OGTT and RH

[ZT1234]

I have previously been diagnosed with RH a few years ago after a 5hr OGTT and a 72hr fasting test to rule out an insulinoma but I still have been symptomatic despite dietary (low sugar, low GI and exercise) changes and have had low blood sugar readings/hypos recorded first thing in the morning despite not eating since the night before as well as randomly at other times of day.

For the last 3 years my HbA1c when checked annually has been between 24-30mmol/L. As I have had other symptoms and things going on too an endocrinologist I have seen recently wanted to perform another 5hr OGTT. Prior to this I had my blood glucose monitored continually for 7 days and a food diary was kept which they reviewed and have said my diet is ideal for managing RH.

So today I had the OGTT and my insulin levels have also gone away for testing. I have been left somewhat confused by the BG results that I know as seem to have had almost a double dip/hypos within the testing time and cannot find any information on this pattern. Obviously at some point I hope to hear from the consultant officially regarding the results but in the meantime am just wondering if anyone can shed any light on this and whether it is typical of RH or to do with insulin etc?

Here are the results:

Fasting Glucose (-15 mins before cannula) = 4.9
0 mins = 4.7
Polycal given
10 mins = 5.7
30 mins = 5.1
60 mins = 4.9
90 mins = 3.6 (some symptoms had started)
120 mins = 3.7
150 mins = 3.9
180 mins = 3.1
200 mins = 3.0 (an extra test was put in due to 180 min result)
210 mins = 3.4
240 mins = 4.3
270 mins = 4.4
300 mins = 4.4
END OF TESTING

 

[Bluetit1802]

I do not have RH but those readings do not indicate RH to me. The normal reaction after sugars and carbs is to go up by rather a lot (hyper) and then drop quickly down to hypo levels. There was no hyper in your test.

 

[ZT1234]

I do not have RH but those readings do not indicate RH to me. The normal reaction after sugars and carbs is to go up by rather a lot (hyper) and then drop quickly down to hypo levels. There was no hyper in your test.

Thanks for your reply and so quickly... I had thought that the result hadn't gone up by much too but feel I don't know much about RH so wasn't sure. It's just really confusing what may be going on!!

 

[Bluetit1802]

Thanks for your reply and so quickly... I had thought that the result hadn't gone up by much too but feel I don't know much about RH so wasn't sure. It's just really confusing what may be going on!!

I think you need to wait for the insulin test results to come back, and if necessary see the specialist endocrinologist. A GP is unlikely to have a clue.

 

[Brunneria]

Hi and welcome!

That certainly doesn’t look like MY version of RH.
(I have a v poor first insulin response so my bg spikes to 15 or more, arcs down and goes into a hypo at around 4-5 hours)

BUT, you need to see the insulin levels.
I am so glad they tested them for you.

This is pure speculation, but you may be producing so much insulin that your bg doesn’t rise, and ends up pushing your bg down, instead.

Hopefully your endocrinologist will be able to interpret both bg and insulin test results and come up with an explanation.

Please do come back and tell us what they say?

 

[ZT1234]

Hi and welcome!

That certainly doesn’t look like MY version of RH.
(I have a v poor first insulin response so my bg spikes to 15 or more, arcs down and goes into a hypo at around 4-5 hours)

BUT, you need to see the insulin levels.
I am so glad they tested them for you.

This is pure speculation, but you may be producing so much insulin that your bg doesn’t rise, and ends up pushing your bg down, instead.

Hopefully your endocrinologist will be able to interpret both bg and insulin test results and come up with an explanation.

Please do come back and tell us what they say?

Thanks @Brunneria that's really helpful and @Bluetit1802 too. The tests were done at the hospital and yes thankfully they tested insulin at the same time this time so hopefully that will provide useful information. I'm hoping once the consultant has managed to see the results that I will get an appointment or at least a chance to discuss what these readings may mean. I guess I may not hear for a while but will let you know the outcome especially as the results seem unusual from the lack of information I can find on anything similar to them through google.

 

[DCUKMod]

My own first time, home done, OGTT, for my own curiosity went like this. I was happy enough with this:

Baseline 3.9
15 7.5
30 9.4
45 9
1 hour 6.9
75 5.7
90 5.2
105 4.5
2 hour 3.5
135 3.2
150 3.7

The leading 15, 30, 45 are minutes post ingestion of the glucose drink.

Pressumably you felt fine throughout, or not?

 

[ZT1234]

@DCUKMod thanks for your reply. Unfortunately I was symptomatic with the lows... overwhelming fatigue, finding it hard to concentrate/restless, brain fog, sweats, cold hands, headache and shakiness. Not all at once but throughout the testing!

 

[Lamont D]

I have previously been diagnosed with RH a few years ago after a 5hr OGTT and a 72hr fasting test to rule out an insulinoma but I still have been symptomatic despite dietary (low sugar, low GI and exercise) changes and have had low blood sugar readings/hypos recorded first thing in the morning despite not eating since the night before as well as randomly at other times of day.

For the last 3 years my HbA1c when checked annually has been between 24-30mmol/L. As I have had other symptoms and things going on too an endocrinologist I have seen recently wanted to perform another 5hr OGTT. Prior to this I had my blood glucose monitored continually for 7 days and a food diary was kept which they reviewed and have said my diet is ideal for managing RH.

So today I had the OGTT and my insulin levels have also gone away for testing. I have been left somewhat confused by the BG results that I know as seem to have had almost a double dip/hypos within the testing time and cannot find any information on this pattern. Obviously at some point I hope to hear from the consultant officially regarding the results but in the meantime am just wondering if anyone can shed any light on this and whether it is typical of RH or to do with insulin etc?

Here are the results:

Fasting Glucose (-15 mins before cannula) = 4.9
0 mins = 4.7
Polycal given
10 mins = 5.7
30 mins = 5.1
60 mins = 4.9
90 mins = 3.6 (some symptoms had started)
120 mins = 3.7
150 mins = 3.9
180 mins = 3.1
200 mins = 3.0 (an extra test was put in due to 180 min result)
210 mins = 3.4
240 mins = 4.3
270 mins = 4.4
300 mins = 4.4
END OF TESTING

Hi,
This is a very interesting eOGTT!
This is my interpretation of what is happening.
You have an initial low spike within thirty minutes, this is your first insulin response and background insulin being enough to cope with the dosage of glucose drank.
However, it does seem that Hypoglycaemia occurs because of the excess insulin that has and is being produced through the duration of the test. Yes, a double spike can occur in Hypoglycaemia.
If your insulin levels are high (hyperinsulinaemia) further eOGTTs will be necessary, because you will need to start a dietary regime where your insulin is not necessary for the amount of glucose you get from your meals. You have probably insulin resistance, especially if you do have hyperinsulinaemia.
Again, this is my interpretation because of the fasting test.
You say you have been eating low GI, low sugar and your doctors have said this is their dietary advice.
In my experience, if you have RH, if you keep producing glucose from a certain amount of carbs and sugars, you will trigger the insulin overshoot. Which is why you go hypo.
If you have Hypoglycaemia, you will probably be carb intolerant.
With Hypoglycaemia a carb is a carb and produces too much glucose.
The dietary advice for RH and other types of Hypoglycaemia does not take into account the intolerance to food. In my experience, the training for doctors, is not that good to give really good advice about controlling blood sugar levels.
Read the RH forum and see the success, that others have experienced when they get their dietary intake and balance of foods to be healthy without hypos!
I have RH, and I try and avoid carbs and sugars as much as possible, but the level of intolerance is individual.
Keep using your food diary, this will tell you so much about your body's reaction to your favourite foods and you will discover so much.
Since diagnosis, my insulin levels, insulin resistance, has dropped to normal levels because of my diet, this means that I don't have spikes, which means that I don't trigger the insulin overshoot, so no hypos.
But if I had high insulin levels, high insulin resistance, and did an eOGTT, my results would be as similar to yours, I believe my second test was similar to yours but I don't have the readings. Subsequent tests have shown my Hypoglycaemia would still occur when I have an eOGTT!
My last hypo was my last eOGTT, over four years ago.
This last test was to see how a drug would help production of insulin in the initial stages of digestion. It was hoped that I would not go hypo. Alas, I did!
But not as much as my other tests!
The reason more glucose tolerance tests are required, is because of your initial insulin response, to see if it is weak, like mine, when you have normal insulin levels.
Your Hba1c levels are not as relevant as the insulin tests, you should have had a c-peptide test, other bloods sent to labs for your hormonal levels at the stages of the test. The hba1c confirms the non diabetic diagnosis.
The morning Hypoglycaemia is probably dawn phenomenon. Though I don't have it myself, I know I had hypos through the night before diagnosis because of the symptoms overnight, it may be that your dietary intake in the evening, will likely lead to this. And is a response from your liver to the low blood sugar levels.

The main thing is to get control of your blood sugar levels. Regardless of diagnosis and the only way to get this information, is by testing, experimenting, and using your food diary and glucometer. Stopping the rollercoaster ride of spikes and hypos is so important to your future health. If this means going without carbs, like I have to. Then so be it! To be healthy and hypo free is the proper treatment.

Keep asking and let us know how you get on.

Best wishes

 

[ZT1234]

Thanks @Lamont D for your reply, that's all really interesting and good advice. I will look through the rest of the forum too for dietary advice for a good balance. I would say my diet is pretty low carb one already, having had gestational diabetes previously i'm extra cautious since being diagnosed with RH and knowing how hypo's can make you feel but perhaps I need to reduce to almost no carbs like you have found. I am low BMI (just within the normal range) and tend to graze throughout the day as well to try and keep things more even.

When you had your OGTT tests did you have a hyper in response to the glucose before a hypo? Hopefully as well as insulin they are testing the other things you mentioned as I had 29 tubes of blood taken over the 5.5hrs so they got a lot!

Do you mind if I ask you what food you find gives you the most energy if it's not carbs? Do you follow a particular type of diet? I do quite a lot of exercise and sports so if I do have (good) carbs it is more likely to be a small amount before that.

After the continuous glucose monitor week long testing the dietician from the diabetes team went through my food diary along with the exercise sessions and couldn't see anything that triggered hypos and interestingly during that week long monitoring with my usual diet I didn't have any significant lows which was good.

 

[Lamont D]

Thanks @Lamont D for your reply, that's all really interesting and good advice. I will look through the rest of the forum too for dietary advice for a good balance. I would say my diet is pretty low carb one already, having had gestational diabetes previously i'm extra cautious since being diagnosed with RH and knowing how hypo's can make you feel but perhaps I need to reduce to almost no carbs like you have found. I am low BMI (just within the normal range) and tend to graze throughout the day as well to try and keep things more even.

When you had your OGTT tests did you have a hyper in response to the glucose before a hypo? Hopefully as well as insulin they are testing the other things you mentioned as I had 29 tubes of blood taken over the 5.5hrs so they got a lot!

Do you mind if I ask you what food you find gives you the most energy if it's not carbs? Do you follow a particular type of diet? I do quite a lot of exercise and sports so if I do have (good) carbs it is more likely to be a small amount before that.

After the continuous glucose monitor week long testing the dietician from the diabetes team went through my food diary along with the exercise sessions and couldn't see anything that triggered hypos and interestingly during that week long monitoring with my usual diet I didn't have any significant lows which was good.

When I had all my eOGTTs, I would spike very quickly, a hyper is a spike!
That is because my initial insulin response was weak, then of course, the second insulin response called an overshoot, driving my blood sugar levels into Hypoglycaemia.
I have read, that some hypoglycaemics do not have to have a big enough spike to still get an overshoot for to go hypo. It depends on what the trigger is for that to happen.
Yes, so much blood on my first, second and last tests, I thought that I would have to keep the cannula on for life!!! Even on my 72 hours fasting test, I had so much blood taken as well as the finger prick testing.
The reason I can go without carbs is called being in ketosis, most of the time. This is a way to not get your energy from carbs, you get them from ketones. It is the body's way of providing energy when food is not available. You use ketones from muscle fat, that is why it is essential to be knowledgeable about saturated fat, you need fats to restore the fat used for ketones. Protein is essential for everyone, good fats are essential, carbs are not!
This will seem controversial to most doctors and dieticians and certainly dietary advice for all endocrine conditions. But it works, not to go hypo is the target of a healthy future. It is carbs that causes the symptoms. As I've said many times before, if you have an allergy, you would be told to avoid it. If you have a carb intolerance, why do they insist on telling you to have them! It is more or less the same thing. Only slower acting! It still makes you ill!
There is nothing wrong with grazing, as long as it is low carb, and also, if you stick to regular meal times (I don't!) don't have large meals, too much protein at once is not recommended, but a couple of bites every two to three hours helped me so much in the early days after diagnosis.
Then because of the need to experiment and record everything, as it will really help with your health and symptoms. You might try intermittent fasting.
The reason I say that is because, I can fast without problems. My body is always in normal levels, naturally. Without food, my body is not needing nutrition all the time, I have gone five days without food and after the second day, I felt wonderful!
So much energy! I only eat if I feel like it!
I would recommend searching intermittent fasting, ketogenic lifestyle and the success stories forum about low carb diet.
So as you are the experimental stage, I would try missing meals especially breakfast and try missing other meals depending on your life, work etc.

Hope you are getting through this period with as little problems.

Best wishes

 

[ZT1234]

When I had all my eOGTTs, I would spike very quickly, a hyper is a spike!
That is because my initial insulin response was weak, then of course, the second insulin response called an overshoot, driving my blood sugar levels into Hypoglycaemia.
I have read, that some hypoglycaemics do not have to have a big enough spike to still get an overshoot for to go hypo. It depends on what the trigger is for that to happen.
Yes, so much blood on my first, second and last tests, I thought that I would have to keep the cannula on for life!!! Even on my 72 hours fasting test, I had so much blood taken as well as the finger prick testing.
The reason I can go without carbs is called being in ketosis, most of the time. This is a way to not get your energy from carbs, you get them from ketones. It is the body's way of providing energy when food is not available. You use ketones from muscle fat, that is why it is essential to be knowledgeable about saturated fat, you need fats to restore the fat used for ketones. Protein is essential for everyone, good fats are essential, carbs are not!
This will seem controversial to most doctors and dieticians and certainly dietary advice for all endocrine conditions. But it works, not to go hypo is the target of a healthy future. It is carbs that causes the symptoms. As I've said many times before, if you have an allergy, you would be told to avoid it. If you have a carb intolerance, why do they insist on telling you to have them! It is more or less the same thing. Only slower acting! It still makes you ill!
There is nothing wrong with grazing, as long as it is low carb, and also, if you stick to regular meal times (I don't!) don't have large meals, too much protein at once is not recommended, but a couple of bites every two to three hours helped me so much in the early days after diagnosis.
Then because of the need to experiment and record everything, as it will really help with your health and symptoms. You might try intermittent fasting.
The reason I say that is because, I can fast without problems. My body is always in normal levels, naturally. Without food, my body is not needing nutrition all the time, I have gone five days without food and after the second day, I felt wonderful!
So much energy! I only eat if I feel like it!
I would recommend searching intermittent fasting, ketogenic lifestyle and the success stories forum about low carb diet.
So as you are the experimental stage, I would try missing meals especially breakfast and try missing other meals depending on your life, work etc.

Hope you are getting through this period with as little problems.

Best wishes

Thank you again for taking the time to get back to me and with such helpful advice.

I have now managed to get hold of the hospital results from my first eOGTT in 2016 and interestingly they were very different to the recent ones. Back then I went up to 9.4 mmol/L at 45mins and down to 2.7 mmol/L at 150 mins before going back to normal range of 4 mmol/L at 180 mins. So I guess something must've changed with my insulin reaction or whatever is affecting my blood sugars since then as there was a slight rise this time at 10 minutes but that was it before the dips started to happen.. This time it seems to have been so much harder to feel anywhere near normal again.

From the 72hr fasting test which followed on from the eOGTT test in 2016 for the first 24hrs I stayed between in the 4-5mmol/L range but between 24-48hrs I went down to 3.1 mmol/L and on the last day of testing went down to 2.9 mmol/L but stayed around the 3 mmol/L mark for the last 12 hours.

When I have done random testing at home before I can get up and be just in the normal BG range and then 15 minutes later before eating have been down at 3.3 mmol/L. I'm not very clued up on all of this but just don't understand how that could happen if I am in a fasting state and haven't eaten at that time so couldn't be affected by carbs. I guess I just need to be patient now and wait for the other results to see if they provide any more info to help work everything out and for the endocrinologist to explain what is happening. In the meantime i'll be mindful of my diet (grazing wise it's always very low carb) and your suggestions and have been trying to read up on so much that might help and across the forum. There is so much useful info.

Thanks again!

 

[Lamont D]

I would definitely wait to see what the specialists say about what is happening in both the glucose tolerance and fasting tests giving you different results.
In all my fasting, I never go hypo. So I'm just assuming something else is going on and that is to do with all the blood giving.
There is a condition called insulinoma that causes hypoglycaemic episodes in fasting mode. It is to do with your pancreas having a small non cancerous tumour. This causes insulin response when it is not needed, hence the hypos were food is not involved. But I'm only guessing, you never know it could be any type of hypoglycaemia.
Do let us know how you get on.
My best wishes.

 

[ZT1234]

Thank you @Lamont D I will do. I had an insulinoma ruled out with the 72hr fast in 2016 as didn't dip quite low enough for it to be a diagnosed/meet all the other criteria with my bloods. Things have obviously changed since then though and i'm now seeing a different specialist so I will wait to see what they say.