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What the...rediagnosis

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SkintoMcGinto

SkintoMcGinto

New Member
Relationship to Diabetes
Type 1.5 LADA
Hello all!

Newbie on this forum, but not new to diabetes. Had the shock of my life 5 1/4 years ago when I was diagnosed as T2, but have tried to keep things ticking over. Lost 4 stone from my heaviest, REALLY started cycling and have changed my lifestyle. Thought I had cracked it with diet and exercise, then had a massive shock after 3 years-A1c back above where I was when diagnosed. Metformin followed and again thought it was ok, but then started to see gradual degradation. Gliclizide on top didn't seem to make a change and I asked for more tests. After 6 months of pushing I finally have the diagnosis of LADA, which initially helped me a bit but now (before going on to insulin-tables all changed to Modified Release until then) I'm now a bit on edge. Unsure why because to me nothing has changed, but my sugars are creeping up already-despite me lowering carb intake further! Waking average is 12, have had some at 16.

Anyone else felt like this and recently?
 
Welcome to the forum Skinto, from a T2 who's 4 1/2 years in.
Have you been taken off metformin and gliclizide?
How long have you had the LADA diagnoses? 2 years? How long have you been on insulin?
Someone who knows more about the insulin regimes will be around.
 
LADA is just type one with a posh name. Type 1 can ONLY be treated with insulin. Cutting carbs will help just a little, but not much. High blood sugars require more insulin.

Have I got it right that you have only just now been told that you have LADA? Have you been given insulin? If so it sounds like the dosage needs adjustment.
 
No insulin as yet-starting in 3 weeks. My diagnosis was changed 2 weeks ago. It was then that I was changed from ordinary to slow release versions of Metformin & Gliclizide.

I average about 65g of carbs a day where I can but have always had issues with DP in the morning.

I have been thinking that I need on insulin sooner rather than later but it seems that all of a sudden things are moving quicker than before. Either that or I'm not quite as good as counting the carbs as I used to be...!
 
Welcome to the forum. 🙂
 
Others wiser than I will correct me if I am wrong, but no medication taken by mouth is effective for type 1 or type 1.5. As you have a diagnosis and have been PROMISED the correct treatment what is the point of waiting three weeks?

No counting of carbs or any other inappropriate treatment will work!
 
Hi, welcome to the forum. My understanding of LADA is that it is a slow onset of T1 and T2 meds will help initially.

As you say things seem to be moving quicker than before, it’s because your pancreas is no longer able to produce enough insulin to cope with the few carbs you do eat , so you need insulin now ! As you are past the time that T2 meds can help. Having said that Metformin can help with insulin resistance.

Apologies if you are already doing this .I think you should give your team a shove un the right direction as I really don’t understand the delay in getting you started on insulin.

Are you under the care of the diabetes team at a hospital ?
 
Last edited:
leonS said:
Others wiser than I will correct me if I am wrong, but no medication taken by mouth is effective for type 1 or type 1.5. As you have a diagnosis and have been PROMISED the correct treatment what is the point of waiting three weeks?

No counting of carbs or any other inappropriate treatment will work!
Click to expand...
This is exactly where my head is at to be honest. Unsure whether this is the stance within Edinburgh to assess whether I'm still in a honeymoon period or not. I've had 5 years already, misdiagnosed-think it is time. Which is weirdband what is probably why I'm so conflicted - spent the last 5 years trying to reverse it to *avoid* insulin!!
 
Ljc said:
Are you under the care of the diabetes team at a hospital ?
Click to expand...
Yep-it was they who changed the meds and gave me this ''assessment" period. I'm now toying with calling the hospitalmclinic and asking for this to be brought forward. That and a DAFNE course. I'd rather do what I believe is best now.
 
SkintoMcGinto said:
Yep-it was they who changed the meds and gave me this ''assessment" period. I'm now toying with calling the hospitalmclinic and asking for this to be brought forward. That and a DAFNE course. I'd rather do what I believe is best now.
Click to expand...
I would most definitely contact them as they really do need to know what is happening with your levels.
 
SkintoMcGinto said:
No insulin as yet-starting in 3 weeks. My diagnosis was changed 2 weeks ago. It was then that I was changed from ordinary to slow release versions of Metformin & Gliclizide.
Click to expand...
Others know about this more than me. However, my understanding is metformin is only for T2, not T1/1.5/LADA. Honeymoon period for 5 years?
 
Type 1 (and 1.5) not enough insulin produced
Type 2 insulin not used properly.
Meds which make the body use the insulin better will NOT work where there is not enough insulin in the first place.

Type 1.5 is a much slower onset than classic type 1, (perhaps 5 years). The improvements seen are possibly more due to the reduction in carbs eaten than to any effect of the medication.

The only justification in taking any medication is that it achieves what it is suposed to achieve, insulin will do this. It is not something to be avoided at any cost. There are significant advantages in being insulin dependant type 1 over being type 2. I eat what I like, within reason, for a start.

I don't understand the delay. It is like saying to a man with a broken leg; "We know what is wrong, we know that you need your leg in plaster, but we won't do that for three weeks. In the mean time hop around and use this parachute (it will not do anything for your problem).
 
I think all of the advice above has pretty much made my mind up. I'll call them tomorrow and see whether I can get in earlier than my appointment (2.5 weeks away) and force the issue. I had thought that the change in tablets had made a difference in the first week, but obviously didn't!
 
Like @leonS I too do not understand the delay in getting you onto insulin. Once you are on it and your ratio’s have been sorted out (don’t worry about that as they sort that out) you will feel oh so much better in yourself

Please let us know how you get on.
 
Cheers for the advice all. To be honest I think I was glad that I had been correctly diagnosed after years of beating myself up for not getting to grips with it, and think I've taken it as read that I hadn't been great the last few months because the c-peptide result came back as if I had been wrong to push for that and the GAD test. But the fact that I've returned to strict carb counting during what they called an assessment phase and am struggling to keep things normal definitely makes me feel like I need to take control. Will come back with results...!
 
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