoglycaemia(RH) but even within RH there are other descriptions of having hypoglycaemia due to food. Or it could be due to vitamins, pancreatic issues, or any organs. You can never get a true diagnosis unless you get the tests.
The longer version of my condition is....... Non diabetic Late Reactive Hypoglycaemia.
So I know the frustration from ignorant doctors. I fought and battled many and even a specialist, that didn't have a clue.
Keep asking.
Best wishes.
