High insulin levels

Posted by sara859 @sara859, Jun 3, 2021

Two years ago I began getting sick when I would eat any carbohydrate (simple or complex). If I did not throw up, I would fall into a deep sleep within 10 minutes of eating a simple sugar or an hour and forty-five minutes after eating a complex carb. I was 3 months pregnant at the time and my doctor thought it was related to my pregnancy. I failed my gestational diabetes first screening (falling asleep right after I drank the glucose drink) so they labeled me with gestational diabetes and I monitored my blood sugars (which were only too high or too low a few times). Through this time I learned that I could only tolerate about 25 g of complex carbs at a time or 2 g of simple sugars at a time.

After my pregnancy, this condition continued. I attempted to reintroduce carbs and the condition still existed. The bigger problem now is the extreme mood swings when I eat carbs. I experience what I would consider a diabetic rage experience--an almost out-of-body sense of uncontrolled anger (also very emotional, crying, etc). I also get light-headed and feel dizzy, even when I consume sugar alcohols.

I am 5'2" and weigh 118 lbs; I am also active and exercise daily. There is no family history of endocrine disorders.

Here are my test results:
*Libre: showed low blood sugar 25% of the time (below 55 at one point)
*Ate high carb meal, tested two hours later showed high levels of insulin (79 mcIU/mL), high c-peptide (13.7 ng/mL).
*CT scan showed an adrenal tumor
*24-hour urine test ruled out pheochromocytoma
*72-hour fasting test: blood sugar dropped below 55 within 42 hours. Tests showed low levels of insulin and c-peptide, in accordance with fasting. Tests also indicated ketosis, in accordance with fasting.
*My blood sugar does not drop after eating meals

My doctor has said that I can try diazoxide to slow the insulin release, however this does not let me know the cause of the problem. Could this just be my body's response to insulin resistance? When I experience these negative symptoms, my blood sugar is not high--I have not had high blood sugar since my pregnancy and then it was only a couple times.

If anyone has experience with similar symptoms or ideas, I would love to hear ideas! Thank you!

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Hi @sara859 and welcome to Mayo Clinic Connect. While the people on Connect are not medical professionals, there are several people on here that have had similar issues when it comes to insulin.

I'd like to introduce you to @adamek3638, @marjou, @easygoingone, and @dorisena and to invite them to join the conversation.

Here is an article you might be interested in:
https://drcederquist.com/insulin-resistance/symptoms-of-insulin-resistance-tired-after-lunch
Have you had any other tests performed other than the glucose test?

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This is way beyond and experiences I have had over the years with low blood sugar and high blood sugar. I was nauseated and very sick at times holding food down with my third pregnancy but gained too much weight because I ate every two hours. I knew nothing about insulin and blood sugar at the time. Today, I can't understand the problems involved here, let alone offer any suggestions. I eat a low carb diet and am as active as possible given two knee replacements, back surgery, and more arthritis pain. I am getting another thyroid test as it was removed years ago and I am not feeling enough energy to get daily chores accomplished. Sorry I can't add any ideas. Dorisena

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@amandaa

Hi @sara859 and welcome to Mayo Clinic Connect. While the people on Connect are not medical professionals, there are several people on here that have had similar issues when it comes to insulin.

I'd like to introduce you to @adamek3638, @marjou, @easygoingone, and @dorisena and to invite them to join the conversation.

Here is an article you might be interested in:
https://drcederquist.com/insulin-resistance/symptoms-of-insulin-resistance-tired-after-lunch
Have you had any other tests performed other than the glucose test?

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Thank you! I have had multiple tests done (blood work, urine, CT scan) and tried to describe them in my post.

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What did the doctor say about the adrenal tumor? I know nothing about the subject, but I would explore that with a specialist. Some of your report doesn't add up to me. Whatever you do, just make sure you don't have low blood sugar drops because that is dangerous. I ate six times a day to cure my low blood sugar, exercised, and reduced the stress in my life. I had no advice from my doctor at the time.
I ate lots of vegetables because I have always had a huge garden. I had no idea I was at the beginning of becoming diabetic and I baked too much desserts to please my large family. I was terribly surprised years later to have high blood sugar, but it made sense eventually.
Losing weight was imperative for my improvement and I am presently under good control but still could lose more weight. Dorisena

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@dorisena

What did the doctor say about the adrenal tumor? I know nothing about the subject, but I would explore that with a specialist. Some of your report doesn't add up to me. Whatever you do, just make sure you don't have low blood sugar drops because that is dangerous. I ate six times a day to cure my low blood sugar, exercised, and reduced the stress in my life. I had no advice from my doctor at the time.
I ate lots of vegetables because I have always had a huge garden. I had no idea I was at the beginning of becoming diabetic and I baked too much desserts to please my large family. I was terribly surprised years later to have high blood sugar, but it made sense eventually.
Losing weight was imperative for my improvement and I am presently under good control but still could lose more weight. Dorisena

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Dorisena, I agree, it doesn't add up, which is why this is so frustrating.
The 24-hour urine test was to see if it was an active tumor, and results indicate that it is not. So they will monitor it for 3 years (my endocrinologist said 20% of the population has this type of benign tumor and don't even know it).

I also have a huge garden and we have our own eggs and raise most of our own meat, so my family's diet is very low in processed foods. With the extreme sugar limitations I have, I cannot even eat most vegetables, only the lowest carb ones (lettuce, cabbage, green peppers, etc). Once I got sick because I had eaten too much onion that I had stir fried! It's very limiting.

I am a healthy weight and am very active. If it was insulin resistance, I have no idea what would have triggered it and I would think that it would reverse itself with a low carb diet, but that has not happened over the past 2 years.

I hope you continue to stay healthy and see further progress!

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Have you considered going to a clinic medical center where they test for everything under the sun? I could go to Cleveland Clinic if I get someone to drive me there. There are close places to stay while being treated. They also have a blood test center in my city nearby where they can test before going to Cleveland. My late husband was tested there for prostate cancer. Right now I am having another thyroid test because i suspect my medicine is not enough since I had my thyroid removed due to tumors a number of years ago. I am lacking energy to do my daily work to care for myself and I can't walk very far without breathing struggles. I have new arthritis pain after having two knee replacements and five vertebrae fused with a metal cage to hold it. My shoulders are painful and I am refusing surgery at age 85. I managed to pull weeds for a couple of hours with resting periods last night and slept a little better from exhaustion. I am not accepting that I must sit in a chair and knit at my age. I am trying to not have to give up gardening after 65 years of producing wonderful vegetables.
I think we need to find the right doctor who has better insights into individual problems. We are all different in many ways. Dorisena

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@dorisena

Have you considered going to a clinic medical center where they test for everything under the sun? I could go to Cleveland Clinic if I get someone to drive me there. There are close places to stay while being treated. They also have a blood test center in my city nearby where they can test before going to Cleveland. My late husband was tested there for prostate cancer. Right now I am having another thyroid test because i suspect my medicine is not enough since I had my thyroid removed due to tumors a number of years ago. I am lacking energy to do my daily work to care for myself and I can't walk very far without breathing struggles. I have new arthritis pain after having two knee replacements and five vertebrae fused with a metal cage to hold it. My shoulders are painful and I am refusing surgery at age 85. I managed to pull weeds for a couple of hours with resting periods last night and slept a little better from exhaustion. I am not accepting that I must sit in a chair and knit at my age. I am trying to not have to give up gardening after 65 years of producing wonderful vegetables.
I think we need to find the right doctor who has better insights into individual problems. We are all different in many ways. Dorisena

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My doctor has suggested further testing I can do, but nothing really seems to fit my symptoms. I do have an appointment set up with a different endocrinologist for a 2nd opinion, but that's not until July.

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@sara859

My doctor has suggested further testing I can do, but nothing really seems to fit my symptoms. I do have an appointment set up with a different endocrinologist for a 2nd opinion, but that's not until July.

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I read a lot when I can't work outside. I will keep reading. I am seeing my doctor soon to complain again. I suspect that at my age they blame everything on diabetes and old age. I finally told him how successful I am with my diet and I plan to go off the Metformin now. If I don't have the pill for a crutch, i will not eat too many carbs. Actually I am eating more carbs this year but not every day. I think my kidney is part of the problem, and that is common. Dorisena

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@sara859 - Hi! You will need an experienced endocrinologist- such as at a major university, where they see a large volume of patients.
Your body seems to overdo it when releasing insulin after a carb meal. High insulin will cause the glucose drop.
I’m aware of one condition that could do this. There could be a tiny, benign growth in the pancreas that produces insulin in excess. Often they are not seen on CT. It’s called insulinoma- it is NOT a cancer.
I hope you get some more testing soon so you can get treated.

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@astaingegerdm

@sara859 - Hi! You will need an experienced endocrinologist- such as at a major university, where they see a large volume of patients.
Your body seems to overdo it when releasing insulin after a carb meal. High insulin will cause the glucose drop.
I’m aware of one condition that could do this. There could be a tiny, benign growth in the pancreas that produces insulin in excess. Often they are not seen on CT. It’s called insulinoma- it is NOT a cancer.
I hope you get some more testing soon so you can get treated.

Jump to this post

The 72-hour fasting test results ruled out insulinoma, which is what my endocrinologist had thought it was. My 2nd opinion appointment is at a large university medical center, so I'm looking forward to that!

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