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Very Low Blood Sugars, Not Increasing With Carbs

@hardergamer I just watched a video on a hypoglycemia patient on YouTube, which might interest you.
Hi @Rosie9876 and thanks for the interesting video
I have had that fasting test, but I also was diagnosed with a rare form of hypoglycaemia.
But my condition was diagnosed because I didn't go hypoglycaemic during the fasting test.
There are many conditions when patients go hypoglycaemic. Not just T1, T2 etc.
Because we over produce insulin for some reason, and similar to diabetes for many reasons.
And the reason why it is so rare is because only a few specialist endocrinologists have the training and knowledge of the symptoms and the diagnostic tests to diagnose which variant of hypoglycaemia it is.
 
Thanks, @Rosie9876 this is smiler to my problem.

I've been reading the correspondence between the endo team and my GP/diabetic nurse and I have "abnormal serum cortisol level" what ever that is, and I'm set to have a 9am cortisol test in 2 weeks time, and to record all food/times and BM, the things they suspect are "Cushing's syndrome" "adrenal insufficiency" "pituitary disease" or "insulinoma" my symptoms are postprandial so likely reactive, the report also says not to eat high GI carbs fast sugars, or only when sugars go below 4, but my sugars are below 3.0 95% of the time.

After reading this I can't get myself to test sugars, and i'm having trouble just thinking about food, I feel so sick and shaking etc.
 
Thanks, @Rosie9876 this is smiler to my problem.

I've been reading the correspondence between the endo team and my GP/diabetic nurse and I have "abnormal serum cortisol level" what ever that is, and I'm set to have a 9am cortisol test in 2 weeks time, and to record all food/times and BM, the things they suspect are "Cushing's syndrome" "adrenal insufficiency" "pituitary disease" or "insulinoma" my symptoms are postprandial so likely reactive, the report also says not to eat high GI carbs fast sugars, or only when sugars go below 4, but my sugars are below 3.0 95% of the time.

After reading this I can't get myself to test sugars, and i'm having trouble just thinking about food, I feel so sick and shaking etc.
You are already cross-checking your blood glucose readings, but perhaps a Dexcom cgm worn alongside the Libre would help further. They are reputed to be more accurate at low numbers, but anyway, a cross-check with gms might allow you to reduce finger pricking. If the GP won't prescribe, they might still be offering free samples.
 
You are already cross-checking your blood glucose readings, but perhaps a Dexcom cgm worn alongside the Libre would help further. They are reputed to be more accurate at low numbers, but anyway, a cross-check with gms might allow you to reduce finger pricking. If the GP won't prescribe, they might still be offering free samples.
Thanks, I will ask my GP Monday, and reading the endo report they have stopped my Libre as the reason they keep failing is that my sugars are too low, I'm going to try and start finger pricking in a bit, but I'm fighting to stay awake, but my morning sickness has now gone.
 
Can anyone tell me whey pricking certain fingers I'm getting no reading? It is always my centre two fingers on my left hand, the blood on them two seems like water, and the three testers don't work on them.

And I'm thinking of buying a Dexcom, it looks like I need the G7, but will a ONE+ work? as I can't find a 10 day G7 on Amazon, only the G7, and they cost £190 each, which I can't afford.

So if any knows if a ONE+ will work, I'll buy it now and get it tomorrow.
 
And I'm thinking of buying a Dexcom, it looks like I need the G7, but will a ONE+ work? as I can't find a 10 day G7 on Amazon, only the G7, and they cost £190 each, which I can't afford.

So if any knows if a ONE+ will work, I'll buy it now and get it tomorrow.

dont bother to buy yet get a free sample instead. if works then ask your team to prescibe that instead of the libre which is not working for you best wishes.

 
dont bother to buy yet get a free sample instead. if works then ask your team to prescibe that instead of the libre which is not working for you best wishes.

Thank you, I've just done this :)
 
Just my opinion - I've never used a Dexcom, I'm in no way an expert. I do use a Libre 2 plus and accept some inaccuracies as trends are useful for me. Also, in my experience, sensors vary, some more accurate than others, and that may well be true for Dexcom as well. Personally, in your circumstances, I would try to get a G7 because it has a better MARD, and accuracy is especially important for you. Dexcom sell them directly (I don't think Amazon do) and a single one does not cost anything near £190 - more like £50. Of course you can apply for a sample, but that may well not be a G7. And of course, your doctor should prescribe in your circumstances. All the best. x
 
@Rosie9876 I see the G6 G7's are £52 + tax so about £62 for a 10 day, but the G6 on Amazon is an 30, maybe it's just 3x 10 days?, I've ordered a free ONE+, and will massage my GP/nurse on Monday. But the only next appointment available is 1st of Aug, so hoping they can sort it out before then.

But I don't know what this means but as I've switched back to slower carbs with meat etc, not just 3,000+ cal's in carbs per day, which 75% were from fast sugary carbs, my sugars are staying around 5.8-6.2, I don't know what they were this morning as I was very unwell and could hardly see or think.

I'm going to link some of the endo Dr advice to my GP's.
 
From Endocrine Dr Torbay.

Medical Practice (General Practice) - Mrs Louise #### (Medical Secretary Access Role)

  • Note - History: A&G response from Endocrinology; Plan: GILROY, Michael #### (Dr) Thu 17-Jul-2025 at 17:13; ; Dear Aaron ####, Advance Clinical Practitioner; ; main symptoms are postprandial - so likely reactive; ; CGM such as Frestyle Libre sensors are not useful for investigation of low blood glucose. Or managemtn of patients who are non diabetic with suspected low glucose values; ; CGM devices only need to be withn 1.1mmol/L of a reference capilliary glucose of <5.6; Capilliary meters only need to be with 0.83 of a true lab reading 95% of the time if <5.6; CGM devices are particularly prone to low readings due to compression; ; Proper physical evidence is key here. I have been caught out with patient incorrectly reporting the frequency of events leading to inappropriate extensive investigation. They never brought the meter to clinic...; Only use capilliary readings and only believe them if you look at the meter and see them.; Do not rely on patient reporting of values.; Find out what the pattern of reported low blood glucose [capilliary, not CGM]; ; Ask your patient to do Capilliary blood glucose readings when they have symptoms.; Ask your patient to record them in a diary and write down any meals they have had before the reading [incase of possible reactive hypoglycaemia so they can avoid them]; Teach you patient how to treat a hypo, 15-20grams glucose, repeat in 15-20 minuites if capilliary blood glucose is less than 4 AND SYMPTOMATIC; When you review these ensure you see them on the meter.; ; True hypoglyceamia that needs investigated [if not reactive] probably needs to be less than 2.2 [possibly 2.5] of fingerprick values.; Hypoglycaemia that occurs overnight that is not post pradial is more associated with insulinoma [but no way diagnostic]. Insulinoma patients often gain weight as they adopt eating strategies to avoid symptoms.; Ensure you patient does not have a liver problem that could mean reduced glycogen storage,; Consider reactive hypoglycaemia, medication abuse, alcohol, etc. Are there any features of cortisol deficiency [tan, postural hypotension]; ; BW; Mike; ; tasked to AC
Test result - Serum cortisol level Report, Abnormal, Need to repeat test.
Coded entry - Serum cortisol level (XE2xW) 71 nmol/L; Dexa suppression test?:No; On prednisolone or dexa?:No; BLEEP: [NOT KNOWN]; Clinical History :erratic BMs; Clinical context is mandatory for interpretation of cortisol levels; SUSPECTED ADRENAL INSUFFICIENCY; Measure 9am if there is a specific concern. People with adrenal insuff; iciency usually have several of weight loss, hypotension, salt; craving, low Na, high K, hypoglycaemia, pigmentation, fatigue, autoimm; une history, pituitary disease, previous prolonged steroid use.; Thresholds provided are for 9am cortisol. Cortisol is naturally lower; at other times.; Cortisol >420 excludes diagnosis of adrenal insufficiency.; Cortisol >275 excludes with 98-99% predictive value. Consider furthe; r testing only if high clinical suspicion.; Cortisol <150 is concerning. If 9am level, discuss with endocrine t; eam.; Cortisol 150-275 is uninformative (not low or borderline). If there; was clinical concern for adrenal insufficiency, further testing is; required: suggest repeat 9am cortisol level (any one result >275 or >4; 20 is sufficient) and if result remains indeterminate, please discuss; with endocrine team. If there was no clinical suspicion, further testi; ng is not required (e.g. unintentionally requested).; SUSPECTED CUSHING'S SYNDROME; Discuss with endocrine team.; Do not measure serum cortisol, except on endocrine advice or as part o; f dexamethasone suppression test.; 9am or random cortisol is of no value in diagnosing or excluding Cushi; ng's syndrome.; PATIENT ON STEROIDS; Checking cortisol in these situations is often inappropriate. Exogeno; us steroids will naturally suppress endogenous cortisol levels. Take; care with interpretation, and discuss with endocrine team if unsure.; In some situations, a 9am cortisol taken BEFORE the patient has taken; any oral steroids can help to predict ability to wean off steroids,; but this approach is not routinely recommended.; Specimen Source: Blood, Venous; Performing Lab: BLOOD SCIENCES (TSD)

I just add I don't drink, but I did drink around 8-24 4.5% can's of cider per week 5+ years ago, I don't do any drugs apart from what's prescribed to me, Diazepam 5mg, Citalopram 30mg, Omeprazole 2x 20mg, Famotidine when needed, and Thiamine & vit D/B, but been on opioids for pain from 2015 to 2022 after a bad bike crash, I never used steroids.

But I do think I've had this light-headed feeling sick and burning up for around 30 years, as I remember it starting when I was 17, but after eating it would disappear, apart from burning up all my adult life.

But I never tested my bloods sugars on waking, as they were always normal when checked later in the day onces a week at my dads whose type 2.
 
Because you went hypoglycaemic during your fasting test, it is not reactive hypoglycaemia.
I would wait for the other tests. The cortisol test will provide a lot more information. And as usual it's another step. They do suspect Cushings, but, there could be many other conditions out there.
At this moment in time, if you can, use a CGM, if you can.
If using finger pricking, text before first meal of the day, because on waking, you may get an skewed reading. Better after being awake for about half an hour.
Pre meal and two hours after first bite. Is usually how to see how your meals affect your BG levels post prandial. A food diary will also be useful to log your meals, your readings and as much detail as you can.
Best of luck.
 
Because you went hypoglycaemic during your fasting test, it is not reactive hypoglycaemia.
I would wait for the other tests. The cortisol test will provide a lot more information. And as usual it's another step. They do suspect Cushings, but, there could be many other conditions out there.
At this moment in time, if you can, use a CGM, if you can.
If using finger pricking, text before first meal of the day, because on waking, you may get an skewed reading. Better after being awake for about half an hour.
Pre meal and two hours after first bite. Is usually how to see how your meals affect your BG levels post prandial. A food diary will also be useful to log your meals, your readings and as much detail as you can.
Best of luck.
I've never done any fasting, my very low sugars of 1.3 were after eating 1,500 cal's in carbs, and most times when I've eaten sugary carbs of Dextro, my sugars drop within minutes, only onces have they raised and that was just 14 minutes after eating Cola Tops, when they went to 10.6, then back down below 3 with-in a hour.

I just add, today my sugars were 4.8 midday before eating lunch, and 40 minutes after eating 2x jackets potatoes with cheese they went up to 8.2, and now 5.6, 30 minutes after eating some nuts then porridge, which is strange as for over a week they were under 2.9, apart from the odd spike to 4.1, and all that I have changed is stopping fast carbs.

I'm still going to use a CGM :)
 
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I've never done any fasting, my very low sugars of 1.3 were after eating 1,500 cal's in carbs, and most times when I've eaten sugary carbs of Dextro, my sugars drop within minutes, only onces have they raised and that was just 14 minutes after eating Cola Tops, when they went to 10.6, then back down below 3 with-in a hour.

I just add, today my sugars were 4.8 midday before eating lunch, and 40 minutes after eating 2x jackets potatoes with cheese they went up to 8.2, and now 5.6, 30 minutes after eating some nuts then porridge, which is strange as for over a week they were under 2.9, apart from the odd spike to 4.1, and all that I have changed is stopping fast carbs.

I'm still going to use a CGM :)
Sorry, cracking up here!
I have just read and re-read, and re-read the report again.
that was quite similar to my first report after my first extended oral glucose tolerance test.
I'm still not convinced it is reactive but as always you need the tests to rule out other conditions first.
However, just a add on to go along with the food diary is to experiment with some carbs, while your BG levels are normal. You will always get a skewed reading when your BG levels are low or high, normal is between 3.5-6mmols.
the other main point of my hypoglycaemic condition. Non diabetic Late Reactive Hypoglycaemia.
is my intolerance to a lot of carbs, never mind slow acting carbs. Particularly wheat, oats, spuds, sugar, even some oils and fats.
it took quite a while to find those foods that I shouldn't have. And to find the right balance of foods that I could eat.
there is a sub forum for reactive hypoglycaemia, with lots of threads of people's experience of getting some sort of getting their lives back to somewhere near normal.
Keep asking.
sorry about the post earlier.
Best wishes
 
Sorry, cracking up here!
I have just read and re-read, and re-read the report again.
that was quite similar to my first report after my first extended oral glucose tolerance test.
I'm still not convinced it is reactive but as always you need the tests to rule out other conditions first.
However, just a add on to go along with the food diary is to experiment with some carbs, while your BG levels are normal. You will always get a skewed reading when your BG levels are low or high, normal is between 3.5-6mmols.
the other main point of my hypoglycaemic condition. Non diabetic Late Reactive Hypoglycaemia.
is my intolerance to a lot of carbs, never mind slow acting carbs. Particularly wheat, oats, spuds, sugar, even some oils and fats.
it took quite a while to find those foods that I shouldn't have. And to find the right balance of foods that I could eat.
there is a sub forum for reactive hypoglycaemia, with lots of threads of people's experience of getting some sort of getting their lives back to somewhere near normal.
Keep asking.
sorry about the post earlier.
Best wishes
Thank you, @Lamont D, I'll look up the sub forum for reactive hypoglycaemia, and what you are describing does sound like what I'm going through, as I explain below.
And it really helps me just getting someone's opinion, and what you and others have gone through, all feed back has helped with my stress, and the feeling I'm alone.

I have an update, for the last 3 days my sugars have been in range, apart from high's, they are still dropping after sugary carbs, but, only a little, like I eat a banana and 200g of black grapes and 2 muller strawberry yogurts and my sugars went from 5.8 before eating, to 4.2 30 minutes after, then 1 hour later again I retested, and they were 11.2, but dropped back to 5.6 around 90 minutes later still.

This "dropping" seems to be happening after fruit, biscuits, but it could be most if not all carbs, and seems more stable when I eat foods with all 3 macros, and after eating Mackerel, they stay the same mostly.

The only thing I've changed is my diet, I've stopped eating high GI carbs before bed and in the middle of the night 2–3 times, and on waking, and I slept for 10 hours without any midnight snacks last night and on waking 5.3.

Now on waking I'm not eating loads of fruit or sugary breakfast bars that are very high in sugar, I'm now starting my day with porridge then a sliced beef sandwich, then nuts etc, and I feel better eating meat and fish again, as I stopped eating all meat or fish for the last 17 months, as it was triggering the extreme pain in my upper stomach.

Of course, I'll still be following my GP/Endo advice, as I need more tests doing as I still have the pain, which the PPI's are helping me with, the pain is from pancreatitis, and probably GERD, but I've never had acid or other symptoms of GERD. I was curled up in pain for over a year, losing 7 stone from not being able to eat, but 20 minutes after taking the first Omeprazole most of my pain went away.

And to think a Dr prescribed me Glyceryl Trinitrate and Statins and for over a year, telling my it was my heart, which 14 months later was shown to be wrongly diagnosed, so stopped taking them.

I need to find out why changing my diet around helped with my sugars so much, and I really hope it's not just a coincidence? My GP told me pancreatitis comes and goes in some people, but could pancreatitis really keep my blood sugars to stay below 2.9 for 30 days, and what does it mean that now they're going up to 10.6 or 11.2 after eating...
 
I need to find out why changing my diet around helped with my sugars so much, and I really hope it's not just a coincidence? My GP told me pancreatitis comes and goes in some people, but could pancreatitis really keep my blood sugars to stay below 2.9 for 30 days, and what does it mean that now they're going up to 10.6 or 11.2 after eating...
Personally, I think this is why you need an appointment with an endocrinologist not a GP. Specialist endocrine conditions are generally outside their expertise and they may not even have heard of them. (I know I don't expect my GP to know much about T1, and that is the second most common form of diabetes.) Really really glad to hear that you are currently not experiencing the debilitating lows and hope that you get some clarity when you finally see the experts.
 
Thank you, @Lamont D, I'll look up the sub forum for reactive hypoglycaemia, and what you are describing does sound like what I'm going through, as I explain below.
And it really helps me just getting someone's opinion, and what you and others have gone through, all feed back has helped with my stress, and the feeling I'm alone.

I have an update, for the last 3 days my sugars have been in range, apart from high's, they are still dropping after sugary carbs, but, only a little, like I eat a banana and 200g of black grapes and 2 muller strawberry yogurts and my sugars went from 5.8 before eating, to 4.2 30 minutes after, then 1 hour later again I retested, and they were 11.2, but dropped back to 5.6 around 90 minutes later still.

This "dropping" seems to be happening after fruit, biscuits, but it could be most if not all carbs, and seems more stable when I eat foods with all 3 macros, and after eating Mackerel, they stay the same mostly.

The only thing I've changed is my diet, I've stopped eating high GI carbs before bed and in the middle of the night 2–3 times, and on waking, and I slept for 10 hours without any midnight snacks last night and on waking 5.3.

Now on waking I'm not eating loads of fruit or sugary breakfast bars that are very high in sugar, I'm now starting my day with porridge then a sliced beef sandwich, then nuts etc, and I feel better eating meat and fish again, as I stopped eating all meat or fish for the last 17 months, as it was triggering the extreme pain in my upper stomach.

Of course, I'll still be following my GP/Endo advice, as I need more tests doing as I still have the pain, which the PPI's are helping me with, the pain is from pancreatitis, and probably GERD, but I've never had acid or other symptoms of GERD. I was curled up in pain for over a year, losing 7 stone from not being able to eat, but 20 minutes after taking the first Omeprazole most of my pain went away.

And to think a Dr prescribed me Glyceryl Trinitrate and Statins and for over a year, telling my it was my heart, which 14 months later was shown to be wrongly diagnosed, so stopped taking them.

I need to find out why changing my diet around helped with my sugars so much, and I really hope it's not just a coincidence? My GP told me pancreatitis comes and goes in some people, but could pancreatitis really keep my blood sugars to stay below 2.9 for 30 days, and what does it mean that now they're going up to 10.6 or 11.2 after eating...
Interesting questions!!
The simple answer is I just don't know.
It's not unusual to go through change and discover that something actually works,
To stay in hypoglycaemic levels that long could be the pancreatitis, but I could be talking rubbish.
However, getting normal BG levels, and seeing the result of carbs post prandial, and the mixed meal with carbs is not surprising. It would be interesting to find when you spike if your BG levels pre meal are in normal levels. My spike is roughly 40-45 minutes after starting to eat, if I have carbs.
I have omeprazole if I get indigestion. It is supposed to help my gut health.
There are so many pitfalls with food. I was told that porridge was a superfood. That low fat was good for you. Healthy carbs, and I soon found out after being ill for so many years. That these so called healthy carbs were definitely not, for me, healthy.
Those carbs were literally killing me.
Until you get those tests, it is all guess work, but you can experiment.
Best wishes
 
As I'm in my 4th day with normal BG (4.5 to 7.6 today), I'm going to switch back to my high fast carb diet tonight to see if it drops again, I will only be doing this from around 9pm tonight, till midday tomorrow, this may help the endocrinologist who's working with my GP and the diabetic Dr.
All my data will be given to them on the 1st august, like they have asked, it may not change, but then my BG did get better after stopped eating so much sugar/carbs, and I am still seeing a 1.0 to 1.6 drop 15–20 minutes after eating grapes.

@EllieM I'm booked in to see the endocrinologist on the 15th of December, which is the first appointment available, this is why they are guiding my GP and diabetic Dr, this is the problem around here, we have had 6 hospitals closed recently with 4 more closing this year, all because from the lack of staff, also I've been told to expect to need to wait even longer, as we have junior doctor strikes just starting across the UK, which, if like last time it could last years.

NHS Hospitals are meant to see you for your first appointment before 18 weeks after GP referral in England, but the average here in the SW is 26 weeks, and I had to wait just over 4 years to have a tumour looked at.
My GP was made aware of it in 2017, and it was removed in 2022, that's how long things like this can take here sadly now.

Just to make clear the "6 NHS hospitals closed recently with 4 more closing this year," all closed with in 20 miles of me, the 2 major hospitals in Devon, Derriford and Torbay are operating on a skeleton crew, as this is why I was asked to leave even with my BG at 2.9, as there is simply no staff to run the wards, and why they had around 20 ambulances being used for beds.
 
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wondering why choosing nighttime for testing? tbh if were going to test against drops i'd do it during daytime as when awake rather than asleep would surely be safer so can do something about it if goes very very low. you got someone with you ok?
 
wondering why choosing nighttime for testing? tbh if were going to test against drops i'd do it during daytime as when awake rather than asleep would surely be safer so can do something about it if goes very very low. you got someone with you ok?
I'm not testing in the middle of the night, I'm waking up to eat surgery carbs, like I was doing when my BG was staying under 3.0, but before I had a Libre 2 on, so its alarm kept going off, as they were dropping to 2.3 every night.

I'm about to go to bed, and I've already had 8 Dextro tabs, around 176g of glucose, and other fast carbs like soft bakes, so If I have a dip when testing on waking, I will know it's fast carbs that's triggering my problem, then I try different foods to find out which or if all fast carbs are causing it. I have 10 days to try this before I see my GP next, and they and the endo Dr want my to record every thing.

And no, I live by myself, and I'm disabled.
 
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