Drugs not working for my Type 2

[SteveC]

Some background: I'm 55, male, 185cm tall, 80kg, always been slim. Had a blood test about 9 years ago for a bowel pain investigation which showed my blood sugar slightly high. A few more blood tests showed Hba1c of 49 and so now officially type 2 diabetic. Over the last few years my Hba1c is usually 51 or 52. Whenever I check my fasting blood sugar it is always in the 7s. I've tried many diets including very low carb and they have no effect on my Hba1c or my fasting blood sugar. Eventually my diabetes nurse put me on Meformin SR 500mg twice per day. Tried for 1 year but no effect on Hba1c. So I asked to try Dapagliflozin. I checked my urine and sure enough it was full of glucose, so surely this would finally lower my blood sugar. But when I checked fasting blood sugar it was still over 7. Then when I had my next blood test after 3 months on the meds my Hba1c was 53! So actually higher... I have now stopped taking them and my urine is now showing no glucose. It seems to me that my body has a baseline glucose level in the 7s rather than the 5s and so when I pee out glucose on the Dapagliflozin it just instructs my liver to make more to return to equilibrium. I just wondered if there are any experts out there that might have a clue as to what is happening with me and how I can lower my Hba1c?

 

[Eddy Edson]

No expert, but I wonder if you might actually be some kind of slow-onset Type 1? (A large proportion of adult T1's are initially misdiagnosed as T2.)

Just because you don;t seem to be responding to carb reduction and meds in a T2 kind of way.

 

[TheClockworkDodo]

It does sound as though you might be type 1.5 (ie slow onset type 1), also known as LADA (I'm sure someone will be along shortly who remembers what that stands for 😳). If you are, in the long term the only thing which will lower your HbA1c is insulin, though at the moment you're not doing too badly without - 53 is a slightly high level but not a worrying one.

We've several people here who were originally diagnosed as type 2 and took months, or in some cases years, to get a correct diagnosis of type 1.5. Your GP might not have heard of it, as most medical professionals who are not diabetes specialists (including surgery diabetes nurses) will mainly see type 2s. If your GP could organise a GAD antibody test for you, that would be the way to find out - if they won't or can't you could ask for a referral to a hospital diabetes specialist.

 

[everydayupsanddowns]

GAD antibody tests may offer an extra clue, but depending on what is going on with your body and how many beta cells you have left, you may test negative for GAD even as a classic T1 after a few years.

A c-peptide test could offer more information too because that can be used to assess how much insulin you are producing yourself.

Either way it looks like insulin may be worth considering if your meds are not able to keep your BG in range.

 

[SteveC]

Thanks, this is all very interesting.

If it was late onset T1 would I expect it to be getting worse as time goes on? I was diagnosed about 8 years ago but my levels have been pretty much the same the whole time. Hba1c varies slightly but always between 50 and 53. I don't have any glucose in my urine when not taking the Dapagliflozin and I have never had any of the classic diabetes symptoms: frequent urination, thirst, weight loss etc.

It's possible I've had slightly high blood sugar levels my whole life and just didn't know it. Like I said it was a completely unrelated blood test that picked it up.

 

[leonS]

Yes.

If you are type 1 something killed some of the cells that make insulin. This something is not very good at killing, it took many years to get to the stage where you were diagnosed as diabetic.

You reduced the amount of carbs in your diet and the remaining cells were able to cope.

But if you are type 1, the something will carry on killing, and eventually get to the stage where there are just not enough cells left.

The "if" is important, but it is as well to realise that type 1 is possible.

You will not get any of the symptoms that you mention unless your blood sugar is high.

 

[SteveC]

Thanks.

I have tried a normal diet with plenty of carbs too and that made no difference i.e. no increase in Hba1c or fasting blood sugar.

 

[KookyCat]

Thanks, this is all very interesting.

If it was late onset T1 would I expect it to be getting worse as time goes on? I was diagnosed about 8 years ago but my levels have been pretty much the same the whole time. Hba1c varies slightly but always between 50 and 53. I don't have any glucose in my urine when not taking the Dapagliflozin and I have never had any of the classic diabetes symptoms: frequent urination, thirst, weight loss etc.

It's possible I've had slightly high blood sugar levels my whole life and just didn't know it. Like I said it was a completely unrelated blood test that picked it up.

It’s worth checking out though, there are other types of diabetes, like MODY that can cause slightly elevated blood sugar levels, some of which don’t require medication. My cousin had one of the MODY types and it was originally misdiagnosed as type 2, but essentially he has slightly elevated blood sugar. It’s genetic and requires no treatment at the moment (may never be needed). There are at least 5 types of MODY I think and they’re all genetic but different in terms of potential complications and requirement for treatment. He also had no symptoms, it was picked up in a random test.

 

[SteveC]

Interestingly my diabetes nurse put me in touch with a specialist nurse at my local hospital who deals with MODY. She asked me a series of questions and then decided that because I have no family history of diabetes there was no point in doing a genetic test. Maybe I should pursue this avenue again and I will also ask about tests for T1 as suggested above.

Thanks for the help and ideas.

 

[Drummer]

Interestingly my diabetes nurse put me in touch with a specialist nurse at my local hospital who deals with MODY. She asked me a series of questions and then decided that because I have no family history of diabetes there was no point in doing a genetic test. Maybe I should pursue this avenue again and I will also ask about tests for T1 as suggested above.

Thanks for the help and ideas.

There was no haemophilia in Queen Victoria's ancestry - and Albert did not have it - but her daughters were carriers.
Spontaneous mutations do occur - all the time.

 

[KookyCat]

Interestingly my diabetes nurse put me in touch with a specialist nurse at my local hospital who deals with MODY. She asked me a series of questions and then decided that because I have no family history of diabetes there was no point in doing a genetic test. Maybe I should pursue this avenue again and I will also ask about tests for T1 as suggested above.

Thanks for the help and ideas.

My cousin had no family history either, except for my Dad, but as it turns out his Dad also has the same type of MODY but he was never diagnosed because he’s never had a HBA1C. He was just outside of the age range for the 40 “health check” and hadn’t had his blood sugar tested. His sister doesn’t have it but one of her kids does. Always worth discussing with the medicals 🙂

 

[SteveC]

I've been reading about The different types of MODY and the description of GCK-MODY matches me exactly. Interestingly my 75 year old mother was recently told her blood sugar was slightly raised. I will definitely be asking to be tested for this.