Type 2 Gliclazide, general diet and the T2 experience so far

[Redrewmac]

I have only posted once before so please be kind.

I was diagnosed T2 back in October 2019 and I think I've made good progress, I’m on 2 x 500mg Metformin twice a day and I had a GAD antibody test just before lockdown which came back negative. My highest was HbA1c 105 in November but I’ve brought it down to 44 in my most recent blood test back in early July.

I wasn’t overweight to start with but have stayed on a very strict low carb diet, luckily my weight has stayed quite stable. I regularly test and I have found the range of food that doesn’t seriously affect my levels quite restrictive and can be a struggle to manage with the rest of my family eating normally, particularly during the lockdown.

In the end I spoke to the diabetic team at my local hospital in June and they added 1 x 40mg Gliclazide twice a day to “allow” me to eat some carbs. I was told to take them 20 minutes before meals and test before driving as the effect should be immediate. I was warned I might experience hypos so I went a bit OTT testing but my bloods actually seemed to go up (even without carbs) or there was no effect at all? After about a week I spoke to the hospital team again and they advised upping to 80mg before breakfast and 40mg before dinner (I understand this is still a fairly low dose overall) which I have followed since but still with no apparently consistent effects but I dropped the tests back to twice a day (or as required) as advised by the diabetic clinic.

I also had a dietician appointment on the phone who, amongst other things, advised that carbs help the Gliclazide to metabolise so I need to eat at least some (and also as part of a healthy diet). I have introduced some carbs (1 slice of brown bread, brown rice, brown pasta, etc. but always in small quantities) but I didn’t really find any difference between my tests with and without the Gliclazide. Then I experienced my first hypo a few weeks ago at 3.2, I have had a 3.7 and 3.9 since, not ultra-low I know but I really notice when it’s happened but I can’t seem to find any pattern to the cause.

This sounds stupid as I type it but I’ve almost been trying to “cause” a hypo just so I know how to avoid them in future but they seem to happen regardless of when or whether I’ve had carbs, that said my hypos have always been in the evening, after dinner (so far).

I think I’m just after some general advice and/or reassurance as I know a lot of the “Official advice” isn’t always quite right or tailored to everyone and I received some excellent advice from my first post that’s really stuck with me and has helped me get this far.

 

[Daibell]

Hi and welcome. It is always possible you are a late onset T1 in the honeymoon period. Whilst a GAD test should be done it isn't conclusive and you really need a C-Peptide test as well to check your insulin production. It's only in recent years that it's been realised that it's not only antibodies that cause beta cell death and viruses are one other cause. Your dietician is talking nonsense as many dieticians do. You should never increase carbs to match Gliclazide's insulin production unless you like medication and want to gain weight. You should only have a Gliclazide dose to match the carbs you wish to eat. You only need a small quantity of carbs as part of a balanced diet. I would ask the clinic for a C-Peptide test at some point. BTW I was on 320mg of Gliclazide before insulin and my BS was rising fast even with that dose so see how your BS goes

 

[Redrewmac]

Hi and welcome. It is always possible you are a late onset T1 in the honeymoon period. Whilst a GAD test should be done it isn't conclusive and you really need a C-Peptide test as well to check your insulin production. It's only in recent years that it's been realised that it's not only antibodies that cause beta cell death and viruses are one other cause. Your dietician is talking nonsense as many dieticians do. You should never increase carbs to match Gliclazide's insulin production unless you like medication and want to gain weight. You should only have a Gliclazide dose to match the carbs you wish to eat. You only need a small quantity of carbs as part of a balanced diet. I would ask the clinic for a C-Peptide test at some point. BTW I was on 320mg of Gliclazide before insulin and my BS was rising fast even with that dose so see how your BS goes

Thanks I will check the results on the blood test, it was apparently quite thorough so they may have done that already.

I think my biggest frustration with the whole thing has been the sheer range of conflicting information out there, it really looks like the "experts" don't have a clue or are trying to generalise for everyone; I've slowly come to the conclusion that everyone's experience is very different, I certainly haven't found many people who've had exactly the same issues as me. When I was diagnosed most of the official advice I could find revolved around losing weight but I wasn't overweight to start with. I'm a bit more at peace with it now but it was and occasionally still is very frustrating.

 

[Oldvatr]

We are on similar paths it seems. I use Metformin for cardio benefit, not sugar lowering, and I low carb to control my bgl. I am also on low dose Gliclazide which I could probably drop now, but it does give me flexibility with being able to add some small amounts of carbs so I can eat with the family. I find for me that my sugars drop further in the evenings than the mornings, I too have the occasional hypo even on 40 mg Glic, and it can occur prior to my evening meal. For example just now I was at 3.2 but usually I am running around 4 or so, I am not trying to go keto so I eat toast and potatoes regularly now.

One thing I was going to say was that you may still be having high Insulin Resistance (IR) if the Glic does not have any effect, but it seems that you have managed to reduce the IR and its working now as intended. Try it a bit longer to see what patterns emerge that are peculiar to your lifestyle then consider making changes to fine tune it to suit. There is thought that Glic, being a sulfonylurea will burn out your pancreas cells, That was found to be in the older drugs of that class, but Glic is a Mark 2 variant that does not seem to cause this, That said, you may wish to remove it at a later date. Your choice.

One thing to consider. You mention driving. If you drive then you need to test according to the DVLA guidelines, and this opens a door by which your GP can actually provide you with test strips and lancets FOC. Even on 40mg you qualify. But if you stop it then you lose the GP support.

 

[Daibell]

Thanks I will check the results on the blood test, it was apparently quite thorough so they may have done that already.

I think my biggest frustration with the whole thing has been the sheer range of conflicting information out there, it really looks like the "experts" don't have a clue or are trying to generalise for everyone; I've slowly come to the conclusion that everyone's experience is very different, I certainly haven't found many people who've had exactly the same issues as me. When I was diagnosed most of the official advice I could find revolved around losing weight but I wasn't overweight to start with. I'm a bit more at peace with it now but it was and occasionally still is very frustrating.

Hi again. Sadly the experts on diabetes typing and diet have been way out over the years. Diet advice from PHE is strongly influenced by the food industry and Diabetes UK (not this site) have only recently realised that many slim T2s are actually adult onset T1. I'm afraid experts are often guilty of Group-think and don't look at what is going on outside. This forum has been immensely helpful to me over many years.

 

[Oldvatr]

Hi again. Sadly the experts on diabetes typing and diet have been way out over the years. Diet advice from PHE is strongly influenced by the food industry and Diabetes UK (not this site) have only recently realised that many slim T2s are actually adult onset T1. I'm afraid experts are often guilty of Group-think and don't look at what is going on outside. This forum has been immensely helpful to me over many years.

I have seen nothing in the OP postings that suggest that there is a lack of endogenous insulin, but there was initial evidence of high IR. The OP is reporting hypo symptoms on a very low dose of diabetic medicine and without exogenous insulin. Also the OP has HbA1c at 44 which is very good for 6 months since DX (was 105) so indication is good supply of insulin and reducing IR,

I remember you strongly advising me to get T1 testing, and now some 30 years since T2DX I am happy with my diagnosis. Please be aware of how frightening it can be to get this advice out of the blue when there is an improving situation. Had the OP still been struggling to get control, then that may be a more sensible time to bring this up,

 

[Daibell]

I have seen nothing in the OP postings that suggest that there is a lack of endogenous insulin, but there was initial evidence of high IR. The OP is reporting hypo symptoms on a very low dose of diabetic medicine and without exogenous insulin. Also the OP has HbA1c at 44 which is very good for 6 months since DX (was 105) so indication is good supply of insulin and reducing IR,

I remember you strongly advising me to get T1 testing, and now some 30 years since T2DX I am happy with my diagnosis. Please be aware of how frightening it can be to get this advice out of the blue when there is an improving situation. Had the OP still been struggling to get control, then that may be a more sensible time to bring this up,

Hi. Point taken and I will bear it in mind in my future posts.

 

[Redrewmac]

Thanks All,

I don't often engage online but this forum seems to be an exception to the rule, I suppose it's because we're all in the same boat.

The diabetes clinic at my local hospital seemed convinced I was late onset T1 and I was braced for that to be confirmed until I had the follow-up blood test results which apparently confirmed I wasn't (at least for now).

I have managed to dig out those results from March (I only have the paper copy of my most recent results and I haven't had a chance to scan them) with some of the comments below.

This was another frustration as I had to try to decipher a lot of this myself as my GP is useless (I'm not sure how good a job I did) and because we were deep into lockdown when I finally received the results, also the hospital clinic doctor had been ill with Covid. I have managed to speak to the clinic team since which ended up adding the Gliclazide but then my follow-up appointment isn't until December...

Grateful for any comments/advice/recommendations:

I think the biggest problem this early on from my diagnosis is that on some level I still think I might get back to "normal", intellectually I know that isn't true but I think the total acceptance will be the last thing to happen.

 

[Oldvatr]

Thanks All,

I don't often engage online but this forum seems to be an exception to the rule, I suppose it's because we're all in the same boat.

The diabetes clinic at my local hospital seemed convinced I was late onset T1 and I was braced for that to be confirmed until I had the follow-up blood test results which apparently confirmed I wasn't (at least for now).

I have managed to dig out those results from March (I only have the paper copy of my most recent results and I haven't had a chance to scan them) with some of the comments below.

This was another frustration as I had to try to decipher a lot of this myself as my GP is useless (I'm not sure how good a job I did) and because we were deep into lockdown when I finally received the results, also the hospital clinic doctor had been ill with Covid. I have managed to speak to the clinic team since which ended up adding the Gliclazide but then my follow-up appointment isn't until December...

Grateful for any comments/advice/recommendations:

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I think the biggest problem this early on from my diagnosis is that on some level I still think I might get back to "normal", intellectually I know that isn't true but I think the total acceptance will be the last thing to happen.

I think (?) that CBG stands for Capillary Blood Glucose since the official definition in the medical dictionary does not seem applicable in this context. I think in the UK we would use the Fasting Blood Glucose FBG term. Normally a fingerprick check in the morning, but for that you would need a test meter. Did they offer you one to do this monitoring?

That HbA1c value is not a disaster, and there are ways that will bring that down to controlled level - Gliclazide will be a good start, but you might find that simple diet and lifestyle changes would achieve it well enough without it. Read the Success and Testimonials section of the Forum and then the diet threads. There are many to choose from, so select one that you feel you could use.

 

[Redrewmac]

I bought a monitor quite early on (recommended on here actually) and test at least twice a day as recommended by the hospital so they can see any patterns but also as I feel is required. My GP finally offered me a monitor last month, only 9 months since my diagnosis; I accepted it but have stuck with my Tee2, at least until I use up my test strips. Then again they only thought to mention in passing the blood tests above indicated hyperthyroidism and other possible complications about a month after I received the results letter so I shouldn't have been surprised.

My HbA1c was 44 from my last blood test and I have my next due some time in September and I have continued to be control my diet closely so I'll be curious to see where that ends up. I also looked at my saved daily tests results and my average mmol/L has been about 7.5 since I stared testing in February and that doesn't seem too bad.

I would like to be on as little medication as possible eventually, but I don't know if they will ever recommend that, I still experience some very mild nausea every now and then but I don't know if that's in my head.

 

[Oldvatr]

I bought a monitor quite early on (recommended on here actually) and test at least twice a day as recommended by the hospital so they can see any patterns but also as I feel is required. My GP finally offered me a monitor last month, only 9 months since my diagnosis; I accepted it but have stuck with my Tee2, at least until I use up my test strips. Then again they only thought to mention in passing the blood tests above indicated hyperthyroidism and other possible complications about a month after I received the results letter so I shouldn't have been surprised.

My HbA1c was 44 from my last blood test and I have my next due some time in September and I have continued to be control my diet closely so I'll be curious to see where that ends up. I also looked at my saved daily tests results and my average mmol/L has been about 7.5 since I stared testing in February and that doesn't seem too bad.

I would like to be on as little medication as possible eventually, but I don't know if they will ever recommend that, I still experience some very mild nausea every now and then but I don't know if that's in my head.

Well Done. You will need to keep testing since Glic use can lead to hypos (especially test if you are a driver). Be prepared to reduce the Glic if this starts happening. Get a pillcutter from the pharnacy. I used to cut mine in half as I reduced my need since my diet was so effective. I am t this point myself, so may be reducing mine soon.
Hint keep a log so that if you do take this action to reduce, then you can see how your sugars react, and this info can help persuade the doctor to support you since you are using the test meter to adjust medication, and doctors like that.

 

[Redrewmac]

Thanks, I'll keep my records up to date, it's one of the few occasions where obsessively recording detail works in my favour!

 

[Oldvatr]

Thanks, I'll keep my records up to date, it's one of the few occasions where obsessively recording detail works in my favour!

Exactly (its useless if not)