Am I Rare?

[Ria3771]

Hello fellow diabetics,
I wonder If I could pick your brains. Eight years ago at aged 42 I was diagnosed with Type 1. This in itself is a unusual as I had already sought help for Diabetic retinopathy before even being diagnosed!. I don't carry any antibodies associated with Type 1, I am producing insulin myself which is making insulin delivery very difficult and hypo's very common. I inject 12 units of Levimer a day and generally about 3 or 4 units of fast acting at each meal, I have again been told this is a very small amount. I asked for some genetic testing to determine whether I have another form of diabetes or indeed another condition causing diabetes. I was seen by a genetics expert who requested some bloods at the start of this year, I have just recently received correspondence form his office that he has retired and that the person taking over his position had talked to the diabetic team at the hospital and have decided without testing that I am type 1 and no testing will be done. My team are aware how much I struggle as I cannot tell how much insulin my body is producing and I tackle hypo's frequently, My Ophthalmologist at the hospital has never come across someone like myself who devolved symptoms of diabetes before diagnoses. I was registered as sight impaired in 2015, Two years after diagnosis. I was just asking for some advice from anyone who has experienced the same. Thanks

 

[Lamont D]

Hi and welcome to the forum.

No doubt, some type 1s will be along soon

I have a condition that creates more insulin and because of this, I am non diabetic.
But that doesn't mean I don't have a problem with glucose levels because if I'm not in control. I have Hypoglycaemic episodes if I eat carbs that I'm intolerant to.

I do have a rare condition, and I wouldn't wish that on even my worst enemy. The time and testing it took to get a true diagnosis was well over a decade and could have been fatal if I had not been referred to this certain specialist endocrinologist who recognised the symptoms and did save my life.
If you haven't got a specialist endocrinologist or a team that deals with T1 diabetes, then I would certainly get one.

You could be in the honeymoon period, where you are still producing insulin.
But that's just off the top of my head.

Keep safe and get the proper treatment.

 

[LittleGreyCat]

@Ria3771

You say that you have been diagnosed for 8 years and are still producing your own insulin.
Have you had any tests to establish how much insulin you are producing?
Given the length of time diagnosed you seem more like a T2 with a failing pancreas.

There is a continuing debate over the classification of long term insulin under producers, often regarded as LADA with an extended honeymoon period.

Are you producing enough insulin to manage your BG with the aid of a strict diet?

Has your diabetic team considered alternative medication including those which stimulate the pancreas to produce more insulin (but possibly wear out in time)?

 

[Ria3771]

Hi and welcome to the forum.

No doubt, some type 1s will be along soon

I have a condition that creates more insulin and because of this, I am non diabetic.
But that doesn't mean I don't have a problem with glucose levels because if I'm not in control. I have Hypoglycaemic episodes if I eat carbs that I'm intolerant to.

I do have a rare condition, and I wouldn't wish that on even my worst enemy. The time and testing it took to get a true diagnosis was well over a decade and could have been fatal if I had not been referred to this certain specialist endocrinologist who recognised the symptoms and did save my life.
If you haven't got a specialist endocrinologist or a team that deals with T1 diabetes, then I would certainly get one.

You could be in the honeymoon period, where you are still producing insulin.
But that's just off the top of my head.

Keep safe and get the proper treatment.

Thank you for this, I have often thought this could be the case but the other unseal characteristics make me wonder. Thank you

 

[Ria3771]

@Ria3771

You say that you have been diagnosed for 8 years and are still producing your own insulin.
Have you had any tests to establish how much insulin you are producing?
Given the length of time diagnosed you seem more like a T2 with a failing pancreas.

There is a continuing debate over the classification of long term insulin under producers, often regarded as LADA with an extended honeymoon period.

Are you producing enough insulin to manage your BG with the aid of a strict diet?

Has your diabetic team considered alternative medication including those which stimulate the pancreas to produce more insulin (but possibly wear out in time)?

Thanks for this maybe I need to keep on at my diabetic team, They have just written me off as Type 1 which I have always thought wasn't the case. They have never given me any data with regards to my insulin production and when I first spoke to my team they said I could come off of insulin and be prescribed tablets but since they had the phone call with genetics they have changed their minds. Thanks

 

[Daibell]

Hi. The standard test to find out how much insulin you are producing is the C-Peptide test so may be worth asking for that test to help confirm the right diagnosis

 

[Ria3771]

Hi. The standard test to find out how much insulin you are producing is the C-Peptide test so may be worth asking for that test to help confirm the right diagnosis

Thank you

 

[TashT1]

I read somewhere recently that 5-10% of Type 1s don’t have any antibodies. I don’t & am considered type 1 which is sort of confirmed by my c-peptide & hopefully definitively confirmed with the next c-peptide later this month.

It does sound like LADA, the honeymoon period can last multiple years. It also sounds like the retinopathy was a missed opportunity to diagnose your diabetes. Unless you were tested & you hba1c was fine at that time?

Personally I’d just keep pushing for the c-peptide test & if you ask they should tell you any results of previous tests.

 

[Ria3771]

I read somewhere recently that 5-10% of Type 1s don’t have any antibodies. I don’t & am considered type 1 which is sort of confirmed by my c-peptide & hopefully definitively confirmed with the next c-peptide later this month.

It does sound like LADA, the honeymoon period can last multiple years. It also sounds like the retinopathy was a missed opportunity to diagnose your diabetes. Unless you were tested & you hba1c was fine at that time?

Personally I’d just keep pushing for the c-peptide test & if you ask they should tell you any results of previous tests.

Thanks for this, I did do some digging last night and yes it does say you can be antibody negative and still be type 1. I have had a c-peptide test but any results were never shared with me. The opticians just kept prescribing stronger and stronger glasses, My Ophthalmologist wrote to them once she diagnosed me with Diabetic Retinopathy and it was safe to say I never went back to them. Thank you it does appear it could be LADA.

 

[NicoleC1971]

Just to say that in your situation you should at least have a cgm or flash glucose (fsl) sensor to sort out your basal . The constant and unpredictable hypos do suggest LADA but as your body or pancreas changes you need to be able to tweak basal and bolus/carb ratios which are never set in stone in any case.
The doses you are on are more than I'd take and less than many other type 1s would take - we are all different with different diets and degrees of insulin resistance (t1 also get insulin resistant) . It seems unlikely that the retinopathy was caused by the diabetes unless you were undiagnosed for a long time but even so having more stable sugars is going to stop them worsening.
I had a period of rocky control (pregnancy and beyond) which resulted in retinopathy that despite everyone's best efforts ran amok and has left me partially sighted. Just saying!
So as discussed do go and nag the consultant to clarify things via c peptide test and to get prescribed the FSL 2 (has alerts for low blood sugar)!

 

[Ria3771]

Just to say that in your situation you should at least have a cgm or flash glucose (fsl) sensor to sort out your basal . The constant and unpredictable hypos do suggest LADA but as your body or pancreas changes you need to be able to tweak basal and bolus/carb ratios which are never set in stone in any case.
The doses you are on are more than I'd take and less than many other type 1s would take - we are all different with different diets and degrees of insulin resistance (t1 also get insulin resistant) . It seems unlikely that the retinopathy was caused by the diabetes unless you were undiagnosed for a long time but even so having more stable sugars is going to stop them worsening.
I had a period of rocky control (pregnancy and beyond) which resulted in retinopathy that despite everyone's best efforts ran amok and has left me partially sighted. Just saying!
So as discussed do go and nag the consultant to clarify things via c peptide test and to get prescribed the FSL 2 (has alerts for low blood sugar)!

Thank you, I've just been promoted to the Libre 2 and yes I think I do need clarification. Thank you, everyone has been so helpful.