Hi Everyone, I am just wondering if all you poor souls suffering from hypoglycemia have been tested for Insulinoma? If not, you really should consider asking your doctor if you can be tested. It involves a supervised 72 hour fast, during which your blood sugar levels are constantly monitored. Don't be too alarmed at the 72 hours - I cried like a baby when they told me about this, sure I would not make 3 hours without a hypo.
In fact, I made 19 hours before I hypo'd. Most people do not need to go the 72 hours or even close. Your glucose, insulin and C Peptide levels are taken once you go below
50. Then glucose is given and test is over. A person with normal blood sugar control will not hypo during the 72 hours, someone with insulinoma will. This test will be combined with a CT scan and an ultrasound, to see if a tumor can be detected on the pancreas. Don't panic at the tumor word - 90% of insulinomas are benign.

I have just been through these tests here in London, and they found an enlargement at the head of my pancreas. I will know the results of all the tests next Friday. I have been suffering with hypoglycemia for years, but this is the first time a doctor has taken me seriously and sent me for proper testing.

I have read that insulinomas are rare, but could it be that people presenting with hypoglycemia are not being taken seriously, and/or doctors are not aware of the tests
they should be doing??
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First Helper Wimbledonlady
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replied September 3rd, 2009
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No, they are QUITE rare, but they do happen. I believe a quick cat scan of the abdomen can quickly reveal any enlargements before doing this test. People that have these, however, are most importantly able to eat anything but the symptoms tend to never really go away. They won't have reactions to sugar in the sense that a reactive hypoglycemic would and they can eat it.
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replied July 20th, 2012
I know this is old, but I would like to chime in.

"A person with normal blood sugar control will not hypo during the 72 hours, someone with insulinoma will."

First part of your sentence is correct, however while it is unlikely it is entirely possible for someone with an Insulinoma (or more than one) to pass the 72-hour supervised fast and which is why it is not the sole test performed. Similar to how some Insulinoma cannot be seen on image studies (the majority of them being very tiny, between 1-2cm), and even some not being present in the Pancreas itself (liver metastases, almost always in the case of malignancy).

I have read that insulinomas are rare, but could it be that people presenting with hypoglycemia are not being taken seriously, and/or doctors are not aware of the tests
they should be doing?

Yes, Insulinoma is a one in a million condition. Out of the presently 7 Billion people in the world that means roughly only 7,000 persons actually have one or more of them (statistically), instead of another condition or disease process resulting in their Hyperinsulinemia and/or Hypoglycemia. However, they are extremely difficult to diagnose and most general practitioners are unaware of the chief differences between the process of Diabetes and Hyperinsulinemia (which are for the most part, polar opposites, but with similar pathways). Most of them do not even order the proper blood tests for this, but rather tests like C-Peptide, Hemoglobin A1C and blood-glucose levels alone, without a true blood-insulin level (and they may even also order a oGTT or glucose tolerance test which is, again, for diabetics and would have almost no benefit to persons who do not have Diabetes).

Most people are diagnosed incorrectly with Metabolic Syndrome and/or Insulin Resistance for years or get no diagnosis at all before their Insulinoma is discovered and treated. This is because over time the symptoms will progress and worsen and become more erratic in frequency as these slow-growing tumors get slightly larger and release even more Insulin over the years (some of these Insulinoma are leaky, and therefore can even further mimic conditions such as Metabolic Syndrome and Insulin Resistance with chronically elevated or high blood-insulin level, in addition to random spikes even higher than their normal for them- Insulin level). Further, the only reason Insulinoma and other causes for Hyperinsulinemia and Hypoglycemia are investigated further, is because of those conditions becoming unstable and erratic (high-mild to severe, rather than low-mild or Responsive-Hypoglycemia).

The hallmark of this condition is Hyperinsulinemia with hyperinsulinemic Hypoglycemia. However, again, it is entirely possible for Hypoglycemia to be either asymptomatic or not present at all in some persons (in other words, Insulinoma can still be present despite normal or normal-high blood glucose level with only intermittent or no Hypoglycemia at all).

The major indicator of Insulinoma is always elevated or high blood-Insulin, even before factoring anything else, including Hypoglycemia.

And so, I would personally push for an actual and true blood-insulin level (fasting) before anything else, if Hyperinsulinemia and its Hypoglycemic attack (not the same as diabetic, but is rather from ORGANIC insulin shock) is suspected.


I am Hyperinsulinemic and I was (I strongly suspect) misdiagnosed with Metabolic Syndrome and Insulin Resistance at the age of sixteen years old, with symptoms beginning at twelve years old. As of this month, my condition has become unstable and erratic:

On Wednesday I began to notice very slight symptoms of Hypoglycemia (nothing new for me), little trembles and spasms in my extremities, then some numbness and tingling. I figured they would go away on their own like normal so I did not think much about it and went about my day as normal. I present with a total lack of hunger (no physical hunger) for most of the day, but becoming ravenously hungry at night.

Anyway, later that night, it progressed into mild hypoglycemia with the very strong hunger pangs, so I made myself a tuna sandwich. Half way through, I didnt want to eat anymore Id lost my appetite and became nauseated. So I sat there and just watched some TV. While sitting there, however, I noticed everything becoming more clear and vibrant looking (I cannot tell if my vision was blurred or not, I have strabismus and my eyes are different prescriptions). Then all of a sudden, a sort of wave or rush originating in my stomach (I am certain it was my Pancreas) and which I became hyper-aware of (as in I could actually FEEL it), which then spread over to the area of my liver like when novocain is starting to wear off, thats how it felt, and then nothing at all in these areas. Completely numb. After this, the sensation spread everywhere AND THEN I felt gradually more and more high (like Medical grade Cannabis almost exactly like that, but also not at the same time I cannot fully even describe it). I do not remember the entire ordeal, or my memory was too affected (I do remember at that stage minutes felt like seconds to me). My mental status and situational awareness went right out of the window not too long after that. I began to actually hallucinate that I was literally in outer space, bodiless and watching the stars and planets.

It took this entire attack took hours to finally start regressing on its own. I got up eventually and went to the bathroom, while I was doing that I noticed something very peculiar about my eyes in the mirror, even in the dim light (the light reflecting oddly off of them). So I flipped the light on and looked. My pupils were GIGANTIC (dilated)! It was at this point that classic panic set in and I went to go wake up my parents to let them know something was wrong.

I could not think of what to do (brain fog was still in effect), and I kept getting more and more anxious as time wore on, not knowing if this would get severe or not and if I should bother them over this. Just sitting here in front of my computer staring into space (not hallucinating anymore though). I noticed I could feel my heart beating everywhere, and I am on Beta Blockers (Propanalolol) so I took two of them for that and in the end, I did in fact wake up my mom at 3AM. She gave me a banana, and it took a further hour for the intensity of the symptoms to decrease.
After that, a wave of total fatigue washed over me and I wound up sleeping from late 4AM to late 4PM.

I was advised by a nurse after waking up and calling my insurance that I needed to be seen THAT DAY and so I went to the Urgent Care. And remember what I said about the glucose? Well, mine was 104 by the time they pricked my finger. But there is no doubt my body was in shock, AST and Cholesterol spike (both within normal range just 12 days prior to these tests they did that night) prove it was a massive influx of Insulin didnt even need a blood-insulin level to prove it.

So I am going to see an Endocrinologist (one which completed a fellowship in Bethesda, Maryland at the Hypoglycemia clinic there) on the 30th of this month to rule out Insulinoma and/or other ORGANIC cause of my Hyperinsulinemia (something my diagnosing Endocrinologist in 2006 neglected to do).


Interesting to discuss, though slightly off-topic, I am already 1% of the entire worlds population (70,000,000) due to my Intracranial Developmental Venous Anomaly (a tiny vascular tumor in my Circle of Willis, arterial to venous drainage) also diagnosed in 2006, through a MRI for my headaches and migraines. When one of them is found, more or different lesions and/or tumors are also found.

My odds of having one or more Insulinoma (or perhaps other ORGANIC cause of my Hyperinsulinemia) due to all of these factors is therefore extremely likely. The other indication that I am wrongly diagnosed with MSX/IR is the fact that I had only just radically changed my 'lifestyle' (adopting the #1 recommended dietary regime called the Mediterranean 'diet' for MSX/IR) in mid-May of this year to entirely cut out 'simple' carbohydrates and which, according to the literature, is devastating with Insulinoma (whereas the opposite is true with MSX/IR).
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Users who thank Mortiferon for this post: ckel 

replied June 1st, 2014
mortiferon--i just read your post with much interest and wish to know how you are doing and what the result of your 2012 (and subsequent) diagnostic investigations have shown. I hope you're OK and have found a way of managing or….curing? your very erratic irregular 2012 symptoms. I was reading these posts on this thread having done a search for 'insulinoma' because i need to find out why i'm having hypoglycemia with irregular erratic symptoms since late January. The symptoms i have had include extremely low blood sugar testing, i had a fasting lab test of 32mg/dL, and, provoked by the frightening symptoms i had before and after (but not during) the time of that blood test, got a home test meter, and the results i get on that are very low unless i eat all day and during the night. I have tested morning and night and my 30 day average has been around 55mg/dL. Early in the morning i get results in the 20s and 30s Once in a while, if i am eating a lot and not skipping, i get my first morning test in the 40s and i am happy that it's so "high," knowing that the 40s is really pathologically low.

Anyway, about the weird and frightening symptoms, first was in late January, i got up in the morning and fell. I got up to keep going (to the bathroom) and fell again. So i started being more careful while walking. I found that i had very impaired coordination, fine and large motor impairment. I couldn't type. I wanted to make breakfast, starting by heating a little water to pour on some flakes to make instant oatmeal--but i couldn't get the water to go into the measuring cup, it was too hard to aim. Later i came back and tried again and got the water in and heated it and made the oatmeal, and started eating it, sitting in my reclining chair with my laptop, and soon, i realized my functioning was coming back. i was reading something but i realized i would be able to type if i wanted, and i could. But i felt kind of bleary and wiped out the rest of the day. Sort of weak. Googling, i learned that the incoordination i had is called ataxia.

The next time it happened was a few days after the really low 32mg/dL glucose test. It was much worse than the first time. It was in the morning and i woke up to seeing myself falling out of my bed to the floor, and i couldn't use my arms to break my fall. I was sitting next to my bed and i crawled toward the door, which was closed because my dog snores really loud so i keep him outside. i opened the door and called him but i couldn't enunciate his name very well. I remembered the other time, i knew this was ataxia again, but worse. i thought maybe drinking water could help so i crawled back to my night table by my bed and got the plastic bottle of arrowhead water and opened it and went to drink the water, but i squirted it onto my chest. I tried harder and got it into my mouth but it was hard and i missed again but did better. i also felt that my nightgown was damp and apparently i peed on myself though i had no memory of it. No odor, maybe it was sweat but i just thought it was pee. i drug myself to the kitchen, i couldn't crawl, i didn't' have enough directional control and didn't want to crash my body into the wall. I got a piece of whole grain rye bread from the lowest shelf in the refrigerator, sat on the floor and took a bite. it was dry. i chewed. I felt the juices going down my throat, and very soon, i felt the clearing up of the symptoms--i said to myself, "I can walk." And i got up and walked to my reclining chair and finished eating the piece of bread and then made breakfast. And i felt pretty normal, not like the other time, i felt better than the first time after i ate something.

Then, i started googling hypoglycemia, i had just had that really low blood glucose test, my doctor was so worried he emailed me and said he wanted to know how i was feeling. I emailed back that i was feeling "normal." I didn't go into the details that normal for me is not that good, i'm always kind of groggy and low energy, i thought it was the sleep meds i had been taking for a long time. I saw the PA a couple of days later to get my sleep meds prescription and went over my recent lab results with her and she showed me the low glucose, the lab had written CRITICAL next to it. She said that because i told the doctor i felt normal, he thought it must be a lab error. i though, OK, probably a lab error. But then 4 days later i had that second ataxia episode and i knew it wasn't a lab error, the way eating the bite of bread made my coordination come back, it was some kind of hypoglycemia. But when i googled it, i couldn't find examples of people who's hypoglycemia sounded like mine.

I emailed my doctor and told him about the two episodes and that the low glucose result must have been accurate. He referred me to an endocrinologist. I started eating 5 times a day instead of 3 times, and i stopped my habit of getting up in the morning and taking my dog for a 1/2 hour walk and then doing some yoga, (neither of these things strenuous) and just taking my time about having breakfast. I started just getting up in the morning and eating.

I told the endocrinologist the above experiences. He said it "doesn't add up," and he said because i have hepatitis C (asymptomatic after getting into holistic nutrition stuff) he thought that my symptoms had more to do with the liver and i should see a liver doctor. I thought that was not helpful, though i know the liver plays an important role in glucose regulation, but my liver is not in bad shape. There's no sign of any problem with my liver function at all. The endo guy sent me for a lab test checking adrenal things and liver things and of course glucose, but for some reason not insulin or C peptide. It was about 3pm by the time i went for that blood test. I had been (of course) eating all day, and was having lunch while driving to the doctor's appointment, i had turkey, rye bread and an apple. He didn't ask me if i was fasting, apparently it didn't matter. I called for the results the following week. The woman on the phone told me the doctor said my "sugar was great." and that the result showed i should see a liver doctor. My ALT liver function test was mildly elevated, as it often is. Anyone who knows anything about diagnosing the liver would know that it was not a sign of anything that would cause the symptoms i was having. Oh well. I had them fax me the results.

Meanwhile, i kept eating--pretty much a "hypoglycemic diet" which i'd already been eating for many years--oatmeal and boiled egg and vegetable soup for breakfast, tuna, rye bread and apply for lunch, steak and green beans for dinner, plus two other small meals, goat yogurt, strawberries and almonds, another egg with some bread. That's generally my diet. But i found it hard to always eat 5 times a day, if i had appointments during the day, i kept trying for a long time. Finally, i started slacking off, i was missing the meals. i'm 65. All these years, i never had any probably skipping meals that i was aware of. Also, i missed the morning walk with my dog and yoga, and i finally started doing that again, it felt great.

Around that time, on my home meter which i had used to test my sugar since early March, and which was very low when i first started it, in the 20s first thing in the morning, low 30s, and not getting up very high, 50s or 60s, and then after i started eating more and eating breakfast as soon as i got up, it started going up, it was still low, my 30 day average never got past the mid 60s, but that was way better than when i started. But then, more recently, it started going lower, i started getting numbers in the 20s in the mornings again,and my 7 day and 14 day averages were going down, and it would even be low all morning even though i was eating, most of the time. It would be its highest after dinner, and then would go low again, in the 60s.

That is how things were when last week began. On Wednesday morning, the first thing i was aware of was, i was laying on my floor next to the foot of my bed on my back and i had no idea how i got there. i tried to get up but i couldn't. I tried and tried. i didn't know what i was going on, i didn't' exactly know where i was and it didn't matter, i just felt trapped and wanted to get up and wanted to be free. i live alone. i called out for help. i wanted to open the door, the door knob was about 2 or 3 feet away, i strained to reach for the door knob but i couldn't get it. i was so frustrated.

Then, after a little while, though it seemed really long, about 15 minutes maybe, i began to have more functioning. i could to a sitting position. I saw the water on my end table and wanted to go over there and have some. Then i saw my guitar laying on its face on the floor and i realized at some point i had knocked it over. i was glad to see it wasn't broken, i crawled over that way and put the guitar on the bed away from anywhere i might be, recognizing the danger. i was careful to drink the water and got it into my mouth but also spilled it on my chest. Again, my nightgown was wet and i feel sure that i had peed on myself, though there was no odor. I knew i had to get something to eat but the kitchen seemed impossibly far away. I crawled to the kitchen, got a piece of rye bread and sat on the floor by the fridge and ate it. The improvement wasn't as dramatic as the other time, but i could see things were improving. Soon, i knew i could get up and walk, and i did.

The rest of the day, i worried about this, what did it mean, what kind of hypoglycemia was this? I was still not on my strict religious eating program but on that day, i got back on it. i was afraid to go to sleep that night. i put protein bars all around my room, even though i don't like them, they are too sweet for me. But they were handy. I had a mild headache all day. It went away during dinner.

So that night, i went to bed with the protein bars within reach of wherever i might fall. I fell asleep. I woke up at 7am and i thought i would just get up and go make breakfast. but not in a hurry, i was just waking up. i was planning to get up. Next thing i knew, i was laying on my back on the floor next to my bed and i couldn't get up. i was very out of it. I tried to imagine what was going on. I struggled to get up but i couldn't. i could see myself in the mirror on the closet doors next to my bed. I recognized myself but i thought of two of my friends who i shared things in common with and i thought that they were the key to my getting out of the trap i was in. It was just a blurry confused fantasy of my desperate mind trying to understand what was going on. At some point, maybe after 20 minutes or so, i was able to sit up and i was improving. i had not remembered the protein bars. i could see that again, my nightgown was wet, it was wet in the area where it would be if i peed on it. i got up, took off the night gown, i was unsteady and i sat on the bed, i was trying to get to where my underwear were, and then i saw one of the protein bars i had scattered around. I ate one. i put on some clothes and took my nightgown to the laundry. I felt weak and bleary all day, fragile. i had breakfast. i googled my symptoms, trying to find an answer, trying to find out what to do. No doubt. i was scared to go to sleep that night, and i was not planning to go to sleep.

I found an ataxia discussion forum/support group and some of those people talked about what i had reported had happened to me, and someone said it sounded like i might have been unconscious or in coma. Someone else said i might have gotten a concussion, that happened to them once when they fell . i replied that my head didn't hurt and i didn't see any sign that i had bumped my head. But later that night, i discovered that a large area of the back of my head was sore. It had been banged on something, although i saw no sign of what it could've been in my room, the table looked normal, all the stuff on it, nothing was knocked over, i have wall to wall carpeting, i don't know what i hit my head on.

That night, i didn't go to sleep. instead, i stayed up continuing to research and try to find answers, and also reading Louise Hay, the woman who writes about spiritual healing, which is good if you have something with no answers, or if do have answers. Anyway, and i ate food during the night, my trusty rye bread, and i ate more in the morning when i decided to get up. No coma, no delirium, no bonking my head, no peeing on myself, that was the trade for no sleep.

I was really tired that day, i knew i couldn't do that forever. I had now been eating religiously for about 3 days, i was on my third day, eating all 5 meals and also eating food during the night. This gave me more confidence. Also, my home meter glucose tests were going up some too, a good sign, i guess. I went to see the liver doctor that afternoon (Friday), told him all the stuff that had happened. He said it was odd that the endocrinologist hadn't done testing for insulinoma. He gave me a referral for another endocrinologist, and he gave me an order for some lab tests.

So, tomorrow, i'll make an appointment with the endo guy. I need to have a fasting blood test and i am wary of that, i want to be eating at a higher rate for a longer period of time. I think apparently i was unconscious on those two days and for some hours, and possibly comatose, and possibly having seizures, and i have not felt so good since then, and have read that it sometimes takes a while to recover from those things even after glucose is normalized. Also, i know that these things can cause permanent brain damage, and i need to figure out what to do. I do not have a lot of trust in the competency of a lot of doctors due to past experiences, and that is a problem for me, to have to deal with a complicated and dangerous medical thing.

So, i'm on the trail of insulinoma as an explanation for my symptoms, and also, i want to know what other things can cause them. Does anybody know? Insulinoma is so rare. Is that the only thing that can explain the increasingly extreme and disabling symptoms i'm having? that is why i came to this forum and started reading this thread. I found your story engrossing and do hope you have found answers and solutions.
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replied June 1st, 2014
mortiferon--i just read your post with much interest and wish to know how you are doing and what the result of your 2012 (and subsequent) diagnostic investigations have shown. I hope you're OK and have found a way of managing or….curing? your very erratic irregular 2012 symptoms. I was reading these posts on this thread having done a search for 'insulinoma' because i need to find out why i'm having hypoglycemia with irregular erratic symptoms since late January. The symptoms i have had include extremely low blood sugar testing, i had a fasting lab test of 32mg/dL, and, provoked by the frightening symptoms i had before and after (but not during) the time of that blood test, got a home test meter, and the results i get on that are very low unless i eat all day and during the night. I have tested morning and night and my 30 day average has been around 55mg/dL. Early in the morning i get results in the 20s and 30s Once in a while, if i am eating a lot and not skipping, i get my first morning test in the 40s and i am happy that it's so "high," knowing that the 40s is really pathologically low.

Anyway, about the weird and frightening symptoms, first was in late January, i got up in the morning and fell. I got up to keep going (to the bathroom) and fell again. So i started being more careful while walking. I found that i had very impaired coordination, fine and large motor impairment. I couldn't type. I wanted to make breakfast, starting by heating a little water to pour on some flakes to make instant oatmeal--but i couldn't get the water to go into the measuring cup, it was too hard to aim. Later i came back and tried again and got the water in and heated it and made the oatmeal, and started eating it, sitting in my reclining chair with my laptop, and soon, i realized my functioning was coming back. i was reading something but i realized i would be able to type if i wanted, and i could. But i felt kind of bleary and wiped out the rest of the day. Sort of weak. Googling, i learned that the incoordination i had is called ataxia.

The next time it happened was a few days after the really low 32mg/dL glucose test. It was much worse than the first time. It was in the morning and i woke up to seeing myself falling out of my bed to the floor, and i couldn't use my arms to break my fall. I was sitting next to my bed and i crawled toward the door, which was closed because my dog snores really loud so i keep him outside. i opened the door and called him but i couldn't enunciate his name very well. I remembered the other time, i knew this was ataxia again, but worse. i thought maybe drinking water could help so i crawled back to my night table by my bed and got the plastic bottle of arrowhead water and opened it and went to drink the water, but i squirted it onto my chest. I tried harder and got it into my mouth but it was hard and i missed again but did better. i also felt that my nightgown was damp and apparently i peed on myself though i had no memory of it. No odor, maybe it was sweat but i just thought it was pee. i drug myself to the kitchen, i couldn't crawl, i didn't' have enough directional control and didn't want to crash my body into the wall. I got a piece of whole grain rye bread from the lowest shelf in the refrigerator, sat on the floor and took a bite. it was dry. i chewed. I felt the juices going down my throat, and very soon, i felt the clearing up of the symptoms--i said to myself, "I can walk." And i got up and walked to my reclining chair and finished eating the piece of bread and then made breakfast. And i felt pretty normal, not like the other time, i felt better than the first time after i ate something.

Then, i started googling hypoglycemia, i had just had that really low blood glucose test, my doctor was so worried he emailed me and said he wanted to know how i was feeling. I emailed back that i was feeling "normal." I didn't go into the details that normal for me is not that good, i'm always kind of groggy and low energy, i thought it was the sleep meds i had been taking for a long time. I saw the PA a couple of days later to get my sleep meds prescription and went over my recent lab results with her and she showed me the low glucose, the lab had written CRITICAL next to it. She said that because i told the doctor i felt normal, he thought it must be a lab error. i though, OK, probably a lab error. But then 4 days later i had that second ataxia episode and i knew it wasn't a lab error, the way eating the bite of bread made my coordination come back, it was some kind of hypoglycemia. But when i googled it, i couldn't find examples of people who's hypoglycemia sounded like mine.

I emailed my doctor and told him about the two episodes and that the low glucose result must have been accurate. He referred me to an endocrinologist. I started eating 5 times a day instead of 3 times, and i stopped my habit of getting up in the morning and taking my dog for a 1/2 hour walk and then doing some yoga, (neither of these things strenuous) and just taking my time about having breakfast. I started just getting up in the morning and eating.

I told the endocrinologist the above experiences. He said it "doesn't add up," and he said because i have hepatitis C (asymptomatic after getting into holistic nutrition stuff) he thought that my symptoms had more to do with the liver and i should see a liver doctor. I thought that was not helpful, though i know the liver plays an important role in glucose regulation, but my liver is not in bad shape. There's no sign of any problem with my liver function at all. The endo guy sent me for a lab test checking adrenal things and liver things and of course glucose, but for some reason not insulin or C peptide. It was about 3pm by the time i went for that blood test. I had been (of course) eating all day, and was having lunch while driving to the doctor's appointment, i had turkey, rye bread and an apple. He didn't ask me if i was fasting, apparently it didn't matter. I called for the results the following week. The woman on the phone told me the doctor said my "sugar was great." and that the result showed i should see a liver doctor. My ALT liver function test was mildly elevated, as it often is. Anyone who knows anything about diagnosing the liver would know that it was not a sign of anything that would cause the symptoms i was having. Oh well. I had them fax me the results.

Meanwhile, i kept eating--pretty much a "hypoglycemic diet" which i'd already been eating for many years--oatmeal and boiled egg and vegetable soup for breakfast, tuna, rye bread and apply for lunch, steak and green beans for dinner, plus two other small meals, goat yogurt, strawberries and almonds, another egg with some bread. That's generally my diet. But i found it hard to always eat 5 times a day, if i had appointments during the day, i kept trying for a long time. Finally, i started slacking off, i was missing the meals. i'm 65. All these years, i never had any probably skipping meals that i was aware of. Also, i missed the morning walk with my dog and yoga, and i finally started doing that again, it felt great.

Around that time, on my home meter which i had used to test my sugar since early March, and which was very low when i first started it, in the 20s first thing in the morning, low 30s, and not getting up very high, 50s or 60s, and then after i started eating more and eating breakfast as soon as i got up, it started going up, it was still low, my 30 day average never got past the mid 60s, but that was way better than when i started. But then, more recently, it started going lower, i started getting numbers in the 20s in the mornings again,and my 7 day and 14 day averages were going down, and it would even be low all morning even though i was eating, most of the time. It would be its highest after dinner, and then would go low again, in the 60s.

That is how things were when last week began. On Wednesday morning, the first thing i was aware of was, i was laying on my floor next to the foot of my bed on my back and i had no idea how i got there. i tried to get up but i couldn't. I tried and tried. i didn't know what i was going on, i didn't' exactly know where i was and it didn't matter, i just felt trapped and wanted to get up and wanted to be free. i live alone. i called out for help. i wanted to open the door, the door knob was about 2 or 3 feet away, i strained to reach for the door knob but i couldn't get it. i was so frustrated.

Then, after a little while, though it seemed really long, about 15 minutes maybe, i began to have more functioning. i could to a sitting position. I saw the water on my end table and wanted to go over there and have some. Then i saw my guitar laying on its face on the floor and i realized at some point i had knocked it over. i was glad to see it wasn't broken, i crawled over that way and put the guitar on the bed away from anywhere i might be, recognizing the danger. i was careful to drink the water and got it into my mouth but also spilled it on my chest. Again, my nightgown was wet and i feel sure that i had peed on myself, though there was no odor. I knew i had to get something to eat but the kitchen seemed impossibly far away. I crawled to the kitchen, got a piece of rye bread and sat on the floor by the fridge and ate it. The improvement wasn't as dramatic as the other time, but i could see things were improving. Soon, i knew i could get up and walk, and i did.

The rest of the day, i worried about this, what did it mean, what kind of hypoglycemia was this? I was still not on my strict religious eating program but on that day, i got back on it. i was afraid to go to sleep that night. i put protein bars all around my room, even though i don't like them, they are too sweet for me. But they were handy. I had a mild headache all day. It went away during dinner.

So that night, i went to bed with the protein bars within reach of wherever i might fall. I fell asleep. I woke up at 7am and i thought i would just get up and go make breakfast. but not in a hurry, i was just waking up. i was planning to get up. Next thing i knew, i was laying on my back on the floor next to my bed and i couldn't get up. i was very out of it. I tried to imagine what was going on. I struggled to get up but i couldn't. i could see myself in the mirror on the closet doors next to my bed. I recognized myself but i thought of two of my friends who i shared things in common with and i thought that they were the key to my getting out of the trap i was in. It was just a blurry confused fantasy of my desperate mind trying to understand what was going on. At some point, maybe after 20 minutes or so, i was able to sit up and i was improving. i had not remembered the protein bars. i could see that again, my nightgown was wet, it was wet in the area where it would be if i peed on it. i got up, took off the night gown, i was unsteady and i sat on the bed, i was trying to get to where my underwear were, and then i saw one of the protein bars i had scattered around. I ate one. i put on some clothes and took my nightgown to the laundry. I felt weak and bleary all day, fragile. i had breakfast. i googled my symptoms, trying to find an answer, trying to find out what to do. No doubt. i was scared to go to sleep that night, and i was not planning to go to sleep.

I found an ataxia discussion forum/support group and some of those people talked about what i had reported had happened to me, and someone said it sounded like i might have been unconscious or in coma. Someone else said i might have gotten a concussion, that happened to them once when they fell . i replied that my head didn't hurt and i didn't see any sign that i had bumped my head. But later that night, i discovered that a large area of the back of my head was sore. It had been banged on something, although i saw no sign of what it could've been in my room, the table looked normal, all the stuff on it, nothing was knocked over, i have wall to wall carpeting, i don't know what i hit my head on.

That night, i didn't go to sleep. instead, i stayed up continuing to research and try to find answers, and also reading Louise Hay, the woman who writes about spiritual healing, which is good if you have something with no answers, or if do have answers. Anyway, and i ate food during the night, my trusty rye bread, and i ate more in the morning when i decided to get up. No coma, no delirium, no bonking my head, no peeing on myself, that was the trade for no sleep.

I was really tired that day, i knew i couldn't do that forever. I had now been eating religiously for about 3 days, i was on my third day, eating all 5 meals and also eating food during the night. This gave me more confidence. Also, my home meter glucose tests were going up some too, a good sign, i guess. I went to see the liver doctor that afternoon (Friday), told him all the stuff that had happened. He said it was odd that the endocrinologist hadn't done testing for insulinoma. He gave me a referral for another endocrinologist, and he gave me an order for some lab tests.

So, tomorrow, i'll make an appointment with the endo guy. I need to have a fasting blood test and i am wary of that, i want to be eating at a higher rate for a longer period of time. I think apparently i was unconscious on those two days and for some hours, and possibly comatose, and possibly having seizures, and i have not felt so good since then, and have read that it sometimes takes a while to recover from those things even after glucose is normalized. Also, i know that these things can cause permanent brain damage, and i need to figure out what to do. I do not have a lot of trust in the competency of a lot of doctors due to past experiences, and that is a problem for me, to have to deal with a complicated and dangerous medical thing.

So, i'm on the trail of insulinoma as an explanation for my symptoms, and also, i want to know what other things can cause them. Does anybody know? Insulinoma is so rare. Is that the only thing that can explain the increasingly extreme and disabling symptoms i'm having? that is why i came to this forum and started reading this thread. I found your story engrossing and do hope you have found answers and solutions.
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replied June 1st, 2014
i don't know why my post was duplicated. Sorry, i know it's already long and now there are two. oh well
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replied July 12th, 2016
Proinsulinoma
dont forget there is such a thing as a pro-insulinoma. I just read a study where the patient had symptoms of reactive hypoglycemia. the 72 hour fasting test proved nothing significant. but the doctors were smart enough to test for proinsulin levels as well as insulin and c peptide. both c peptide and insulin were normal but proinsulin was off the chart. lo and behold they found the tumor and removed it and the patient has been fine since.

so remember to have them test the proinsulin level as well.
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