Has anyone here had a 5hr glucose tolerance test or the insulin tolerance test? I am dreading having one, but my new endo (just moved; finding new docs...) wants me to have the GTT in order to assess my hypothalamic-pituitary-adrenal axis. (although why the GTT instead of the ITT, I don't know. I don't have diabetes) Everything I've read suggests it's going to be horrible if not downright dangerous for me.

Many, many years ago I was diagnosed as adrenal insufficient after an ACTH stimulation test (which attempts to stimulate the adrenal into producing cortisol). I've been on low-level cortisol replacement ever since. But there's some question about whether it was really an adrenal problem, or maybe a pituitary (or even hypothalamic) problem, or no problem (low but borderline results; but the replacement helped me feel so much better that my then-endo never questioned it, nor did I!).

Anyway, I appreciate the new endo's wanting to make sure it was a proper diagnosis (because imho it looks more like a pit or hypoth problem), BUT I question whether it's wise to have me do the GTT (or ITT). I am EXTREMELY sensitive to simple carbs/sugars, and have been on a low-carb diet for years. Eating sugar causes symptoms ranging from tachycardia, brain shutting down (much more severe than simply "tired"), and even maybe partial seizures, depending on the time of month and stress load (which lowers my seizure threshold). And then there's the maybe nontrivial fact that my episode of status epilepticus occurred after eating many, many cookies (with stress thrown in). I'm medicated now, but I still get breakthrough episodes when my threshold is low.

The hospital lab that my new endo told me to go to for the test won't administer the test because it's too risky due to my seizure history. I would have to be admitted into an ER in order to be monitored continuously during this test. Doesn't that suggest that, er, maybe it's not a good idea?

And for additional background...maybe why I'm hoping someone here might have specific experience/advice.....I do not have *epilepsy* as defined by having had an observably abnormal electrical activity, so even though a neuro has never figured out the cause of my seizures, I would call them most likely physiologic (?if those are the ones that are due to physiological abnormalities). So again, I think it's a bad idea to go "poking" at my brain with a glucose stick, in this case.

Any thoughts? On the one hand, if they administer the GTT/ITT and I do seize, then I may be one step closer to understanding my adrenal AND my brain. OTOH, dang scary way to go about doing it!!!

Thoughts? I'm waiting to hear back from New Endo about what she wants me to do cuz my followup appt with her is next week, and I haven't had the test yet (well, heck yeah, I've been putting it off. *guilty*) She's also the one who, when I told her that I felt miraculously better after I was injected with ACTH-stopped shaking and didn't feel cold-and she told me it was in my head because that didn't make sense. Believe me, if I could simply think myself better whenever I wanted, I certainly would chose that!

Thanks for thoughts!

This is an important test. Some of our PNers have had it.

Take someone with you to support you if you have side effects.

If you get really LOW that points to hypoglycemia, and perhaps insulin resistance. It might be useful to have a fasting insulin done at the beginning to show if it is elevated etc.

Take some energy bars with you, so when the test is over you can have one.

Many people have what is called "impaired glucose tolerance" and this test may show that, providing the doctor is experienced enough to evaluate it.

This is something a team of Drs. should be working on together and the person should be admitted into the hosptial for safety. I know that if a persons blood sugar gets to low it can trigger sz. but also to much sugar or carbs can trigger sz. also. My advice to you is to see an Epileptologist a neuropsycologist, and neurosurgeon who all work together as a team to find out what's going on and what's triggering your sz. These Drs. can be found at an Epilepsy Center which are often at University Hospitals. If you want to know what's causing your sz. ask the Dr. to do a wada test on you this can tell what is triggering your sz. and what has caused them. Also ask to have a DNA test done then the Dr. can find out what AED (sz. med) would help you the best with the least side effect. I wish you the best of luck and May God Bless You!

Sue

Thanks, mrsD and Sue. I appreciate your thoughts. I haven't heard back from the doc's office yet about how they would want me to go about getting the test, if they still want it (ER?!), and I went to a diff endo yesterday for a second opinion and they want a simple blood test before going the route of GTT or ITT. The thing is, I am so afraid of any docs changing my meds for the worse, which is what happened when I moved last time. Docs made tweaks in my meds and I started having seizures again (then my neuro told me to increase my lyrica to deal with the other med changes, and I started hallucinating!). *Luckily*, my job start had been delayed six months (govt funding-ugh), so it wasn't a life-affecting crisis, but it certainly wasn't fun, and I do NOT want to go there again!

Hi Friedbrain,

I'm sorry that you haven't heard back from your Dr. yet it shouldn't take them this long. You might want to give them a call. If you are having hallucinations you might be having complex partial seizures. Often when I have a complex partial seizure I will begin to see colors flashing back and forth in my eyes, get a nervous feeling in my stomach, and once in awhile hear one word repeated over and over again. I'm conscious during this time and then sometimes I blank out and start wandering around the house or work smacking my lips but I don't realize it. I will continue to talk to people and do my job or answer questions I just don't remember. If you have anyone around you ask them to watch you and see if you are smacking your lips, wandering around, or pulling at your clothes this is all signs of a complex partial seizure. If your Dr. wants to change any of your meds, or dosage he/she needs to admit you into the hospital for safety and monitoring of possible seizures. I wish you only the best of luck and May God Bless You!

Sue

Hi there,

I have heard of these tests, but my son has yet to do them. Seems like you have been lucky enough to have endro's that want to pursue your health issue. My son has only had fasting glucose test done and they come back within the normal range. That said, he has absence seizures that don't respond to meds. For years I have told the Dr.s that he needs to eat and eat often and it has to be protein/fat based food. The Modified Adkins diet has helped his seizures, but not stop them. His cortisol levels show reversed. high @ night, low in the morning, but the last endro. @ UCSF said it wasn't a problem. This has been off since he was 7 years old, now 17. How did you get them to do a ACTH test, and have you done the GTT/ITT test yet?

Thanks,
Laurie

Laurie,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene