Another Idiopathic Postprandial Misfit

[Marena]

I have been wondering for a long time about the different permutations, symptoms and how the body copes with the modern dietary stuff.
Options could be limited to your situation.
Where you live?
Insurance if you need it?
A GP who can refer?
If you have an endocrinologist?
And probably more.

And get here the tests required and the treatment necessary to relieve the symptoms.

My insulin levels were low in first phase response to food, but high after what is known as an overshoot of insulin, as my pancreas wakes up to the abnormal high spike after carbs etc. This is me now.
It also showed that during my first eOGTT, that because of insulin resistance, my insulin levels were high during both but the amount of good insulin was low. One of the reasons for a fatty liver.
I think that maybe the low levels of insulin continuous through the day, even when not eating could be too much in total to keep you going low. I don't believe you have insulin resistance.

And then, I could be totally wrong.

Best wishes.

Hello @Lamont D you will be probably right my problem will perhaps not be the insulin. I will see if I find a New endocrinologist who can help. The problem is that all endocrinologists have never heard from this problem. It is complicated. My GP also knows nothing.
What do you think about the HOMA index? Do you know about it? It was tested and says that I have insulin resistance. But before the test I have eaten normally. All doctors say this Index is not helpful to diagnose insulin resistance. Because my normal insulin is not higher than my glucose. So I don't know how that can be.

And @fireweed thank you also for your answer. I took Vitamin B and magnesium last year for 2 months. It doesn't changed anything. Or should I take them longer to see results?

Best wishes to both of you.

 

[Lamont D]

Hello @Lamont D you will be probably right my problem will perhaps not be the insulin. I will see if I find a New endocrinologist who can help. The problem is that all endocrinologists have never heard from this problem. It is complicated. My GP also knows nothing.
What do you think about the HOMA index? Do you know about it? It was tested and says that I have insulin resistance. But before the test I have eaten normally. All doctors say this Index is not helpful to diagnose insulin resistance. Because my normal insulin is not higher than my glucose. So I don't know how that can be.

And @fireweed thank you also for your answer. I took Vitamin B and magnesium last year for 2 months. It doesn't changed anything. Or should I take them longer to see results?

Best wishes to both of you.

Hi, again.
I would have hoped that most patients who are experiencing symptoms, have had such a test for insulin sensitivity and insulin resistance. I must have had it because of my diagnosis of first phase insulin response being weak. But until you posted it, I had no idea this was used. Figuring maths was used, is a bit novel.

And yes, find an endocrinologist that has experienced similar, either from your GP or someone on line. Who may do private but also has NHS patients. You can only ask.

My endocrinologist is in the North of the UK.

Hope you find one, Best wishes.

 

[Deleted member 596235]

I understand that AZEric hasn't posted here for some time,
but I was certainly interested in his particular condition. As
a T2 newbie, anything to do with diabetes is of course an
interest to me—as it's such a steep learning curve, particularly
as a late-diagnosis (age 78) diabetic.

And of course, like others here, I've often found—even after
only such a short time—how relatively poorly general practitioners
(GPs or MDs) are trained in the specifics of diabetes. As they're
usually the first port of call, more relevant training is necessary.
More so considering that here in Australia, an estimated 500,000
people are living with silent, undiagnosed type 2 diabetes.

 

[Thomasine]

I'm posting this for a couple reasons.

1) There are a lot more of us out there than are known, because most people don't know they have it. Hopefully someone else will gain some info.
2) There is not enough information on the Internet, or anywhere about this condition.

I am now diagnosed, but it took 15 years for anyone to have any clue at all, and TBH, I am the one who researched it AND educated my doctors.

Idiopathic Postprandial Syndrome/Adrenergic Postprandial Syndrome is in most cases misdiagnosed as Hypoglycemia. Shortly after eating any sort of carbohydrates, I'm sent into fight or flight mode, anxiety consumes me, I get confusion, disorientation, and almost feel drunk or drugged. My blood sugar never moves really.

Every lab test I've been tested fasting at 99, 95, 97, etc, but have these crazy hypos symptoms, and even have to lie down to have the blood draw because I have passed out before.

eAG = 114
HBA1C = 5.6%

Here are some of my readings:

97, 101, 102, 93, 97, 88, 86, 85, 105, 85, 102, 90, 104, 97, 83, 88, 125, 94, 85, 101, 87, 137, 95, 85, 91, 81, 83, 82, 78, 88, 99, 89, 105, 89, 88, 86, 94, 82, 81, 81, 83, 92, 91

Those are fasting, after meal, some 30 min after, some an hour, some two hours. My blood sugar never really moves much at all. I've never gone under 78, yet I get the feelings and panic of being extremely low, and like I need to call 911.

I've been on the Keto diet for the last 3 months, and prior to that eating low carb. My endocrinologist gave me Acarbose to take if I wanted to eat carby food, but I have no interest in that at this time.

I have no idea how it happened, or what else is going on in my body, but this is where I am at now. My blood pressure seems to be lower than a normal person, and I am aware that norepinepherine is involved somehow. I still don't understand what happens chemically in my body, that causes me to go into fight or flight, so I welcome any conversations with anyone else who has this, or is curious about it.

Thanks, and happy to support anyone in any way here.

Eric

Hi,
Thanks for your post Eric. I'm sorry you have IPPS but in a way it's a relief to know that there is someone else out there with this condition.
In my case it took 45 years before I finally got diagnosed by a diabetic consultant. Like you, I researched and researched which in some ways is born of necessity because most doctors either think you have anxiety or depression OR don't believe you. I also managed to find a professor of endocrinology in the USA who is familiar with this condition and who was very helpful. In lay person's terms he explained that a low carb diet seems to help and that they think what is happening is when our insulin is released to push down the blood sugar after eating, some adrenaline is also released. This is the bit which is going wrong. The adrenaline then gives us the shakes, the nervousness, the disorientation, the sense of panic and, in my case, the sense of fading away from my body. Formerly I needed to sleep for hours following each attack but now I just take a glucose tablet and am back on form within minutes. I firmly believe that there are people the world over who are being treated with antidepressants (I was) who don't actually need them at all. What they need is a low carb diet and glucose (the form of sugar which goes reaches the brain quickly). The person who helped me most of all was a diabetic dietician who first of all, LISTENED, and secondly, told me to eat every two hours, about 20 grams of carbs each time and to take a glucose tablet every time I did exercise, and throughout exercise at the intervals I needed. This transformed my life. It's just a shame it didn't happen earlier.
This suggests to me that maybe some of us can't keep glucose in our brain for as long as we need it, or something like that. Is there anyone out there who would care to take up the challenge of researching this? It would transform lives, I think.

 

[fireweed]

That's so interesting. I have noticed when I'm wearing a continuous glucose monitor that when I'm really focused on something, my blood sugar stops rollercoastering and flattens out. I'm also interested in the many similarities with ADHD.