Hi all-

I'm from over at the Parkinson's forum and we have been discussing glycemic issues as they relate to PD. I would like to ask you for comment based on your experience.

This started with a study which indicated that the primary medication we depend on, ldopa, has a little known effect on our blood sugar. It triggers a slow but increasingly fast rise in BS for about two hours. Then it shoots up to a peak and quickly collapses back to baseline. The levels stay within what are considered normal levels but the effect on the PD symptoms is almost incapacitating. Because the spike is transient it would not show up on normal testing.

I used a glucometer last week to test this and found it to be true, at least in my case. I am normally around the 90 to 95 range (US) and that morning started at 92 and took my meds. Over the next two hours it climbed to 107 and then over the course of thirty minutes shot up to 128. Then over the next fifteen it dropped to about 110 and thirty more found it back in the mid 90s. At least two others have reported similar experiences.

During the spike, motor symptoms were so bad that i could barely walk or type. Cognitively there was brain fog and tunnel vision. There was a heavy need to urinate.

This all faded over two hours.

This seems to be what is labelled "non-diabetic hyperglycemia" and may affect as many as 80% of PWP to one degree or another yet is barely known. Given that we are typically on a two to four hour medication cycle the condition is easily masked.

Any thoughts on this? The idea that we are on a stealth roller coaster of artificially induced hyperglycemia opens up a whole new avenue of management of PD.

Thanks - Rick Everett

Hi Rick,

All this sounds absolutely awful for you. You deal with far more than anyone should have to already without something adding to the challenges.

For what it’s worth, here’s what came into my head as I read your post. I apologize that mine is so long. I'll break it into two pieces.

First my questions:

-- What did you eat and when within this three-hour period?

-- What were the blood sugars and time frames cited in the study you read as having the potential to cause a problem?

-- Was the glucose monitor you used reliable, with fresh batteries, and checked recently for accuracy? Something as simple as batteries that have been around for a while can ping-pong blood sugar readings all over the place.

-- Does this happen every day?

My thoughts for consideration:

-- You are right, that your blood sugars are within reasonable limits, no extremes in there at all. 80-120 was historically considered a normal range, although the threshold number has been lowered recently for diabetics. Even at that, 107 is within an acceptable range.

-- imo, the difference between 92 to 107 is not dramatic, perhaps even inconsequential two hours apart, and – still opinion – 128 is far below what I think could make you feel ill, if it would at all. Undiagnosed Type II diabetics stay undiagnosed because they continue to feel well, some even with blood sugars way over the top (I’m talking the 200s). I know you’re dealing with a disorder that puts you outside of mainstream. Even at that, it’s hard for me to think that these relatively small changes could aggravate your symptoms to this degree.

-- The difference between 128 to 107 does not make me think of the words "shot up" or spike in and of itself, nor identify a drop from 128 to 110 as a collapse. The numbers are also out of context – what went on during those three hours that could have influenced the rise and fall? Stress all by itself can cause chaos.

In the case of a non-diabetic, the body responds quickly to blood sugar rises from food intake, and insulin put out by the pancreas quickly returns blood sugars to normal. So going from 128 to 110 in 15 minutes can be quite normal.

-- "Brain fog" is a symptom of low blood sugar (in the 60s and lower), which is not what you are experiencing. Muscle weakness is also a low sugar symptom. The brain and muscles are not being "fed." Tunnel vision and the need to urinate are also associated with low blood sugar. (Where in the sequence did these occur?)

-- If you are looking to changes in your blood sugar as the culprit, keep in mind that food and the type of food affects blood sugars. Protein and fat are metabolized more slowly than carbs, which means the blood sugar stays at a more even level, fewer and more gradual changes, while sugars and simple carbs cause a more rapid rise and more rapid return to normal.

-- Blood sugars can change from minute to minute, with or without PD, so a single reading as you say is of virtually no value when trying to determine if there is a problem – a routine lab test, a check done in the doc’s office, even a series of checks in single morning. In your case, you are talking about changes that occurred over a period of three hours, which is a huge amount of time. The readings could feasibly be all over the place, depending on a myriad of factors, but still be within your reasonable range.

Suggestions:

-- Check your blood sugar at the same times and the same intervals every single morning for several days in a row, preferably a week. Check it before you eat something, keep a list of what you eat and when, then make sure one of the checks is an hour after eating. That will give you a more accurate picture of what your body is doing and how it is metabolizing food.

At the same time, I would also look for some other possibilities as the cause for the terrible symptoms you are having to deal with.

-- If you haven’t done this already, can you go about your normal morning routine, eat as you normally would, check your blood sugars for the three hours as you did here, move around as in a typical morning, but delay taking your meds until the three hours are up? Do this for the entire 5-7 days that you will be testing and monitoring your blood sugars and food intake. That may give you some additional clues about cause and effect and especially if it really is the meds precipitating this.

-- It would be really helpful if you could take your blood pressure during one of these episodes, and also see if the symptoms ease if you lie down. The symptoms you describe are also signs of low blood pressure (which is often associated with morning, during the time after a person first arises).

-- Even if you do narrow this down to meds, it will likely help (and sure won't hurt) to make sure every single meal has a reasonable amount of protein, which is metabolized more slowly, and limit your intake of simple carbs. Having more frequent small meals/snacks instead of the "three squares" a day is very healthful and helpful in the blood sugar department as well.

I hope there is something of value in this pile. I’m sorry you are dealing with so much. I hope you find some answers.

TCC

Here are the notes from my journal:


9/28/06
7:30 BS = 89 ; arose, took 1 Sinemet CR, 1 Eldypryl;
8:30 coffee black
9:00 BS = 104 even though no food yet; worse than arising; brain fog; dystonia left foot; freezing
9:15 2 Requip; glass of milk
9:30 brain fog lifting
9:45 BS = 129
10:00 BS = 103 brain back, body coming quickly
10:15 BS = 88 body coming slowly
10:30 BS = 90
10:45 Ate hamburger
11:00 2 Requip
11:15 Body coming online finally
11:20 Full function!!


AS you see the first food was milk at 9:15 followed by a hamburger at10:45. The med in question is the sinemet. Note too that my numbers never go into hypo glycemia only pseudo hyper.

I am using a Bayer Contour which is supposedly self calibrating. In any casee the readings are consistent and at least two other PWP are getting similar patterns. Trying it without meds is not an option. No meds - no move.

Rick, in general, the changes in blood sugar here are negligible and normal. 129 is the only number that trips into the upper limit, but it was just 30 minutes after drinking milk, which has a fairly significant carb content (and fat if you don’t drink skim milk).

The liver automatically puts out glycogen if blood sugars dip, so it is common to have higher readings after not having eaten anything. .

Again, did the study identify specific blood sugar levels that they thought might make a influence symptoms and the range between upper and lower blood sugar numbers"

It’s significant that the symptoms begin to resolve after you have had something to eat. (Milk is a pretty substantial food.)

Also, the symptoms arrive after the Sinemet. I don’t know how long it takes to be broken down and absorbed after it’s taken, but this strikes me as about the right amount of time.

I surely wouldn’t suggest that you discontinue the med. But again, if you can change the time of your Sinemet dose until later in the morning (perhaps reverse it with the Requip), but do everything else the same – coffee, milk, breakfast, whatever – it would help determine if the Sinemet is precipitating this.

Also, unless it is contraindicated, take the S with food, preferably a protein like a hard-boiled egg, which would slow down and level out the absorption a bit. That reduces the "jolt" that can happen when taking meds on an empty stomach.

I am really inclined to believe what is happening to you is a motor side effect of the medication and is not related to blood sugar at all. But since you felt better 30 minutes after milk, and you felt even better 30 minutes after a hamburger, why not have something to eat immediately after getting up?

Two other things:

-- Your diary does not match the description and schedule of the rise and fall in your first posts.

-- I was not familiar with Eldypryl. You sent me on an info hunt and found a note that one of the side effects is "uncontrollable muscle movements or spasms of the head, face, arms, or legs." Have you been able to discount the Eldypryl as a cause?

I truly know nothing about PD except the symptoms vary from person to person. Can the symptoms you are experiencing be part of the progression of the PD?

I hope you find some answers.