A nervous hello...

[DimiTagg]

Not been in a chat environment for a long time so apologies if I seem a touch rusty. Just a little about myself, I'm 35 and was diagnosed with T2 when I was 20. I wasn't overweight and didn't have many symptoms (or so I thought at the time). I have been able to manage my condition really well over the past 15 years up until this year. Obviously, the world stopped for a while, so all normal appointments were no longer going ahead. When I finally went for my annual blood test, I was told my BS had spiked from being a OK 5 to 6 to 8.6. I'd not done anything different to my lifestyle and in fact had tried to be healthier, by doing more exercise and making sure I was eating better and drinking less. This was a massive shock, and my GP wasn't very sympathetic, not looking at my notes and telling me I needed to cut down on the takeaways! Anyway, to cut a very long and boring story short, I've been for 7 blood tests over the past few months and now been referred to my local hospital for a consultation. They've popped me on a different medication (Gliclazide) which I've had before, and I've got to go back in 3 months.


I've not joined here previously because I thought I was doing OK, I thought I was more than my condition, but just recently I'm finding I'm struggling to come to terms with this all over again. I thought I was doing the best I could do, eating well, exercising, walking, being kind to myself...but at the moment I feel like I'm going backwards.

Anyway, enough of me moaning, I'm really excited to be part of this community and I'm really looking forward to getting to know some of you better. You look like a super lovely bunch! x

 

[grovesy]

Do you check your own Bloods at home?
As you were diagnosed at an early age are they sure you were Type 2 and not another more uncommon Type such MODY?

 

[Ralph-YK]

Welcome to the forum DimiTagg, from a fellow T2.

5 to 6 to 8.6

Is that from a HbA1c test, or a spot/finger prick test?

 

[DimiTagg]

Welcome to the forum DimiTagg, from a fellow T2.

Is that from a HbA1c test, or a spot/finger prick test?

Howdy! 🙂

It was from a HbA1c test. Over the years I've gone from 19.5 (the first ever test I had) down to 8 to 7 and then I've always been around the 6ish mark. I may have jumped to a 7 one year but I was eating too much fruit. I used to only do a finger prick test if I was having a hypo (as per my docs request) but as of today I'm back to doing it twice a day to see if the gliclazide is working well with my metformin.

 

[Ralph-YK]

I use the newer scale as that's what I'm given results in. I was 64 at diagnoses, spent some time around 46-48. (48=6.5) It's my 6 year diaversary tomorrow.

 

[DimiTagg]

Do you check your own Bloods at home?
As you were diagnosed at an early age are they sure you were Type 2 and not another more uncommon Type such MODY?

Hi Grovesy, ha well it's funny you should say that. I was referred to the hospital 5 years after being diagnosed with T2 because they thought they mis-diagnosed. But after various chats and blood tests they were convinced it was T2 and it as left at that. Since then I've been tested for LADA which I don't have and the consultant yesterday mentioned MODY for the first time to me, but only one uncle (maternal) in my family is diabetic so he wasn't convinced it was. He's put me on glic so he can see if I have a reaction to it (I did when I was younger) as that will help with getting the test for MODY sorted. I left the hospital yesterday feeling really overwhelmed by everything.

I didn't used to check my bloods at home because of the advise from the docs but I am now. Got myself a little book sorted and everything

 

[grovesy]

Hi Grovesy, ha well it's funny you should say that. I was referred to the hospital 5 years after being diagnosed with T2 because they thought they mis-diagnosed. But after various chats and blood tests they were convinced it was T2 and it as left at that. Since then I've been tested for LADA which I don't have and the consultant yesterday mentioned MODY for the first time to me, but only one uncle (maternal) in my family is diabetic so he wasn't convinced it was. He's put me on glic so he can see if I have a reaction to it (I did when I was younger) as that will help with getting the test for MODY sorted. I left the hospital yesterday feeling really overwhelmed by everything.

I didn't used to check my bloods at home because of the advise from the docs but I am now. Got myself a little book sorted and everything

I suggest you take a look at the Exter University as they are the lead researchers on it. I believe the tests can be expensive.

 

[grovesy]

Hi. Welcome to the forum and sorry to hear that things have started to go the other way for you. If your 8.6 blood test result is in mmol/L that would suggest an HbA1c maybe somewhere in the 50s. Were any of your 7 blood tests an HbA1c test?

Until a few years ago HBA 1 C were reported as percentages, and some people still seem to be told results in percentages eg. 6.0 equivalent to 42, 9.0 to 75.

 

[rebrascora]

Hi and welcome from me too.

So pleased you have found us as it really is an easier journey with diabetes when you have others who live with it to bounce ideas off and share collective experiences. There is a wealth of knowledge and experience here but more members means more knowledge. Sounds like you have one of the weirder (hope that doesn't offend you) diabetes types. It is believed that there may be many more subtypes than the current classification allows. You certainly don't fit the typical profile of a Type 2.
I hope the Gliclazide is effective for you again. It sounds like you are reasonably switched on regarding diet but here on the forum we advocate lots of testing, to show you which foods cause you the most problems and which you can get away with and it can be surprisingly individual in how we respond. There is a suggested testing strategy called Test, Review, Adjust which many of us followed to tailor our own individual diet where you test before eating and then 2 hours afterwards and if the rise in BG level is more than 3mmols then the meal was too carb heavy for your system to cope. It has proved a really helpful strategy for many people here on the forum to help reduce their HbA1c levels. It obviously involves a lot more testing thatn twice a day in the initial stages but once you have a data base of regular meals that you have found the correct portion size and type of carbs for, the testing can be reduced to just occasional spot test monitoring. Obviously being on Glic, you need to also test if you feel dodgy.

This is the link to the testing strategy I mentioned
Type 2 Diabetes - A Personal Journey: Test, Review, Adjust (loraldiabetes.blogspot.com)

 

[DimiTagg]

I suggest you take a look at the Exter University as they are the lead researchers on it. I believe the tests can be expensive.

Thanks, I've been having a bit of a Google when I came back from the hospital yesterday and saw bits of information about it. The consultant said it was really expensive and wanted to really make sure before he suggested I took it. Not had chance to look any further into it yet due to work getting in the way haha.

 

[DimiTagg]

Hi and welcome from me too.

So pleased you have found us as it really is an easier journey with diabetes when you have others who live with it to bounce ideas off and share collective experiences. There is a wealth of knowledge and experience here but more members means more knowledge. Sounds like you have one of the weirder (hope that doesn't offend you) diabetes types. It is believed that there may be many more subtypes than the current classification allows. You certainly don't fit the typical profile of a Type 2.
I hope the Gliclazide is effective for you again. It sounds like you are reasonably switched on regarding diet but here on the forum we advocate lots of testing, to show you which foods cause you the most problems and which you can get away with and it can be surprisingly individual in how we respond. There is a suggested testing strategy called Test, Review, Adjust which many of us followed to tailor our own individual diet where you test before eating and then 2 hours afterwards and if the rise in BG level is more than 3mmols then the meal was too carb heavy for your system to cope. It has proved a really helpful strategy for many people here on the forum to help reduce their HbA1c levels. It obviously involves a lot more testing thatn twice a day in the initial stages but once you have a data base of regular meals that you have found the correct portion size and type of carbs for, the testing can be reduced to just occasional spot test monitoring. Obviously being on Glic, you need to also test if you feel dodgy.

This is the link to the testing strategy I mentioned
Type 2 Diabetes - A Personal Journey: Test, Review, Adjust (loraldiabetes.blogspot.com)

Thank you for the warm welcome. I think I've always tried to push it to the back of my mind, especially when things were going really well, but everything seems to be so overwhleming at the moment, it's hard to breathe at times.

Hahaha no offense at all, I'm weird in a lot of ways! I also believe there must be more subtypes out there. It was such a shock when I was first diagnosed because of my age and my weight.

Thank you for all the advice here, I've never heard of this type of testing before so this would be a fabulous way of learning more about the types of food which don't agree with me.

Thank you for everything
🙂

 

[grovesy]

Thanks, I've been having a bit of a Google when I came back from the hospital yesterday and saw bits of information about it. The consultant said it was really expensive and wanted to really make sure before he suggested I took it. Not had chance to look any further into it yet due to work getting in the way haha.

Yes that was my understanding that the tests are expensive as I believe they are genetic tests.

 

[trophywench]

Genetic tests for MODY, yes. Very limited who can do em.

But not the C-peptide/GAD antibody tests they need to see whether you are really Type 1 or LADA - or to see whether your natural insulin production has reduced to such a low low over the years that it's not enough to be of any actual use to you now. Many more UK hospital labs do the latter tests these days!

Gliclazide is a drug which gets your pancreas to produce more insulin so it remains to be seen whether this works or not! You are usually started on a lower dose of this to begin with to see how that goes - what dose have they started you on?

 

[DimiTagg]

Genetic tests for MODY, yes. Very limited who can do em.

But not the C-peptide/GAD antibody tests they need to see whether you are really Type 1 or LADA - or to see whether your natural insulin production has reduced to such a low low over the years that it's not enough to be of any actual use to you now. Many more UK hospital labs do the latter tests these days!

Gliclazide is a drug which gets your pancreas to produce more insulin so it remains to be seen whether this works or not! You are usually started on a lower dose of this to begin with to see how that goes - what dose have they started you on?

Hiya, yes I've had both tests for LADA and T1 and that's the reason they've said I'm still T2. The consultant did mention a 'lean' Type 2 but didn't really mention much more than that. I'm on 40mg gliclazide twice a day along with metformin 500mg (2x500mg in a morning and the same in an evening taken with my gliclazide), I now rattle when I walk

I was on gliclazide when I was first diagnosed in 2005 but I was finding I was having quite a lot of hypos with it. After being on it for 5 years they took me off it and I've been on Metformin ever since. When they saw my BS going up the GP put me on alogliptin but it's not made any difference. And when I spoke with the consultant yesterday he said that it wasn't really the right form of medication for me because it wouldn't have made the dramatic drop that they wanted to see.

Consultant said if I start to have hypos with the glic to drop the metformin dose first to 2 tablets a day but keep an eye on finger prick results.

 

[trophywench]

Well ISTR the max daily dose is something like 360mg - so you'll have to see!

There's not all that much wrong with me really - but I must rattle more than you by your reckoning, Though to be fair I expect with the 25ish u of insulin being pumped in daily, my tablets probably float so don't rattle?

 

[everydayupsanddowns]

Welcome to the forum @DimiTagg

Sorry to hear of the slightly dismissive and unsympathetic attitude from your GP.

I get the feeling that diabetes often doesn’t like to be put in the neat boxes that the classification system allows, and over the years on the forum we have seen many many misclassifications and ‘unclassifiables’!

I think some HCPs can also get a bit judgemental where treatment regimen don’t work and there can be a slightly stigmatising attitude that it must be a lack of ‘compliance’ on your part. This is a very outdated and unfortunate way of thinking IMO - ideally I believe the Dr and person with diabetes should make the perfect collaborative team where the Dr brings expertise about the condition generally, physiology and current medical research... and the PWD brings hands-on practical experience of their own individual diabetes and how it behaves.

Checking your BG before and after meals can be a very direct way to observe what is happening for you, and much much more illuminating than the vague intermittent, infrequent ‘background’ checks that are sometimes suggested. Pairs of BG values around meals will allow you to see whether your meds and menu are in balance (as well as the effect of increases in exercise/activity levels.

You don’t have to plunge into all the meals every day. You might find it more helpful to examine one meal at a time for a while - so conduct some breakfast experiments one week and then lunch another week etc. First thing in the morning and last thing at night can be helpful benchmarks too.

Good luck and let us know any questions or confusions as they arise 🙂