What have i done?

[Tdm]

My after Daphne follow up with a different consultant. This one was postive about a possible pump (yes!) but after i said something along the lines of thinking i may have some of my own insulin production, she ordered a c-peptide.

Now, my diagnosis was on the basis of antibodies, i was about 117 a1c at diagnosis, and thin, was losing weight at diagnosis (on the cusp of being clinically underweight) and my tdd insulin is about 17.
Whilst i was waiting for the tests to come back i was on max glycaside and metformin and my pre-meal blood sugars got down to 7 at the very lowest (i think that was an accidental low carb meal)

But shes got me worried that she may be doubting my type 1 diagnosis.

Unfortunatly, this all came up at the end and i didn't ask why she was doing it.

Surely they can't change my diagnosis if they found antibodies at first?

 

[SB2015]

If you tested positive for the antibodies, they are there, and doing their work to destroy your beta cells. It can take a while and after they have completed their work, a good while after diagnosis these will not always register on an antibody test. You tested positive so that is Type 1.

The c-peptide will give a measure of how much insulin you are still making (from the remaining beta cells). I can’t see why that she preclude you from having a pump. The pump can be useful when you are on lower TDD as the pump enables you to do smaller doses, rather than a pen limiting you to help unit changes each time. The c-peptide will give them an idea of how far through the honeymoon period you are.

Let us know how you get on.

 

[Tdm]

Yes, think i'm worried about nothing, and whilst my initial cpeptide was on the low end of normal (as i remember) that was whilst i was on gylycaside so that would have been squeezing my pancy to get the last drops out.
It will be interesting to see how much of my own insulin i still make...if not much, i get bragging rights for my a1c, if a fair bit, then pancy gets the prize.
Anyone got any idea what the purpose of the test was other than idle curiosity...i know i should have asked!

 

[Inka]

Don’t worry about it @Tdm It’s probably just for information. A friend with Type 1 had her C Peptide tested after a year or so. She’s still Type 1 and nothing changed. It did explain some of the hypos she was having, as she was still making a little insulin.

 

[everydayupsanddowns]

Lots and lots of T1s still have a smidge of home-grown insulin production, even decades after diagnosis in some cases.

Hopefully it’ll just confirm things, and you’ll be put forward for pump therapy if you meet the criteria 🙂

 

[Tdm]

Hope so. I've done as much as i can with mdi, and, to be honest, would like more uninterrupted nights sleep.
My new dr seems a lot more pump positive, though i have a feeling it may be a bit of a wait.

I'm thinking omnipod. Wap it on, job done. And the dr suggested its a good place to start as there isn't the commitment.
I'm put off by the idea of it shreiking at me, but sounds like that's unlikely to happen.

 

[helli]

Wap it on, job done.

Even with HCL, I think your expectations of a pump are too high. You still have to carb count, deal with technology issues (there are a few threads about OmniPod and Libre 2+ losing connection), and changing your pump every 3 days.
The rare shrieking is the least of your problems.

Hopefully, you were being facetious. If not, I highly recommend you lower your expectations of perfection.

 

[Lucyr]

Surely they can't change my diagnosis if they found antibodies at first?

Think they can change to t2 if your insulin production is high enough and it’s been long enough, antibodies can give false positives. It might be that you produce some insulin but low enough that it doesn’t change things, or it could be high enough to consider managing your diabetes with medication other than insulin. Only the test results can say which way it will go.

 

[Tdm]

Even with HCL, I think your expectations of a pump are too high. You still have to carb count, deal with technology issues (there are a few threads about OmniPod and Libre 2+ losing connection), and changing your pump every 3 days.
The rare shrieking is the least of your problems.

Hopefully, you were being facetious. If not, I highly recommend you lower your expectations of perfection.

I meant, you put the pod on and there are no tubes to kink and it won't be pulled off by door handles! Really, i was just comparing patch pump to tubed. I know you still have to prebolus, count carbs, respond to hypos etc

 

[Tdm]

Think they can change to t2 if your insulin production is high enough and it’s been long enough, antibodies can give false positives. It might be that you produce some insulin but low enough that it doesn’t change things, or it could be high enough to consider managing your diabetes with medication other than insulin. Only the test results can say which way it will go.

I can't be managed on metformin and glycaside. They tried that when i was waiting the tests. The very lowest i got was 7. Mainly was in double figures. And that was max possible dose glycaside
I'd say i was typical type 1...a1c over 100 at diagnosis, thin, weight loss, insulin sensitive, and i went low carb and still needed as much insulin

 

[Lucyr]

I can't be managed on metformin and glycaside.

There’s loads more t2 meds than that, and some t2s find that after giving their body a rest with insulin they can then manage much more effectively on tablets. I’m not saying your t2 I’m saying it’s not impossible that you could be, since you’ve said you produce insulin, so it’s worth them testing.

 

[helli]

I meant, you put the pod on and there are no tubes to kink and it won't be pulled off by door handles! Really, i was just comparing patch pump to tubed. I know you still have to prebolus, count carbs, respond to hypos etc

As someone who has used both tubed and patch pumps, I would say the risk of tube kinks and being pulled off are a huge exaggeration. It never happened to me. It is incredibly easy to keep tubes under control under clothing.
The risk of catching a tube on a door handle are as mythical as "painful" finger prick testing.

There are pros and cons of both tubed and patch pumps. I have found the risk of skin reaction with the larger area of patch pumps is greater than the risk of tube kinks

 

[Tdm]

Mmm, more food for thought there!

 

[Tdm]

Also, if there are cannula issues, it may be more easy to see with a tube pump?

 

[helli]

Also, if there are cannula issues, it may be more easy to see with a tube pump?

And try alternative cannulas.
With a patch pump, there are no cannula options.

 

[Eternal422]

@Tdm as others have said, T1s can still be producing their own insulin, to some extent, years after diagnosis and especially during the “honeymoon” phase, so possibly the reason for the test is to determine how much, if any, you are producing and therefore what the likely TDD requirements are to see if suitable for a pump?

Like myself (on my thread about uncertainty over T1/T2) waiting for C Peptide test results, it is very worrying and that uncertainty can be quite unsettling, so I sympathise with you and hope you get clarity and certainty soon.

 

[SB2015]

Also, if there are cannula issues, it may be more easy to see with a tube pump?

… and you can just change your cannula. I tried three different cannulas before settling on my current one. Good to have the choice and different glues used so if there is any allergy you have other options. I have never had a blockage or kink in the tubing and that is 12 years. I did have one in that time that I caught in a door handle - 1 out of more than 1460. Is suspect pods falling off might be as bad.

BUT I have never used a patch pump so have no idea about how I would find those.

So many choices. Whatever you get for your first one will be a game changer, even though as @helli said there is quite a bit of work to do at set up and during use, whichever one you use. It does however make things more flexible.

 

[Tdm]

@Tdm as others have said, T1s can still be producing their own insulin, to some extent, years after diagnosis and especially during the “honeymoon” phase, so possibly the reason for the test is to determine how much, if any, you are producing and therefore what the likely TDD requirements are to see if suitable for a pump?

Like myself (on my thread about uncertainty over T1/T2) waiting for C Peptide test results, it is very worrying and that uncertainty can be quite unsettling, so I sympathise with you and hope you get clarity and certainty soon.

Yes, its like a rug being pulled from under your feet

 

[Inka]

I meant, you put the pod on and there are no tubes to kink and it won't be pulled off by door handles! Really, i was just comparing patch pump to tubed. I know you still have to prebolus, count carbs, respond to hypos etc

I’m exceptionally clumsy and I know that I’m far more likely to knock off the lumpy Omnipod than catch my pump tubing. It’s under my clothes and completely invisible and uncatchable. It’s also short. I never get why people think it’s some kind of 10 metre hosepipe thing dragging along behind you It’s minuscule and just a little link between the pump and cannula.

 

[trophywench]

The tubing is rather resilient, I'd say - more resilient than you initially believe it could be. Getting undressed is s slight challenge usually - even having a wee, wearing trousers and pump in side pocket of trs - if necessary to remove pump from pocket (depending on where cannula is sited) in order to pull knickers down you have to hold pump in your hand so then have to pull pants down one handed so no b. good if you're desperate to wee! - so that's summat you have to remember that you never used to need to know - however that bit also gets more frequent with the number of birthdays and/or you have a UTI or menstrual 'floods' so another bodily storm us wimmin need to face, deep sigh. And then if your pump juggling fails and the pump swings free only supported by its attachment to the cannula and you hear it go 'clunk' against the porcelain of the loo base and cringe - and you retrieve it with the handy nearest bit of the tubing and inspect it - you discover nowt wrong with it at all!