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Old 06-24-2014, 09:09 PM   #1
disfan07
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Newly diagnosed hypoglycemia and the heat

I was diagnosed with idiopathic hypoglycemia in May. We are still in the process of trying to figure why it's happening....which is why the diagnosis is idopathic right now. I am also very sensitive to large drops in my BS even if it's technically still "normal". For example, on Sunday, over 2 hours, I dropped about 40 points down to 80....still technically normal but it was too fast of a drop for me and I started having symptoms very similar to when I go low.

The other thing is that I am not always symptomatic. I've dropped as low as 40 with no symptoms. At the same time, I've had significant symptoms at 65.

So this brings me to the trip....

We are going to WDW mid August. We are going for 5 nights staying at POR and GF. Right now, we are only planning on going to MK for 1 day but we might end up going to EPCOT or a water park another day. Otherwise, we are going to be relaxing at the hotels.

I've heard that the heat and exercise can both drop blood sugars. So I am concerned about what will happen at both the parks and when swimming and miniature golf.

Is there anyway to prevent this from happening? I know I'll need to check my BS more often especially since I am not always symptomatic. I am very limited on high sugar snacks because of my food allergies. Right now, I rely on skittles, apple juice, raisins, and soda. The problem is, I have severe GI and malabsorption so I tend to need a LOT of sugar to get my BS back up.

I have no diet restrictions except for my food allergies, but it tend to do much better when I eat higher carbs and fats and low protein. My BS tends to fluctuate more and tends to consistently run low if I eat a lot of protein and lower amount of carbs throughout the day.

But I was just wondering if anyone had any advice on dealing with hypoglycemia in the heat and at the parks. This is completely new for us. I've dealt with a lot in general and at Disneyworld before.....food allergies, GI problems, asthma, autonomic dysfunction....but the hypoglycemia makes me very nervous especially since I often don't get warning signs or symptoms when I'm low. I am definitely seeing my endocrinologist before I leave and I already know that if I am still showing signs of being very unstable I will not be allowed to travel but I was hoping to get advice from people who have personally dealt with this in Disney.

Thanks.
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Old 06-24-2014, 09:14 PM   #2
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Originally Posted by disfan07 View Post
I was diagnosed with idiopathic hypoglycemia in May. We are still in the process of trying to figure why it's happening....which is why the diagnosis is idopathic right now. I am also very sensitive to large drops in my BS even if it's technically still "normal". For example, on Sunday, over 2 hours, I dropped about 40 points down to 80....still technically normal but it was too fast of a drop for me and I started having symptoms very similar to when I go low.

The other thing is that I am not always symptomatic. I've dropped as low as 40 with no symptoms. At the same time, I've had significant symptoms at 65.

So this brings me to the trip....

We are going to WDW mid August. We are going for 5 nights staying at POR and GF. Right now, we are only planning on going to MK for 1 day but we might end up going to EPCOT or a water park another day. Otherwise, we are going to be relaxing at the hotels.

I've heard that the heat and exercise can both drop blood sugars. So I am concerned about what will happen at both the parks and when swimming and miniature golf.

Is there anyway to prevent this from happening? I know I'll need to check my BS more often especially since I am not always symptomatic. I am very limited on high sugar snacks because of my food allergies. Right now, I rely on skittles, apple juice, raisins, and soda. The problem is, I have severe GI and malabsorption so I tend to need a LOT of sugar to get my BS back up.

I have no diet restrictions except for my food allergies, but it tend to do much better when I eat higher carbs and fats and low protein. My BS tends to fluctuate more and tends to consistently run low if I eat a lot of protein and lower amount of carbs throughout the day.

But I was just wondering if anyone had any advice on dealing with hypoglycemia in the heat and at the parks. This is completely new for us. I've dealt with a lot in general and at Disneyworld before.....food allergies, GI problems, asthma, autonomic dysfunction....but the hypoglycemia makes me very nervous especially since I often don't get warning signs or symptoms when I'm low. I am definitely seeing my endocrinologist before I leave and I already know that if I am still showing signs of being very unstable I will not be allowed to travel but I was hoping to get advice from people who have personally dealt with this in Disney.

Thanks.
No advice, but glad to see that the port issue that you were concerned about earlier will no longer be an issue.
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Old 06-24-2014, 09:28 PM   #3
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While we haven't been to wdw, I have been on several trips to other nearby parks with my cousin who's hypoglycemic. We live about 3 hours from wdw so the weather is about as close as you can get. What we did with her was have one of us carry an extra inhaler (for her asthma) and several snacks. I have my own allergies so this was never a big deal. We had her eat something every hour or so whether she was hungry or not. She went with us on a week long beach trip and we only had a couple of incidents when we lost track of time.

Keeping a regular snack schedule might help keep your BS up. The heat and humidity really just sucks it right out of people, even those of us who are used to it. Forgive me, I don't remember all your allergies right now, but can you have orange juice? That's what we used to get my (formerly) diabetic brother's BS up whenever he had an issue.
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Old 06-24-2014, 09:30 PM   #4
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Are you allergic to the ingredients in glucose tabs? I too am hypoglycemic, and I always carry some of those with me. Pixie Stix are another alternative if you aren't allergic.

Keep hydrated and make sure to eat enough protein. Caffeine is a trigger for me, and so is dehydration. Sometimes in the heat I am tempted to eat cold fruits, ice cream, or other lighter foods that are mostly carbs and sugar. I have to make sure I eat a significant protein source at least twice a day.

Also, take it slow. Get out of the heat when you can. Take naps if you need to. I find that when my body gets out of whack from being exhausted or hot I tend to have more hypoglycemic episodes. Hope I helped a little!
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Old 06-24-2014, 11:12 PM   #5
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This is just a guess, but I wonder if your differing 'ability' to feel when your blood sugar is low may have to do with it bring in combination with something else, for example, dehydration.
Both have some symptoms in common, so if you were dehydrated and had a somewhat low blood sugar the 'doubling up' of symptoms may make you feel symptoms much more than if you were just dehydrated or just had whatever your blood sugar is at the time.
What you are dog also makes a difference. I have issues with hypoglycemia; if I am very busy doing something, I may forget to eat and not notice the symptoms of hypoglycemia because I am so involved in what I am doing.

Are you seeing a dietician?
They could help you with food with low glycemic index. The lower the glycemic index, the less it affects blood glucose and insulin levels. That can make a big difference in how you feel and especially in avoiding rapid drops.
Eating something with a high glycemic load may make you feel better because it brings the blood sugar up, but the body reacts to the rise in blood sugar with more insulin, which lowers that blood sugar. That can lead to a roller coaster effect of the blood sugar.
Eating frequent small meals with low glycemic index foods can help even out the roller coaster peaks and valleys and keep the blood sugar more stable.

For WDW, my suggestions would be to do as much as possible in the early morning or late evening. Avoid being outside during the hottest times of the day. That will help avoid dehydration.
As the other posters mentioned, drink and eat small amounts frequently, whether you are hungry & thirsty or not. People tend to not be hungry when it is hot outside, so that is an important time too make an effort to eat regardless.
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Old 06-25-2014, 01:09 AM   #6
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No advice, but glad to see that the port issue that you were concerned about earlier will no longer be an issue.
Nope.....still a problem and still dealing with and trying to set all of that up....and had to come to terms with the fact that I most likely won't be able to swim unless I get deaccessed before the Disney portion of the trip. But it is what it is, can't change it unless my nutrition status gets better and I can go with TPN for 6 nights....highly doubtful.

I read everyone's advice and thank you. I will address the questions tomorrow when I am not on Benadryl and pain meds because I'm not thinking clear enough to concentrate on that right now.

But thank you again. This community has been so helpful every time I come for advice. So wonderful.
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Old 06-25-2014, 01:26 AM   #7
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You will have a wonderful trip! You're doing great to prepare yourself and ask questions and talk to your doctors.
My child and I have hypoglycemia. We do better overall with higher protein and lower carbs, so not quite the same as you. But, the rules for handling lows/drops should be about the same: quick dose of simple carbs to bring the sugars right up (orange juice, glucose tab) followed by something with a lower glycemic index particularly with protein and fiber to stabilize the sugars for a longer period (we carry string cheese with whole wheat crackers, trail mix, nut butter but your allergies may require something else).

Caffeine is a trigger for me and I tend to drink more caffeine on vacation--once I realized this I cut out the caffeine on trips. Also, eating a huge vacation style breakfast (waffles, sausage, lots of fruit) triggers my child to have a big drop afterward so we try to stick to something like hard boiled egg with an apple and whole wheat toast like we eat at home. Just some things to think about.
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Old 06-25-2014, 02:59 AM   #8
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You can absorb sugar straight through the membranes in your mouth, so your GI malabsorption issues shouldn't matter. My father was diabetic, and if he ever lost consciousness from low blood sugar, we could put honey or the glucose cream in his mouth and the glucose would absorb straight through the mouth. It will also absorb straight through the lining of the stomach, and doesn't need further breaking down in the intestinal tract.

He never had any issues with the heat, aside from what other people experienced. He had a late onset type I, so his pancreas was not working and he was insulin dependent. He had a port as well for cancer treatments, it was never an issue for swimming or anything, by the way. We took him to WDW when he was terminal for cancer, and he still needed minimal assistance, and we had a great trip. My dad was one of those people, however, who would never take any assistance as a matter of pride. We never knew how much he suffered with cancer, because he did everything he could to shield us from it, and he tried to live his life to the fullest, even when he was dying.
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Old 06-25-2014, 07:56 AM   #9
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You can absorb sugar straight through the membranes in your mouth, so your GI malabsorption issues shouldn't matter. My father was diabetic, and if he ever lost consciousness from low blood sugar, we could put honey or the glucose cream in his mouth and the glucose would absorb straight through the mouth. It will also absorb straight through the lining of the stomach, and doesn't need further breaking down in the intestinal tract.

He never had any issues with the heat, aside from what other people experienced. He had a late onset type I, so his pancreas was not working and he was insulin dependent. He had a port as well for cancer treatments, it was never an issue for swimming or anything, by the way. We took him to WDW when he was terminal for cancer, and he still needed minimal assistance, and we had a great trip. My dad was one of those people, however, who would never take any assistance as a matter of pride. We never knew how much he suffered with cancer, because he did everything he could to shield us from it, and he tried to live his life to the fullest, even when he was dying.
Agree - simple sugars like sugar, glucose, Glucagon or honey don't need to be digested, just absorbed and that can happen directly in the mouth.
You want to treat a hypoglycemic episode with the simplest sugar possible, not anything that has to be chewed and digested.
Everyone has fluctuations in their blood sugar. How wide the variations are and how low you go depends on what you are eating. After eating something high in sugar, the body (unless the person is diabetic) recognizes that the blood sugar level is high and raises the insulin level to handle that.
That can lead to a rebound low blood sugar as the insulin does its work. That's why treating a low blood sugar also includes eating something fairly soon that will be absorbed/digested more slowly.
A registered dietician can help you with the handling the lows correctly and balancing your intake so that you don't get the unstableness.

The OP's port is accessed from what she has written. An un accessed port would not be an issue. An accessed port is a problem because the needle that is still in it can get dislodged or out of position.
You also can't go swimming with an accessed port.
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Old 06-25-2014, 08:15 AM   #10
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They have a glucose gel that is absorbed through the mouth and doesn't have to be swallowed.
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Old 06-25-2014, 10:32 AM   #11
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in addition to what everyone else has said already, those blood sugars you're mentioning are in perfectly acceptable normal levels. If your body has been running a bit higher than normal lately it might take a while before it begins to readjust to normal levels and you'll feel low at those numbers, and you'll feel low with a drop, but you won't have an at a blood sugar of 65. And a drop of 40 points, especially over 2 hours, is basically a drop in the bucket. It's not a big drop, and it's not dangerous, at all. Your endocrinologist should have told you that. it's a perfectly normal response. If your endocrinologist is telling you otherwise, that these are dangerous drops, then you should find a new doctor.

If it's uncomfortable, the way to manage this is to eat smaller, protein and carb snacks periodically throughout the day, don't wait until you feel a drop because treating it with a quick sugar will do nothing but exacerbate the problem.

Treating a low blood sugar in someone WITH diabetes is different than treating a low blood sugar in someone without diabetes and that's due to faulty response systems in the body, which are too complex to get into here. But a person with diabetes needs to have the quick sugar, often followed with a more complex carb. Someone without diabetes does not.

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Old 06-25-2014, 11:19 AM   #12
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I have to ask, is there a difference now vs 2009 when you said your blood sugar normally was about 85? Why do you feel symptomatic now and not then?

Or is this different than when you said in March that you were hypoglycemic as well (even though you were still taking steroids?) Is this a new diagnosis in May? Like you were diagnosed with hypoglycemia both in March and in May?

Just hoping you can clear up the confusion.
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Old 06-25-2014, 12:31 PM   #13
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I am also very sensitive to large drops in my BS even if it's technically still "normal". For example, on Sunday, over 2 hours, I dropped about 40 points down to 80....still technically normal but it was too fast of a drop for me and I started having symptoms very similar to when I go low.
I have Type 1 diabetes rather than hypoglycemia, but that's how it works for me, too.

Also totally hear you about not noticing symptoms at WDW; fatigue, dehydration, excitement, overstimulation, adrenaline, can all either mimic or mask the symptoms, and there are just so many other things to think about.

Along with the extra testing you already planned on doing (I test pretty much every time I have a minute to test while I'm in the parks), I also have good results with the glucose and dextrose gels that are designed to raise BG. They're easier and lighter to carry than juice, and easier to ingest and quicker to absorb than tablets. There are a number of brands on the market, so even if one has an ingredient you can't have it may not be present in another brand.


Testing and treating in lines is a pretty common occurrence - because I do it myself I tend to notice when others are, too!

As others have mentioned, more hydration than normal is a MUST for me in the parks, whether it's an extra hot day or not. I try to make myself keep drinking even when I don't feel thirsty, and it seems to help. Carrying your water bottle on a separate strap outside your bag can be a helpful way to remind yourself.

You already know about keeping your meal schedule as regular as possible, which is tough for me to remember. (That's one reason I actually like the ADR's that annoy so many people on the DIS restaurant forum!)

I guess I've lucked out in that heat doesn't seem to affect my BG like it can for others, so I don't have anything helpful to offer there.
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Old 06-25-2014, 12:35 PM   #14
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I meant to add - my current meter is a bit awkward for testing while walking or doing other activities, but since it's linked to my insulin pump I put up with it (and my backup meter isn't better enough to bother switching). But there are ones on the market that are a lot easier to use on the fly. Depending on your current meter and finances, it may be worth investing in a backup that's easier to use in the parks.
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