RH/Prediabetes

[friars1404]

Hi,
I'm new but have been doing a LOT of reading. I was diagnosed with hypoglycemia about 7 years ago but had been dealing with the symptoms of it since my mid teens. I was told to go on a low carb diet and that was the end of it. I found I got too tired as I cycled everywhere at that time and went low GI instead. When I stray too far from that, my symptoms return.
About 2 years ago, I got very ill with exhaustion, headaches, aches and pains, severe palpitations, dizzy spells etc and went through a whole battery of tests and referrals. All my bloods were normal but I was referred to Rheumatology. More tests and still nothing.
This year, I twigged that my palpitations and anxiety seemed linked to food and eating. Having done a lot of research then, my GP confirmed that my BG levels were never checked throughout this whole time. I have since bought a BG monitor and began investigating what's happening with my body in relation to food myself. Initially I thought it was all in my head as my readings were around 5-6 until i had a few of kids sweets after dinner one evening, boom, 9.2 2 hrs later. Fasting test the next morning was 4.2 though so good news on that front.
I ran out of strips and am only just getting to grips with how much I need to test in order to really find out what's going on. I would rather do that now than go for tests at the Dr's which only tell part of the story and I HATE blood tests so whether it's RH or prediabetes, I am yet to find out.

 

[Lamont D]

Hi,
I'm new but have been doing a LOT of reading. I was diagnosed with hypoglycemia about 7 years ago but had been dealing with the symptoms of it since my mid teens. I was told to go on a low carb diet and that was the end of it. I found I got too tired as I cycled everywhere at that time and went low GI instead. When I stray too far from that, my symptoms return.
About 2 years ago, I got very ill with exhaustion, headaches, aches and pains, severe palpitations, dizzy spells etc and went through a whole battery of tests and referrals. All my bloods were normal but I was referred to Rheumatology. More tests and still nothing.
This year, I twigged that my palpitations and anxiety seemed linked to food and eating. Having done a lot of research then, my GP confirmed that my BG levels were never checked throughout this whole time. I have since bought a BG monitor and began investigating what's happening with my body in relation to food myself. Initially I thought it was all in my head as my readings were around 5-6 until i had a few of kids sweets after dinner one evening, boom, 9.2 2 hrs later. Fasting test the next morning was 4.2 though so good news on that front.
I ran out of strips and am only just getting to grips with how much I need to test in order to really find out what's going on. I would rather do that now than go for tests at the Dr's which only tell part of the story and I HATE blood tests so whether it's RH or prediabetes, I am yet to find out.

Hi @friars1404
Welcome to our forum.
Yours is such a similar story to most of us that have Hypoglycaemia or metabolic conditions. As you have discovered on your journey, most of the doctors and medical practitioners haven't a clue. It is food!
You need a specialist endocrinologist to get you a proper diagnosis.
I have found that low GI or high GI, they are both carbs and no matter how much or how high, they raise blood glucose levels regardless.

If your fasting blood glucose levels are in normal range you cannot be prediabetic, most doctors go by the hba1c test, to see if you are!

Like yourself, I have found that if I limit my carbs, I feel better. Not only feel better, my health improves and if you need to lose weight, the very low carb, higher fat will help with that.

I would surmise you have had a look through our forum and its advice.
And unfortunately you do need to test and test and record everything, otherwise your doctor's will always doubt your conclusions and concerns.

If you need questions answered this is the place to do it, we have the experience and even though we are all different, we know that diet is so important in treatment.

Also have a read around the other forums, as there some great information and ideas on foods and how exercise can help you.

Best wishes and again welcome to our unique club!

 

[friars1404]

Hi@LamontD,

Thank you for replying. I'm having to experiment with food a lot as I can get really good readings after carbs. Eating sweets is the only one that sent me spiking. I naturally eat low GI now anyway but carbs don't seem to make me spike if they're part of a meal, I seem to get away with that at the moment but maybe that's because I control it fairly well with diet, even if I do have a bit of a sweet tooth.

 

[Lamont D]

I did have a sweet tooth and addicted to carbs!

Don't miss them at all now!
My taste buds think savoury is all the sweet I need!

Keep testing and experimenting, as you will get to know what foods are spiking you the most. You have symptoms, so why do you persist with the carbs?

Best wishes

 

[friars1404]

I really struggle for energy without carbs but that may be the spikes and drops. I've tested a few times after meals with carbs and they stay pretty steady, even hours after so I'm having an experimental phase and seeing what carbs do it. Because I eat low gi, it's probably not representative of what would happen to the average persons BG on a usual diet. The only spike I've had was after sweets but my BG didn't drop to hypo levels at all so I'm still trying to figure it all out.

 

[Lamont D]

I really struggle for energy without carbs but that may be the spikes and drops. I've tested a few times after meals with carbs and they stay pretty steady, even hours after so I'm having an experimental phase and seeing what carbs do it. Because I eat low gi, it's probably not representative of what would happen to the average persons BG on a usual diet. The only spike I've had was after sweets but my BG didn't drop to hypo levels at all so I'm still trying to figure it all out.

There has been many times that I've heard this and also from doctors, dsns and even my endocrinologist that we must have slow acting low GI complex carbs!
It is a theory that most on very low carb diets have often disputed through experience.
It is called being in ketosis!
Being in a ketogenic lifestyle, brings with it a better health and well-being, as well as getting rid of all the symptoms that we suffer from including lethargy, anxiety and all other symptoms from Hypoglycaemia and fluctuating blood glucose levels.
Your body will really like being in normal blood glucose levels range.
Even if you can tolerate some carbs, the remedial benefits of being in normal range is healthier than when trudging through life with fluctuations.

Best wishes.

 

[Kaz261]

Hi @friars1404 and welcome to the forum.

You're in the right place for advice and support. The guys on here got me through the first few months after diagnosis and I learned more here than I get did from my Endo or GP.

I also find I lack energy if I go too low with my carbs. I manage my symptoms well with around 100g carbs per day. I never eat them in isolation however and stick mainly to low GI carbs. I always eat them alongside veg/salad, protein and some fat.

After many months of experimenting and testing (and feeling pretty rubbish much of the time), I finally found what worked for me. I would now say I'm 90% symptom free, which I believe is as good as it can get for now. There are so many things that can throw you off balance (stress, lack of sleep, monthly hormonal changes etc) and these can be tricky to navigate, but for me I'm happy with where I'm at.

Have you had a confirmed diagnosis of RH?

Best wishes

 

[friars1404]

Hi @Kaz261,

Thank You for your reply. I haven't had a formal diagnosis of RH. I've usually managed well through my diet but I was really struggling to stop the crashes after Christmas so I was curious if I was having spikes too. I bought a meter and sure enough I do but the highest I've had is 10.6mmol/L. The lows usually come after exercise though and not from food as I can eat carbs and not exercise and they stay in the good range so I'm still trying to figure out what's going on. There's definitely no point going for a HBa1c as my levels are usually good, my fasting is good but I think a glucose tolerance test would be interesting!

I'm glad you've managed to get good control of yours. It's amazing how severely this can affect people's lives and yet it's rarely recognised.

 

[Kaz261]

As you probably already know, you need a prolonged oral glucose tolerance test to diagnose RH, where they take samples every 30 mins after the glucose drink. This will confirm if you hypo and how long after the glucose intake it happens.

My highest recorded reading at home is 11mmol/L (I went higher during my OGTT) and if I spike to those kind of levels (which is very rare) I would probably still hypo. I can easily spike to 8s or low 9s and not trigger a hypo but I think this is largely due to the combination of carbs, protein and fat in the previous meal.

Have you considered getting the Freestyle Libra? Lots of people on the forum use them, including myself from time to time and they are brilliant for giving you an overall picture of what different foods/exercise are doing to your levels.

I read an article on the internet many months ago (sorry I can't find a link to it now) written by someone with RH. They enjoyed fairly strenuous exercise and drank a measured amount of cranberry juice and half a cereal bar before exercising and the same again afterwards. In their case this avoided a hypo.

I have spoken to several people since diagnosis and have been surprised by how many people suffer with hypoglycemia or know someone who does. Unfortunately it seems we may not be as unique as first thought! It's such a shame there is so little awareness and knowledge amongst GP's.

 

[Lamont D]

Hi, kaz's reply is spot on.

And individually how we cope with what we eat will also effect how we respond or react to the response from our pancreas to how much glucose that trigger the excessive insulin.
There has been many threads and papers about how good exercise is for our health. But our liver will respond naturally to a deficiency in glucose because of low levels. A lot of T1s carb up before and after to alleviate the hypo before strenuous exercise. Something I can't do and of course because it's natural, we have to find out how much exercise and how vigorous we exercise.
Having a monitor will really help in understanding what you are going through.
Look at the sticky thread on blood glucose monitoring on our forum.