has high fructose corn syrup in it... it is not the same.

Fructose (from fruit juices or sweetened with sucrose or high fructose corn syrup) do not give the same readings as glucose would. The body has to metabolize them, and that takes TIME, so it throws off the graph and the results. TIME is important to measure the spikes and dips that occur. Using another sugar will blunt both.

The glucose tolerance test is designed to be matched to all sorts of
conditions. So the variables of intake, and testing times have to be
standardized so comparisons between people can be made (and comparisons of therapies for individuals can be measured and evaluated realistically). Over the life
of the test, doctors have learned what is happening and they make diagnoses based on those results. The test itself is not a real reflection of what happens
at home or in real life. But it measures the body's response to a known given
glucose load. For example, in reactive hypoglycemia, where a huge dip occurs, there is a trend to normalization after about 2 hrs (as the body stimulates the liver to make more glucose). The same with diabetes, there is the spike, that does not come down when it should.

Since Alan does not really show a spike on that 3 hr, I'd do a 1/2 hr after the glucose instead of 1 hr. It might show alot more if you test every 30 minutes than every 60 minutes. That is if you can afford all the strips. (Perhaps you get them free from your ACCORD program, anyway?). Make sure he drinks alot of water with the glucose tabs..so they dissolve quickly. You can even grind them up and mix in the water before hand to make a liquid.

If you get that low low dip, I'd definitely get further testing. And yes, write everything down so it is clear.

Good luck.

--the Tropicana drink, I'm sure, has some other ingredients that may get in the way of getting the most accurate testing. As Mrs. D says, you want to use the proper dosage of pure glucose, as glucose does not have to go through major metabolic hoops in digestion/absorption, and you want to see how Alan's body reacts to as pure a glucose challenge as possible.

I would not expect your blood sugar measuring device to be as accurate as a lab analysis, but the exact numbers are probably not as important as the pattern. In fact, as reactive hypoglycemia can happen rather quickly, and is often missed in the space of an hour, I would recommend that you take Alan's "waking-up" blood sugar levels, give him the glucose pills, and then take his readings every HALF-hour for at least four hours (assuming he'll tolerate that many "sticks"; you'll have to alternate fingers and such).

When I get my annual testing done, I have the scrip written for five hours, every half-hour, for both glucose and insulin levels. The techs are stunned that I'll let myself be stuck that many times, but I'm used to it. I also show them where my various veins are located, so they don't have to keep using the same ones.

Another important thing--Alan has to be fairly sedentary through this. Exercise or stress can greatly affect glucose/insulin mechanisms--Mrs. D's points about muscle glycogen storage are dead on--so he can't be lifting weights through this. (Got anything interesting for him to read?)

As Mrs. D said, if this is truly reactive hypoglycemia, and Alan's liver function is good, his blood sugar may dip in the second/third hour, then normalize fairly quickly by the fourth/fifth; this is the reason for the longer tests with more frequent readings. When mine are done, what is usually caught is an initial blood sugar spike, but not too high, followed by a heightened insulin response, followed in the next 30-60 minutes by a considerable blood sugar dip (thouhg I've never gone below 60). With the blood sugar dip, though, my feedback mechanism does kick in and my insulin levels plunge, and my blood sugar levels come back up in the next hour or so, followed by a slow rise in my insulin levels back to my general (slightly elevated with insulin resistance) area. The whole cycle does generally take four/five hours. And it's been pretty consistent with me over the last several years.

When I do this test, I generally do not feel symptoms of low blood sugar. I have noticed, though, when eating big meals I do get logy--not immediately, but a couple of hours later. This is one reason I've tried to adopt a Zone-like eating regimen, with small meals fairly frequently, to smooth out the blood sugar peaks and valleys.

I still wonder if that 38 reading was an error--what were the doctors reactions to it? (I know my endocrinologist would've wanted to run the test again; was that suggested?) Many neuros are not always as well versed in the types of blood sugar fluctuations that a good endo would know (or that we would )--generally, they're just looking for very high, diabetic/impaired tolerance evidence.

I spoke to Dr. Fred and to the guy who's doing the spinal tap. They both feel it was probably a mistake (the 38 reading). Because he has no other symptoms of low-blood sugar and looks great and other than the PN, seems to be doing splendidly (going to the gym, etc), they are not concerned and the plan was to run another Glucose test and insulin level test at Alan's next visit.

Oh, he just came home from the gym at 4 p.m. (He met up with Dr. Fred there). He ate his muffin there and I tested him the moment he walked in the door, his sugar was 95. The muffin was his lunch.

He agreed tomorrow to take the glucose tablets. No tropicana drink, I know.
So if each tablet is 4 grams of carbs, I gather I give him 12 tablets with alot of water, correct? then take his sugar every 30 minutes. He'll be watching tv so no yoga, or anything. I'll mark everything down, then post.

getting exciting isn't it.?????

So he goes to the gym earlier, meets up with Dr. Fred who asks him "hows the spinal tap going, are you all set?" and Alan asks "yeah, but I'm concerned that I can't keep my legs still while lying down for 4 hours" Dr. Fred told him to take more cymbalta (I have no idea how much) but they discussed it and Alan said that's fine. So Alan should be okay after the spinal.

Dr. Fred is lifting 120 lbs of weights with a sore shoulder and Alan says "what's wrong, you look like you're in pain"? and Dr. Fred says "well, I have tendonitis in my shoulder and Alan says "AND YOU'RE LIFTING WEIGHTS??" Dr. Fred said "well, I wanted to get a workout in on my lunchhour, stupid huh?" Alan laughed. Imagine, Alan is telling his primary care guy not to lift so much weights. Mr Bodybuilder here went to his yoga class where the teacher stood on her head did a split and the whole class applauded. She then turned to the class and said "You guys are going to be doing this soon". When Alan told me that I nearly fell off the chair. I said : "Alan, you will most certainly not stand on your head,(at least not until we get every single test result back) Then I don't care if he stands on his head or stands on his you know what!!!!!

So I shall update the glucose thing tomorrow afternoon.

bye for now and thanks for all the info.

melody

One more question about the tablets. These are big tablets. you said I can grind them up. I have a mini food processor that can grind them up to a powder. Can I then mix it in a glass of water and he can drink it? .

Is this okay?

Thanks,
Mel

tablets are chewable and flavored.

He can chew them up. Or you can grind them into Kool-Aid type powder and
mix with 6oz of water.

I have had 2 long GTTs.. the second one really upset me ...I got very teary
near the end...I have hard veins to find ...and it really hurt.. but the
tech was used to it...says people cry all the time! But we women are more
reactive than the guys, as a rule, too.

Okay, then tomorror morning it's a go. I'll grind them up. He'll drink them. and we'll do the testing every 30 minutes.
Since Alan has had two previous glucose tolerance tests with no ill effects, we shall see what happens!!!

Will update.

And thanks very very much for everything.

Mel

I don't know much about glucose tolerance tests, but I do know that a good way to look for diabetes is a fasting insulin. Also, when tests are abnormal, it's a good idea to repeat them.
His glucose numbers are odd.

Does Alan get symptoms of hypoglycemia? Does he get sweaty and tired, confused, trouble thinking clearly when he hasn't eaten for a while or has had a sugar load a few hours in the past? If so, maybe these numbers relate to a problem with the mitochondria. The chemical inthe body that seems most important in this is carnitine. Carnitine carries fat into cell mitochondria to be used for energy and people get symptoms of hypoglycemia when they don't function well.

There's a whole group of disorders called mitochondrial disorders which, in their benign adult forms, cause people to get severely hypoglycemic because their body can't use fat. I don't know that this describes Alan at all, but some people get hypoglycemic because of these problems. Carnitine is generally used for all these disorders, and for people who get hypoglycemic, carnitine can make a huge difference.

Mitochondrial disorders cause neuropathy, maybe because the mitochondria are so much more important in providing energy to the ends of long axons than, say, in a small skin cell.

I know that for some reason Dr Fred has decided the next step is a lumbar puncture, and I don't totally understand this, but then again, I often don't understand what is happening with Alan. But there's a set of blood tests that might be helpful if these glucose numbers are true, and those would be called "mitochondrial" screening tests. Also, a serum carnitine level would be useful. And easier than a spinal tap.

I mean, what exactly are they looking for with a spinal tap?

Polyclonal gammopathies are generally not that important, usually just showing that the body is fighting something. A cold, sinus infection, leg infection, many things, can cause polyclonal elevations of gammaglobulins. Through years of sinus infections I had polyclonal elevation of IgM, which no one got too excited over. IgG usually means it's something that's in the past and that he's fought off. At least that's a simplified understanding. Maybe somebody else (Glenn?) can explain it better.

But fasting insulin and carnitine levels definitely are simple to do.

I guess Dr. Goldfarb is just being thorough by ordering the spinal tap and Dr. Fred said "go for it".

When we next go to see Dr. Fred, he'll order an insulin level thing.

I will ask him about the carnitine levels.

Oh, just so you know, he has no symtoms whatever of what you indicated,
You said: "Does he get sweaty and tired, confused, trouble thinking clearly when he hasn't eaten for a while or has had a sugar load a few hours in the past? "

Nothing, nada, never happened.

So either he's from jupiter, or we'll find something out soon, hopefully??

mel

He doesn't seem symptomatic of low glucose, and has lots of energy, and I see you've repeated the GTT and it was fine, so it's unlikely he has a mitochondrial problem. Though a carnitine level is simple to do.

But do find out what he is looking for with spinal tap if you can. You probably know that most of us, including those of us who've gone to mayo, did not have spinal taps to make a pn diagnosis. I'm not familiar with anything about pn which is diagnosed by spinal tap.

So I'm extra interested, given this ignorance.

Liza Jane:

The last time we went to see Dr. Goldfarb, after examining Alan, she said "the next thing for you to do is get a lumbar puncture, that will tell me a lot of things. There might be auto-immune things (can't remember exactly what she said), but she did say the word anti-bodies.

Now here's what Glentaj said when I asked him what do they look for in a spinal tap.

"Generally, what docs look for are signs of autoimmune disease, so such as protein banding that might represent a breakdown of myelin. They will also look for excess blood cells in the fluid, or any signs of infection. Normal spinal fluid is crystal clear, cloudy fluid is suspicious. (They found absolutely nothing amiss in mine, so even a normal results doesn't necessarily rule out problems.)"

AND NOW FOR THE BIG NEWS. HE'S NOT HAVING IT ON MONDAY,
The nurse just called me up and asked me why he wasn't there today for pre-testing? I said "what are you talking about?, no one told us to bring him in for any pre-testing". She said "before we give anybody a spinal tap we need blood work". So I said "well, he just had lots of blood work done, I'll be happy to fax them to you, so I did and she just called me up and said "no, we need different blood work". Then she mentioned CBC and a whole other mess of stuff that I never heard of.

So he goes Monday for pre-testing and TUESDAY at 9 a.m. for the spinal tap.
I told him he doesn't have to do this but he wants to get AS MANY ANSWERS TO WHAT IS WRONG WITH HIM AS HE CAN!!

Don't forget, his mother had Guilliam Barre Syndrome, there's lots of stuff on his side of the gene pool that, well, it needs looking into. ANd the spinal tap guy said "we can find out LOADS of stuff from spinal fluid".

Also, (and I have a hunch that this might have something to do with SOMETHING but 24 years ago Alan came down with a fever and they hospitalized him for almost 7 days. They had him in isolation and even I could not visit him. They had no clue. They put in his charts, FEVER OF UNKNOWN ORIGIN. They said "oh you might have had hepatitis, or mono, but we can't be sure".

So maybe they'll find some antibody to something in his spinal fluid. Alan said to me "Listen, we've been trying to find out answers for over 18 years. No one has given a crap about finding out why I have PN. Now I find this DR. Goldfarb who has ordered more tests than any of my other doctors put together. And I trust Dr. Fred, so if Dr. Fred agrees with Dr. Goldfarb, I'm getting this done".

So what can I do? I can't talk him out of getting a spinal tap. And this spinal tap guy is a neuro-radiologist who Dr. Goldfarb recommends.

So I guess we have to do what we have to do.

Even if we rule lots of stuff out, we might find Alan has something that can be treatable. At least I hope so.

My opinion is this PN has absolutely nothing to do with insulin resistance or diabetes or anything like that. I think he has autoimmune problems and/or stenosis in the back. IF the spinal tap comes back and all is clear, the next step (at least this is what Dr. Goldfar said "is to find you a good back specialist". Since the last back specialist wouldn't touch Alan's back and said "I can't do anything for your stenonis (and I told Dr. Goldfarb this), well, she said "don't worry, I know a good back guy".

So I believe she is just ruling out everything that can be ruled out.

Alan does have psoriasis and hundreds of little cherry angiomas all over his body. Always had them. Not that this means anything, just wanted to mention this.

Melody