How should i go about getting a mixed meal tolerance test done privately?

[PraxxtorCruel]

Can I just immediately request it in the first consultation or will they have me jumping through hoops racking up the bill to obscene amounts? I want to see how my body reacts to food because for YEARS no matter what I eat I'm always feeling lethargic mentally and physically after meals and of course adrenergic symptoms too. If I don't eat I feel fantastic.

 

[Lamont D]

Can I just immediately request it in the first consultation or will they have me jumping through hoops racking up the bill to obscene amounts? I want to see how my body reacts to food because for YEARS no matter what I eat I'm always feeling lethargic mentally and physically after meals and of course adrenergic symptoms too. If I don't eat I feel fantastic.

Hi,
Do you have a specialist?
If you do, then maybe a oral glucose tolerance test, an extended one is usually used to see if you have intolerance to the glucose derived.
Have you had other tests?
Have you considered a CGM and keeping a food diary?

Having records of your BG results to show a specialist will help with the process of getting a diagnosis.

Do you have any allergies or something like lactose intolerance?
Any other conditions?

Best wishes

 

[Antje77]

Can I just immediately request it in the first consultation or will they have me jumping through hoops racking up the bill to obscene amounts? I want to see how my body reacts to food because for YEARS no matter what I eat I'm always feeling lethargic mentally and physically after meals and of course adrenergic symptoms too. If I don't eat I feel fantastic.

Not an answer to your question, but have you tried simply using finger prick testing when you have symptoms?

 

[PraxxtorCruel]

Hi,
Do you have a specialist?
If you do, then maybe a oral glucose tolerance test, an extended one is usually used to see if you have intolerance to the glucose derived.
Have you had other tests?
Have you considered a CGM and keeping a food diary?

Having records of your BG results to show a specialist will help with the process of getting a diagnosis.

Do you have any allergies or something like lactose intolerance?
Any other conditions?

Best wishes

Unfortunately no specialist. I can't seem to convince my GP for a referral to Endo. Doesn't think its blood sugar related. I haven't had much testing in the last few years besides hba1c. I actually have used a CGM but it stays within the green 99% of the time. It's so odd though cause I get symptoms after eating and when I google my symptoms it I get hypoglycemia but the sensor doesn't show these hypos. I have lactose intolerance, fructose/fructan intolerance. I'll try to post some of my old cgm graphs.

Not an answer to your question, but have you tried simply using finger prick testing when you have symptoms?

Yes and they show within normal range but I only get symptoms after eating which is why I'm confused.

 

[PraxxtorCruel]

Here's some screenshots from my cgm. Ignore the reds as those were during times I was napping and I've heard these sensors malfunction if you apply pressure to the sensor like if you lay on your arm etc. Also the large spikes are when I eat carbohydrates and the much smaller spikes are when I eat very low carb. I can't fully remember the meals I ate. I honestly thought the sensor would allow me to view the entries I made but when I click on them nothing happens, no pop-up. All of the notepad icons that you can see on the upper half of the screenshots are my meals entries.

 

[Jaylee]

Here's some screenshots from my cgm. Ignore the reds as those were during times I was napping and I've heard these sensors malfunction if you apply pressure to the sensor like if you lay on your arm etc. Also the large spikes are when I eat carbohydrates and the much smaller spikes are when I eat very low carb. I can't fully remember the meals I ate. I honestly thought the sensor would allow me to view the entries I made but when I click on them nothing happens, no pop-up. All of the notepad icons that you can see on the upper half of the screenshots are my meals.

If you click on the 3 horizontal lines next to “reports” (mine says “logbook.”) then open the menu & click on the second one down that says “logbook.?” (Yours might say reports?)
You should see your log entries..

 

[LittleGreyCat]

I get symptoms after eating and when I google my symptoms it I get hypoglycemia but the sensor doesn't show these hypos

Unless you have reactive hypoglycaemia then it would be very unusual to get a hypo after eating.
Food usually raised blood glucose levels.

If you are just feeling sluggish after eating then as far as I know this is a natural bodily response to allow the body to focus on digesting the meal.
This would tie in with your various tests showing that your BG levels are fine.

 

[PraxxtorCruel]

Unless you have reactive hypoglycaemia then it would be very unusual to get a hypo after eating.
Food usually raised blood glucose levels.

If you are just feeling sluggish after eating then as far as I know this is a natural bodily response to allow the body to focus on digesting the meal.
This would tie in with your various tests showing that your BG levels are fine.

It does seem like that. This is why I was hoping to get it ruled out but its been an uphill battle. All I know for certain is that if I don't eat I'm asymptomatic and when I do feast then I am lethargic, both mentally and physically. No its definitely not the natural tiredness you get from eating because ive actually lowered the size of my portions by quite a bit and before when i used to eat way more never felt this level of exhaustion. I suffer major anxiety which is always brought on from meals. My appetite goes through the roof. Fast heartbeat. My concentration and general cognition goes out the window. My family reports that I look pale often. Also my vision blurs and I've noticed gets better the longer I fast.

 

[Lamont D]

Unfortunately no specialist. I can't seem to convince my GP for a referral to Endo. Doesn't think its blood sugar related. I haven't had much testing in the last few years besides hba1c. I actually have used a CGM but it stays within the green 99% of the time. It's so odd though cause I get symptoms after eating and when I google my symptoms it I get hypoglycemia but the sensor doesn't show these hypos. I have lactose intolerance, fructose/fructan intolerance. I'll try to post some of my old cgm graphs.

Yes and they show within normal range but I only get symptoms after eating which is why I'm confused.

To start, I have viewed the graphs, and to be fair, if I was a GP, I would say they are normal.
However, if it was an endo, and he had more tests done, I wouldn't be too sure, that you may, could, maybe have a form or type of hypoglycaemia, that is not my type of RH.
But I'm guessing.
it's the symptoms of hypoglycaemia or a sugar crash, blurring, headaches etc. That has me thinking that the intolerance to certain sugars, lactose, fructose may have more bearing on what is happening.
You may, could maybe have other sugars intolerance.

Did you show your GP the readings?
Try and insist on a referral or just ask for the extended oral glucose tolerance test, or a mixed meal test. The important part of those tests is what happens after two hours even three to four hours after.

I have come across a condition called postprandial hypoglycaemia syndrome.
It is in the medical text books. And on Wikipedia.
This is where the patient has the symptoms of hypoglycaemia but doesn't go below 3.5mmols.
Which is when non diabetic patients are considered hypoglycaemic.
Which does happen to me.
What are your fasting levels?
Are you on a low carb, sugar/glucose free diet?
Do you know if you have an intolerance to do with gluten, wheat or grains?
Sorry about the questions.

Best wishes

 

[PraxxtorCruel]

To start, I have viewed the graphs, and to be fair, if I was a GP, I would say they are normal.
However, if it was an endo, and he had more tests done, I wouldn't be too sure, that you may, could, maybe have a form or type of hypoglycaemia, that is not my type of RH.
But I'm guessing.
it's the symptoms of hypoglycaemia or a sugar crash, blurring, headaches etc. That has me thinking that the intolerance to certain sugars, lactose, fructose may have more bearing on what is happening.
You may, could maybe have other sugars intolerance.

Did you show your GP the readings?
Try and insist on a referral or just ask for the extended oral glucose tolerance test, or a mixed meal test. The important part of those tests is what happens after two hours even three to four hours after.

I have come across a condition called postprandial hypoglycaemia syndrome.
It is in the medical text books. And on Wikipedia.
This is where the patient has the symptoms of hypoglycaemia but doesn't go below 3.5mmols.
Which is when non diabetic patients are considered hypoglycaemic.
Which does happen to me.
What are your fasting levels?
Are you on a low carb, sugar/glucose free diet?
Do you know if you have an intolerance to do with gluten, wheat or grains?
Sorry about the questions.

Best wishes

I hear you. I have followed very low carb diets and noticed the vast majority of my (adrenergic) symptoms go away when im on them. The only symptoms that remains even on a low carb diet is cognitive dysfunction and lethargy. Pretty much most of the adrenergic symptoms are gone, except occasionally ill sweat moderately after a meal but that could be normal. I also have one other very prominent sign which is I literally have zero motivation. I used to be pretty driven and competitive but im perfectly happy doing nothing all the time. I haven't bothered to show my GP my results 'cause they're in the green zone and i can imagine he will just label me as anxious. Like you said, how else is he gonna interpret this results besides that they look or are normal. So there's that. It's interesting you bring up the hypoglycemia syndrome. I've read of a form of hypoglycemia "Idiopathic postprandial syndrome/adrenergic postprandial syndrome whereby the patient experiences symptoms of low blood sugar but through testing blood sugar reading it is normal. Perhaps thats something for me to look into. The problem is I can't find anything about it via NHS. Will the GP even humour me? I wonder. Well clinically i don't know my fasting glucose levels but when ive gone for several hours without 7+. My CGM reads a stable 4.0mmol/l. I was on a low carb diet but when i got the sensor i started including a bigger range of foods to see how my body responds so during that 2 week period which my graphs show i was eating a mix of carbs, protein and fats. My plan is to go back on the low carb diet and get another CGM to see how my blood sugar behaves. I was once thought to have celiac disease, that turned out negative. Ultimately what i want back is my cognitive ability and energy. Everyday i feel like im walking through water (my legs are sluggish) and my concentration plus general cognition is non-existent even on the low carb diet. Is it possible for my GP to send me for these tests or do i have to be referred to Endo? I would consider private but if they'll have me running through hoops I won't have enough money to cover it all.

 

[Lamont D]

I hear you. I have followed very low carb diets and noticed the vast majority of my (adrenergic) symptoms go away when im on them. The only symptoms that remains even on a low carb diet is cognitive dysfunction and lethargy. Pretty much most of the adrenergic symptoms are gone, except occasionally ill sweat moderately after a meal but that could be normal. I also have one other very prominent sign which is I literally have zero motivation. I used to be pretty driven and competitive but im perfectly happy doing nothing all the time. I haven't bothered to show my GP my results 'cause they're in the green zone and i can imagine he will just label me as anxious. Like you said, how else is he gonna interpret this results besides that they look or are normal. So there's that. It's interesting you bring up the hypoglycemia syndrome. I've read of a form of hypoglycemia "Idiopathic postprandial syndrome/adrenergic postprandial syndrome whereby the patient experiences symptoms of low blood sugar but through testing blood sugar reading it is normal. Perhaps thats something for me to look into. The problem is I can't find anything about it via NHS. Will the GP even humour me? I wonder. Well clinically i don't know my fasting glucose levels but when ive gone for several hours without 7+. My CGM reads a stable 4.0mmol/l. I was on a low carb diet but when i got the sensor i started including a bigger range of foods to see how my body responds so during that 2 week period which my graphs show i was eating a mix of carbs, protein and fats. My plan is to go back on the low carb diet and get another CGM to see how my blood sugar behaves. I was once thought to have celiac disease, that turned out negative. Ultimately what i want back is my cognitive ability and energy. Everyday i feel like im walking through water (my legs are sluggish) and my concentration plus general cognition is non-existent even on the low carb diet. Is it possible for my GP to send me for these tests or do i have to be referred to Endo? I would consider private but if they'll have me running through hoops I won't have enough money to cover it all.

if you have read the RH forum threads or search for the syndrome on the sub forum there is more than a couple of threads of others who have been diagnosed or for it is possible to have it.
but I do believe that is necessary for a specialist endocrinologist who has already have non diabetic hypoglycaemia patients.
My endo does both NHS and private, especially intriguing cases.
Are you in the U.K.?
The lethargy, the brain fog, the low energy levels.the full rack of symptoms.
I called this my hypo hell.
Constant BG levels crashing throughout every day, every time I had even low carb.
I learned a lot when in hospital, I had a 72 hours fasting test.
I found out that since my body, brain and it increases my health over time. Energy levels, clear brain and reduces the symptoms.
Going without food, is so beneficial for me.
Weird huh!
But I now do intermittent fasting, no set times for meals, a small window in the day, to have some meat, salad or some of the carb free stuff I can eat. I'm eating a ketogenic diet.
And it works for me.
Great energy levels.

But it might not suit you. I do have to tell you.

That is why you need a way of testing your BG levels
And recording as much as you think you need to convince your GP.
Best wishes.

 

[PraxxtorCruel]

if you have read the RH forum threads or search for the syndrome on the sub forum there is more than a couple of threads of others who have been diagnosed or for it is possible to have it.
but I do believe that is necessary for a specialist endocrinologist who has already have non diabetic hypoglycaemia patients.
My endo does both NHS and private, especially intriguing cases.
Are you in the U.K.?
The lethargy, the brain fog, the low energy levels.the full rack of symptoms.
I called this my hypo hell.
Constant BG levels crashing throughout every day, every time I had even low carb.
I learned a lot when in hospital, I had a 72 hours fasting test.
I found out that since my body, brain and it increases my health over time. Energy levels, clear brain and reduces the symptoms.
Going without food, is so beneficial for me.
Weird huh!
But I now do intermittent fasting, no set times for meals, a small window in the day, to have some meat, salad or some of the carb free stuff I can eat. I'm eating a ketogenic diet.
And it works for me.
Great energy levels.

But it might not suit you. I do have to tell you.

That is why you need a way of testing your BG levels
And recording as much as you think you need to convince your GP.
Best wishes.

I will definitely search this forum for every bit of information i can find regarding the syndrome. You are literally describing exactly how i feel day to day haha. If only my blood glucose levels reflected that. I 100% agree that fasting is beneficial. To me its like a cure. I fasted once for 24 hours and not once did i feel symptomatic or exhausted or have brain fog or a single palpitation. Best of all my ravenous appetite actually for once began dwindling. I literally wasn't thinking of food all the time. That was the time when i knew food was the culprit. So in your case have you always been carb intolerant? Since birth? Or is it something that is acquired later in life? Is reactive hypoglycemia caused by poor eating habits or are you more prone to develop it if you eat high carb based foods? Have you found exercise to be beneficial? I've decided im going to do a poor man's version of the Mixed Meal Tolerance Test. I saw somewhere on an NHS pdf stating that a bottle of Ensure Plus Milkshake 220ml can be used to conduct the test. So fast overnight and then consume the drink and take readings for 5 hours. If after that it still shows normal. I'll have to call it quits haha!

 

[Lamont D]

I will definitely search this forum for every bit of information i can find regarding the syndrome. You are literally describing exactly how i feel day to day haha. If only my blood glucose levels reflected that. I 100% agree that fasting is beneficial. To me its like a cure. I fasted once for 24 hours and not once did i feel symptomatic or exhausted or have brain fog or a single palpitation. Best of all my ravenous appetite actually for once began dwindling. I literally wasn't thinking of food all the time. That was the time when i knew food was the culprit. So in your case have you always been carb intolerant? Since birth? Or is it something that is acquired later in life? Is reactive hypoglycemia caused by poor eating habits or are you more prone to develop it if you eat high carb based foods? Have you found exercise to be beneficial? I've decided im going to do a poor man's version of the Mixed Meal Tolerance Test. I saw somewhere on an NHS pdf stating that a bottle of Ensure Plus Milkshake 220ml can be used to conduct the test. So fast overnight and then consume the drink and take readings for 5 hours. If after that it still shows normal. I'll have to call it quits haha!

I'm glad I could guide you from the concern of that you are not alone with being weird, ha!
The reason why a diagnosis is hard for GP's, is they haven't been trained in the more rarer types of hypoglycaemic conditions, such as RH or the syndrome cos there is no direct test for them. All the tests needed are ones to discount other conditions, only after the progression of tests, can they diagnose you. Maybe!
Even though my endo and myself are not entirely certain, it was not bad diet, but it may have contributed to not help. I was diagnosed with a bacterium inside my gut, called helicobactor pylori. I have read in a scientific paper, that the bacteria and or the antibiotics could be the cause. The boffins are not sure!
but there are other causes, which are listed in the RH forum.
Being hungry constantly is another symptom. When not in keto or fasting. I tend to want to eat the fridge, cupboard or anything to hand, no matter what it is. I'm overstating it, but that is the feeling of hunger I get.
In keto, or fasting, I don't get the feeling.
I have found not to eat carbs or sugars for well over a decade now. Except a few times, when I was stupid cos of circumstances. I have always since very young been lactose intolerant, and my eating habits, tho not great, I was always very particular what I did eat. Then again, if not at home, or abroad, in a restaurant I would try exotic foods, within reason.
Exercise is tricky and it depends on the individual, age, and so on.
There are those that can, or like me that cant.
I tend to have a liver dump of glucagon, if I do strenuous stuff. Plus I'm getting on a bit.
But for me, walking, doing gardening, household chores, seems to be good for me.
You will have to discover, like you have been doing, find out how much you can do.
Before retirement, when covid came about, my job was demanding, lots of time on my feet and doing manual work, travelling quite a bit. And being careful with my choices, it was manageable and fitness levels were not an issue.
Just be wary of the test you want to do. Take a pre meal fasting reading, and of course regimental readings after. Write down everything. If you feel really bad, stop the test and have something to eat. And keep checking your BG levels.
Let us know how you get on.
Keep asking.
Best wishes