Please help, One x toast x 4hrs = 14.6mmol

[MillieT]

Hi, I spoke with the diabetic community nurse this morning and had said i've always suffered from what i think is dawn phenomenon, i.e. this morning when I woke up i was on 13.7mmol and as such didn't wish to eat any carbs because I just don't wish to go any higher, sugars over 9mmol affect me really badly so hence why before i feel happier trying keto. Anyhow, when we spoke she said to double my dosage of Gliclazide to 2 x 80mg on a morning and see how I go and that I must eat some carbs to balance it out so that i don't return to Dka.

So, I took 2 x 80mg of Gliclazide, as anticipated and I told her if i eat 1 slice of toast I pass out soon afterwards and need to sleep for an hour or two and usually, i feel ok when I wake up again, however, I've slept for 2.5 hours and been up a further 45 minutes and my sugars are now on 14.6mmol.. this just cannot be right, i done as she required and had 1 slice of wholegrain toasted bread with egg. My chest is tight, i feel like my head is going to explode and my eyes are being forced out, I feel sick and very dizzy, my ketones are just 0.2mmol.

14.6mmol for me is like a non diabetic having 2-3 bottles of wine or a few shots, i'm not sure where to go with this, she has ordered me another weekly shot of dulaglutide for Friday- not sure i want any of it to be honest, sadly, the best i've felt for a long time was when i first go into ketosis on a low - 0 carb diet.

Please please can anyone help enlighten me with any thoughts, I'm not asking for treatment or anything as such, I just want to feel normal whatever that is, i'm tired of feeling dreadful.

 

[Antje77]

Have you had a C-peptide test to see how much insulin you are producing?

 

[MillieT]

Have you had a C-peptide test to see how much insulin you are producing?

I can't find anything in the paperwork from my hospital visit last week to say, they did give me IVF to help remove the ketones and get my sugar levels down. Maybe i should give her another call.

 

[MillieT]

I just called the surgery but they can't help today so i have to try in the morning, they can tell me if i had a recent C peptide test.

 

[oldgreymare]

Hi, I spoke with the diabetic community nurse this morning and had said i've always suffered from what i think is dawn phenomenon, i.e. this morning when I woke up i was on 13.7mmol and as such didn't wish to eat any carbs because I just don't wish to go any higher, sugars over 9mmol affect me really badly so hence why before i feel happier trying keto. Anyhow, when we spoke she said to double my dosage of Gliclazide to 2 x 80mg on a morning and see how I go and that I must eat some carbs to balance it out so that i don't return to Dka.

So, I took 2 x 80mg of Gliclazide, as anticipated and I told her if i eat 1 slice of toast I pass out soon afterwards and need to sleep for an hour or two and usually, i feel ok when I wake up again, however, I've slept for 2.5 hours and been up a further 45 minutes and my sugars are now on 14.6mmol.. this just cannot be right, i done as she required and had 1 slice of wholegrain toasted bread with egg. My chest is tight, i feel like my head is going to explode and my eyes are being forced out, I feel sick and very dizzy, my ketones are just 0.2mmol.

14.6mmol for me is like a non diabetic having 2-3 bottles of wine or a few shots, i'm not sure where to go with this, she has ordered me another weekly shot of dulaglutide for Friday- not sure i want any of it to be honest, sadly, the best i've felt for a long time was when i first go into ketosis on a low - 0 carb diet.

Please please can anyone help enlighten me with any thoughts, I'm not asking for treatment or anything as such, I just want to feel normal whatever that is, i'm tired of feeling dreadful.

This does sound very stressful and given so much evidence that dawn phenomena, feet on floor, etc, can increase insulin resistance it does seem counterintuitive to have carbs for breakfast (or even have any breakfast) if you are already in a very high BG zone.

I'm not in a position to tell you not to follow your DN's advice, but if you use a meter to monitor BGs, perhaps take your prescribed drugs, maybe eat keto and monitor BGs but only add glucose tabs if going below 5 mmol? But you do need to monitor frequently.

 

[EllieM]

Have you ever seen an endocrinologist about your diabetes, or just the GP/DN? Given that you've had an episode of DKA I'd hope that you'd qualify for slightly more informed treatment than that supplied by your GP. (Maybe I'm being naive as I'm twenty years out of touch with the UK diabetic system?).

I agree with @Antje77 that the results of a cpeptide test would be really useful. DKA is normally associated with lack of insulin (in T1s) but I know that T2s can also get it, and lack of insulin should hopefully not be an issue for them.

I hope that you manage to get your levels sorted soon so that you start feeling better. Lots of virtual hugs.

 

[VashtiB]

Hi @Millie_

I agree with @Antje77 and @EllieM. I really think you need further investigation. It sounds really scary. Are you able to talk to your doctor and maybe get a referral to a specialist. You may also want to consider investing in one of the meters that does the continuous readings. That may give some insight into what is happening. If you combine that with logging your meals (carb intake) and your medication that may help.

Virtual hugs.

 

[Swillbos]

It is so hard and conflicting when you want to have faith in your medical team, but it doesn't seem to be working, I am sure the emotional stress of that must be making things worse.

I was re-diagnosed as LADA rather than type 2 a couple of years ago, and while everyone's diabetic journey is different, it is something to consider. After seven years of managing reasonably (never spectacularly) well on variously (i) diet only (ii) diet and Metformin (iii) diet, Metformin and intermittent fasting, things rapidly spiralled out of control: I simply couldn't get my numbers below ten, started Gliclazide, expecting great things as I had initially had great success with Metformin.

Glic had absolutely zero impact on my numbers, the dose was doubled, still nothing....told to give it a few weeks, still nothing....I was told to stop the intermittent fasting to try to rule out that as a source of ketones, my numbers were almost constantly in the 15-20 range on generally c.50-100g carb per day. Even typing this now I can recall my stress being through the roof, not to mention the sleep deprivation through constant thirst and peeing!

After a couple of months I ended up with a hospital appointment and started on a low dose of long-acting insulin while waiting for the results of blood tests. The impact was almost immediate both on bloods and on my sense of well-being/calm. It was a couple of months before I had confirmation of my new diagnosis, which was via the anti-body (GAD) test rather than C-Peptide test, which was not done. Having another autoimmune disease (Thyroid in my case), is also associated with LADA, and might possibly be something for you to think about?

Good luck, and everything crossed for you.

Susan x

 

[HSSS]

Hi, I spoke with the diabetic community nurse this morning and had said i've always suffered from what i think is dawn phenomenon, i.e. this morning when I woke up i was on 13.7mmol and as such didn't wish to eat any carbs because I just don't wish to go any higher, sugars over 9mmol affect me really badly so hence why before i feel happier trying keto. Anyhow, when we spoke she said to double my dosage of Gliclazide to 2 x 80mg on a morning and see how I go and that I must eat some carbs to balance it out so that i don't return to Dka.

So, I took 2 x 80mg of Gliclazide, as anticipated and I told her if i eat 1 slice of toast I pass out soon afterwards and need to sleep for an hour or two and usually, i feel ok when I wake up again, however, I've slept for 2.5 hours and been up a further 45 minutes and my sugars are now on 14.6mmol.. this just cannot be right, i done as she required and had 1 slice of wholegrain toasted bread with egg. My chest is tight, i feel like my head is going to explode and my eyes are being forced out, I feel sick and very dizzy, my ketones are just 0.2mmol.

14.6mmol for me is like a non diabetic having 2-3 bottles of wine or a few shots, i'm not sure where to go with this, she has ordered me another weekly shot of dulaglutide for Friday- not sure i want any of it to be honest, sadly, the best i've felt for a long time was when i first go into ketosis on a low - 0 carb diet.

Please please can anyone help enlighten me with any thoughts, I'm not asking for treatment or anything as such, I just want to feel normal whatever that is, i'm tired of feeling dreadful.

I echo others in that you need more support from a specialist. Having has a dka that should be happening and if it’s not then ask for a referral.

Regardless of anything else you eat carbs to “balance” out glicazide if you’ve taken more than your body needs. It’s adding glucose (carbs) after you’ve removed it (meds) to avoid going too low in bgl. Don’t remove as much and you don’t need to add as much. Dka usually involves both high bgl levels and high ketones (not nutritional ketosis levels). If you can avoid the high bgl that removes much of the risk and adding carbs increases bgl. It all seems a little crazy. Hence why I think you need better support and some results on exactly what your own insulin is actually doing before adding more and more meds based on assumptions. In the meantime more testing, on waking, before and after meals (with a log of what you ate) and when you feel unwell/excessively sleepy etc to give the specialist lots of information about what’s happening to you and when.

 

[Sarah69]

Why do you pass out after having toast?

 

[MillieT]

Why do you pass out after having toast?

I've honestly no idea though not just toast, i was told to have porridge and 30grams takes me to and above 28mmol so i refuse to eat it now, i had 15g or mash potato with dinner last night and have woken up on 16.3. I noticed 3 hours after I took 2 Gliclazide last night I actually went down to 10mmol prior to eating so hence why i'm higher today.

Any carb like potato, porridge, toast- all starchy i think does the same to me, i honestly just can't even stand up straight, when i wake up again i'm fine.

 

[HSSS]

I've honestly no idea though not just toast, i was told to have porridge and 30grams takes me to and above 28mmol so i refuse to eat it now, i had 15g or mash potato with dinner last night and have woken up on 16.3. I noticed 3 hours after I took 2 Gliclazide last night I actually went down to 10mmol prior to eating so hence why i'm higher today.

Any carb like potato, porridge, toast- all starchy i think does the same to me, i honestly just can't even stand up straight, when i wake up again i'm fine.

That’s because type 2 simply cannot deal with carbs. Many of us would have scary numbers if we ate these foods. We don’t because we don’t. It’s mad we are told to eat them at every meal, almost negligent.

Have you seen these explanations?
Intro to T2 and low carb. https://www.diabetes.co.uk/forum/blog-entry/the-nutritional-thingy.2330/
All the things I wish I’d been told earlier https://www.diabetes.co.uk/forum/th...ish-i’d-been-told-at-type-2-diagnosis.173817/

 

[HSSS]

Any carb like potato, porridge, toast- all starchy i think does the same to me, i honestly just can't even stand up straight, when i wake up again i'm fine.

Test before you go to sleep. I strongly suspect it’s because your levels go sky high and a common effect of that is sleepiness. By the time you wake they’ve started to fall (test again) and that’s why you feel less awful. The testing proves it’s the food causing the levels and the problems without bias. The solution really is don’t eat the carbs. Then you also won’t need to increase the medication.

Please keep checking bloods though as removing the carbs means the medication could take you lower than you wan to be. Solution again is to to take less medication if that’s happening or approaching in likelihood, not increase the carbs and start the cycle off again

 

[MillieT]

It is so hard and conflicting when you want to have faith in your medical team, but it doesn't seem to be working, I am sure the emotional stress of that must be making things worse.

I was re-diagnosed as LADA rather than type 2 a couple of years ago, and while everyone's diabetic journey is different, it is something to consider. After seven years of managing reasonably (never spectacularly) well on variously (i) diet only (ii) diet and Metformin (iii) diet, Metformin and intermittent fasting, things rapidly spiralled out of control: I simply couldn't get my numbers below ten, started Gliclazide, expecting great things as I had initially had great success with Metformin.

Glic had absolutely zero impact on my numbers, the dose was doubled, still nothing....told to give it a few weeks, still nothing....I was told to stop the intermittent fasting to try to rule out that as a source of ketones, my numbers were almost constantly in the 15-20 range on generally c.50-100g carb per day. Even typing this now I can recall my stress being through the roof, not to mention the sleep deprivation through constant thirst and peeing!

After a couple of months I ended up with a hospital appointment and started on a low dose of long-acting insulin while waiting for the results of blood tests. The impact was almost immediate both on bloods and on my sense of well-being/calm. It was a couple of months before I had confirmation of my new diagnosis, which was via the anti-body (GAD) test rather than C-Peptide test, which was not done. Having another autoimmune disease (Thyroid in my case), is also associated with LADA, and might possibly be something for you to think about?

Good luck, and everything crossed for you.

Susan x

And also to @HSSS

My sugars were at 10.7 last night before i went to sleep, I had a small glass of lactose free milk at 9pm and as above, woke on 16.3mmol.it's now 2-3 hours after my breakfast (bacon & chorizo omelette with 1/3rd of a slice of toast) and after my usual passing out sleep and i'm on 15, so it has gone down, the diabetic community nurse has called again at my request and she's suggesting i go on to insulin for the time being, I had asked whether I should have the tests first = C-Peptide and GAD, she said I shall be booked in to have some. I have to pick up a reduced dose of Dulaglutide for tomorrow only she said i'm on over what is their supposed maximum dosage.

She shaid i nee to refrain from eating low or zero carb and yet i'm terrified because the carbs really do make me feel so unwell, can you imagine they wouldn't release me from the hospital unless i ate a slice of white bread toasted with a plastic pot of marmalade, it's insane that they're even suggesting this to me and goes against me in such a big way.

Last time I had some tests my thyroid levels were slightly up but nothing to be worried about, I did have radiotherapy some 2 years ago for NHL i'm unsure if this has any bearing on anything, @Swillbos , your story above sounds very similar to mine so perhaps it is leaning towards me being LADA and not type II.. We shallsee but I really appreciated everyones advice and thoughts on this as has given me plenty to read up about and I feel empowered somehow having the information available for when I try and discuss the matters with my doctors and what have you. xx

 

[HSSS]

And also to @HSSS

My sugars were at 10.7 last night before i went to sleep, I had a small glass of lactose free milk at 9pm and as above, woke on 16.3mmol.it's now 2-3 hours after my breakfast (bacon & chorizo omelette with 1/3rd of a slice of toast) and after my usual passing out sleep and i'm on 15, so it has gone down, the diabetic community nurse has called again at my request and she's suggesting i go on to insulin for the time being, I had asked whether I should have the tests first = C-Peptide and GAD, she said I shall be booked in to have some. I have to pick up a reduced dose of Dulaglutide for tomorrow only she said i'm on over what is their supposed maximum dosage.

She shaid i nee to refrain from eating low or zero carb and yet i'm terrified because the carbs really do make me feel so unwell, can you imagine they wouldn't release me from the hospital unless i ate a slice of white bread toasted with a plastic pot of marmalade, it's insane that they're even suggesting this to me and goes against me in such a big way.

Last time I had some tests my thyroid levels were slightly up but nothing to be worried about, I did have radiotherapy some 2 years ago for NHL i'm unsure if this has any bearing on anything, @Swillbos , your story above sounds very similar to mine so perhaps it is leaning towards me being LADA and not type II.. We shallsee but I really appreciated everyones advice and thoughts on this as has given me plenty to read up about and I feel empowered somehow having the information available for when I try and discuss the matters with my doctors and what have you. xx

Well it’s good that she’s booked you in for the additional tests. How long do you have to wait?

Has she, or even can she, explain why you should avoid lower carb eating when your levels are so high? I could understand a little better if they were single figures levels and on heavy meds but not this. I strongly suspect she thinks it will induce dka because she doesn’t understand low carb and nutritional ketosis and mixes the two up. I also suspect she considers them essential. And if she doesn’t know carbs raise bgl she is in desperate need of education. I’d be asking her for an explanation even if only to put your mind at rest (or to decide she doesn’t know why either). If she quotes dka at you ask her how? How lowering levels by eating fewer carbs will cause it? One of you will learn something from the conversation.

The only legitimate explanation I can think of could be to avoid giving false results on the tests that are required. And if you are low carb it could artificially (?) make the demand for insulin lower therefore c peptide appear lower than its actually capable of being. In which case you’d need a few days of normal carbs before the tests (and either be high or on insulin) to avoid this. Perhaps someone that has had this test can confirm if this is accurate.

 

[MillieT]

Well it’s good that she’s booked you in for the additional tests. How long do you have to wait?

Has she, or even can she, explain why you should avoid lower carb eating when your levels are so high? I could understand a little better if they were single figures levels and on heavy meds but not this. I strongly suspect she thinks it will induce dka because she doesn’t understand low carb and nutritional ketosis and mixes the two up. I also suspect she considers them essential. And if she doesn’t know carbs raise bgl she is in desperate need of education. I’d be asking her for an explanation even if only to put your mind at rest (or to decide she doesn’t know why either). If she quotes dka at you ask her how? How lowering levels by eating fewer carbs will cause it? One of you will learn something from the conversation.

The only legitimate explanation I can think of could be to avoid giving false results on the tests that are required. And if you are low carb it could artificially (?) make the demand for insulin lower therefore c peptide appear lower than its actually capable of being. In which case you’d need a few days of normal carbs before the tests (and either be high or on insulin) to avoid this. Perhaps someone that has had this test can confirm if this is accurate.

I came out of hospital last Saturday, the night before my ketones were 0.9 and sugars 5mmol, this started again some 4 weeks ago here i ran out of jardiance, i couldn;t get a repeat prescription for 6 days so i had no option but to low carb it because whatever i ate took my sugars up high, so i went through what I believed to be keto flu- i went through it a year ago so do have some idea from this forum. After the 6 days i had picked up my repeat prescription and between my last diabetic doctor telling me keto wasn't working for me and then my sugars going up to 15 on a keto diet I couldn't understand it so admittedly, I was wrong tot ake the jardiance again but only because i knew it would lower my sugars.

Over that weekend i was very ill with sore tummy and nausea, dizziness and allsorts, i was also biting everyones heads off just for looking at me the wrong way, i got through and kept testing and after 3 days of taking the jardiance again my sugars went down to 6mmol and my ketones 0.9 so i thought i'd be ok, the day after i woke up witht he worst headache and my eyes popping out my head, my ketones had gone up to 6.5 and sugars were 15 so i called 111, after a day of going from pillar to post they decided I should go into A&E and the rest you know.

Just to clarify, yes, they said not to low carb it because they say i'll return to dka and that i must must must have carbs, i was so annoyed this afternoon when she reiterated having them and asked me to let me know how i feel after a few days. I've told her that while they keep enforcing me to take carbs my levels won't be going down so I don;t have much of an option untilt he blood tests are taken friday so i should have the results through by Tuesday with some luck but that doesn't really help me as the weekend shall be very long and i'm still pretty much terrified of eating carbs.

 

[HSSS]

So I’ve gone back through a few of your posts now and done some more reading. To summarise. You went low carb for a week as you ran out of meds (jardiance) and went without for a week. You then got some more jardiance and double dosed. After this both ketones and bgl shot up, you felt awful and ended up in hospital with dka which they put down to both the meds and the diet. So they told you not to low carb to avoid it again.

Jardiance has been associated with dka (even when bgl isn’t so high as it usually is in dka) as it makes ketone production more likely and inhibits clearance of urinary ketones (so they show up less in pee sticks even if you check for them). Were you ever made aware of this side effect? Combine it with low carb and the risks go up further - in ways low carb with other meds doesn’t cause.
https://www.bjd-abcd.com/index.php/bjd/article/view/104/223, https://www.endocrineweb.com/news/d...-about-diabetic-ketoacidosis-sglt2-inhibitors
https://diabetes.medicinematters.co...e-on-a-sglt2-inhibitor-and-keto-diet/16098452.
https://westjem.com/case-report/eug...ransporter-2-inhibitor-use-a-case-report.html

So the big issue seems to be that low carb and jardiance don’t go well together as the diet makes the risks from the medication more likely. Nor is the jardiance managing your bgl evidenced by your high levels. So why not switch medications to one that doesn’t have a dka risk and combine that new medication with low carb if that’s your wish? Much safer by the looks of it and crazy they don’t explain this and offer that if low carb is your preference.

Are you still on the jardiance? If not the risk of dka should be substantially less and give you more leeway with safely reducing some carbs. See what the nurse says about this if you’re no longer on jardiance. See these guidelines, and maybe give the nurse a copy, for how to manage low carb with medications. It’s another one that says sglt2 inhibitors like jardiance and low carb aren’t a good mix. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592353/

Blood tests Friday, results soon after so you don’t have to wait too long. The only other thing you can do is hang tight. Are you able to do things like walk more, use the stairs more to burn off some extra glucose and counteract the bgl that way for a few days? Perhaps before the carbs rather than after, if you feel too groggy after

 

[MillieT]

Update 15/04/21 (Re above, not quite re the double dose of jardiance) but I've been waiting for my blood tests since only the friday was cancelled and it took another 2 weeks for another appointment, had them at last earlier this week and they're saying most functions are normal apart from my CPeptide result is at 4.09 and my HBA1C is at 88 so they're thinking that I am in the realm of type II at the moment, however, the predicament stands that i was told i must have some carbs to avoid going keto again, I've been on the Trulicity and Gliclazide 80mg x 4 a day and my sugars fail to go below 12mmol, so as they've been monitoring and helping me where i'm told to eat carbs, i've been a good girl and had a slice of frickin toast when my sugars are at 12-14mmol and it makes me so ill.

I'm really ratty with everyone and spitting fire for the want of a word because i might aswell jump out a window or something, on the trulicity i notice bad stomach pains especially in my lower left rib area -pancreas area and it really is painful, i'm constantly thirsty and dry and wobbly feeling nauseous like me head is going to drop off. I sleep a lot so when it's night time I have to double my dose of sleeping pills else my mind of overactive.

So at the moment i'm waiting for the diabetes specialist team to call me..when i'm unsure of hopefully befor enext Tuesday my last of four shots over a month and i really don't wish to take it because i'm sick to death of feeling so ill, i'm running at 14-16mmol every single minute of the day and the only way i can get them down is be doing the keto diet thing and omit all carbs from my diet but then- well here we go again, i may end back in dka...

 

[HSSS]

Update 15/04/21 (Re above, not quite re the double dose of jardiance) but I've been waiting for my blood tests since only the friday was cancelled and it took another 2 weeks for another appointment, had them at last earlier this week and they're saying most functions are normal apart from my CPeptide result is at 4.09 and my HBA1C is at 88 so they're thinking that I am in the realm of type II at the moment, however, the predicament stands that i was told i must have some carbs to avoid going keto again, I've been on the Trulicity and Gliclazide 80mg x 4 a day and my sugars fail to go below 12mmol, so as they've been monitoring and helping me where i'm told to eat carbs, i've been a good girl and had a slice of frickin toast when my sugars are at 12-14mmol and it makes me so ill.

I'm really ratty with everyone and spitting fire for the want of a word because i might aswell jump out a window or something, on the trulicity i notice bad stomach pains especially in my lower left rib area -pancreas area and it really is painful, i'm constantly thirsty and dry and wobbly feeling nauseous like me head is going to drop off. I sleep a lot so when it's night time I have to double my dose of sleeping pills else my mind of overactive.

So at the moment i'm waiting for the diabetes specialist team to call me..when i'm unsure of hopefully befor enext Tuesday my last of four shots over a month and i really don't wish to take it because i'm sick to death of feeling so ill, i'm running at 14-16mmol every single minute of the day and the only way i can get them down is be doing the keto diet thing and omit all carbs from my diet but then- well here we go again, i may end back in dka...

They maintain the dka risk is there even though you are no longer on jardiance? Is this the gp or the specialist team?

 

[MillieT]

They maintain the dka risk is there even though you are no longer on jardiance? Is this the gp or the specialist team?

This was someone from the hospital diabetic team, i'm still waiting for their consultant to call to discuss matters, i'm hoping something shall be resolved.