Have been being treated as type 2 for three years...

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Ikey the tinker

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Type 1
yet it turns out I'm slow onset type 1 so was put on insulin last Friday - insulatade before bed (4 units) and novorapid before meals (6 units).

Sugars have come down from 20s to between 11-13 and the hostpital are monitoring me for the next few weeks.

Would you recommend increasing my dosages immediately to bring my sugars down within range? Also, how important is carb counting? Does 1 unit to every 3 grams of carb sound right?
 
Ikey the tinker said:
yet it turns out I'm slow onset type 1 so was put on insulin last Friday - insulatade before bed (4 units) and novorapid before meals (6 units).

Sugars have come down from 20s to between 11-13 and the hostpital are monitoring me for the next few weeks.

Would you recommend increasing my dosages immediately to bring my sugars down within range? Also, how important is carb counting? Does 1 unit to every 3 grams of carb sound right?
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Thank goodness you've had a correct diagnosis - it's certainly taken some time! 😱 I think you need to follow the guidance of your DSN for now, as he/she tries to find your ratios. I think all people new to insulin normally go through this period of gradual adjustment - trying to start adjusting too much or applying carb-counting rules can be counter-productive when no patterns have been recognised as yet. Certainly, you should ask to be put on a carb-counting course like DAFNE - get yourself on the waiting list for whatever is on offer in your area.

I don't understand how they can miss these things for so long, when there are simple tests that can be done. I'm sure your levels will improve dramatically in the near future now you are getting the right treatment. 🙂 Be aware though, that too rapid a drop may bring problems like transient background retinopathy (not permanent, but not desirable!), so a steady fall is preferable.
 
I wouldn't make any adjustments of my own right now.

When I first started on insulin the DSN would call me check my values and then recommend which injection I needed to change and by how much. There was a kind of carb counting going on as the dietician recommended how many carb portions for a meal.

For now - though it is boring I would try to eat similar amounts of carbs for each breakfast, similar amounts for each lunch and similar for each dinner. So say 30 for breakfast 50 lunch 80 dinner. I am not recommending those values just trying to clarify that I don't mean breakfast, lunch and dinner should all be the same.

That way you can judge better whether the dose is matching your food, rather than having one day where it seems to work and one where it doesn't. If you agree with your DSN that is what you are doing - it should make it easier for your DSN to adjust your doses - till you find a stable pattern.
 
Hi cant advise but wanted to say thank god you have now been diagnosed correctly it must be a relief to finally have some clarity . Good luck
 
Thanks everyone. It's interesting re-reading old posts about such new things to me as basal and bolus, and carb counting, all of which meant nothing to me when I was on metformin!

Coming down from 26 mml last week to 12ish now and just getting used to what dosages I need to take.
 
That is terrible that it has taken them that long to discover your type 1 but at least they have found out now so you can get better control. I definately think just stick with what your dsn have told you to do as you say your already getting into the 10's rather than the 20's. Good luck with adjusting to the new regime 🙂 x
 
Ikey the tinker said:
yet it turns out I'm slow onset type 1 so was put on insulin last Friday - insulatade before bed (4 units) and novorapid before meals (6 units).

Sugars have come down from 20s to between 11-13 and the hostpital are monitoring me for the next few weeks.

Would you recommend increasing my dosages immediately to bring my sugars down within range? Also, how important is carb counting? Does 1 unit to every 3 grams of carb sound right?
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Wow Ikey, that's awful. I'm so lucky, I was rediagnosed after six months and don't need insulin yet. It seems increasing numbers of people are being misdiagnosed in the first instance, but to go three years. Your doctor should be shot. I hope things improve for you quickly now they've finally got it right.
 
Yeah, it's classed as slow onset type 1, which I wasn't aware of. Often thought I was type one because of my age, weight and lifestyle, but the metformin worked fine for the first couple of years before my pancreas seems to have packed in altogether 7 weeks ago.

Looking forward to getting to grips completely with injecting - am already feeling better with some insulin inside me.
 
Ikey the tinker said:
Yeah, it's classed as slow onset type 1, which I wasn't aware of. Often thought I was type one because of my age, weight and lifestyle, but the metformin worked fine for the first couple of years before my pancreas seems to have packed in altogether 7 weeks ago.

Looking forward to getting to grips completely with injecting - am already feeling better with some insulin inside me.
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You can change your details to Type 1 or 1.5, if you prefer. It sometimes helps people quickly relate to your likely treatment when you are asking/answering questions. 🙂
 
Northerner said:
I don't understand how they can miss these things for so long, when there are simple tests that can be done.
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Unfortunately a lot of hospital pathology labs don't do the necessary antibody tests. I had to go to London to get a GAD antibody test and when it came back negative I was told that I could still be LADA (slow onset T1) despite the test because 30% of LADA sufferers do not test positive (I suppose because the attack on the pancreas is relatively weak there are not enough antibodies to give a positive test). The fact that I am not insulin resistant and my pancreas has virtually stopped making insulin would seem to indicate that I am indeed T1 but the hospital and my gp still have me down as T2. In practice it is irrelevant what type I am as I am on MDI, taught myself to carb count and am quite well controlled - if you're getting treatment that works does it really matter what the diagnosis is?
 
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