DS 17 signs of low blood sugar but not diabetes?

[Jagley]

DS 17 at the beginning of the year started having 'episodes' every couple of days for about a month where he would get uncontrollably shaky, very hungry, confused/not able to focus, and tired. He'd eat something and the symptoms would go away, no weight loss, but then he is on a few medications that can cause weight gain. He eats regularly and isn't peeing more frequently. We spoke to the g.p at the time and they did a Haemoglobin A1c blood test which came back normal at 38. The highest we caught his blood sugar at the time was 8.2 and lowest 4.1.
We've then gone months without this happening, but last week it happened again twice. The second time we did a blood sugar reading and it was 8.2, again after he ate something he felt okay again. It's horrible to see how shaky he gets and is worrying, he's on the g.p. list for tomorrow but wondered if anyone had any ideas what could be going on or what I should ask? (DS has SEN so whilst he can verbalise fine to me he won't communicate with Dr's).

I have reactive hypoglycaemia whereby my blood sugar crashes down several hours after eating (I've collapsed with it before) usually in an episode my blood sugars are below 4.

I got diagnosed after having (lots of tests for other things!) and then having a complete liquid meal and then blood tests every 30mins in hospital.

Hopefully your son can get a diagnosis soon.

I have Gilbert's Syndrome and I can get like this if I don't eat on a regular basis.

Im not sure about that figure of 38. Must be a different scale?
Normal peoples' blood sugar is between 4-6. I'm a type 1 diabetic and my hba1c is around 7. I don't get low symptoms until it drops below 3. So 8.2 would be high, not low.
Anyway hopefully the appointment will figure things out.
My sister gets shaky if she hasn't eaten in a while.

Thank you everyone, it's given me a few things to keep in mind. It's bizarre that he went for months without having these episodes and then its started again! Hopefully we get somewhere tomorrow.

My DS1 was diagnosed with Gilberts as a teen, his symptoms were exactly as you describe, he'd almost pass out until he ate something quickly.. turns out my brother, mum and niece have Gilberts too, all were previously individually told their 'weak and wobbly' episodes were due to possible other things before DS1s diagnosis flagged up Gilberts for them.

I'd ask about Gilberts syndrome, and if a Bilirubin test can be done.. if high, a second test after a period of time should be done to see if its dropped back down or not.

8.2 is actually above the range for non diabetics, esp if he hasn’t eaten recently. Did you have a chance for a discussion with Dr when results came back?
I am a T1 and had a few episodes months before diagnosis.
i see he take medications and there are some tablets you should not take with Gilberts Syndrome.

Remember that the path to dehydration starts 24hrs before it hits. Is he doing any unaccustomed exercise. Or staying up late without eating because it's the holidays, anything like that which is a change to the usual eating or drinking habits.

Oh what is Gilbert's syndrome?

Off to Google!

Just wanted to say to OP that my dad, my brother, myself and my eldest son have this thing too

If we don't eat for too long, or eat highly sugary food and then nothing for hours, our blood sugar drops to a level where we get fuzzy, hit, sweaty/clammy and shaky

A few crackers/carbs sorts it

I never saw it as a medical issue, I just thought we need to eat at regular times, and always carry a snack with us when we leave the house

(Just googled it. I have unexplained high bilirubin levels whenever I have a blood test… )

Hope your DS is ok and that, like some of us, it’s just a matter of proper meal times and carrying snacks

It does sound odd OP. Having a BM of 8.2 is on the higher scale, but then eating and feeling fine doesn't point to diabetes at all-with diabetes it would go even higher and feel ever worse! Its sounds like something else!

Without knowing his other conditions and medications, its hard to advise. I assume you've explored he isn't missing his regular meds, taking too many, drinking alcohol or other drugs in conjunction with his regular meds?

Maybe needs referral to a different specialist now. Best of luck and let us know how he gets on.

How are you doing BMs at home? Were you given a kit by the GP?

Thank you so much for the Gilberts pointer, going to have a look into it and check if he has had bilirubin tested before. He's pretty good at eating regularly, and doesn't really stay up late - he puts himself to bed between 8 and 9pm, not your typical teen! Hopefully we get to the bottom of it this time!

Consistently high Bilirubin levels should have been picked up on!
Having said that, for years my brother was told his symptoms were due to the fact he'd had hepatitis when younger, however after my sons diagnosis my brothers GP realized he too had Gilberts, and then my mum and niece also.

My DS's eyes hardly ever went yellow, only when he drank alcohol or was particularly tired.. when he saw his consultant, we were told he had to eat little and often, so he always had snacks with him for in between meals, when he started feeling dizzy or faint.

Its more common then people think, and yet the majority of people have never heard of it!

My dd is currently going through this also. She's 24. From a teen she suffered with constant tonsillitis so was on antibiotics a lot. The result is that her stomach was destroyed & she now has awful issues. Gp says IBS but I'm not convinced. Anything she eats can flare her up so she's full of wind or constipated. But then that same food might not cause any problems another time. She's been tested for allergies & discovered she's lactose intolerant. She's been tested for SIBO & scored very high for that so was on various antibiotics to try sort that. She's tried various diets etc. nothing helps.
The hypos started during 2020. She'd get nauseous & shaky if she didn't eat. Once she ate she immediately felt better. They are now getting worse though & not always when she's hungry. She's been to so many doctors & hospitals. Tested for diabetes & that was negative. Latest advice was for her to get a blood sugar monitor to see what's going on so that's what she's doing right now. Lowest reading during a hypo was 3.8. Food helps but not always.
It's a bloody nightmare. I feel like the doctors are being so dismissive.

I posted about this recently for my DS who is 11 years old.
He regularly goes pale, sweaty, dizzy and has nausea and the few times we've given him some juice or similar he starts to feel better.

We've just started the process with the doctor and have ruled out diabetes so far which is good.
We're going to keep a diary but it is hard as it can sometimes happen once/twice a week and then nothing for a month or so then it happens frequently again.
I did manage to get one episode on video to show the doctor which was handy.

Sorry that's no help to you but I'm getting ideas from this thread for myself. Hope you can get some answers for your DS too.