I've Made An Important Decision

[sue1234]

Besides POTS, I also have a severe hypoglycemia situation, as I've mentioned repeatedly on here. I did a poll a while back, and alot of you have odd blood sugar issues also. There are a few that have really bad glucose problems like me, enough to be evaluated for an insulinoma.

Me and my husband have decided to go to Mayo and have my hypoglycemia addressed by the experts. Yesterday I had rollercoasting glucose levels for about 8 hours, and I was afraid I would get to the point that eating wasn't going to control it. I have talked recently to diagnosed insulinoma patients that were initially told they had "reactive hypos" also, and years later there insulinoma was finally diagnosed.

I have done research before, and I found that:

1. Hyperinsulinemia very much affects the renin-angiotensin system. I have had low aldosterone, etc.

2. Some studies show that, as insulin is increased, the blood volume to the limb skeletal capillaries increases, sometimes by as much as 4x the normal blood volume. I have higher insulin levels than what was used in these studies! So, my thinking is, it's possible my blood volume is spending its time in my limbs due to high insulin, everyday. You know we always have pooling.

3. I was reading that hyperinsulinemia can affect the baroreflex receptors.

I've stewed around long enough wondering if my hypos could have caused it. I'm having more memory problems related to the hypos, and lower energy also. It just NEEDS to be fixed.

It's a long shot, but a very real possibility. I have sat around waiting for a local doctor to figure out my glucose problems and it's just not happening. Mayo is the "go-to" place for insulinomas. In fact, Dr. Mayo was the first to identify them back in the 1920s!

If I can get this 20-year mystery solved and taken care of, maybe my POTS will get better or go away.

I will have to wait until probably March or April to go, as we'll have to drive because I do not fly. And, we're not used to driving in the snow, so we'll wait for that to pass.

[Dizzysillyak]

Hi sue,

We both have hyperinsulinemia so I enjoy reading your thoughts .. After reading that people

who've undergone gastric bypass get this and hyperoxaluria (i have this too), I decided mine was probably

from gut damage.

I was wondering how your gf diet trial was going ? Fwiw, it can take awhile before seeing dramatic results.

Also, wanted to mention that I have a freind who's bgl drops to 40 if she eats dairy. Granted that

is just a trigger but avoiding it keeps her family from calling 911.

Let us know how this goes .. Good luck .. D

[E246]

Hi Sue,

Do you mean you have diabetes or is this a precursor of this?

I have been using almond milk which is really nice and have just read that almonds (and probably other nut) help slow down the ups and downs with insulin. Just thought that might be helpful.

I get really ill if i get hungry and often have to get up in the night to eat and know i will not get back to sleep unless i do - i don't actually want to eat in the middle of the night but i feel so sick and empty and this is after eating a good meal in the evening. I am not like this all the time but it often follows a period where i have been more ill and have not been able to eat. The gp has done a fasting test but found nothing but i did not feel symptomatic that time.

Really interested if you can tell me any more.

Thanks and best wishes.

[HopeSprings]

YES! Go for it! I think this is a good move and I wish you all the luck in the world. Keep us posted along the way please. I've been curious whatever happened with that other thing where you had the high levels of (???) (I'm very brain foggy right now)... the possible tumor thing? How can you have a positive blood test and then they don't try to find the source?

[sue1234]

Dizzy, I have been on the gluten-free for a month now, and I just feel awful! It's more like I just don't have ANY get up and go(not that I would go). It seems like I am just here. I used to shower at noon when my husband was home for lunch, as i won't shower without him home as I'm afraid of fainting in the shower. But now, I just don't have the energy to shower until late afternoon. I can't imagine why, or maybe it's just a coincidence and I have no energy from something POTS related.

Emma, I do not have diabetes. My fasting glucose is 75-85, or if I get up at 5 a.m., it sometimes is in the 50s. After a meal I usually run up to 110-120, and then I freefall from there.

Naomi, the elevated tumor marker VIP...my endo tried to get me a PET scan, but insurance denied it. He said to wait until I go back in Feb. and we'll work on another game plan. I contacted a neuroendocrinologist just a few hours from me, and after going over my records, said they wouldn't see me. I found out this n. endo has a rep for turning people away unless they fit a neatly packaged disease category. I guess I don't. Anyway, I was thinking the PET scan would look for whatever was putting out the VIP(insulinoma can), see if anything goes to the pancreas, and lastly, see what those two growths on my adrenals are doing. I am thinking if they are functioning, the PET scan might show that, but I really don't know much about the things they use in PET scans.

IF those things on my adrenals would happen to be pheos, then it gets even more complicated. Pheos tend to raise blood sugar. The pancreas puts out insulin to lower glucose and glucagon to raise glucose. The stimulation test that they used to do to test if someone had a pheo is a glucagon stimulation test. In my mind, everytime my glucose goes low, my pancreas puts out glucagon to raise the level. The glucagon in turn could cause a pre-existing pheo to then turn on and spit out adrenaline. I could be having my own little glucagon stimulation test all inside my body. IF either of those growths are small pheos, this could explain why my symptoms are getting so severe during hypos. Then the glucose goes up too far, and the insulin roller-coaster begins again. This is all based on IF I have this or that. I'm tired of not knowing, and need to know for sure.

[HopeSprings]

I see - darn insurance! If your local guy can't help, maybe Mayo can look at the whole picture.

[DoozlyGirl]

Hey Sue,

You go girl! Best Wishes!!!! Insulinoma was ruled out with me because after 2 months of home glucose testing, as well as CGMS while I was somewhat symtomatic, we never caught my sugars below 60. My Mayo trained endo felt anything below that would open up those doors for me. So your glucose of 50 should be considered! I still wonder about your adrenal adenomas.... Hmmmmm. My symptoms correlate to plummetting reactive hypoglycemia (270 to 74 in 9 minutes) , but not asbsolute hypoglycemia. My autonomic neurologist feels that the OH is causing my eratic sugars, which the endo thought my elevated insulin and eratic sugars caused the OH.

Mayo denied me as a patient so good luck getting in! Do you plan on just showing up? May take a week to get in, but read of several who have been seen with that strategy. If you are getting a referral, make sure you know what records are sent. They only want 30 pages faxed to review. They will take more by mail. My sent records were incomplete, and the department who sent them couldn't tell me what they actually sent, so keep that in mind. Meanwhile my autonomic neuro is suspecting immune system.

Please keep us posted, Lyn

[sue1234]

Lyn, I don't know what I plan on doing! I'm assuming if I can't just call up and see a certain endo, maybe my local endo will get involved. I know the endo that has done alot of hypo research, and wrote a paper on the 5% of insulinoma patients that react to glucose only and don't fasting. If I can, I'd like to see him.

Wow, those numbers are whacky, going down 200 points so quickly! Something's def up, just wasn't caught on you.

If the Mayo doctor said 60 is the cut-off, well I can reach under that any day. I've measure alot of 50s and some 40s at home. One 39 on a lab draw. I have a low A1c, also.

[Katybug]

Sue,

It's great you made that decision!! I hope are able to get some answers. Keep us updated when you know more.

Katie

[ramakentesh]

there was a woman on here a few years back that got complete remission from POTS once she went on metaformin when she found out she was actually suffering age onset diabetes mellitus with hypo swings.

Also insulin interferes with norepineprhine transporter function which may have some signficance for just straight POTS.

[DoozlyGirl]

Sue,

From my reading and experience, the best bet is to have local endo refer you to Mayo Endocrinology. Mayo will request records and then will take 2-4 weeks to review. I suggest working with your endo office so you know which records are sent, ensuring your lowest blood glucose are there along with your elevated insulin levels. Were your insulin, proinsulin and c-peptide elevated during one of the hypo serum glucose draws? If not, get the local endo to order a standing order for a hypo panel (above three insulin tests, sulfonurea and beta hydroxy something) during one of your reactive hypo attacks. If you drop to 39 and have elevated insulin at the same time, this should put you on the fast track for further work up at Mayo to evaluate for insulinoma.

Good luck and please keep us posted.

Lyn

[issie]

Unless you have really good insurance - might be better to find a local endo. Mayo is super expensive and will do allot of test that may not need to be done. It's quite the machine. But, they are very good at diagnosing - just expensive.

I hope you've figured it out and this works well for you. It's so frustrating. Are you using enough good fats in your diet? That can help with the balance of the blood sugar too. People think when they lower carbs to lower fat - some fat is absolutely necessary. Of course, you need some carbs too - or you won't have any energy - because we get energy from carbs.

One thing that has helped my blood sugar to be more stable was recommended to me by my doctor is GTF Chromium. I've been insulin resistant since I was in my 20's and I've never progressed into diabetes by using it. Of course, I do watch my carbs and sugar too. This problem is in both sides of my family.

Issie

[sue1234]

Doozly, all that makes sense. I think my local endo will work with me on getting his records there. I have copies of all my labs done over the last 10 or so years. So, I actually have alot that Mayo might want.

Issie, I do have good insurance--just hoping that they'll do what their supposed to, cover me! I'm hoping Mayo can guide me on that department. I have a highish deductible, but 100% after that. I think I can swing the deductible if I don't have to worry about any other hidden expenses.

[sue1234]

I'm booked with Mayo !!!!!!!! Mayo called an hour ago and asked me when I wanted to come in!! I was not expecting it to be so easy. I asked if I was going to see a specialist that deals with hypoglycemia--she said yes. I asked if they normally deal with my insurance provider--she said yes. She didn't say I needed to do anything else, except decide when to show up. I made it for late March, as we would drive, and trying to avoid the peak winter storm period.

[issie]

WOW. . . .good going! Hope you find your answers!

Issie

[Clairefmartin]

Excellent! Glad you got in so easily! I think I'm going to be tested by that neuro-endo you mentioned earlier in the thread, they wanted to review my 4 hour glucose and see what my insulin was doing - I have reactive hypo as well, with some major triggers...they have caught low blood sugars with me, once at my GP I stumbled in and it was in the 50's. Since then I eat high protien, low sugar (with an occassional splurge). I really feel the swings, but get kind of scared to do too much monitoring because it just freaks me out.

Anyways, I'm excited to see what Mayo says and that you got an appointment - I hope you get some answers!

Claire