Any and all advice welcome!

[sugar_is_not_my_friend]

Hi everyone! Looking for some general advice on life with sugar issues, CGMs, etc but will explain my weird sugar story too...

So at the beginning of last year I had been struggling with fatigue for a while, and a family member (T2DM) suggested I check my blood sugars. I did (I had other symptoms too) and was having a hypo. Checked more regularly and realised I was having them fairly often. I got checked out at the GP. First time I was told it was normal and nothing to worry about, second time had bloods that were all normal and after many back and forth GP appointments, I finally was referred to the endocrinology clinic. I waited 6 months for an appointment to be told it could be reactive (I have no food triggers, already worked with the GP on that one) and to eat every 1-2 hours, try that and if that doesn't work I could be put on metformin and if that didn't work be referred back to them for more investigations.

Currently I am trying the eating method but I honestly hate it. Over the past year I have gained over 10kg which sucks and I can't follow a proper diet because I'm having to eat something small every couple of hours. But equally, I don't really want to go on Metformin as I've heard bad things. So I don't really know what to do anymore.

I have a CGM because my blood sugar hates me and loves to randomly drop (not ideal for day to day life). I have to self fund it because I don't have diabetes so I pay over £100 a month for the dexcom one plus patches which also cause my skin to itch due to an adhesive allergy (currently trialling the under patch).

It's been really difficult over the past year and isolating as I'm neither diabetic or "normal" when it comes to my blood sugar. I would just appreciate any advice or tips or just to know that there's other outliers like me!

Apologies for the long post (and all the brackets) and thanks for putting up with me 🙂

 

[Leadinglights]

Hi everyone! Looking for some general advice on life with sugar issues, CGMs, etc but will explain my weird sugar story too...

So at the beginning of last year I had been struggling with fatigue for a while, and a family member (T2DM) suggested I check my blood sugars. I did (I had other symptoms too) and was having a hypo. Checked more regularly and realised I was having them fairly often. I got checked out at the GP. First time I was told it was normal and nothing to worry about, second time had bloods that were all normal and after many back and forth GP appointments, I finally was referred to the endocrinology clinic. I waited 6 months for an appointment to be told it could be reactive (I have no food triggers, already worked with the GP on that one) and to eat every 1-2 hours, try that and if that doesn't work I could be put on metformin and if that didn't work be referred back to them for more investigations.

Currently I am trying the eating method but I honestly hate it. Over the past year I have gained over 10kg which sucks and I can't follow a proper diet because I'm having to eat something small every couple of hours. But equally, I don't really want to go on Metformin as I've heard bad things. So I don't really know what to do anymore.

I have a CGM because my blood sugar hates me and loves to randomly drop (not ideal for day to day life). I have to self fund it because I don't have diabetes so I pay over £100 a month for the dexcom one plus patches which also cause my skin to itch due to an adhesive allergy (currently trialling the under patch).

It's been really difficult over the past year and isolating as I'm neither diabetic or "normal" when it comes to my blood sugar. I would just appreciate any advice or tips or just to know that there's other outliers like me!

Apologies for the long post (and all the brackets) and thanks for putting up with me 🙂

It can be very worrying when people appear to be a medical mystery but there is usually an explanation.
When you are eating what are you actually eating. If it is high carb then you could be reacting by overproducing insulin which will lower blood glucose.
What did your CGM reveal? Do the low levels happen during the night as well meaning you are then needing to eat.
Have you had an HbA1C test to look at what happens over a 3 month period of time.

 

[Inka]

Welcome @sugar_is_not_my_friend 🙂
When you get the Low sugars on your CGM, are you checking them with a finger prick test?
Can you upload a pic of your CGM graph for a day here?
How high is your highest sugar?
Sorry for the personal question but are you overweight?
Why was the Metformin suggested (presumably because you have some insulin resistance?)?

All your tests are normal, you’ve said, and you’re only young, so I would just ditch the CGM and get on with your life. I think it’s not unusual for young women to have feelings of low blood sugar. I remember a friend had them when we were at uni. She kept feeling funny, especially if she hadn’t eaten for a while. No cause was found and she just made sure to eat properly. When I saw her years later at a wedding,I asked about it because we were talking about my diabetes and she said it didn’t really happen any more.

 

[sugar_is_not_my_friend]

It can be very worrying when people appear to be a medical mystery but there is usually an explanation.
When you are eating what are you actually eating. If it is high carb then you could be reacting by overproducing insulin which will lower blood glucose.
What did your CGM reveal? Do the low levels happen during the night as well meaning you are then needing to eat.
Have you had an HbA1C test to look at what happens over a 3 month period of time

Unfortunately, it doesn't seem to matter what I eat, whether high or low carb. I spent some time making a food diary and recording hypos to see if there was any correlation and didn't notice anything. Common triggers like alcohol also have no effect.

CGM doesn't reveal a huge amount but does show that I get hypos. I like it in order to keep track of my sugars and trends as I can sometimes be in areas where it can be difficult to take 5 to eat. I sometimes get low during the night, though this isn't a regular occurrence. Worse one at night was waking up feeling rough and finding out I had been going progressively lower over the hour previous. I do get night sweats a lot but I'm not sure if this is linked, in all honesty I'm usually pretty dopey at that time

My HbA1C was checked when I presented to the GP but this was normal.

 

[sugar_is_not_my_friend]

Welcome @sugar_is_not_my_friend 🙂
When you get the Low sugars on your CGM, are you checking them with a finger prick test?
Can you upload a pic of your CGM graph for a day here?
How high is your highest sugar?
Sorry for the personal question but are you overweight?
Why was the Metformin suggested (presumably because you have some insulin resistance?)?

All your tests are normal, you’ve said, and you’re only young, so I would just ditch the CGM and get on with your life. I think it’s not unusual for young women to have feelings of low blood sugar. I remember a friend had them when we were at uni. She kept feeling funny, especially if she hadn’t eaten for a while. No cause was found and she just made sure to eat properly. When I saw her years later at a wedding,I asked about it because we were talking about my diabetes and she said it didn’t really happen any more.

Hi Inka!

Yep, always check when they say that I'm low or high (says I'm high at times but never actually been high, not sure why that happens).
I can't use todays as its the first day of this CGM so it's pretty inaccurate but can either do it in a couple of days or try and use the apple health one.
Highest registered sugar by finger prick has only been 8.9 I think, but it has shown it higher on my dexcom but I've checked and its different in reality.
So I wasn't overweight initially. When I first noticed them I was classed as having a healthy BMI. Now I have put on weight, my BMI is now too high but in terms of look I have a bit of chub but I wouldn't say I look overweight if that makes sense
I don't really know. They suggested I could be in the really really early stages of T2DM but I'm only 22 and I don't really have any risk factors so think it was more of an easy trial before more testing is needed.
In all honesty I don't really feel safe to ditch the CGM as when I do have a hypo I can barely walk as I get so weak and being based in hospitals I also need to make sure I am top of my game if that makes sense. I find the whole thing really stressful because I don't know why this started or anything. It tires me out so much when I do have multiple hypos in a day.

 

[Inka]

How low is your blood sugar when you have a hypo @sugar_is_not_my_friend ?

8.9 is fine, and unlikely to be high enough to produce a ‘reactive’ reaction. In the early stages of Type 2, sometimes blood sugar will go high then the insulin will kick in too late and too much, causing a drop, but in those cases the higher sugar that triggers the drop is more like 12 or 14 or whatever.

Some people are just more sensitive to the movements of blood sugar, and some people need to eat regularly whereas others don’t. My mum (who doesn’t have diabetes) always has to eat regularly else she feels ‘funny’.

In your position, I’d ditch the CGM because it’s clearly not preventing you having these suspected hypos so is a waste of money. I’d also stop all the eating. Eating every hour or so is over the top IMO. It would be more sensible to just eat regularly, including snacks, and ensure you’re choosing healthier carbs and enough protein.

 

[rebrascora]

Hi. Which BG meter were you using to check your levels initially which was showing you as hypo? Do you still have/use that meter? The reason I ask is that I know of 2 BG meters which give false low readings when you do not get enough blood on the test strip.

CGMs are not totally reliable either, but it would be useful if you could share some of your typical daily graphs with us so that we can see what is happening. One of the quirks of CGM is that they can be prone to what we call "Compression lows" This can happen when you apply pressure to the sensor for a significant length of time, usually 20 mins or more. It can most frequently happen during your sleep when you lie on the sensor and that compresses the tissue under the sensor that the filament is sampling, causing it to give false low readings and the low alarm to go off if you have it set. It is however not unusual for normal non diabetic people to drop a little below 4 during the very depths of their sleep, so a reading between 3.5 and 4 might be reasonably normal for some people between say 1am and 3am but a reading lower than that is likely a compression low unless you are using insulin or other BG lowering medication.
Do you check any of these night time lows with a finger prick? In fact any low or high readings should be verified with a finger prick because CGM are not particularly accurate above and below range and have these other quirks like the compression lows mentioned.


Reactive Hypoglycaemia is where the body's insulin response is a bit slow, so if you eat high carb foods, your levels rise sharply because the insulin hasn't been released to deal with the glucose from those carbs and your levels go too high (I would expect mid teens) and then your body releases too much insulin and your levels come crashing back down quickly which in itself can feel bad, but because there is too much insulin, you then end up too low.
If you can avoid eating the high carb foods which cause it to spike then you can usually prevent the crash that follows them. This isn't just about sugar as your user name suggests but all carbohydrates and particularly the ones which are easily digested, so yes sugar and high carb fruits like bananas and fruit juice and smoothies, but also bread and potatoes, especially mashed potatoes and perhaps pasta unless it is served with a creamy sauce and rice and breakfast cereals. Depending upon your digestive system, even porridge may trigger it. Porridge is like rocket fuel in my digestive system but lives up to it's slow release reputation with other people. Speed of digestion of particular carbohydrates can be quite individual.

If you are genuinely suffering from Reactive Hypoglycaemia (RH) then identifying and avoiding the type of carbs which trigger it will be important in managing it, but you need a reliable system to test. I would expect the hypos to happen about 2 hours after carb rich meals, but not during the night unless you ate just before going to bed and the lows would be preceded by a significant spike in levels and then a sudden drop.

Are you seeing spikes up into the mid teens regularly with the Dexcom?
What is the highest reading you have had and what had you eaten to cause that rise?

 

[Inka]

8.9 is her highest reading @rebrascora so fine. It doesn’t sound like Reactive Hypoglycaemia to me as that’s diagnosed by a hospital test so a diagnosis would be given. Some people, particularly young women, are just more sensitive to blood sugar ups and downs.

 

[Leadinglights]

Have you had any other tests to check hormone levels. In somebody who is not diabetic which It seems you are not if your Hba1Cis normal then the liver releases stored glucose in response to low blood glucose, if this is not happening for some reason because the trigger is absent or you have very little stored glucose your glucose level may then be low until you eat something.
You may be producing too much insulin for the amount of carbohydrate you are eating despite eating frequently.