Unexplained Hypoglycemia fast drop

[Mrswiggy]

Hi.
A little background I'm on a PEG feeding tube about 12 hours a day ... but not at night. (Had tongue cancer age 30)

So after a bout of illness 18 months ago when I was in hospital for 9 weeks, I stated getting a few hypo's lowest 1.8 but once I recovered some it was only every so often so endochronology said speak to my dietitian and I was discharged. 6 months ago they started up again but we spotted a pattern , it was 30 to 90 mins after ice cream or carbs (I do eat some but tube 75% and oral 25%) .... so I cut them.out almost completely.

I then discovered I would wake up with sugars at 3 or lower. And and hypos..... which were quick.... I mean 6.5 one min then 3.1 45 mins later.

I'm currently recovering from sepsis in hospital and I'm just having hypo after hypo.... I'm on 2 hourly sugars as the drop so quick .. even on my feed and twice when having a 5% glucose drip over 8 hours so wasn't fast but should have worked.
A doc woke me for something yesterday and I was slurring and difficult to wake. Then they tested 2.8.... couldn't find glucogel and when they returned I was tired and a little combative (saying no I'm just tired pulling covers etc) They won't discharge me now as hypo in sleep is obviously pretty dangerous. I want to be home for Christmas with my hubby n kids)

The last thing is even after glucogel and a glucose injection the highest level I've ever gotten is 6.5, one nurse said that was unusual.

I have very very little knowledge so any advice or sign posting would be massively helpful
Sorry it's long.

 

[Brunneria]

Hi and welcome!

I am very sorry that you are having to go through this, and I sincerely hope that things get stabilised enough to get home asap.

I will have to phrase the following very carefully because firstly, I am not in a position to ‘diagnose’ (none of us here are), and secondly, it sounds like you have a lot going on healthwise, and only you and your medical team can see the whole picture.

So how about I explain what happens to me, and what would happen to me in your situation, and then you make up your own mind whether it is ringing any bells...

Ever heard of something called Reactive Hypoglycaemia?

It is a condition where, if someone eats a lot of carbs (for example a glucose filled liquid meal via a PEG) their body thinks ‘oooh, lots of carbs! Don’t want blood glucose to get too high. Will pump out lots of insulin’ which removes the glucose from the blood and tucks it away into storage in the body’s cells.

Obviously this is a good thing, a normal thing, and it keeps blood glucose nicely regulated.

However, for people with RH, the body (for whatever reason) misjudges how much insulin to produce, and ends up pumping out extra. The result (predictably) is that too much blood glucose is removed from the blood and the person goes hypo.

Now, for me, and most RHers, the solution is fairly simple: don’t eat the carbs in the first place, so you don’t trigger a big insulin release, and then you don’t go hypo...
There are a few other tips and tricks that come in useful, such as eating fat and fibre alongside a small portion of carbs. The fat and fibre slow the digestion and reduce the speed of the glucose and insulin arriving, and therefore slows the rate of that the glucose level plummets - which slows, or reduces, or prevents, the resulting hypo.

For me, with RH, being put on a glucose drip would be a bad thing. I would get glucose constantly being added to my bloodstream, my body would therefore constantly react by releasing (excess) insulin, which would push my blood glucose down, and voila! Hypo. Either constant hypo, or a series of endlessly recurring hypos.

I actually have a Medicalert bracelet with reactive hypoglycaemic, do not treat hypos with glucose on it, because I have a real concern that one day I could find myself unconscious in a hospital with some helpful doc hooking me up to a drip, and me unable to stop them.

Right, this is where I get to speculate (carefully ):

What if you, with your stressed out ill body is just having to deal with too much? The PEG, hospital carby food, the stress of being stuck there, the sepsis, the antibiotics...
And what if the endless glucose drip and the PEG liquid meals are simply overloading your poor body’s capacity to regulate its insulin and you are hypoing due to excess insulin driving your blood glucose down.

I am probably not explaining this very well, so will provide a few links about RH.

https://www.diabetes.co.uk/reactive-hypoglycemia.html

https://en.wikipedia.org/wiki/Reactive_hypoglycemia

https://www.ncbi.nlm.nih.gov/pubmed/2645126

Obviously, it is entirely up to you whether anything I have written rings any bells.

if it does, then I suggest spending some quality Google time researching
Reactive Hypoglycaemia
Idiopathic Reactive Hypoglycaemia
And also
Dumping Syndrome

The usual medical advice for RHers is to eat wholegrain carbs every 3 hours to drip feed glucose and keep the hypos at bay.

Unfortunately, drip feeding carbs just causes me hypos (or one long endless hypo) for the reasons given above, whether the carbs are wholegrain shredded wheat or glucose tabs. So instead I remove carbs from my diet and feel great. No carbs => no excess insulin => no hypos.
A basic ketogenic diet, v low in carbs, with plenty of meat, fish, eggs, cheese, cream, green veg, works well.

Not sure how you would manage to do that, in hospital, on a drip.

 

[Lamont D]

I would like to add to @Brunneria post, which is really very good and gives you an idea what you are up against if it is RH!
I have a medical necklace with reactive hypoglycaemia on it, and on my medical alert in my wallet, I have, no glucose, no glucagon, no fast acting carbs!
I would also like to add that the Hypoglycaemia may be caused by a pancreatic condition.
Until your medical team get the results from tests, will a clearer picture and understanding of what is causing your health problems. Hopefully a good diagnosis is not too far away!
Hope you are feeling better soon!

Best wishes

 

[Mrswiggy]

I would like to add to @Brunneria post, which is really very good and gives you an idea what you are up against if it is RH!
I have a medical necklace with reactive hypoglycaemia on it, and on my medical alert in my wallet, I have, no glucose, no glucagon, no fast acting carbs!
I would also like to add that the Hypoglycaemia may be caused by a pancreatic condition.
Until your medical team get the results from tests, will a clearer picture and understanding of what is causing your health problems. Hopefully a good diagnosis is not too far away!
Hope you are feeling better soon!

Best wishes

Thank you so much for replying x

 

[Mrswiggy]

I would like to add to @Brunneria post, which is really very good and gives you an idea what you are up against if it is RH!
I have a medical necklace with reactive hypoglycaemia on it, and on my medical alert in my wallet, I have, no glucose, no glucagon, no fast acting carbs!
I would also like to add that the Hypoglycaemia may be caused by a pancreatic condition.
Until your medical team get the results from tests, will a clearer picture and understanding of what is causing your health problems. Hopefully a good diagnosis is not too far away!
Hope you are feeling better soon!

Best wishes

You explain wonderfully thank you . I will do some research . Thank you again.