High Insulin Levels (yes I'm Still Trying To Work This Out With My Dr!)

[mrsdavidson8605]

Ok so I don't even know where to start i'm so brain fogged and frustrated. Been running around in circles ever since last october when I had that blood test that showed my insulin levels were high. Started going to a different endo. She wanted to run the test her way to make sure. First test was a 3 day fast in the hospital. long story short they messed up the labs and after being stuck 29 times I had to stop the test early , and they didn't get the results they were looking for. About a month ago went in and did the test a different way. Had a breakfast prepared by the hospital then had lab drawn every 30 min for 6 hours. Went back for results today. She needs to have my blood sugar go below 55 in order to be able to make the diagnosis of an insulinoma. My insulin levels are rediculously out of control. At one point (I think an hour and a half after eating) my insulin was 409 with the high end of normal range bieng 120. Dr said this was very concerning to her but she is limited on what tests she can do to find an insulinoma bc I don't meet the criteria. She said my body must be compensating and keeping my blood sugar up .. for now at least. So she went ahead and ordered a scan of my abdomen to try and find it but said insulinomas are very hard to find. I'm so frustrated with all of this!!!! Anyone else been through this? SHe said I could try the 72 hour fast again to try and get the right numbers. Doesn't that just sound torturous? I just wonder if I should go to yet another endo who would say screw the numbers and go ahead and fight the insurance companies.. or can they even do that? geeze this is rediculous that I have to deal with this! I want to be able to rule things out and this has hung over my head for almost a year. Any insight would be very helpful. Thanks.

[arizona girl]

Hi I have high insulin too! I also thought insulinoma, but I didn't get hypoglycemic. I do have an adrenal nodule. They also did a proinsulin test that came back normal. My fasting blood insulin is always high, when they did a 2 hour glucose tolerance test with side by side draws of insulin, my glucose was normal but my insulin grossly abnormal my high was 160. That is less then yours, but still is about 16x higher then it should be. Also I'm not sure what test you had done and what the scale for it was. If you haven't had the tests I've mentioned done yet you should. Also your testosterone can be elevated and LH/FSH ratio can be off, they are usually about equal, if one is much higher then the other one, even if they are in the normal range something is off.

There is another condition that causes high insulin with out insulinoma, that is Metabolic Syndrome. In women it can manifest as Polycystic Ovarian Syndrome. Have you had your ovaries scanned for cysts yet? This syndrome can also cause infertility, obesity, High cholesterol, heart disease, hair growth were it shouldn't be on a women, skin tags, to name a few of the symptoms. It can be treated with an oral diabetes drug, called glucophage. Untreated it can become diabetes, when your pancrease can no longer produce enough insulin to take the glucose into the cell. Exercise and a low glycemic diet also are part of the treatment protocol.

Hope this is helpful! Let me know if I can help out further.

[ajw4790]

Sorry I have no words of advice, but I had been wondering how all the insulin stuff was going for you, and how the testing had gone... Wish you had better luck with the testing! How did they screw up the 72 hour test? That is crazy!

I hope that you do find out something helpful soon, and that they don't make you redo the test!

Hope others have ideas for you!

[Broken_Shell]

Wow... does your doctor want to repeat the test and see if the values of being so elevated are replicated? What was your blood sugar with an insulin that high? Were you having symptoms? Did she check your proinsulin and C peptide at the same time? When do you have to make the decision about repeating the 72 hour fast? Do you have a home glucose meter? How often do you go low and does it tend to happen at a specific time of day? Sorry about all the questions... I will keep you in my prayers. I am still battling my hypoglycemia on a daily basis, but the endocrinologist has stopped investigating for the time being. Keep hanging in there!

~ Broken_Shell

[sue1234]

I was checked with a GTT for an insulinoma. My fasting insulin was under 10, but when my blood sugar went to 180, my insulin went up to around 170(don't have my papers handy, going on memory here!). And then at three hours, my glucose dropped to 55(no symptoms yet!) and then at 3 1/2 hours I told her I had symptoms and needed sugar, so no telling how low the sugar went. But the insulin at the last draw was like in the 50s. The "natural" doctor that ordered it didn't really comment on it, so it has not been seen by an endo. Do these numbers mean anything? And what was everyone's FASTING insulin levels????

[mrsdavidson8605]

Hi I have high insulin too! I also thought insulinoma, but I didn't get hypoglycemic. I do have an adrenal nodule. They also did a proinsulin test that came back normal. My fasting blood insulin is always high, when they did a 2 hour glucose tolerance test with side by side draws of insulin, my glucose was normal but my insulin grossly abnormal my high was 160. That is less then yours, but still is about 16x higher then it should be. Also I'm not sure what test you had done and what the scale for it was. If you haven't had the tests I've mentioned done yet you should. Also your testosterone can be elevated and LH/FSH ratio can be off, they are usually about equal, if one is much higher then the other one, even if they are in the normal range something is off.

There is another condition that causes high insulin with out insulinoma, that is Metabolic Syndrome. In women it can manifest as Polycystic Ovarian Syndrome. Have you had your ovaries scanned for cysts yet? This syndrome can also cause infertility, obesity, High cholesterol, heart disease, hair growth were it shouldn't be on a women, skin tags, to name a few of the symptoms. It can be treated with an oral diabetes drug, called glucophage. Untreated it can become diabetes, when your pancrease can no longer produce enough insulin to take the glucose into the cell. Exercise and a low glycemic diet also are part of the treatment protocol.

Hope this is helpful! Let me know if I can help out further.

Hi,

I would suggest having a 72 hour fast done like I did or doing the new type of test where they just feed you a breakfast and then draw insulin and glucose every 30 min for a total of 6 hours. I'm not getting "hypoglycemic" really either but my insulin is so high it is something to be concerned about. I think the insulinoma is still possible without those symptoms..

I have had some cysts rupture on my ovaries before. Are you talking about MEtabolix Syndrome X or whatever? When they first discovered I had the high insulin they put me on Metformin which is a drug for diabetes patients but it made me feel much worse so they stopped it. That's where the concern about the insulinoma came in. I wonder if that is what is causing me to have the cysts every now and then. interesting..

Thanks for all the info.

Rachel

[mrsdavidson8605]

Sorry I have no words of advice, but I had been wondering how all the insulin stuff was going for you, and how the testing had gone... Wish you had better luck with the testing! How did they screw up the 72 hour test? That is crazy!

I hope that you do find out something helpful soon, and that they don't make you redo the test!

Hope others have ideas for you!

Thanks for the encouragement. Well I went to a smaller hospital (I live in the metro Wichita area and decided to go to a more rual hospital). And that was my first mistake. haha.. They didn't draw the labs at the right times and what they did draw wasn't enough/didn't run correctly for the correct results. Needless to say I was VERY upset! I didn't eat for 3 days, looked like a drug addict after being stuck almost 30 times, and had to recover for about 2 weeks (because of course my POTS went out of control after all that)... ugh! The second test was MUCH Better! they put one of those bigger IV lines in and just drew from it (duhh why didn't they think of that the first time??) So I only got stuck twice..

[mrsdavidson8605]

Wow... does your doctor want to repeat the test and see if the values of being so elevated are replicated? What was your blood sugar with an insulin that high? Were you having symptoms? Did she check your proinsulin and C peptide at the same time? When do you have to make the decision about repeating the 72 hour fast? Do you have a home glucose meter? How often do you go low and does it tend to happen at a specific time of day? Sorry about all the questions... I will keep you in my prayers. I am still battling my hypoglycemia on a daily basis, but the endocrinologist has stopped investigating for the time being. Keep hanging in there!

~ Broken_Shell

Broken Shell,

The test has been done theoretically 3 times now. just in different ways. So yes the values have always been high. Around the 2nd hour after eating they go up about 2 or 3 times the normal amount then crash but never go back to normal range. when the insulin was 409 my blood sugar was 94. When you ask if I was having symptoms, it's hard to answer because I have symptoms all day so probably. Yes she checked the proinsulin and C peptide and they were ok. We are going to do the scan of my abdomen wed then I have to wait FOREVER (like 4 weeks) to see her for those results. If nothing comes of that I may have to re do the 72 hour fast to get the results that the insurance needs to get a dx but she may go ahead and fight the insurance co for me to just be able to keep looking for the tumor since the levels are so eleveated. I do have a glucose meter but have stopped trying to catch it because it goes low very fast and by the time I feel really sick it's back up to normal. I've worn a continual glucose monitoring system and my levels have gone low but not low enough (I think like 50 was the lowest). Hope that answers your questions. Thanks for responding!

[mrsdavidson8605]

I was checked with a GTT for an insulinoma. My fasting insulin was under 10, but when my blood sugar went to 180, my insulin went up to around 170(don't have my papers handy, going on memory here!). And then at three hours, my glucose dropped to 55(no symptoms yet!) and then at 3 1/2 hours I told her I had symptoms and needed sugar, so no telling how low the sugar went. But the insulin at the last draw was like in the 50s. The "natural" doctor that ordered it didn't really comment on it, so it has not been seen by an endo. Do these numbers mean anything? And what was everyone's FASTING insulin levels????

Well it depends on how the insulin is measured because they all measure it differently.. I think 10 is a normal fasting range but my fasting insulin is usually normal. My dr ordered these other tests (the 72 hour fast, which I wouldn't reccomend and the test where they give you a specific breakfast loaded with protein then draw every 30 min for 6 hours). She said the GTT was not reliable because it just overloads your body with sugar and is not a good way to monitor glucose and insulin.. which makes sense. I would reccomend having the other tests done. You need to have your insulin and glucose drawn at the same time. 55 is low but criteria for dx of insulinoma is less than 55 I believe. But it also has to match with the high insulin levels to get that dx if that makes sense. So yes I would get re tested. Many drs will tell you that since your fasting insulin was fine that you don't have a problem but that is not correct. They need to look at the whole picture. I have been fighting drs on this for 10 months now!!! I think this insulin thing has become more of a question mark than the whole POTS symptoms ever were. I think it's very interesting that EVERY time I post about this on here, I get several responses of people who have had the elevated insulin but then don't get an answer from the dr as to what is going on. Keep searching and eventually we will find the answer :)