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Here I go again.. I did something this weekend I promised myself I wouldn't ever do again.. go to the ER.. it ended up being a waste of time and money (shocking, huh?).. I am soooo fed up with feeling sick! My "relapses" were shorter and now it seems like i'm not getting any remission time and the symptoms keep getting worse. UGH!!! Can't even put it into words! My muscles ache so bad all the time, and i feel like i'm so weak i shouldn't even drive. Sometimes I can't even think straight enough to know what day it is but if I even mention that to my doc I know he's going to say it's depression.. i'm s o tired of hearing that word! I know it's a real problem but it's not what i'm dealing with!!!! I am taking provigil and feel more cranky on it.. it doesn't seem to be helping so i'm just taking it when i am in despereate need to stay awake. My doctor has pretty much given up on me. I can't see dr. grubb that often obviously for several resons, including the fact that i live so far from him. I am having difficulties with my doctor communicating effectively with Dr. grubb's office... ugh! This probably doesn't even make sense i'm just rambling all my frustrations. And then there's this whole insulin thing. It's still messed up and I am not doing anything to treat it. I went to a dietician and she told me i DONT fit the mold for hyperinsulinemia (i'm tall and pretty thin). I keep losing weight so the endo i'm seeing now just had me do a 3 day gluco test to moniter glucose levels. I've had several people tell me to have a scan of my pancreas to check for an insulin secreting tumor since I don't fit the mold of someone who is at risk for type 2 diabetes. ANyone else have this done? I just don't know if I feel like putting up the fight with my docs to get the test run.... :blink:

On the positive side, did start a support group in Wichita. We are meeting again on April 11th if anyone in this region is interested..

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{{{{{{{{{{{{{{{{{{{{gentle hugs}}}}}}}}}}}}}}}}}}}}}}

Didn't sound like rambling to me sweetie. But then again, I, like so many here, know this story well. Don't beat yourself up about the ER trip ... its natural to want to try and stop the pain ... it just doesn't work well for us.

I do hope you can find a better set of local physicians who can help you coordinate your treatment with Dr. Grubb. That does seem helpful when you can get a local support system. Perhaps your new group meeting this weekend will give you some new leads. That sounds like a very positive step! Congratulations on getting this going.

As for the blood sugar ... it took me over six months to get that straightened out ... and mostly on my own. The endo I saw had nothing to say about it and offered no suggestions. But little by little (eating small meals that is!) my body did settle back into a more normal blood sugar balance.

Hang in there ... change may be right around the corner.

~EM

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Here I go again.. I did something this weekend I promised myself I wouldn't ever do again.. go to the ER.. it ended up being a waste of time and money (shocking, huh?).. I am soooo fed up with feeling sick! My "relapses" were shorter and now it seems like i'm not getting any remission time and the symptoms keep getting worse. UGH!!! Can't even put it into words! My muscles ache so bad all the time, and i feel like i'm so weak i shouldn't even drive. Sometimes I can't even think straight enough to know what day it is but if I even mention that to my doc I know he's going to say it's depression.. i'm s o tired of hearing that word! I know it's a real problem but it's not what i'm dealing with!!!! I am taking provigil and feel more cranky on it.. it doesn't seem to be helping so i'm just taking it when i am in despereate need to stay awake. My doctor has pretty much given up on me. I can't see dr. grubb that often obviously for several resons, including the fact that i live so far from him. I am having difficulties with my doctor communicating effectively with Dr. grubb's office... ugh! This probably doesn't even make sense i'm just rambling all my frustrations. And then there's this whole insulin thing. It's still messed up and I am not doing anything to treat it. I went to a dietician and she told me i DONT fit the mold for hyperinsulinemia (i'm tall and pretty thin). I keep losing weight so the endo i'm seeing now just had me do a 3 day gluco test to moniter glucose levels. I've had several people tell me to have a scan of my pancreas to check for an insulin secreting tumor since I don't fit the mold of someone who is at risk for type 2 diabetes. ANyone else have this done? I just don't know if I feel like putting up the fight with my docs to get the test run.... :(

On the positive side, did start a support group in Wichita. We are meeting again on April 11th if anyone in this region is interested..

Hi There,

I don't think I've communicated on many of your posts yet, so I send a hug and friendly hello :). Don't worry about the ER trip and the frustration... we are all feeling it, and it is just a natural response when we are scared and never feel like our bodies are even remotely stable.

Can I ask, what problems do you have with your blood sugar? I have daily episodes of sudden hypoglycemia and have had several pancreas MRIs (which did show that my pancreas is mildly enlarged, but no specific tumor or inflammation). I was also admitted to the hospital for an inpatient 36 hour fast to rule out an insulinoma, even though I don't have any hypoglycemic episodes while fasting. My hypoglycemia is not related to diet and has not responded to the numerous dietary changes that I have made throughout the past seven years. Can you tell me more about your insulin and blood sugar problems? I haven't read much about hypoglycemia on the forum, but it is a big problem of mine.

Thank you and Be As Well As Possible, Broken_Shell :)

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Goodness! It sounds like you are dealing with a lot. When I get to where you are in frustration/symptoms/lack of energy etc. I tend to just have to step back, try and get a couple days worth of decent sleep. And take everything in small baby steps. Start with the most basic necessities... Sleep. Work to eat the best that I can, drink plenty of water, and consume plenty of salt.

Then make sure to normalize (because I tend to get it out of whack) my med schedule. And I tend to stop taking my vitamins etc. So, to try and get all that back and stabilized. Then, try to get on a semi-normal sleep schedule- which does not tend to ever work for me, but it can help.

Could the Provigil be doing more harm than good? As in do you think it is making you feel worse, with rebounds etc? Maybe it is something to talk to your dr. about. How has your blood sugar been running? Has it been staying relatively controlled? If not this, is probably a point of focus. If your current drs. are of no help, you may need to look for ones that are of more help.

I hope that things start to fall together soon for ya!

:(

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Thanks to all the replies. I had this long reply about all my insulin levels, etc, but it didn't go through and got deleted! GRR.. it's hard for me to get back in a schedule and get extra sleep when I have a 22 month old to take care of, but i'm sure others have their obstacles as well.. I think the provigil isn't helping much and i may just stop it all together. Going to talk to the doc about this. Dr. Grubb acutally called me HIMSELF and left a message, but of course, I missed the call :):(

My insulin levels are very high. I did a 3 hour glucose tolerance test about 6 months ago and found that after 1 hour of drinking the sugar drink, my insulin levels were over 3 times the normal range. I just now finished a 3 day glucose monitoring system and go to the doctor tomorrow to get the results. It's sad that i'm hoping they find something. I'm just frustrated that they have known I have this insulin thing going on for so long, but they write me off because i have the POTS label and they say everything is related to it.. which is true to an extent, but POTS people can also have other medical conditions complicating the case. SO FRUSTRATING!!! It's this big question mark that we have written all over us!!!! I think the blood sugar/insulin thing is a problem for more people than we know, just from talking to others on here, but that's just one of many many theories... ugh.. just tryin to hang in there!! Thanks everyone! going to bed now since it's almost 1 am! :(

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The medical community is slowly seeing a change in "type 1 and type 2" diabetes. Most people assume that type 1 is juvenile onset diabetes and type 2 is the "reversible" with diet and exercise diabetes; the problem is that now doctors are seeing more adults getting autoimmune type 1 diabetes and kids getting type 2! So that little qualification is being thrown out the window. You could have type 1 diabetes, but of an autoimmune onset. Or it could be really crazy hypoglycemia due to POTS. I don't think any of us here "fit the mold" for anything because most of the tests are based on our autonomic responses! Keep looking and keep track of all your lab results!

Hang in there, and ramble away!

((((((((((((sugar-free hug))))))))))))))

Jennifer

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Well i went back today to the endo and she wants to put me in the hospital for 3 days fasting! I think i might die!!!!!! lol I know i won't but it's going to be tough. She said she's concerned I might have an insulin secreting tumor (like I suspected).. she actually stayed up late and researched POTS, I think she may have even read some of our blogs, bc she talked about patients blogging about blood sugar issues!!! So, see, this website is a blessing for SO MANY reasons! WE just have to keep fighting for ourselves. I just pray that there will be some sort of treatable answer in the near future! And I would suggest others get this stuff ruled out as well... thanks everyone, i'll keep you all posted when i'm out of the hospital and have had some food to eat!!! :blink::blink:

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So sorry to hear about the trouble you are having! I promise to eat twice as much while you are in the hospital for you!!! ah ha ha ha!! :blink: Just kidding. I hope all things go really well. I really hope you don't have a tumor cuasing your insulin problem, but it sounds like you have a really good doctor on your side working for you!! I hope that gives you a lot of confidence. You will be in my thoughts, and prayers! Take care.

Hugs

Suzy

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Hi KansasGirl,

You'll be in my thoughts. I did the inpatient fast to rule out insulinoma in November 2007. It was very hard, I won't lie. I didn't think I could do it, but somehow I survived. My endocrinologist was empathetic though and said that we would try 36 hours, rather than 72 hours since I had never had any hypoglycemic episodes while fasting. I only experience hypoglycemia in response to eating.

Good luck, be strong, and let us know how it goes.

~ Broken_Shell :blink:

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Hey kansas, I've been dealing with high insulin for years now. I too had Glucose TT w an Insulin TT side by side. My glucose responded perfectly, my insulin levels were grossly abnormal. This test was done after a fertility work up after a miscarriage. They found cysts all over my ovaries. So I do have Polycystic ovary syndrome PCOS. I like to call it female metabolic syndrome. Wasn't able to have children. It's been 10 years for me and I've yet to convert to diabetes.

However they did put me on glucophage and it has helped control the insulin some, but you can have digestive issues with it. You don't have to have diabetes or hypoglycemia to have high insulin. You can just be insulin resistant. If your really insulin resistant a simple fasting insulin can show it. People always confuse this test with a fasting glucose. Most docs won't order it unless you ask.

It is interesting they are putting you in the hosptial to see if you have an insulinoma. I've often wondered if I have one. I have inactive thyroid and an adrenal nodules, but they have not been able to find an insulinomia during MRI or CT.

So how does that test work? What do they do if it's positive?

As I've been researching all this dysautonomia stuff, I have come across research saying insulin can be a factor in the symptoms. Any one else know anything more?

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Broken Shell,

did they ever find anything when you did your test? My doc said they would hope to catch something within the first 24 hours but if not, then they will "admit" me (I'll be there as outpatient to start with) and continue on up to 72 hours to see if they can see anything with the levels... just wondering if your levels ever got off? Doc said that if it is an insulinoma that it doesn't need food to trigger high levels of insulin (crazy huh!) so if that is the case, she is positive they will catch it.. I have bad luck though. I had the 3 day continual glucose monitoring test on last week and it only recorded 23 hours!!!!! instead of the 72 hours.. grr but she did find a glucose of 49. she said if she would have seen a 45 she wouldn't have to put me through this test, that she would have diagnosed it and moved on! I thought that they just did the scan of the pancreas to see the insulinoma but I guess not. I guess that they have to do the blood test??... did they have to stick you each time or did they put some sort of pic line in.. that's the thing i'm worried about. My adrenaline surges enough the way it is all day, I don't need to be stuck 100 times!!!

AZ girl,

The doc said if they do find that I have the insulinoma they will do surgery to remove it (i assume they will do an MRI at that point to locate it and see the size, etc). IF not, then she has other things to rule out. Cant remember exact terms but something about other tumors possibly causing it or a rare condition that also causes high insulin. I understand that it doesn't mean diabetes, in fact I am the total opposite of hyperinsulenimia or someone who is at risk for type 2 or even type 1. I am very tall and thin so the puzzle piece just doesn't fit. That's why she's concerned about the tumor bc i keep losing weight. I agree that I've read a lot about people blooging/other posts about insulin and things of that sort. Maybe they'll find something and I can be a case study! I think the doc was thinking that herself bc she told me how she got on here and read patient's blogs about the connection but that she didn't find any medical journals or research talking about a documented connection. So we'll see. I would say that it would be worth it for you to rule it out. The problem is that it's SO hard to get any docs to run any tests, or at least that's my experience!

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Broken Shell,

did they ever find anything when you did your test? My doc said they would hope to catch something within the first 24 hours but if not, then they will "admit" me (I'll be there as outpatient to start with) and continue on up to 72 hours to see if they can see anything with the levels... just wondering if your levels ever got off? Doc said that if it is an insulinoma that it doesn't need food to trigger high levels of insulin (crazy huh!) so if that is the case, she is positive they will catch it.. I have bad luck though. I had the 3 day continual glucose monitoring test on last week and it only recorded 23 hours!!!!! instead of the 72 hours.. grr but she did find a glucose of 49. she said if she would have seen a 45 she wouldn't have to put me through this test, that she would have diagnosed it and moved on! I thought that they just did the scan of the pancreas to see the insulinoma but I guess not. I guess that they have to do the blood test??... did they have to stick you each time or did they put some sort of pic line in.. that's the thing i'm worried about. My adrenaline surges enough the way it is all day, I don't need to be stuck 100 times!!!

Hi kansasgirl8605,

I didn't have any episodes of hypoglycemia during the 36 hour inpatient fast. Unfortunately, they did stick me every hour (either finger stick, blood draw, or both) to check my glucose level. It would have been nice to have a line to draw off of, but I am used to checking my blood sugar about 12 times a day on my meter, so it wasn't too bad for me. The lowest my blood sugar has ever been was 41, and the doctor told me that they needed a value less than 40. I thought, "well, if I feel awful and am very symptomatic, shouldn't that be sufficient?" I plan to pursue my hypoglycemia problems again once I get some new symptoms that I have developed stablilized a little better. What I know is that I have an enlarged, hypertrophic pancreas, rapid gastric emptying (I have something like "dumping syndrome" even though I have never had gastric surgery), rapid and inappropriate drops in blood sugar after eating that are inconsistent and independent of what I eat, and "suspicious" insulin levels. The endocrinologists have talked a little bit about the possibility that I have something called nesidioblastosis, but I haven't had much work-up done for it. You are right though, if you have an insulinoma then your hypoglycemia should be triggered by fasting. One suggestion I have is that if you have orthostatic issues, make sure that you stay hydrated during the fast and get plenty of water even if you are not eating. I wish you luck. Please feel free to PM me if you have any other questions that I can answer for you. Keep us posted next week on how things go at the hospital!

~ Broken_Shell :)

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p.s. I am not insulin resistant bc I have had the fasting insulin test. I did the 3 hour GTT test which showed the over production of insulin then after the 3 hours it was back to normal.

I wasn't heavy either when I first got sick, dropped down to 96 pounds. I didn't gain weight until they put me on dexamethsone they thought I had a rheumatoid condition. There are a whole bunch of hyperinsulinemia/pcos skinny women out there. We are harder to diagnosis because when your thin they don't think of it. A GTT usually only looks at glucose, they have to add the insulin tt if they want to see what happens between the two of them. And they should look at the two of them because they always work together. If your insulin was out of range during any of the time slots, you have some sort of hyperinsulinemia. They are finding that something is causing the body to produce to much insulin or not be able to utilize it (resistance). An insulinoma can be one cause. I got the impression they rule it out if you don't get hypoglycemic. Though like you I think you might be able to have one (insulinoma) without being hypo. One think against the fasting insulin test (just one blood draw) is that if you are converting to diabetes it will drop down when that is happening.

I forgot to they also did a 3 day continous glucose test on me. They punched this little bug like monitor into my belly. My levels were mostly normal, except they were lower during the day and higher at night, opposite of what it should do.

I'm still learning about the syncope and pots stuff. But because I've been dealing with the pcos for about ten years I'm pretty up on the current research on high insulin. When I searched syncope and insulin. There is some research showing the insulin may be contributing to the syncope. I've always thought all my different symptoms were connected some how. The research is just starting to get there.

Somewhere along the line I realized that just because the docs don't know what to test for, or there aren't any tests yet, doesn't mean something isn't wrong. Though I've gotten tired of doing so, and wanted to give up, I've trusted myself that something was wrong, and I've found specialist that could help me figure it out. So, don't take it's normal for an answer, keep pushing to you find some one who can help you. You know yourself and you know if something isn't right. Love to hear what they find out this time.

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They did do a GTT but were specifically looking at insulin, however, they did get both insulin levels and glucose levels at a half hour, one hour, two hours, and three hours. I have already had the continuous glucose monitoring system that's what got me to this step. I don't understand it all completely, or really want to understand it all bc it drives me crazy trying to figure it all out :) I do appreciate the advice and I think it will be interesting to find out what the results are. I agree that we have to fight for ourselves. I continue to do this. It's been about 2 years now since all this started for me and sometimes I feel like i'm at day 1.

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kansasgirl8605,

This a quick link to wikipedia...you can Google for more information on nesidioblastosis.

http://en.wikipedia.org/wiki/Nesidioblastosis

~ Broken_Shell

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