HbA1c in RH

Hi and welcome @ZT1234

Your Hba1c is at the lower end of normal. Were you aware of that? And were you hoping that it would rise with your new way of eating?
Are you concerned that your hba1c is low because of the amount and length of your hypos?
And are you testing your own blood glucose using a home glucometer?

Sorry for the barrage of questions! But most people round here are concerned about high hba1cs and often people with RH only get diagnosed when their blood glucose rises to type 2 diabetic levels.

How many hypos do you have? And how high does your blood glucose go after carby food?
Your new way of eating may be keeping your blood glucose levels more stable, while keeping nearly the same average number... but that is just a speculation.

Edited: just seen your last answer, which answered a couple of my questions

Hi ZT,
A low hba1c plus hypos would be indicative of a problem that needs an endo to investtigate?

Do you have a blood anomaly, has that been eliminate?
Perhaps eating more fats and proteins will help the hypos that come long after meals.
It certainly doesn't seem like classical RH! We do not have the expertise to help, you need to go to the right medic.
I hope you get treatment.
I take it an insulin producing adenoma has been eliminated?
ATB
Derek

ZT1234 said:

I was diagnosed with RH about 18 months ago after some investigation after being very symptomatic of hypos (I'd previously had gestational diabetes) and at the time had an HbA1c of 24 mmol/mol. I had a 5hr GTT and had hypo symptoms at about 4hrs and when tested about 20 mins later the reading was 2.7. After this testing I then had the 72hr fasting tests done and although I dropped to 2.9/3 on the second and third day I didn't go lower when tested and stayed at around that level.

After diagnosis I was advised to go on a low carb and low sugar diet which I have done (strictly) and I exercise regularly. I am lower end BMI. On recent testing and after some symptoms reappearing at times I have been re-tested and my HbA1c is 25 mmol/mol so not really any better despite the lifestyle changes. My other test last year was again 24 mmol/mol but I wasn't quite as symptomatic and was advised to more or less just carry on.

Does anyone have any advice or had to use anything other than diet to help?

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ZT1234 said:

I was diagnosed with RH about 18 months ago after some investigation after being very symptomatic of hypos (I'd previously had gestational diabetes) and at the time had an HbA1c of 24 mmol/mol. I had a 5hr GTT and had hypo symptoms at about 4hrs and when tested about 20 mins later the reading was 2.7. After this testing I then had the 72hr fasting tests done and although I dropped to 2.9/3 on the second and third day I didn't go lower when tested and stayed at around that level.

After diagnosis I was advised to go on a low carb and low sugar diet which I have done (strictly) and I exercise regularly. I am lower end BMI. On recent testing and after some symptoms reappearing at times I have been re-tested and my HbA1c is 25 mmol/mol so not really any better despite the lifestyle changes. My other test last year was again 24 mmol/mol but I wasn't quite as symptomatic and was advised to more or less just carry on.

Does anyone have any advice or had to use anything other than diet to help?

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Hi and welcome to the forum, your Hba1c levels are in the normal levels, for a patient with RH your eOGTT is classic. Going hypo between three and four hours is the norm.
The fasting test not going below three is explained by the rest of your results. Most doctors, specialists and recommendations for hypos is below 3.5mmols. But for the test purposes, they would take the glucometer allowance in variations, as they are not totally accurate. So readings above three is not to low, as to stop the test.
Also, when you take stress, unusual surroundings, and other issues such as anxiety being away in hospital, the blood glucose levels will be a little bit skewed.
The fasting test and eOGTT are used to eliminate other pancreatic conditions.
By staying above hypo levels for the majority of the test, this has eliminated that possibility. This is why a diagnosis of RH was given.
Have you a glucometer at home?
Because you will need one to find out which foods are triggering the excess insulin response. You should have had a c-peptide and GAD test at some time during your tests, also tests to see how high your insulin levels are.

ZT1234 said:

Many thanks for getting back to me so quickly!

It’s more that we were trying to raise my HbA1c a bit as at that level (for me) it was/is a result of a lot of hypos of which I am quite symptomatic it seems. I think they must mainly happen at night as I tend to feel them more either in the night or the next morning or the consequences from them. From what I understand the normal range can be up to 40 mmol/mol.

I just don’t really know why with the dietary changes I’m still having blood sugars consistently low enough to be at the HbA1c level I was when I must’ve been going through a cycle of hypers and hypos...

Any advice is gratefully received . I’m hopefully being referred back to an endocrinologist too for some guidance.

I briefly saw something on not just GI but an Insulin Index the other day. Does anyone have any thoughts on this?

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I really wouldn't worry too much about your hba1c levels. Being RH your default state for your blood glucose levels is in normal levels and the more time you spend in normal levels, the less you will be either going hyper or hypo.
Do you have good control?

The insulin index is good knowledge to have, but knowing which foods to avoid is more important. This condition is dietary controlled, even low GI foods can cause triggers. I have to avoid most carbs and in particular starchy vegetables like potatoes.
I have used both to understand why certain foods can give different readings.
Do you have a food diary?

I hope you get a specialist endocrinologist who understands RH and has the knowledge to help you.
We are here to help you through this, so keep asking and we will try to help you.

Best wishes.

Hi again

Normal recommendations for type 2 diabetics are to test before eating and then 2 hrs after.

But for you with RH that 2 hours is largely meaningless.

Most carby foods create a spike in the first hour. It depends on the food. Fruit can be within 30-40 mins sometimes. While carbs eaten as a main meal with protein and fibre will be slower. Fat also slows things down.

So try testing at an hour after you started eating and see. You are trying to find out how high you go. Because often with RH the higher you go, then the lower the hypo will be afterwards.

You also need to test immediately you feel symptoms of a hypo. Don’t wait even a few mins, or you will miss the low.

I expect that if you map your numbers alongside a food diary you will quickly learn which foods are helping to keep your bg steady, and which are not.

I use a Freestyle Libre which shows my blood glucose on a continuous graph, and I have found that for me the sharper the bg drops, the worse I feel. So it is more than just about the number on the screen. Sometimes it is also about how fast that number is changing.

Hope that helps.

How to use your glucometer properly?
As @Brunneria has said finding the spike for foods is necessary but also finding food that doesn't spike you is just as important.
I have done a great amount of testing and recording, I've got readings from 2012, I have tested religiously just after diagnosis, because I was told by my medical team to keep eating low GI carbs or complex carbs with good protein and low fat!
Well, low fat was the first to go, closely followed by the low GI or complex carbs.
The spike after eating from these foods was more than double than i was recommended on this site. For example, porridge no milk, no sugar, after half an hour, would spike me into double figures, middle teens!
The hypo after that was severe.
My average spike was around forty to forty five minutes to an hour, depending on what my meal was. I would start going hypo after three to four hours after, if I spiked higher than seven mmols.
If you want to see what tracking a meal will show, then test every fifteen minutes.
Always test pre meal, then when you have found your spike, at one hour, two hour and every hour till you eat.
Then after the initial period. Testing pre meal, then two hours after, it will give you a basis to which you can see how you are doing and see patterns and trends. And in your food diary, recording everything you can will help to see if your body is adapting to your new lifestyle. It will help your medical team understand what is happening.
Exercise of a moderate nature, walking, swimming, low level weights, will help with blood glucose levels. A walk after eating is so good for your health.
Strenuous exercise is the opposite, unfortunately. It gives you a liver dump, which means, that because your glucose is depleted due to excess insulin, the liver will give you the glucose you need for the exercise.
So you exercise, liver dump, hyper or spike, then if you don't stabilise levels you will hypo, without eating!

Experimenting and testing, recording and gaining knowledge and experience is part and parcel of finding what your body needs, and thrives upon. To get healthy, we have to give up the foods that are making us ill.
To live healthy, we have to eat healthy, for us!
We are not normal, the way our body overshoot insulin is not usual.
So we have to find out how to be healthy, by testing and experimentation.

Keep asking, let us know how you are doing.

Best wishes