Should I press for more help?

[Juneell]

Hi. I've joined the LADA group. It not sure if I should be here. Was diagnosed as diabetic ten years ago after losing a stone and a half in weight, Drinking constantly and still being thirsty. My blood glucose was 33 and I was put on gliclacide. My initial diagnosis was Type 2. After about a year and further mess the diabetic nurse got me An appointment with a specialist who did. GAD65 test which came back as very high and he thought it "might" be LADA. I began to walk a lot every single day and watch what I ate. Nothing sweet, very limited fruit etc. After about two years I came off all meds as my HBA1C was good. Two years later, after an increase in BG levels and often spiking quite high, the specialist put me on metformin which I've been on ever since at gradually increasing dosage levels. I am now on the maximum dose and have been for some years. I tried to get a clear diagnosis as every specialist I saw told me it was something different. I had a C-peptide test which showed I was still making insulin. My current position is that my HBA1C is steadily rising. Some retinopathy has been detected and my BG cam still spike after my evening meal. I have never been given a clear diagnosis. Usually they think it might be LADA or MODY.
It's now ten years since this all started. I was 60 at the time, now 70 and I have been discharged by the current specialist.
I am somewhat dissatisfied with my treatment and wonder if I should press for further help? Has anyone had a similar experience and has anyone any advice?

 

[HSSS]

I was under the understanding a positive gad test was definitely type 1/1.5/LADA. If thats what they all think I cannot understand why you’ve been discharged on metformin alone. Ultimately it means insulin even if you’ve prolonged any honeymoon with diet and other medications. Though 10 yrs does sound about the longest I’ve heard of. I’d be going back and demanding more answers and up to date c peptide if it was a long while ago.

 

[ert]

Unfortunately, the Gad antibody test isn't conclusive on its own as people in the general population can have Gad antibodies and never get diabetes. It is only significant with a very low c-peptide.
Also, diabetes and complications due to higher blood sugars do get worse over time without strict blood sugar control. I would suggest that you test your meals before and two hours after with a glucometer to see what foods are causing your blood sugar spikes.

 

[HSSS]

Unfortunately, the Gad antibody test isn't conclusive on its own as people in the general population can have Gad antibodies and never get diabetes. It is only significant with a very low c-peptide.
Also, diabetes and complications due to higher blood sugars do get worse over time without strict blood sugar control. I would suggest that you test your meals before and two hours after with a glucometer to see what foods are causing your blood sugar spikes.

Thanks. I’ve done a bit of further reading and seen that as you say anti gad 65 is considered highly suggestive and worthy of further testing for other antibodies. There seems to be a slight possibility of other conditions causing high levels. I think I was guilty of making assumptions that the potential for false negatives correlate to true positives. Thanks for making me aware.

 

[Daibell]

My LADA took around 10 years until insulin become essential. I was initially diagnosed at age 60 as T2. This long period of time can cause real confusion with the GP as many just assume T2 regardless. I did go thru Met, then Glic plus Sitagliptin all at max dose with ever increasing HBA1C but my GP still insisted I was T2 and initially refused insulin. My experience tells me to take control if in doubt and don't be afraid to fight for the tests etc. I've never had any tests vis the NHS but had GAD and C-Peptide done privately; worth the money to know where you are.

 

[Juneell]

My LADA took around 10 years until insulin become essential. I was initially diagnosed at age 60 as T2. This long period of time can cause real confusion with the GP as many just assume T2 regardless. I did go thru Met, then Glic plus Sitagliptin all at max dose with ever increasing HBA1C but my GP still insisted I was T2 and initially refused insulin. My experience tells me to take control if in doubt and don't be afraid to fight for the tests etc. I've never had any tests vis the NHS but had GAD and C-Peptide done privately; worth the money to know where you are.

Thanks very much for this. It's good to find someone with similar experience and a similar age. We sound very similar except you're on insulin and I'm still on 2000mg metformin. I've had GAD65 and was told it was very high at 500 and c-peptide was just positive. I have a meds review next week and I will definitely be more assertive.

 

[Brunneria]

@Juneell

Sorry to read that you have been left in limbo for so long.
You don't actually mention what your HBA1c results have been, and that they are rising.
I'm certainly not prying into your test results, but you could use this as leverage, combined with the retinopathy diagnosis, to ask for a referral back to the specialist, and a request for an expert medication review.

It is quite possible that your surgery nurse has never encountered another LADA or MODY, and isn't aware of the treatments they require.

Please ask for a referral, if only to put your mind at rest, and hopefully find a regime that prevents further complications from developing.

 

[Juneell]

@Juneell

Sorry to read that you have been left in limbo for so long.
You don't actually mention what your HBA1c results have been, and that they are rising.
I'm certainly not prying into your test results, but you could use this as leverage, combined with the retinopathy diagnosis, to ask for a referral back to the specialist, and a request for an expert medication review.

It is quite possible that your surgery nurse has never encountered another LADA or MODY, and isn't aware of the treatments they require.

Please ask for a referral, if only to put your mind at rest, and hopefully find a regime that prevents further complications from developing.

Thanks for this. I have. Meds review on Tuesday and will be pressing for more help. The hospital I was referred to before kept losing specialist so I was seeing someone different every time so I'll be asking for referral to a different hospital. My HBA1C has risen over the last 18 months from 6.4 to 6.9. I do everything I can in terms of diet and exercise but think it's time for more help now. ThAnks for your advice.