Everything’s topsy turvy!

[Buttonmoon78]

Hello! I’m here on behalf of my partner, who is T2. He’s 51 and has been T2 for 30 years or so.

For background, he’s gone through periods of better and worse control through that time - from doing triathlons and peak climbing to not controlling it at all and gaining a lot of weight.

We’re at the point now where he’s desperate to get it under control. He tried 12 months ago but everything was upside down - he started on gliclazide but his sugars don’t respond as they’re meant to. When he eats carbs his sugars stay high for hours and hours, even with gliclazide, and he was then having super low readings at night. His response to foods never seems to be typical - all the things the nurse specialist suggests send his sugars bonkers.

When he tried last year he ended up eating pretty much the Atkins diet and was miserable but it kept his sugars more under control and we ended up seeing a private specialist who suspected monogenic diabetes because of the way he responds to things. It proved not to be, but we didn’t do anymore investigations with her because she and her team were useless. As a retired clinician myself I don’t use that word lightly but she was. Incorrectly booked tests, incorrect locations, outright lies about what was happening and letters sent etc. It was a shambles and he totally lost heart and just gave up. Carried on with the metformin but nothing else.

Now we’re here, another annual check up and another hba1c reading later and he’s trying the gliclazide again. Once again his sugars remain high after the smallest amount of carbs. Once again he feels worse now than when he’s not really watching his intake - he feels like he’s got brain fog and feels forgetful and clumsy. He keeps saying that he always feels worse when he watches what he’s eating.

So I guess I’m wondering if anyone has any words of wisdom or can recommend a specialist in the northeast Hampshire/ west Surrey/ south Berkshire region? Happy to go private again as he’s got good cover with work.

 

[Lucyr]

Now we’re here, another annual check up and another hba1c reading later and he’s trying the gliclazide again.

Why is he trying gliclazide again if it hasn’t suited him before? There’s hundreds of T2 meds, loads of other options to try something different that suits him more.

When you say he’s very low at night is that checked on a fingerprick and what numbers?

 

[Buttonmoon78]

Thanks for replying.

He’s on gliclazide again as that’s all the nurse would offer. She said he might be eligible for mounjaro but she wanted to find out whether or not his retinopathy would rule him out. They’ve given him a CGM like last time and he gets readings of 2.6/2.8 and then we confirm it on fingerprick which is typically slightly higher. That’s what drove us to a specialist in the first place as I’m not here every night and it scared us both.

 

[Buttonmoon78]

Why is he trying gliclazide again if it hasn’t suited him before? There’s hundreds of T2 meds, loads of other options to try something different that suits him more.

When you say he’s very low at night is that checked on a fingerprick and what numbers?

Apologies. I managed to reply without replying. Just adding that he’s already on 2g of metformin and takes empagleflozin daily.

 

[Leadinglights]

Hello! I’m here on behalf of my partner, who is T2. He’s 51 and has been T2 for 30 years or so.

For background, he’s gone through periods of better and worse control through that time - from doing triathlons and peak climbing to not controlling it at all and gaining a lot of weight.

We’re at the point now where he’s desperate to get it under control. He tried 12 months ago but everything was upside down - he started on gliclazide but his sugars don’t respond as they’re meant to. When he eats carbs his sugars stay high for hours and hours, even with gliclazide, and he was then having super low readings at night. His response to foods never seems to be typical - all the things the nurse specialist suggests send his sugars bonkers.

When he tried last year he ended up eating pretty much the Atkins diet and was miserable but it kept his sugars more under control and we ended up seeing a private specialist who suspected monogenic diabetes because of the way he responds to things. It proved not to be, but we didn’t do anymore investigations with her because she and her team were useless. As a retired clinician myself I don’t use that word lightly but she was. Incorrectly booked tests, incorrect locations, outright lies about what was happening and letters sent etc. It was a shambles and he totally lost heart and just gave up. Carried on with the metformin but nothing else.

Now we’re here, another annual check up and another hba1c reading later and he’s trying the gliclazide again. Once again his sugars remain high after the smallest amount of carbs. Once again he feels worse now than when he’s not really watching his intake - he feels like he’s got brain fog and feels forgetful and clumsy. He keeps saying that he always feels worse when he watches what he’s eating.

So I guess I’m wondering if anyone has any words of wisdom or can recommend a specialist in the northeast Hampshire/ west Surrey/ south Berkshire region? Happy to go private again as he’s got good cover with work.

Welcome to the forum, it sounds as if he his perhaps not quite got the right balance of diet and medication. Metformin is a medication which helps the body use the insulin it produces more effectively and reduces the output of glucose by the liver and people find they can reduce carbs safely but when gliclazide is added to the mix people do need to eat some carbs for the medication to be effective as it encourages the pancreas to produce more insulin if it is able to cope with the carbs but too few carbs and there is a risk of too low blood glucose.
It maybe that the 'Atkins' diet was a step too far and a more sustainable low carb approach would be more doable.
This link may help you find an approach which would be suitable as it is based on a suggested no more than 130g carbs per day, it is not NO carbs and is based on real food so meals that you could share so he doesn't feel he is eating differently. https://lowcarbfreshwell.com/
Having a home blood glucose monitor which should be prescribed if he is on gliclazide would help identify if his meals are increasing blood glucose by too much by testing before eating and after 2 hours when the aim is for no more than a 2-3mmol/l increase or no more than 8-8.5 after 2 hours.
He should be able to get support from his GP or diabetic nurse at the surgery.
What sort of meals does he have as if you post some examples then people may be able to make suggestions to help.
What was his recent HbA1C as that will indicate where he is in the scheme of things.
It is good he has you for support.

 

[Leadinglights]

Just seen that he is also on empagliflozin as well and that does encourage the kidneys to excrete excess glucose via urine so it is important to keep fluid intake up.
Again with that medication very low carb is not recommended but around 130g per day is usually OK.

 

[harbottle]

It does sound like MODY or another form of monogenic diabetes. Did either of his parents have it?

 

[Buttonmoon78]

Welcome to the forum, it sounds as if he his perhaps not quite got the right balance of diet and medication. Metformin is a medication which helps the body use the insulin it produces more effectively and reduces the output of glucose by the liver and people find they can reduce carbs safely but when gliclazide is added to the mix people do need to eat some carbs for the medication to be effective as it encourages the pancreas to produce more insulin if it is able to cope with the carbs but too few carbs and there is a risk of too low blood glucose.
It maybe that the 'Atkins' diet was a step too far and a more sustainable low carb approach would be more doable.
This link may help you find an approach which would be suitable as it is based on a suggested no more than 130g carbs per day, it is not NO carbs and is based on real food so meals that you could share so he doesn't feel he is eating differently. https://lowcarbfreshwell.com/
Having a home blood glucose monitor which should be prescribed if he is on gliclazide would help identify if his meals are increasing blood glucose by too much by testing before eating and after 2 hours when the aim is for no more than a 2-3mmol/l increase or no more than 8-8.5 after 2 hours.
He should be able to get support from his GP or diabetic nurse at the surgery.
What sort of meals does he have as if you post some examples then people may be able to make suggestions to help.
What was his recent HbA1C as that will indicate where he is in the scheme of things.
It is good he has you for support.

Hello! Thanks for responding. The Atkins came after he gave up on the Glic - that wasn’t clear from my first post, sorry.

So he’s having increases from 6 to 11-15 easily and these can last for hours. Two hours after eating he can still be in the 11/12 region, easily.

As for what he eats… sometimes it’s not great, usually when he’s alone. Like a lot of us he’s not got a great relationship with food! When we’re together though it’s a balanced meal - a good helping of protein, a smaller helping of carbs with lots of leafy green veg. He loves eggs so always has a bowl of hard boiled eggs in the fridge for snacks.

Most recent hba1c was 89. Getting to see a GP is harder than many very hard things.

 

[Buttonmoon78]

It does sound like MODY or another form of monogenic diabetes. Did either of his parents have it?

He’s adopted so no parental medical history at all. The specialist sent the sample off to Exeter and apparently it’s not ‍♀️

 

[Lucyr]

Getting to see a GP is harder than many very hard things.

Do you not have econsult? He might not need to actually see the GP. You describe the problem and they send you a message, or give you a ring, or book you an appointment, whichever is appropriate

 

[Leadinglights]

Hello! Thanks for responding. The Atkins came after he gave up on the Glic - that wasn’t clear from my first post, sorry.

So he’s having increases from 6 to 11-15 easily and these can last for hours. Two hours after eating he can still be in the 11/12 region, easily.

As for what he eats… sometimes it’s not great, usually when he’s alone. Like a lot of us he’s not got a great relationship with food! When we’re together though it’s a balanced meal - a good helping of protein, a smaller helping of carbs with lots of leafy green veg. He loves eggs so always has a bowl of hard boiled eggs in the fridge for snacks.

Most recent hba1c was 89. Getting to see a GP is harder than many very hard things.

Is is possible to have suitable meals in the freezer for him to have when you are not sharing meals or keep salads, cooked meats, cheese, coleslaw, high protein yogurts in the fridge.

 

[Buttonmoon78]

Do you not have econsult? He might not need to actually see the GP. You describe the problem and they send you a message, or give you a ring, or book you an appointment, whichever is appropriate

It always seems to be booked up, only so many appointments on one day etc. It really is the most oversubscribed GP practice I’ve encountered. I live in Wales and it’s totally different. When I first encountered it here I was quite taken aback by how difficult it is.

 

[Buttonmoon78]

Is is possible to have suitable meals in the freezer for him to have when you are not sharing meals or keep salads, cooked meats, cheese, coleslaw, high protein yogurts in the fridge.

Yes, we could and should. I don’t cook much at all - I have several chronic conditions myself which make cooking very painful and exhausting but I could encourage him to make more and freeze leftovers to meal prep. Good idea.

 

[Lucyr]

It always seems to be booked up, only so many appointments on one day etc

You don’t book the appointment through econsult. You describe the problem and they send you a response or offer an appointment if it’s needed

 

[Buttonmoon78]

You don’t book the appointment through econsult. You describe the problem and they send you a response or offer an appointment if it’s needed

Yes but I believe they only release so many slots per day.

 

[Lucyr]

Yes but I believe they only release so many slots per day.

Have you submitted an econsult and the doctor has said no we don’t have any more econsult slots? Normally you just check on your practice website what time the econsult form is open and fill it in during that time.

 

[rebrascora]

Have you submitted an econsult and the doctor has said no we don’t have any more econsult slots? Normally you just check on your practice website what time the econsult form is open and fill it in during that time.

Lucy I believe that once the allotted number of econsults for that day have been sent, the system will simply not allow anyone else to complete the form.

 

[Leadinglights]

Yes, we could and should. I don’t cook much at all - I have several chronic conditions myself which make cooking very painful and exhausting but I could encourage him to make more and freeze leftovers to meal prep. Good idea.

I make things like chilli, curries, casseroles and we have for 2 days and then freeze the extra portions for home made ready meals.

 

[Buttonmoon78]

Lucy I believe that once the allotted number of econsults for that day have been sent, the system will simply not allow anyone else to complete the form.

Yes I think this is how it works.

 

[Lucyr]

Yes I think this is how it works.

Look up the times it opens and put it in at the start then?