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Hi all - first post here, looking for some advice on test interpretation. I should say that I'm a molecular biologist by training, with an undergraduate / medical student level of understanding of diabetes, so I know the basics already.
Some relevant background to start with.
FAMILY HISTORY
* 1 parent insulin dependent diabetic for ~35 years.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin and diagnosed as Type I. No record of molecular tests done so I have no idea about antibodies.
* 1 sibling currently insulin dependent.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin. Diagnosed with LADA after ruling out a couple of the MODY syndromes. Tested for GAD antibodies 5 times - initially negative but became positive over time. C peptide levels initially within normal range but declined over time. During the "honeymoon period", their condition deteriorated permanently after any illness - e.g. after a cold, their glucose control would worsen and not get better, requiring more medication each time until they became insulin dependent
So overall there's a strong family history suggestive of LADA, with autoimmune attacks on the pancreas occurring in bouts triggered by other illnesses. Both parent and sibling were skinny / normal weight.
SELF
* Diagnosed diabetic in early 2018 at age 40.
* I initially dismissed symptoms as stress (I'd made it far enough that I thought I was clear given both relatives had onset almost the exact day they turned 30) but eventually it became undeniable. Bought myself a test kit, got a fasting reading of >12 mmol/l, notified GP who did a confirmatory blood test and got put on metformin.
* No antibodies detected at this stage, so I was initially diagnosed as Type II but with a weather eye out for the likelihood of LADA. 118kg at time of diagnosis, been roughly constant since (yes I'm a lardbucket, yes I'm trying to work on it, no it's not easy).
* Hba1c of 75 mmol/mol at diagnosis. Metformin dose escalated to max 2g/d, which brought Hba1c to 49 mmol/mol.
* At this point I was still seeing fasting blood glucose levels of 8+ by finger prick, and 15+ after any meal including light carb (~20g) meals. That didn't really agree with an Hba1c of 49 mmol/mol given that this supposedly indicates an average blood glucose of 7.9 mmol/l.
* The hospital consultant said that I was just worrying myself, that I must be coming down lower overnight, to stop doing finger prick tests and trust in the Hba1c measurements. Foolishly, I did.
* Metformin gave me the raging shits for about the first year. Horrible stuff, but so it goes.
* Things stayed roughly stable until the end of 2019 - weight constant, Hba1c rising very slowly. Hospital consultant suggested saxagliptin when my Hba1c hit 55 - I asked for time to think due to reported GI side effects, at which point the consultant discharged me to the care of the local GP team. Not accustomed to patients having questions, I guess.
* Early to mid-pandemic (~early 2021) - Hba1c levels still creeping up, now at ~65 mmol/mol. Started on saxagliptin, which to date has had no noticeable effect whatsoever, but at least there are no side effects, so what the hell, I'll keep taking it. Regular monitoring was a bit disrupted through 2020/21, so I can't point to specific events that exacerbated anything.
* Nov 2021 - From here on I started feeling REALLY rough - waking regularly overnight to pee / drink, brain fog and difficulty staying awake after meals. Decided to trial the Freestyle Libre, which immediately showed I was in a bad way. 24hr average blood glucose was 13.5 mmol/l, with a general fasting level of ~10 mmol, and no readings below 9 mmol/l over the course of 2 weeks. Excursions to 18+ after meals.
* The timing is potentially coincidental, but it did seem that things got sharply worse when I had my booster jab, which would fit with a general immune stimulus causing an autoimmune exacerbation - i.e. consistent with my sibling.
* At some point during the pandemic I lost 8kg without really changing diet - I think most of that was after things got worse recently.
* GP did a new Hba1c in mid Dec (back up to 74 mmol/mol), immediately prescribed Gliclazide MR 30mg (commenced 23/12) and ordered a new round of antibody tests. The lab refused to run the tests as they said there was no clinical value in them given the previous negative test in 2018. Has anyone else had this happen?
* 30mg gliclazide did sod all, so they've just upped the dose to 60mg a few days ago (commenced 05/01). Now feeling slightly more human, but fasting glucose is still around 8.5 mmol/l. Postprandial peaks are a bit lower now. I expect they'll keep gradually titrating the gliclazide dose up unless I start getting lows (no chance).
***************************
So, that's me. Overall it could be Type II just getting worse, or it could be a slow honeymoon period for LADA. The labs refuse to run the tests that would tell them which is which, and I'm now on gliclazide, which will probably accelerate the beta cell deterioration if it is LADA.
In desperation I paid privately for a new set of antibody tests - bloods taken today, should hear back in a week or so. At the same time I got a metabolic panel done, which came back within hours and showed the following:
* Fasting glucose: 8.9 mmol/l (yikes)
* Hba1c: 68.3 mmol/mol (gliclazide bringing it down a bit?)
* Cholesterol: 5.2 mmol/l (v slightly up but nothing to panic about)
* HDL% of total: 23% (fine)
* C reactive protein: 5.3 mg/l (slightly up but not unexpected)
* Insulin: 32.5 mIU/l (above normal range)
I think the elevated insulin result suggests it's type II and not LADA, but I'd be grateful for expert opinions, particularly given that the gliclazide will be forcing my beta cells to work overtime.
The number is well above the normal fasting range, I know - but is it far enough above the normal range? A blood glucose level of 8.9 mmol/l is what most healthy people would see at the peak of a glucose tolerance test, and insulin would be expected to go much higher in those conditions. The eMedicine site (which I can't link yet) gives a reference range of 18-276 miU/l for insulin levels after glucose administration.
Can I in fact interpret the insulin result at all given the fact that I'm on three different meds (metformin, saxagliptin, gliclazide) and had such a high fasting blood glucose? At some point in the next few days I should get the results of the antibody test and a C-peptide test, but I guess for the latter the same questions apply: is it interpretable at all my current treatments?
Another more general question is that ever since 2018, my Hba1c has been lower than expected given my actual blood glucose results. When things were brought initially "under control", my Hba1c was 49 (= average glucose of 7.9 going by the calculator on this site) but I was never getting readings under 8. Today, the Libre is predicting an Hba1c of 77, but the blood test showed 68. It's not a big discrepancy, but it's been consistent for several years now. Is this something I should worry about and tell the GP about?
Any comments welcome! I promise to update with antibody test results once I have them.
Some relevant background to start with.
FAMILY HISTORY
* 1 parent insulin dependent diabetic for ~35 years.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin and diagnosed as Type I. No record of molecular tests done so I have no idea about antibodies.
* 1 sibling currently insulin dependent.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin. Diagnosed with LADA after ruling out a couple of the MODY syndromes. Tested for GAD antibodies 5 times - initially negative but became positive over time. C peptide levels initially within normal range but declined over time. During the "honeymoon period", their condition deteriorated permanently after any illness - e.g. after a cold, their glucose control would worsen and not get better, requiring more medication each time until they became insulin dependent
So overall there's a strong family history suggestive of LADA, with autoimmune attacks on the pancreas occurring in bouts triggered by other illnesses. Both parent and sibling were skinny / normal weight.
SELF
* Diagnosed diabetic in early 2018 at age 40.
* I initially dismissed symptoms as stress (I'd made it far enough that I thought I was clear given both relatives had onset almost the exact day they turned 30) but eventually it became undeniable. Bought myself a test kit, got a fasting reading of >12 mmol/l, notified GP who did a confirmatory blood test and got put on metformin.
* No antibodies detected at this stage, so I was initially diagnosed as Type II but with a weather eye out for the likelihood of LADA. 118kg at time of diagnosis, been roughly constant since (yes I'm a lardbucket, yes I'm trying to work on it, no it's not easy).
* Hba1c of 75 mmol/mol at diagnosis. Metformin dose escalated to max 2g/d, which brought Hba1c to 49 mmol/mol.
* At this point I was still seeing fasting blood glucose levels of 8+ by finger prick, and 15+ after any meal including light carb (~20g) meals. That didn't really agree with an Hba1c of 49 mmol/mol given that this supposedly indicates an average blood glucose of 7.9 mmol/l.
* The hospital consultant said that I was just worrying myself, that I must be coming down lower overnight, to stop doing finger prick tests and trust in the Hba1c measurements. Foolishly, I did.
* Metformin gave me the raging shits for about the first year. Horrible stuff, but so it goes.
* Things stayed roughly stable until the end of 2019 - weight constant, Hba1c rising very slowly. Hospital consultant suggested saxagliptin when my Hba1c hit 55 - I asked for time to think due to reported GI side effects, at which point the consultant discharged me to the care of the local GP team. Not accustomed to patients having questions, I guess.
* Early to mid-pandemic (~early 2021) - Hba1c levels still creeping up, now at ~65 mmol/mol. Started on saxagliptin, which to date has had no noticeable effect whatsoever, but at least there are no side effects, so what the hell, I'll keep taking it. Regular monitoring was a bit disrupted through 2020/21, so I can't point to specific events that exacerbated anything.
* Nov 2021 - From here on I started feeling REALLY rough - waking regularly overnight to pee / drink, brain fog and difficulty staying awake after meals. Decided to trial the Freestyle Libre, which immediately showed I was in a bad way. 24hr average blood glucose was 13.5 mmol/l, with a general fasting level of ~10 mmol, and no readings below 9 mmol/l over the course of 2 weeks. Excursions to 18+ after meals.
* The timing is potentially coincidental, but it did seem that things got sharply worse when I had my booster jab, which would fit with a general immune stimulus causing an autoimmune exacerbation - i.e. consistent with my sibling.
* At some point during the pandemic I lost 8kg without really changing diet - I think most of that was after things got worse recently.
* GP did a new Hba1c in mid Dec (back up to 74 mmol/mol), immediately prescribed Gliclazide MR 30mg (commenced 23/12) and ordered a new round of antibody tests. The lab refused to run the tests as they said there was no clinical value in them given the previous negative test in 2018. Has anyone else had this happen?
* 30mg gliclazide did sod all, so they've just upped the dose to 60mg a few days ago (commenced 05/01). Now feeling slightly more human, but fasting glucose is still around 8.5 mmol/l. Postprandial peaks are a bit lower now. I expect they'll keep gradually titrating the gliclazide dose up unless I start getting lows (no chance).
***************************
So, that's me. Overall it could be Type II just getting worse, or it could be a slow honeymoon period for LADA. The labs refuse to run the tests that would tell them which is which, and I'm now on gliclazide, which will probably accelerate the beta cell deterioration if it is LADA.
In desperation I paid privately for a new set of antibody tests - bloods taken today, should hear back in a week or so. At the same time I got a metabolic panel done, which came back within hours and showed the following:
* Fasting glucose: 8.9 mmol/l (yikes)
* Hba1c: 68.3 mmol/mol (gliclazide bringing it down a bit?)
* Cholesterol: 5.2 mmol/l (v slightly up but nothing to panic about)
* HDL% of total: 23% (fine)
* C reactive protein: 5.3 mg/l (slightly up but not unexpected)
* Insulin: 32.5 mIU/l (above normal range)
I think the elevated insulin result suggests it's type II and not LADA, but I'd be grateful for expert opinions, particularly given that the gliclazide will be forcing my beta cells to work overtime.
The number is well above the normal fasting range, I know - but is it far enough above the normal range? A blood glucose level of 8.9 mmol/l is what most healthy people would see at the peak of a glucose tolerance test, and insulin would be expected to go much higher in those conditions. The eMedicine site (which I can't link yet) gives a reference range of 18-276 miU/l for insulin levels after glucose administration.
Can I in fact interpret the insulin result at all given the fact that I'm on three different meds (metformin, saxagliptin, gliclazide) and had such a high fasting blood glucose? At some point in the next few days I should get the results of the antibody test and a C-peptide test, but I guess for the latter the same questions apply: is it interpretable at all my current treatments?
Another more general question is that ever since 2018, my Hba1c has been lower than expected given my actual blood glucose results. When things were brought initially "under control", my Hba1c was 49 (= average glucose of 7.9 going by the calculator on this site) but I was never getting readings under 8. Today, the Libre is predicting an Hba1c of 77, but the blood test showed 68. It's not a big discrepancy, but it's been consistent for several years now. Is this something I should worry about and tell the GP about?
Any comments welcome! I promise to update with antibody test results once I have them.
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