Value in Using Blood Glucose Monitors?

[bananafish]

Hello -

I was wondering if people with FM or HFI are able to gain any useful information by measuring their blood glucose (by using those at-home, pin-prick glucose monitors usually used for diabetics).

For HFI - do these monitors show a drop in your blood glucose after you ingest any foods containing fructose/sucrose/sorbitol? Is the drop dose dependent? And how delayed is the effect?

For FM - do these monitors show any consistent effect on your blood glucose after ingesting any foods containing fructose/sucrose/sorbitol? Is there a rise or a drop? And is it dose dependent? And how delayed is the effect?

Thank you in advance to anyone who can answer!

[colormist]

I do not do a regular test of my blood glucose, however, the few times I have seen a doctor where I felt like my blood sugars were low (starting to shake and feel weak) they said my levels were still in the normal range (in the low 70's)--low-normal, but normal. I'm not sure how delayed the effect is. I would guesstimate (depending on the amount of sugars and what was ate with the sugar) that hypoglycemia would kick in around the 2-4 hour mark.

I don't know as much about FM, but I wouldn't think FM has issues with blood sugar like HFI does.

[antonia]

FM is not a metabolic disorder but a gut disorder and, so, by itself should not cause clinically low blood sugars. With FM you are malabsorbing fructose but you should be getting enough other sugars in your diet and metabolizing them fine. HFI is a metabolic disorder, so while you absorb sugars fine your liver cannot process them normally. The liver "clogs up" which causes hypoglycemia. My explanation in laymen's terms anyway.

I've found with my daughter that low blood sugar can be difficult to catch. The numbers don't always reflect her symptoms. We've had experiences where she wakes up unwell and reads very low but by the time we get her to the hospital it has gone up 10 to 15 points even though she's consumed no sugar, no food/no drink other than water, to bring it back up. And she's still very symptomatic. So who knows what's going on inside the body and how it's working to bring blood sugar back up without consuming anything.

It has been helpful to take her blood sugar at regular intervals: in the morning before getting up, before bed, before meals and after meals to see what her range is when she's well. By doing this I kind of have an idea how low it needs to get before she starts to show symptoms. I think morning blood sugars are easiest to "catch" in that there is no food or activity yet to cause quick changes within the body. She usually wakes up with blood sugars in the high 60's to mid 70's. If she wakes up in the low 60's she will start to show symptoms (nausea, weakness, pale). 40's and low 50's she will wake up vomiting. Off to the hospital we go.

[antonia]

Ketone production usually goes hand in hand with hypoglycemia so you could also test for ketone production. I don't know much about it but know you can find supplies for testing in the diabetic section of the drug store. I believe diabetics test for ketones using urine test strips. Not sure if there's a way to test blood for ketones over the counter.

If you are not producing ketones when hypoglycemic that's another piece of important information you can share with your doctors.

[bananafish]

Thanks so much Antonia and Colormist. This board is so amazingly helpful. I'm starting to feel very confident that I do not have HFI, based on everything I've read here about what people's hypoglycemic responses are like and what kinds of foods they can tolerate. This has been far more informative than talking to a doctor or reading papers.

[ENSUING TEXT DELETED BY BANANAFISH]

[colormist]

Banana,
If you're going to do the fructose challenge, it is much, much, much safer to do it in a controlled setting where there are doctors and nurses around to tend to you if you go into a coma. It is not advised to do this at home, by yourself, alone. This is extremely dangerous for an HFIer to take the test at a hospital--yet alone at home without medical professionals around. That is why I always encourage individuals to rule out HFI before proceeding with something like the fructose challenge. Please know that what you are doing is extremely ill advised.

[colormist]

I'm still very worried about you, but I'm glad you will have someone there to call the EMTs/drive you to the ER if something goes horribly wrong.

I was also very worried about someone coming along, seeing that you were doing this test, and deciding it was a good idea to do it themselves. I know that you don't have the typical symptoms and are less likely to have HFI than you are to have FM.

I do hope you get answers, but still know that I still wish your doctor was a bit more cooperative with helping you find your diagnosis.

[bananafish]

OK you are right - I feel comfortable about it for myself because of my particular symptoms but I wouldn't want to influence someone else. Is there a way to delete my post?

[colormist]

I'm not sure if you can delete it, but you can edit it to put a disclaimer or even delete what you wrote.

EDIT: I just saw that there is a delete option under the cog by each post, but it might not be an available setting for every user.

[bananafish]

Ok I don't think I have the option to delete a whole topic so I just deleted the relevant sections/posts.

[antonia]

Bananafish, I agree with Colormist, please be careful. HFI is the only condition I know of that involves an aversion to sweets. I hope someone will correct me if I'm wrong about that, but since you've exhibited that trait since infancy, that's enough in my opinion to proceed with extreme caution. At least monitor your blood sugar for a while before trying a fructose test and make sure it's stable. Hypoglycemia can present in many different ways for different people.

[bananafish]

Thanks. I was feeling super confident for a few days that I didn't have HFI and then I had a few crummy days, and also I remembered a few weird food incidents from the past, and now I feel less confident. I'll ask my primary care doctor if he knows where I can get a challenge test done. I've looked on the websites of hospitals and emailed a few doctors and I really have no idea where you go for a test like this. All the papers I've read are from doctors in other countries. Looks like I would have to eliminate fructose from my diet for two weeks before doing the fructose tolerance test, so it would be a good time to do an elimination diet. I tried just having rice and sardines but I didn't feel very good on that. But the rice was cooked with spinach and schmaltz and I think the schmaltz was cooked with onions, so it wasn't exactly a strict trial.
But thanks for the concern, I'm glad you guys are looking out for me.