Back to square one

[lizabetic]

Hey Guys,
I haven't been around for a while but wanted to tell you about a reply I got today regarding a letter sent to Exeter about MODY genes... well basically they got back to me to say that there was "very little chance" that I would have monogenic diabetes.
They did give me name sof tests I could request to look into Type 1. I wrote about it on a facebook group for MODY and had a reply that the same has happened to them and it may be worth contacting Kovler who were more willing to look into it for them.
I don't think I will bother personally. If nothing happens and i'm still at the same dead end in another year and a half when my diabetes is 5 then maybe I will...

So yep, i'm back to square one feeling like the only person on the planet like me!

Also, something which I wouldn't mind the answer too, if I am type 1, that is antibody caused, thats attacking the pancreas right?, then how comes its not completely died through being attacked... is it possible to be half diabetic 😛

 

[Northerner]

...Also, something which I wouldn't mind the answer too, if I am type 1, that is antibody caused, thats attacking the pancreas right?, then how comes its not completely died through being attacked... is it possible to be half diabetic 😛

Sorry to hear that another possibility has proved fruitless. I would say that it is possible to have a slowly perishing pancreas as this is more than likely what happened to me (and also to people diagnosed as Type 1.5. I had quite a few symptoms for at least two years prior to my diagnosis which suggests my pancreas was failing, then I succumbed to a virus which totally knocked out any remaining beta cell function I had and I ended up in hospital. Since then, it's possible that my pancreas has recovered somewhat. Although I am on insulin, my total daily insulin requirements have reduced considerably since diagnosis. In particular, my basal insulin has dropped by as much as 85% from diagnosis levels, which is about 20% of my total daily dose requirements - normally this should be around 40-50% of TDD, so there is clearly something going on!

So, although I am not like you, I am also odd - one size doesn't fit all, and sometimes people like us pop up and confuse the medics!

 

[lizabetic]

Yep, totally get where you're coming from. I just wish they could actually tell me for definate! Its not like its an impossible thing to do so why don't they do it? I've my next endo appointment in Jan so I will ask about the tests then, as well as tell him I want to go back to seeing him 6 months apart rather than 9! Unless he says so himself.

Also, why am I hypo-ing without medication? This has still never exactly been answered. I suppose this is what would be dropping my average anyway, but they haven't differed greatly.

Funny but my mum said that I was always thirsty and irritable as a kid, and I was diagnosed at 16 so it is all odd. Also, everything i'm reading about LADA/Slow Onset say the older you are the slower progression to full pancreas deterioration. Why am I the exception? :/

 

[Northerner]

Yep, totally get where you're coming from. I just wish they could actually tell me for definate! Its not like its an impossible thing to do so why don't they do it? I've my next endo appointment in Jan so I will ask about the tests then, as well as tell him I want to go back to seeing him 6 months apart rather than 9! Unless he says so himself.

Also, why am I hypo-ing without medication? This has still never exactly been answered. I suppose this is what would be dropping my average anyway, but they haven't differed greatly.

Funny but my mum said that I was always thirsty and irritable as a kid, and I was diagnosed at 16 so it is all odd.

Can't remember if this has been mentioned to you before, but has reactive hypoglycaemia ever been explored for you? This is where your pancreas produces an excess of insulin in response to you eating something (might be some particular type of carb) - too much insulin then causes your levels to fall quickly resulting in a hypo. Could be you have had something like this all your life.

 

[Ellie Jones]

You sort of answered Yourself!

I've been diagnosed since 1989 as a diabetic and put on insulin for the duration of my pregnancy (told pregnant and diabetic in the same phone call) but I've only been permanently on insulin and had a proper diagnoses of T1 since 1996..

It's a long story and my GP finally speaking to his friend then Medical Endo consultant so he could pull me out from the diabetic clinic that I got my diagnoses of T1. Slow On Set..

The medical Endo consultant was mortified with my status of health and what the diabetic team had allowed me to go through... I was 6.5 stone physically and mentally exhausted and in a real dark place..

All the indicators of T1 was there when GD diabetes was first diagnosed in 1989, as I already had sub-clinical hypothorisum, it happened at the early stages of my 1st trimester of my pregnancy

If I hadn't had my son or my following daughters, I probably would have at some point gone the usual route of diagnoses.. Not picked up my diabetes until my pancreas failed to produce enough insulin to support me and hit DKA..

So yes I would asked for the tests that Exeter has suggested you ask for, so it will either rule in or out T1 diabetes