Hypoglycemia or is it brittle diabetes?

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martinajane12

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Not sure if I posted this query in the right category. Just established I'm an unaware hypo but maybe I may be brittle diabetic? Message to my GP:

Hello Dr X

Noted/Confused about some readings as follows:

- have diabetic level of high blood sugar recently according to Google (?), and I didn't eat much to get that, and stress level was pretty normal for me which means I'm still stressed but it's daily regular stress reading 11.5 and 15.4. From 1 falafel wrap and HALF a MINI bottle of fruit juice read 11.5. This is LESS than the average person may eat for lunch, they would normally finish a whole bottle of fruit juice and may have crisps or chocolate bar or pastry?
Fruit crumble with icing sugar (rang out of sugar substitute) read 15.4. This is LESS than the average person may eat because this excludes any dinner. However if a dinner contained fibre then this reading may be lower. But dinners usually have potatoes or pasta or something to push this up higher.
- had small high carb meal and read 7 afterwards, as opposed to a crash, so I think we could rule out my low blood sugar being a carb problem?
- confused why I read 2.5 at 2:12pm and then 8 at 5:45pm with only drinking water and NO food in between. How can it jump to that with no food over that much time and my "regular" stress levels? This reading is before I've eaten anything, so how does it jump from 2:12 to 8 in 3 1/2 hrs?
- Here's another: 8 at 5.45pm immediately BEFORE I eat as I sometimes took these out of curiosity (1 chicken thigh and a small amount of risotto), and then LO reading after 2 hours - that's a big drop, no? But as I say below, the below list is only readings taken after 2 hours - this list below doesn't show dramatic shifts like this as this is omitted.

Readings to date:
As requested you asked for just the numbers. Obviously this doesn't factor in stress level, level of ME, or exercise level, or what I've eaten, which is the down side to just giving you numbers, but I understand it can seem more confusing to read with the extra info in a timeline - however the table is much better over view in my opinion to see the overall picture. Still you requested just the numbers so here they are in full to date. I have only included 2 hours after eating, none immediately before eating or immediately after eating:

1.2
LO
5.6
1.3
LO
6.1
LO
5.2
1.7
LO
6.6
3.3
5
3.3
7.3 (only 1 hr)
5
3.7
8.1
1.2
6.8
2.5
LO
6.5
1.8
7 (carbs: pizza and chips reads normal. and previously eggs and bacon read low afterwards and they aren't carbs)
11.5
15.4


Obviously ME (and my emotional problems every day as I have ASD and BPD), cause great stress. Now stress increases blood sugar. So when I'm reading LO (below 1.1 on the glucose monitor) I am actually running stressed all day a lot of the time - and running LO reading at the start and end of the day too - and I don't eat enough. But the stress level should at least kick me above 1.1 you'd think with the chronic stress I've had lifelong, especially as ME is relentless every day causing stress?

On stress:
Many many years ago I asked the doctors about stress, they did 1 cortisol test (not several through the day), said it was normal. And when I contested about checking my adrenals as I'm really stressed every day (I had severe depression most of my life, break down including audio hallucinations and dissociation of being outside my body, severe not eating and inability to get up due to severe depression, this went on for years...), the GP said I didn't have a problem with my adrenals as it would show on that one cortisol test. Yet cortisol is high with stress and we know low with ME, especially in the mornings and cortisol tests are done first thing! I'm of the opinion there is no way they factored this in.

I'm not saying this is my sole problem from glucose readings being like this, but it is one such avenue I tried to get help with many years ago but I was dismissed.

Obviously continually not eating enough is another factor, and could be many other reasons.
 
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Today I read online about "brittle" diabetic, aka variable glucose. This is actually considered a sub type or similar to Type 1 diabetic.

The doctors say I'm not diabetic as I don't show this on their tests. This is where the conversation ended when I asked for help as I crash after eating, until I persisted.

They said I had NO problems with my glucose levels after the tests they did, until I pushed for this to be relooked at, which as I say, is where I was given a monitor against the normal rules for a GP to provide one, just to check. So really I don't have much faith in the GP approach so far, as this was going to be missed!!! Missed at regularly being LO or low readings. Don't forget that the list given above does not include all the times I read low because they don't include the readings before meals, or upon wakening.

So either I'm hypo, with a few one off hyper moments (11.4) after eating a tiny amount of fruit juice and a falafel wrap only....

Or I'm a brittle diabetic that is actually swinging to the hypos more often, and is undiagnosed as diabetic, due to my poor eating/portion sizes smaller than an average person... so it is not picked up that I can rapidly swing. But then you'd expect it to be higher because of the stress I have daily. I need someone who is an expert to explain how I fit one category, and not the other. Right now I can't tell due to my eating habits.

As I say, it's not exactly clear just looking at this list of results above, because I've not put what my reading was just BEFORE I ate, what exercise I've done, what food I ate, what stress levels are at time of reading. All of this factors into the results. I have this instead on spreadsheets but the doctor said he just wants the numbers after I eat as looking at my exercise, what I ate, and stress, is confusing to see at a glance....

I think that approach is too simplistic (but easier for a GP with little time!) I'm no expert, but don't you need to factor all that in rather than just these numbers, to figure out what's going on.

Also getting readings of LO or 1.1 I really have no symptoms other than normal ME symptoms. Which can also be hypo symptom anyway. I don't get shaking or feeling like I'm going to faint. I do get extremely drowsy, extreme anger and irritability, hunger obviously, blurry vision and dry eyes, muscle pain, can sometimes feel nausea, feel very weak. But I can feel all that and read a normal glucose level too.

And it is also ME symptoms, so I can't tell what's ME and what Hypoglycemia (with other symptoms too), and when I do a glucose reading it can either read low or normal. In which case if it's reading normal, I assume ME is a separate problem. But no idea if they are linked. Research shows hypos are low if non diabetic, and yet common in ME. People with ME have difficulty metabolising glucose and fatty acids.
 
Have you had an HbA1C done @martinajane12 ? What blood glucose meter are you using? Some glucose meters will say LO when there’s not enough blood on the strip - ie not actually low blood sugar.

It wouldn’t be brittle diabetes as, I presume, you’ve not been diagnosed with diabetes.

Also getting readings of LO or 1.1 I really have no symptoms other than normal ME symptoms. Which can also be hypo symptom anyway. I don't get shaking or feeling like I'm going to faint. I do get extremely drowsy, extreme anger and irritability, hunger obviously, blurry vision and dry eyes, muscle pain, can sometimes feel nausea, feel very weak. But I can feel all that and read a normal glucose level too.

Which is why I’m wondering if you’re actually having low blood sugar at all. Likewise your 15 could be a rogue reading due to ‘contaminated’ hands or a meter blip. Apart from that one and the random LOs, your blood sugar levels look normal.

So either I'm hypo, with a few one off hyper moments (11.4) after eating a tiny amount of fruit juice and a falafel wrap only....Or I'm a brittle diabetic that is actually swinging to the hypos more often, and is undiagnosed as diabetic, due to my poor eating/portion sizes smaller than an average person... so it is not picked up that I can rapidly swing. But then you'd expect it to be higher because of the stress I have daily. I need someone who is an expert to explain how I fit one category, and not the other. Right now I can't tell due to my eating habits.

People aren’t hypo. Hypoglycaemia is a temporary condition, usually caused by insulin and a few other diabetes meds. I note you said the doctor had done ‘diabetes tests’ so I guess this was the HbA1C? And that was normal (non-diabetic). Is that correct? So why do you think you have diabetes? You mention a ‘crash after eating’ - what do you mean? Do you mean the feelings that you say are also ME feelings? You mention you don’t eat much/eat irregularly. Why is that? Could that be connected to the feelings you’re having? Are you underweight (what’s your BMI)?
 
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martinajane12 said:
Not sure if I posted this query in the right category. Just established I'm an unaware hypo but maybe I may be brittle diabetic? Message to my GP:

Hello Dr X

Noted/Confused about some readings as follows:

- have diabetic level of high blood sugar recently according to Google (?), and I didn't eat much to get that, and stress level was pretty normal for me which means I'm still stressed but it's daily regular stress reading 11.5 and 15.4. From 1 falafel wrap and HALF a MINI bottle of fruit juice read 11.5. This is LESS than the average person may eat for lunch, they would normally finish a whole bottle of fruit juice and may have crisps or chocolate bar or pastry?
Fruit crumble with icing sugar (rang out of sugar substitute) read 15.4. This is LESS than the average person may eat because this excludes any dinner. However if a dinner contained fibre then this reading may be lower. But dinners usually have potatoes or pasta or something to push this up higher.
- had small high carb meal and read 7 afterwards, as opposed to a crash, so I think we could rule out my low blood sugar being a carb problem?
- confused why I read 2.5 at 2:12pm and then 8 at 5:45pm with only drinking water and NO food in between. How can it jump to that with no food over that much time and my "regular" stress levels? This reading is before I've eaten anything, so how does it jump from 2:12 to 8 in 3 1/2 hrs?
- Here's another: 8 at 5.45pm immediately BEFORE I eat as I sometimes took these out of curiosity (1 chicken thigh and a small amount of risotto), and then LO reading after 2 hours - that's a big drop, no? But as I say below, the below list is only readings taken after 2 hours - this list below doesn't show dramatic shifts like this as this is omitted.

Readings to date:
As requested you asked for just the numbers. Obviously this doesn't factor in stress level, level of ME, or exercise level, or what I've eaten, which is the down side to just giving you numbers, but I understand it can seem more confusing to read with the extra info in a timeline - however the table is much better over view in my opinion to see the overall picture. Still you requested just the numbers so here they are in full to date. I have only included 2 hours after eating, none immediately before eating or immediately after eating:

1.2
LO
5.6
1.3
LO
6.1
LO
5.2
1.7
LO
6.6
3.3
5
3.3
7.3 (only 1 hr)
5
3.7
8.1
1.2
6.8
2.5
LO
6.5
1.8
7 (carbs: pizza and chips reads normal. and previously eggs and bacon read low afterwards and they aren't carbs)
11.5
15.4


Obviously ME (and my emotional problems every day as I have ASD and BPD), cause great stress. Now stress increases blood sugar. So when I'm reading LO (below 1.1 on the glucose monitor) I am actually running stressed all day a lot of the time - and running LO reading at the start and end of the day too - and I don't eat enough. But the stress level should at least kick me above 1.1 you'd think with the chronic stress I've had lifelong, especially as ME is relentless every day causing stress?

On stress:
Many many years ago I asked the doctors about stress, they did 1 cortisol test (not several through the day), said it was normal. And when I contested about checking my adrenals as I'm really stressed every day (I had severe depression most of my life, break down including audio hallucinations and dissociation of being outside my body, severe not eating and inability to get up due to severe depression, this went on for years...), the GP said I didn't have a problem with my adrenals as it would show on that one cortisol test. Yet cortisol is high with stress and we know low with ME, especially in the mornings and cortisol tests are done first thing! I'm of the opinion there is no way they factored this in.

I'm not saying this is my sole problem from glucose readings being like this, but it is one such avenue I tried to get help with many years ago but I was dismissed.

Obviously continually not eating enough is another factor, and could be many other reasons.
Click to expand...
I thought they had abandoned the concept of 'Brittle Diabetes' yonks ago ? With the advent of rapid acting insulin analogues in tbe mid 1990s BD was frequently dismissed as just poorly controlled Type 1 ?
 
Burylancs said:
I thought they had abandoned the concept of 'Brittle Diabetes' yonks ago ? With the advent of rapid acting insulin analogues in tbe mid 1990s BD was frequently dismissed as just poorly controlled Type 1 ?
Click to expand...

A Type 1 friend is still labelled a brittle diabetic. They experience erratic blood sugars even though they have a pump. It certainly isn’t bad control in their case.
 
I do still hear the term @Burylancs - though more rarely, and personally I've only ever heard it used in the context of people with diabetes who use insulin, but who find it nigh-on impossible to get any consistency in the activity / speed / sensitivity of their insulin doses.
 
Sorry to hear about the confusing readings you are getting.

Which brand of meter are you using? Like @Inka I do wonder if some of these readings might be slightly adrift from your actual BG readings?

To get no symptoms at all with levels reading 2.0 or below would be quite unusual for someone with diabetes who had pummeled their warning signs with excess insulin for many years. Usually for people without diabetes, readings in the low 3s would give rise to quite dramatic symptoms, and readings in the 1s might lead to loss of consciousness.

I think if you are going to begin to understand how your body is coping with foods, you may need to stick to a regular healthy menu for a while, with a good balance of macronutrients, to see how your metabolism copes (or how much it struggles).

Home BG meters are not really rated for diagnostic purposes, so it will be your HbA1c that your Dr is relying on. Do you remember what your HbA1c result was?
 
My gut feeling is that your meter is faulty and/or not getting enough blood on the test strip. If you were genuinely down to 1.1 you would be unconscious or very close to it.
Which meter are you using? In think people have reported the Sinocare giving low readings when there isn't enough blood.
 
Inka said:
Have you had an HbA1C done @martinajane12 ? What blood glucose meter are you using? Some glucose meters will say LO when there’s not enough blood on the strip - ie not actually low blood sugar.

It wouldn’t be brittle diabetes as, I presume, you’ve not been diagnosed with diabetes.

Also getting readings of LO or 1.1 I really have no symptoms other than normal ME symptoms. Which can also be hypo symptom anyway. I don't get shaking or feeling like I'm going to faint. I do get extremely drowsy, extreme anger and irritability, hunger obviously, blurry vision and dry eyes, muscle pain, can sometimes feel nausea, feel very weak. But I can feel all that and read a normal glucose level too.

Which is why I’m wondering if you’re actually having low blood sugar at all. Likewise your 15 could be a rogue reading due to ‘contaminated’ hands or a meter blip. Apart from that one and the random LOs, your blood sugar levels look normal.

So either I'm hypo, with a few one off hyper moments (11.4) after eating a tiny amount of fruit juice and a falafel wrap only....Or I'm a brittle diabetic that is actually swinging to the hypos more often, and is undiagnosed as diabetic, due to my poor eating/portion sizes smaller than an average person... so it is not picked up that I can rapidly swing. But then you'd expect it to be higher because of the stress I have daily. I need someone who is an expert to explain how I fit one category, and not the other. Right now I can't tell due to my eating habits.

People aren’t hypo. Hypoglycaemia is a temporary condition, usually caused by insulin and a few other diabetes meds. I note you said the doctor had done ‘diabetes tests’ so I guess this was the HbA1C? And that was normal (non-diabetic). Is that correct? So why do you think you have diabetes? You mention a ‘crash after eating’ - what do you mean? Do you mean the feelings that you say are also ME feelings? You mention you don’t eat much/eat irregularly. Why is that? Could that be connected to the feelings you’re having? Are you underweight (what’s your BMI)?
Click to expand...

Hi

Yes I did that test and it was normal. However my readings are low.

"It wouldn’t be brittle diabetes as, I presume, you’ve not been diagnosed with diabetes."

I don't know if that's the case for the reasons I gave. And I don't think you have to be diagnosed with diabetes to be given the diagnosis brittle diabetes, if they miss the diagnosis because I read more low but still can swing.


"Which is why I’m wondering if you’re actually having low blood sugar at all."

I don't know how you mean.


" Likewise your 15 could be a rogue reading due to ‘contaminated’ hands or a meter blip. Apart from that one and the random LOs, your blood sugar levels look normal."
As I say above, you are missing the other lows not in this list. And I have more than LO i have 1.1 and 2s and 3s. That is not normal.
I'm not sure the metre would be so wrong for all these occasions.


"People aren’t hypo. Hypoglycaemia is a temporary condition, usually caused by insulin and a few other diabetes meds."

By me saying I'm hypo, it is no different to saying I'm Hypoglycemic, likewise someone saying they are hypergylcemic.

" I note you said the doctor had done ‘diabetes tests’ so I guess this was the HbA1C? And that was normal (non-diabetic). Is that correct?
So why do you think you have diabetes?"
I don't know what is going on as I say in my post. Either I'm hypo or brittle diabetic as I can swing possibly.

"You mention a ‘crash after eating’ - what do you mean?"
Extreme drowsiness where I'm bedbound for very long periods of time as a result of eating. As I understand it ME fatigue is not the same as severe drowsiness. And in fact I can personally say that extreme fatigue is not the same as extreme drowsily. It feels different. So I don't know if it's ME or hypo. But it it still a result of me eating and having a reaction to eating.


"You mention you don’t eat much/eat irregularly. Why is that?"
way too many reasons to explain


"Could that be connected to the feelings you’re having?"
Absolutely not this is an immediate or shortly after problem. As I say people with ME struggle to metabolise fatty acids and glucose. So it may be this.


"Are you underweight (what’s your BMI)?"
yes I am. Which also can be a factor for experiencing hypos (malnutrition, underweight, long term fasting, long periods of not eating enough can throw your body as you switch between burning glucose to fats or giving too much insulin out as your body is overwhelmed by suddenly getting glucose when it's not used to eating). Or it could be nothing to do with it.
 
everydayupsanddowns said:
Sorry to hear about the confusing readings you are getting.

Which brand of meter are you using? Like @Inka I do wonder if some of these readings might be slightly adrift from your actual BG readings?

To get no symptoms at all with levels reading 2.0 or below would be quite unusual for someone with diabetes who had pummeled their warning signs with excess insulin for many years. Usually for people without diabetes, readings in the low 3s would give rise to quite dramatic symptoms, and readings in the 1s might lead to loss of consciousness.

I think if you are going to begin to understand how your body is coping with foods, you may need to stick to a regular healthy menu for a while, with a good balance of macronutrients, to see how your metabolism copes (or how much it struggles).

Home BG meters are not really rated for diagnostic purposes, so it will be your HbA1c that your Dr is relying on. Do you remember what your HbA1c result was?
Click to expand...
Hi

I'm using GP given one which is glucoRX Q. I'm not sure how this monitor could be faulty; maybe one or two readings off slightly... But I'm guessing. I just don't think that it is faulty. Even if some are out a bit, if I still read LO a fair bit in the day, then it would have to be off by a lot for me not to be experiencing very low, lows.


"To get no symptoms at all with levels reading 2.0 or below would be quite unusual for someone with diabetes who had pummeled their warning signs with excess insulin for many years. Usually for people without diabetes, readings in the low 3s would give rise to quite dramatic symptoms, and readings in the 1s might lead to loss of consciousness."

From my research that is not my understanding. I have read that some people get no symptoms. Some get symptoms only when extremely low. Some people can go unconscious below 1, and some people get symptoms when they are still high and no where near low but they body is more aware. I read going a long time with hypos can lead to unawareness too. I have aldo read brittle diabetic can also have unaware hypos. I think the conscious is that you get symptoms when low, but not everyone, and not nessacarily the usual ones like shaking and unconsciousness.

HbA1c was normal but that doesn't pick up on non diabetic Hypoglycemic.
Click to expand...
 
@martinajane12 I think the question about your comparison between hypo and brittle diabetes is that they are different concepts.
A hypo occurs at a specific time when your levels are low. Brittle diabetes is an ongoing condition with large swings in BG from hypers (high BG) to hypos (low BG).

It does not make sense to say you have an ongoing condition of hypos. Your meter suggests that you experience some hypos but not all of the time. They could be due to brittle diabetes, they could be reactive hypoglycaemia, they may be ME related, they may be errors with your meter (e.g. not enough blood on the strip) or with your strips.
 
rebrascora said:
My gut feeling is that your meter is faulty and/or not getting enough blood on the test strip. If you were genuinely down to 1.1 you would be unconscious or very close to it.
Which meter are you using? In think people have reported the Sinocare giving low readings when there isn't enough blood.
Click to expand...
Oh really? I wish I knew if it was faulty or not
 
helli said:
@martinajane12 I think the question about your comparison between hypo and brittle diabetes is that they are different concepts.
A hypo occurs at a specific time when your levels are low. Brittle diabetes is an ongoing condition with large swings in BG from hypers (high BG) to hypos (low BG).

It does not make sense to say you have an ongoing condition of hypos. Your meter suggests that you experience some hypos but not all of the time. They could be due to brittle diabetes, they could be reactive hypoglycaemia, they may be ME related, they may be errors with your meter (e.g. not enough blood on the strip) or with your strips.
Click to expand...
What I actually said, or meant to say, was it looks like I have frequent low readings, aka hypos.

I'm aware the two things are totally different things.

I agree on the last few sentences of what it could be, that is why I posted here for thoughts on this. Only I didn't know a meter could give that many faulty readings. I wish I knew for sure if that was it.
 
martinajane12 said:
What I actually said, or meant to say, was it looks like I have frequent low readings, aka hypos.
Click to expand...
Thank you for the clarification.
Unfortunately, many of us do not fully read long messages and will focus on the subject.

Sorry, for missing the detail in your message.
 
martinajane12 said:
Oh really? I wish I knew if it was faulty or not
Click to expand...
I did get a Gluco Rx Q as a spare to take (not keep) in the car. It was frequently out of kilter with my regular meter, often reading up to 2.0 lower. I would certainly not assume yours was accurate.
 
Absolutely not this is an immediate or shortly after problem. As I say people with ME struggle to metabolise fatty acids and glucose. So it may be this.
"Are you underweight (what’s your BMI)?"
yes I am. Which also can be a factor for experiencing hypos (malnutrition, underweight, long term fasting, long periods of not eating enough…

I agree. Being underweight could be a factor affecting how you’re feeling. Quite apart from the ME, it kind of puts someone on more of a tightrope with tiny things affecting them more than if they were a normal weight. If your digestion is also affected, that could be a factor.

You’ve clarified above that your ‘crash after eating’ is immediately or shortly after. Reactive Hypoglycaemia happens within four hours of the meal rather than immediately after. I wonder whether your feelings are something to do with your digestion or your blood pressure. There’s a condition that causes low blood pressure after eating.

However, you also say you you can read LO “at the start of the day”. This doesn’t sound like RH and you also say you ate a carby meal and didn’t crash, with your blood sugar being a perfectly normal 7.

Now you’ll quite rightly point to the LOs on your meter as contradicting that, but LO signals less than 1.1mmol. At that level someone wouldn’t just be feeling extreme tiredness, if they were still conscious they’d likely be having a seizure and/or very obvious severe symptoms. So, I still think there’s something off with the readings. As well as too little blood, dehydration can cause false lows, for example.

You do mention cortisol. I presume you were worried about Addisons?
 
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