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416 weeks and counting...

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Northerner

Northerner

Admin (Retired)
Relationship to Diabetes
Type 1
Goodness, Facebook has just reminded me that it's now 8 years since I stopped needing basal insulin after needing 20 units a day at diagnosis in 2008 😱 I went for my 6-monthly review shortly afterwards, and the doctor I saw (who was not my usual consultant, he was a GPSI) said I would probably start needing it again within a few weeks 🙄 Well, 416 weeks later and I still don't need it... 😱 🙂
 
The pancreas is an over-rated organ. I like to think of it as "the other appendix".
 
Forgive my ignorance on such matters, but doesn't this suggest that your pancreas is trickling out enough insulin to meet your basal needs. Presumably, it can't cope when your glucose levels 'get serious'.

Also, doesn't it suggest that whatever knocked out your pancreas before is no longer doing so.

Does anyone have any theories about what went on and what is going on now?

Andy (nosey parker) HB 🙂
 
Andy HB said:
Forgive my ignorance on such matters, but doesn't this suggest that your pancreas is trickling out enough insulin to meet your basal needs. Presumably, it can't cope when your glucose levels 'get serious'.

Also, doesn't it suggest that whatever knocked out your pancreas before is no longer doing so.

Does anyone have any theories about what went on and what is going on now?

Andy (nosey parker) HB 🙂
Click to expand...
Yes that's right Andy 🙂 I had a C-peptide test done last year that showed that I am producing a 'reasonable amount of insulin' - in fact, more than 95% of Type 1s. I had a period of about 18 months prior to diagnosis where I was under extreme stress in my work - a very high profile and difficult project at the same time as the company was being taken over and 90% of the IT staff were to be TUPE'd to the Indian outsourcing company that would be taking over the function of the department :( I quit my job partly because it was making me ill generally. My weight declined over about 18 months, and I had other symptoms like heavy thirst, but I put that down to doing a lot more running etc. I was drinking 40 pints of milk a week at one point 😱 Then I caught a stomach virus that obviously pushed my pancreas over the edge and I ended up with DKA and in hospital. So, maybe the stress was a factor in overloading my pancreas over a long period to try and deal with elevated glucose, then the virus hit :( There was never any indication that I might be one of those fit and healthy people who got Type 2, as there was nothing to suggest I ever suffered from insulin resistance.

As such, it seems unlikely to have been an autoimmune response. Or maybe it was, but not a severe one - I really don't know 🙄 As long as I can manage it well, I'm happy, and whatever my type is I'm fortunate that it was diagnosed as Type 1 because that meant I was put on a flexible treatment that was well-suited to my situation i.e. insulin 🙂 I have always needed novorapid, but this has varied from 5 units a day up to 45 units a day 😱 I doubt that any oral medication could be that flexible 😱 I also haven't had to deal with the vagaries of basal dose adjustment forthe past 8 years, and I think it also means I have not needed to be as precise with my carb-counting as many 'traditional' Type 1s have to be, and I'm grateful for that 🙂

I know I'm not unique, because I have encountered others in a very similar situation to me over the years - one of the benefits of the DOC (Diabetes Online Community) - possibly more than many healthcare professionals who don't cast their nets as widely in case experiences 🙂
 
Yes, this is fascinating. Thank you for explaining. Sorry if I’ve missed this but have you had antibody tests done @Northerner? When they thought I might be MODY, I had them done. I was worried they would be pointless as it was years after diagnosis, but they did show 2 antibodies, which helped my consultant say I was Type 1.

And is anyone collating this information about all the people like yourself? Is it possible the pancreas can partially recover?

Edited to add - can you still manage without basal when you’re ill or do you use your bolus to correct any highs?
 
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Amazing @Northerner!

Maybe you hold the key to stopping autoimmune diabetes in its tracks. You could be the source of the CURE (in 10 years time, naturally) 😛
 
Congratulations on defying the medics @Northerner
Long may it continue
 
Inka said:
Yes, this is fascinating. Thank you for explaining. Sorry if I’ve missed this but have you had antibody tests done @Northerner? When they thought I might be MODY, I had them done. I was worried they would be pointless as it was years after diagnosis, but they did show 2 antibodies, which helped my consultant say I was Type 1.

And is anyone collating this information about all the people like yourself? Is it possible the pancreas can partially recover?

Edited to add - can you still manage without basal when you’re ill or do you use your bolus to correct any highs?
Click to expand...
No, I haven't had an antibody test, but given my situation the consultant doesn't think I am Type 1, it's just that that is the closest category to match my presentation and treatment requirements. Most Type 1s do actually still produce some of their own insulin, in varying amounts, but it's generally a very small amount (they did a study of Joslin 50-year medallists and found that most of them were producing a trickle). I've dealt with several consultants over the 12 years since my diagnosis, and they've all been surprised, which suggests it's not something that anyone devotes any time to - a bit like those really rare diseases that have no treatments because it's not 'worth' spending time researching them (obviously it woud be for the individuals affected!).

There's a lady I know - a former member here - who stopped needing insulin entirely after several years of being diagnosed Type 1, she just takes half a gliclizide tablet every now and then 😱

I've only been really ill on one occasion and I managed that with frequent bolus injections, a bit like you might do with a pump 🙂
 
Thank you for that. I’d find it fascinating anyway but I do have a personal interest too. I’ve always needed more bolus than basal eg when first diagnosed, I had 24 units of bolus insulin a day but only 1 unit of basal. My basal dose has increased since then but is still low.

Anyway, what most important is that it’s working for you and no matter what type you are things are well-controlled. 🙂
 
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