Can anyone point me in the right direction?

[ConnorBetts]

Hey there, I'm 19 and have been unknowingly experiencing hypoglycemia for quite a while now.

Things changed last year around February time.
Very suddenly, after an hours drive I didn't have the energy to even get out of the car and my then partner (Type 1 Diabetic) took the liberty of testing my blood sugar.
It read 2.2 so she acted accordingly and all seemed to return to normal.
After this, she and I became more aware of these episodes and after pestering Doctors, countless blood tests, conversations with Diabetes Nurses, Diabetics, I am still none the wiser.
Last week I was given my own testing kit and a whole new series of blood tests from my new Doctor who is "intrigued to know what is wrong with me", and my sugar levels have even been going as high as 9.8, and as low as 2.2.
The new Doctor has said he wishes to rule out LADA(?) but since this appointment and monitoring my levels I have now become aware of the higher readings aswell.
I am really concerned that the Doctors are going to send me away for yet another 3 months and tell me to come back again for the same blood tests, which has been the case for the past year.
My iron levels are raised, and my TSH slightly raised but no one seems to be investigating this or attributing any significance to these blood test results, in the past on numerous occasions even sending me for the same test repeatedly due to the blood samples being bottled incorrectly.
My blood sugar is fluctuating daily and is making my life hell, particularly not knowing what is wrong and subsequently how to deal with the situation accordingly.

Any advice would be greatly appreciated, I apologise if my message seems jumbled at all.
If there are any more details I can add which I may have missed out, let me know and I will fill them in.

Many thanks,

Connor

 

[Lamont D]

Hi @ConnorBetts
Welcome to our forum.

You are among others who have found themselves in a situation where your doctors have not got a clue about what is happening.
It is a common story, which includes myself, over a decade before diagnosis.
Your GP should find you a endocrinologist who has experience of Hypoglycaemia.

Ok, if you haven't started already, you will find a lot of information about Hypoglycaemia in our forum titled Reactive Hypoglycaemia.
Read the threads especially about the information for newbies.

What I am reading between the lines, is that you eat, your blood glucose levels rocket and then they drop quickly towards normal, then you go low if you don't eat!

Please correct me if I'm wrong!

Can you list your symptoms?
Has your doctor given you the following blood tests?
Hba1c, c-peptide and fasting function tests?

Do you know your blood results?

If you have questions please ask.
But do read the threads on the forum.

Best wishes

 

[AndBreathe]

Hey there, I'm 19 and have been unknowingly experiencing hypoglycemia for quite a while now.

Things changed last year around February time.
Very suddenly, after an hours drive I didn't have the energy to even get out of the car and my then partner (Type 1 Diabetic) took the liberty of testing my blood sugar.
It read 2.2 so she acted accordingly and all seemed to return to normal.
After this, she and I became more aware of these episodes and after pestering Doctors, countless blood tests, conversations with Diabetes Nurses, Diabetics, I am still none the wiser.
Last week I was given my own testing kit and a whole new series of blood tests from my new Doctor who is "intrigued to know what is wrong with me", and my sugar levels have even been going as high as 9.8, and as low as 2.2.
The new Doctor has said he wishes to rule out LADA(?) but since this appointment and monitoring my levels I have now become aware of the higher readings aswell.
I am really concerned that the Doctors are going to send me away for yet another 3 months and tell me to come back again for the same blood tests, which has been the case for the past year.
My iron levels are raised, and my TSH slightly raised but no one seems to be investigating this or attributing any significance to these blood test results, in the past on numerous occasions even sending me for the same test repeatedly due to the blood samples being bottled incorrectly.
My blood sugar is fluctuating daily and is making my life hell, particularly not knowing what is wrong and subsequently how to deal with the situation accordingly.

Any advice would be greatly appreciated, I apologise if my message seems jumbled at all.
If there are any more details I can add which I may have missed out, let me know and I will fill them in.

Many thanks,

Connor

Connor, in what circumstances did you test at 9.8? Was is after a meal? If so, how long after you had eaten?

I does sound like a bit of a puzzle for you.

 

[ConnorBetts]

I ate a couple of digestives earlier (levels were around 5.7) and then after approximately an hour after feeling extremely sick I tested at 9.7.
I'm back down to 7.4 now, but still feeling sick as a dog.

 

[Lamont D]

I ate a couple of digestives earlier (levels were around 5.7) and then after approximately an hour after feeling extremely sick I tested at 9.7.
I'm back down to 7.4 now, but still feeling sick as a dog.

Rapid fluctuating blood glucose levels will do that!

 

[ConnorBetts]

What could be causing this? My T1 Diabetic partner is saying that 9.8 "isn't that high" and that I shouldn't be feeling so sick?

 

[Lamont D]

Call it a sugar rush!
Or a hyper!
The quickness of the rise is causing the symptom!
If you have near normal levels, that is too high, T1 is different and your body needs to be near normal levels to not get the symptoms.

 

[ConnorBetts]

Exactly my point, I'm just so confused now.

 

[Lamont D]

Exactly my point, I'm just so confused now.

Goes with the territory!
That's why, it's important to understand what and why, is happening to you and finding out how to live in control of the condition.
This will take time!

I've been where you are now and it will become like an obsession to you if you want to be and feel healthier than you do now.

A complete new lifestyle approach and everything you thought was healthy for you and you believed was the norm, just went out the window!

It's not easy and its not going to get easier any time soon, the fight will go on and you have to be strong willed and you need support and people to help you achieve your new lifestyle, never contradicting or putting temptation or belittling your attempt to be as healthy as you can be.
The symptoms will exacerbate the longer your blood glucose levels hyper then hypo!

You are unique and your pancreas is unusual to be doing what it does.
If you can gain control the symptoms will gradually go away and even your health will improve and you will have great energy and have a normal life except for how you feed your body.

The more you talk about it to someone who has the condition, and you get the knowledge necessary to get control, the healthier you can become.


Keep asking and tell us more if you want to!

Best wishes.

 

[kokhongw]

Last week I was given my own testing kit and a whole new series of blood tests from my new Doctor who is "intrigued to know what is wrong with me", and my sugar levels have even been going as high as 9.8, and as low as 2.2

It certainly sounds like you have excessive/delayed insulin response. Cutting out or reducing carbs would be a first step to avoid these situations. But it would likely take quite a lot more to actually figure out the root cause of the high insulin response...

 

[lindisfel]

Hi Connor, try cutting out carbs for a week and just eat protein and good fats. You may feel a little odd as you start burning fats but see what it does to blood glucose control. You should not have hypers or hypos...it fixed me but you may need to see a good endo. regards Derek

 

[ConnorBetts]

Goes with the territory!
That's why, it's important to understand what and why, is happening to you and finding out how to live in control of the condition.
This will take time!

I've been where you are now and it will become like an obsession to you if you want to be and feel healthier than you do now.

A complete new lifestyle approach and everything you thought was healthy for you and you believed was the norm, just went out the window!

It's not easy and its not going to get easier any time soon, the fight will go on and you have to be strong willed and you need support and people to help you achieve your new lifestyle, never contradicting or putting temptation or belittling your attempt to be as healthy as you can be.
The symptoms will exacerbate the longer your blood glucose levels hyper then hypo!

You are unique and your pancreas is unusual to be doing what it does.
If you can gain control the symptoms will gradually go away and even your health will improve and you will have great energy and have a normal life except for how you feed your body.

The more you talk about it to someone who has the condition, and you get the knowledge necessary to get control, the healthier you can become.


Keep asking and tell us more if you want to!

Best wishes.

Thank you so much Lamont D, this message was exactly what I needed to be honest.
I'll keep everyone posted, I will have my results next Wednesday and hopefully I'll know what I'm up again.
Your help, support and kind words are appreciated so much! I think I need to surround myself with more positive people, it seems to work wonders.

 

[ConnorBetts]

Hi Connor, try cutting out carbs for a week and just eat protein and good fats. You may feel a little odd as you start burning fats but see what it does to blood glucose control. You should not have hypers or hypos...it fixed me but you may need to see a good endo. regards Derek

I already eat a strict Vegan diet, how could I go about improving and particularly fats? My diet is extremely low fat naturally.

 

[Lamont D]

I already eat a strict Vegan diet, how could I go about improving and particularly fats? My diet is extremely low fat naturally.

Low fat is not recommended!
This is another healthy food that is not healthy for us. The reason is the fat that has been taken out has to be replaced by something that has taste. That is sugar!

Full fat dairy has very few carbs.

It is confusing! It is against everything that you have understood about dietary needs!
The fact that people can live successfully and healthier eating the foods that make you ill is what the health industry don't like and don't agree with.!

But it does, if you get your protein and natural fat balance with the vegan approach.
There is a vegetarian forum for low carb diet, have a read.
I'm not a vegetarian or a vegan, my diet consists of mostly meat. Obviously, I do eat lots of other things to supplement my intake, I love salad vegetables. Eat a lot of it!

This will take time, and getting your head around the information you are gaining is troubling, with your symptoms, it can't and won't be easy!

Onwards and upwards, keep battling.

 

[ConnorBetts]

Low fat is not recommended!
This is another healthy food that is not healthy for us. The reason is the fat that has been taken out has to be replaced by something that has taste. That is sugar!

Full fat dairy has very few carbs.

It is confusing! It is against everything that you have understood about dietary needs!
The fact that people can live successfully and healthier eating the foods that make you ill is what the health industry don't like and don't agree with.!

But it does, if you get your protein and natural fat balance with the vegan approach.
There is a vegetarian forum for low carb diet, have a read.
I'm not a vegetarian or a vegan, my diet consists of mostly meat. Obviously, I do eat lots of other things to supplement my intake, I love salad vegetables. Eat a lot of it!

This will take time, and getting your head around the information you are gaining is troubling, with your symptoms, it can't and won't be easy!

Onwards and upwards, keep battling.

Thanks again Lamont, you're an absolute godsend!
I've been Vegan for 5 years, but always been underweight despite the amount I eat, even before Veganism. I'm just so confused with the diet stuff, I've had Doctors find out about my diet and seem even more confused as to what to recommend.
I'll try and figure out how to alter my diet around my levels, but it's a somewhat restrictive diet as it is.
Again, thank you for your support and advice, you guys are all lovely people.

 

[Brunneria]

Hi,

You can try vegan low carb and high fat. Our lovely @Avocado Sevenfold does this, and I believe that she is flourishing on it. Her menus and recipes always make me drool.

As Lamont says, it is very important to recognise that RH is a significantly different condition from either T1 or T2. Requires different treatment (mainly diet) and a very different set of blood glucose targets. Your partner knowing about T1 and T1 treatment and diet is a really great starting point, but there are significant differences that you will both need to take into account.

For someone with RH, avoiding the highs is more important than avoiding the lows. Sounds counter intuitive, but if you do keep your highest blood glucose below the point where your body flips the switch to over-produce insulin, then you can avoid the lows completely. At least that is what Lamont and I seem to manage.

I do, occasionally, still have lows. But every single one of them can be traced back to when I have eaten too many carbs in one sitting (for me that seems to be over 20g carbs at a time, particularly if they are wheat, rice, sweet fruit, grains in any form). Adding fat (coconut oil, olive oil and nut oils would be great for you) seems to slow and control any blood glucose spikes that I have, which helps tremendously.

Also, T1s often treat their lows with fast acting carbs. This is perfect for them. Personally, my RH body seems to respond better to a tiny amount of quick acting, followed by a good, large, filling, slow release meal of protein, veg and fat. This seems to work MUCH better than even low GI carbs would.

IF I behaved like a T1, and ate carbs after a hypo, I would be setting myself up for a dreadful low-high-low-high bungee jump, and end up feeling like I had been run over by a bus. My body is always jangly and achey and grotty feeling after a hypo, and my insulin production seems to go on a hair trigger quick-release. So I get my blood glucose back up to its comfort zone, then I avoid all carbs til things have stabilised. Works like a charm.

Hope that helps.

 

[ConnorBetts]

Hi,

You can try vegan low carb and high fat. Our lovely @Avocado Sevenfold does this, and I believe that she is flourishing on it. Her menus and recipes always make me drool.

As Lamont says, it is very important to recognise that RH is a significantly different condition from either T1 or T2. Requires different treatment (mainly diet) and a very different set of blood glucose targets. Your partner knowing about T1 and T1 treatment and diet is a really great starting point, but there are significant differences that you will both need to take into account.

For someone with RH, avoiding the highs is more important than avoiding the lows. Sounds counter intuitive, but if you do keep your highest blood glucose below the point where your body flips the switch to over-produce insulin, then you can avoid the lows completely. At least that is what Lamont and I seem to manage.

I do, occasionally, still have lows. But every single one of them can be traced back to when I have eaten too many carbs in one sitting (for me that seems to be over 20g carbs at a time, particularly if they are wheat, rice, sweet fruit, grains in any form). Adding fat (coconut oil, olive oil and nut oils would be great for you) seems to slow and control any blood glucose spikes that I have, which helps tremendously.

Also, T1s often treat their lows with fast acting carbs. This is perfect for them. Personally, my RH body seems to respond better to a tiny amount of quick acting, followed by a good, large, filling, slow release meal of protein, veg and fat. This seems to work MUCH better than even low GI carbs would.

IF I behaved like a T1, and ate carbs after a hypo, I would be setting myself up for a dreadful low-high-low-high bungee jump, and end up feeling like I had been run over by a bus. My body is always jangly and achey and grotty feeling after a hypo, and my insulin production seems to go on a hair trigger quick-release. So I get my blood glucose back up to its comfort zone, then I avoid all carbs til things have stabilised. Works like a charm.

Hope that helps.

This explains perfectly what happened yesterday, which was the high-low bungee jump that you had described... really takes it out of you.
I'm going to spend today looking into the high fat/low carb diet and see what I can come up with.
Thank you so much, you've helped me understand a lot more particularly the differences between T1 and RH.

 

[Lamont D]

@Brunneria is my godsend, she helped me so much and I gained so much insight into the intelligent and concise advice she posts.

When we are discovering the foods that make you ill, you will learn a lot about your own body so much, it is such an individual condition. Brun has RH with T2, I don't!
Others have other conditions! You are vegan, I'm not, but the necessary is based on not having hypers! No hypers, no hypos, that's what you need to find, then the symptoms will ease.
On this forum, we learn and find solutions based on our experiences and what works for us, then adapt and adjust, to our own individual likes and dislikes!
Not one diet is the correct one, we have to find the balance best for us!
I'm on a fasting day today!
I've not eaten anything since 9pm last night, full fat yoghurt and some berries.
I've discovered that if I go without food for a time, my body and brain benefits from it!
I'm in work as well! I have great energy and feel really good.

In time you will discover things for yourself!

We will be here to help, if you need it!

Best wishes.

 

[ConnorBetts]

@Brunneria is my godsend, she helped me so much and I gained so much insight into the intelligent and concise advice she posts.

When we are discovering the foods that make you ill, you will learn a lot about your own body so much, it is such an individual condition. Brun has RH with T2, I don't!
Others have other conditions! You are vegan, I'm not, but the necessary is based on not having hypers! No hypers, no hypos, that's what you need to find, then the symptoms will ease.
On this forum, we learn and find solutions based on our experiences and what works for us, then adapt and adjust, to our own individual likes and dislikes!
Not one diet is the correct one, we have to find the balance best for us!
I'm on a fasting day today!
I've not eaten anything since 9pm last night, full fat yoghurt and some berries.
I've discovered that if I go without food for a time, my body and brain benefits from it!
I'm in work as well! I have great energy and feel really good.

In time you will discover things for yourself!

We will be here to help, if you need it!

Best wishes.

You're all a very kind bunch, thanks for helping out I honestly don't feel so bad now.
Out of curiosity, are there any other things I should rule out in finding out the underlying cause? Things that Doctors could miss/not test etc?

 

[Avocado Sevenfold]

I already eat a strict Vegan diet, how could I go about improving and particularly fats? My diet is extremely low fat naturally.

Hiya I don't know anything about RH, but enjoy a lower carb, highish fat vegan way of eating with Type 2. I get fats mainly from nuts, seeds, oils and avocados.

For example, at the weekend I made muesli from nuts and seeds (recipe on the vegan thread). I also made mayonnaise to make coleslaw. The mayo was made from aquafaba, vinegar, mustard and a load of rapeseed oil. Last night I had a Thai curry with coconut cream in it. For lunch I have just eaten homemade hummus with tahini in it. Nuts and nut butters are also high in fats. Avocados and olives are good too. Cauli rice fried in virgin coconut oil is a good low carb/high fat option. Plenty of plant fats. All the best.