Questions About Glucose

[Tia Koul]

Hello everyone! I hope you are all doing well today! I have some questions about blood sugar.....

I have hyperpots. I have been reading about some of you and other friends outside this forum with hyperpots checking their glucose levels. I became intrigued by the possible connection to diabetes, and it being a possible cause of pots. I know nothing more than that statement, (lol) so, i need some info!

I went and got an a1c home test (which can be wrong) and it showed 5.8 (prediabetes). Then I got a home glucose monitor. I have always been a sugar person. As a kid, I would hide in the bathroom until dinner was off the table, and I would return only for dessert! yes, it's a true story.. I have been sick since I was little. Not dx until my 30's of course. I also have small fiber neuro and a lot of pain.

Anyhow, I have been testing the last 3 days, and have found that my fasting glucose is also in the prediabetes/insulin resistance category. So far the readings have been from 106-112.

As I read more, I discovered this:

Conclusion: Diabetes is present in one in three patients with pheochromocytoma. In young patients with hypertension and normal body weight, the presence of diabetes is a clinical clue to the diagnosis of pheochromocytoma.

http://journals.lww.com/jhypertension/Abstract/2003/09000/Diabetes_as_a_marker_of_pheochromocytoma_in.20.aspx

So, my questions are as follows.... I only have 3 readings, but does this sound like prediabetes? Will my cardiologist who treats pots know about this? What do i ask in relation to the pots/diabetes connection? Is there strong evidence showing the connection? And about the pheo, as rare as it is, I find it interesting that the study I noted describes me, and I'm sure many of us... But I don't know that I am truly prediabetic yet. I am just guessing at this point.

Also... I had my first emg, nerve studies done in 2002. Since then, they have gotten worse. So, is it POSSIBLE that I have been prediabetic the whole time and THAT is what caused the small fiber neuropathy???? If so, then could I have had sugar issues my whole life??

And, wow would I be happy if a pheo was found, as we all would be. What a miracle that would be. But I know how rare it is. Just having symptoms doesn't mean anything, although no one has check my metanephrines. My supine norepi was around 248 (going by memory here) and standing was about 620? So, it went up, but not in the thousands.

Anyhow, I asked a lot of questions, but any guidance would be appreciated. I still don't really understand how sugar is related to pots. And if my readings are correct, what does it really mean? Also, my daytime reads are all normal so far. Just the fasting is high.

Thanks a million and talk to you all later ))

[sue1234]

I get what you mean on all this--IT'S COMPLICATED!! We could all be a "new" presentation of some problem.

I am one of those people with odd glucose issues. I have hypoglycemia, however. I have eaten sugary things my whole life, kind of like a natural gravitation to it. But, I didn't over-do it by any means. I have had "reactive hypoglycemia" for probably 20 years. It started when I was normal weight, so I don't think there was a pre-diabetes issue there. I have issues where I swing high then real low. Then, last year I gave up roughly 90% sugar and probably 60% carbs. I have lost weight and eat every two hours. No matter what I do, I seem to have that hypo episode every mid-morning.

I am having my metanephrines tested now(know results in a couple of weeks). I have been tested yearly since my POTS began 5 years ago. A pheo will cause higher blood sugar, and it sure would explain alot(!) if we all had one. I see an endo, as I seem to always have some low-lying hormonal issues going on--the excess adrenaline surge, the dropping blood sugar, etc. It is ALL being looked at once again.

I would see an endo if I were you. They would be the ones to really investigate the blood sugar with a 5-hour OGTT(make sure insulin is tested along with glucose).

We do keep having members with common sugar issues....

[Tia Koul]

Hi Sue,

Thanks! yes, I will have to find an endo now I guess. I thought I would find hypoglycemia, but no low sugars so far. Even waiting hours to eat and then checking, still normal numbers. Just the fasting is high. yes, it is confusing. So, you get checked every year for pheo as well? And is that the doc that is checking your pots annually too? That is amazing. My lest tests were done in 2006. But i am tired of running around trying to find people who know what this is. Right now, I am in NYC and there are only a couple people. One is my cardio, he is great. The other one I saw was a beast. I am leary to see anyone new especially with new issues. If these are issues. Who knows. It's all new to me. When you check your level do you see low glucose while you have symptoms? Can you actually track it at home? I can have a gtt test I guess, when I ask about it. I know to dx prediabetes/unsulin resistance they either test with a fasting glucose or a gtt. You only need one test to confirm that according to what I've read. But I guess once I bring it up they will recommend further testing. I don't have any weight issues, but I am hypertensive. And the connection to the sugar, hypertension, average weight, etc relating to pheo got me wondering. I hope I can see someone who will check the metanephrines as well. Let me know how it goes! Good luck!

[comfortzone]

I guess when you do the 24 hour urine - for cats and mets - you are clued into a pheo....as well as perhaps a CT imaging of your abdomen.

It is a bit confusing to me as well. My neuro says this: you are weird. lol (thx I knew that). My fasting last checked was about 115. My hba1c was also right at 6.0 You aren't diabetic till your fasting is higher -- like above 125 or so. It is good to get a 2 hr. gluc. tol. test. if possible. Mine gave weird answers though. I drank the sweet stuff with a 115 fasting - then 2 hours later it was again 115. Typically with problem sugars it would have been found to be above 140 at 2 hours. Oh well.

Next I learned by bx that I have small fiber neuropathy. When you have that - it can contribute to orthostatic intolerance. I guess it's vasomotor instability of some sort.

Beyond that I too am hypertensive and also get the surge in norepi with standing - making my b/p rise and heart rate rise -- Yet if I stand for too long I get the opposite - b/p gets low and I feel awful.

I do have Ehlers-Danlos Syndrome - the Hypermobile type - and with that you can have POTS and POTS-like symptomatology as well. So of the triad of sugar, neuropathy, EDS, === hard to know what came first the chicken or the egg. I do not have pheo - but all my adult life - every 10 years or so some new doc will check for it based on weird cardiac things such as palpitations, labile b/p, SVT etc.

Anyway hope you get some answers -- I see my neuro tomorrow - at least he is understanding and compassionate as can be along with being very smart. I still have a hard time believing you could feel so awful and non-functional from these things -- its so true though...maybe I have a hard time because most doctors have a hard time with it. The old, "you look so good" "patient appears well in no distress" "great range of motion, normal gait" WHA? You gotta be kiddin' me - they should live here - the walker is just an arms reach away at all times...sigh.

But on we go!

[Tia Koul]

I guess when you do the 24 hour urine - for cats and mets - you are clued into a pheo....as well as perhaps a CT imaging of your abdomen.

It is a bit confusing to me as well. My neuro says this: you are weird. lol (thx I knew that). My fasting last checked was about 115. My hba1c was also right at 6.0 You aren't diabetic till your fasting is higher -- like above 125 or so. It is good to get a 2 hr. gluc. tol. test. if possible. Mine gave weird answers though. I drank the sweet stuff with a 115 fasting - then 2 hours later it was again 115. Typically with problem sugars it would have been found to be above 140 at 2 hours. Oh well.

Next I learned by bx that I have small fiber neuropathy. When you have that - it can contribute to orthostatic intolerance. I guess it's vasomotor instability of some sort.

Beyond that I too am hypertensive and also get the surge in norepi with standing - making my b/p rise and heart rate rise -- Yet if I stand for too long I get the opposite - b/p gets low and I feel awful.

I do have Ehlers-Danlos Syndrome - the Hypermobile type - and with that you can have POTS and POTS-like symptomatology as well. So of the triad of sugar, neuropathy, EDS, === hard to know what came first the chicken or the egg. I do not have pheo - but all my adult life - every 10 years or so some new doc will check for it based on weird cardiac things such as palpitations, labile b/p, SVT etc.

Anyway hope you get some answers -- I see my neuro tomorrow - at least he is understanding and compassionate as can be along with being very smart. I still have a hard time believing you could feel so awful and non-functional from these things -- its so true though...maybe I have a hard time because most doctors have a hard time with it. The old, "you look so good" "patient appears well in no distress" "great range of motion, normal gait" WHA? You gotta be kiddin' me - they should live here - the walker is just an arms reach away at all times...sigh.

But on we go!

Hiya! Thanks for the response... so you have prediabtes too then. My gp yesterday agreed, my fasting levels have been in the 100's for 6 days now. I just started checking. So, she will check the a1c as well. My cousin, a neurosurgeon, said prediabetes cannot cause enough nerve damage to create the dysautonomia. So, I am ruling out sugar as a cause for hyperpots. But i thought it was an intereting theory. Oh well!

About pheo's, he ruled that out as well! lol. So, back to the drawing board! But, I would still ike to have the 24 hr urine to rule it out. My abd ct's have shown normal adrenals. He also said pheo's are not a good thing, and the complications afterwards are not what we want. I thought it was a simple whip out the tumor and you're cured kind of thing. Bummer.

Sorry your neuro says you are weird.. lol .. aint we all! I am glad he is supportive though! And yes, in fact, we are weird... I just want some answers!!

I thought for sure prediabetes caused the SFN. But I guess not. Yes, the chicken or the egg. It will be a long battle! But it's so important to have atleast one doc who believes you. I always find myself defending my condition thinking no one believes me, and many don't.

We'll see what she says about the sugar. And maybe further testing like the gtt. I thought it needed to be a 4 or 6 hour test to really get the right results. But most are the 2 hr variety.

I am getting fuzzy (speaking of which) and need to eat something, so I am about to start to slur! But thanks for the info. Good luck at the neuro tomorrow and I hope he doesn't find any more 'weird' stuff... although with us, they always do! yes, it's amazing how much dysfunction we have. No wonder no one believes us Of course we look fine!!! It is crazy!