Hi,Yes, if you're a suspected T1 (LADA), seeing an endo and having at least a C-peptide test is a very good idea.
Should it turn out to be T1, insulin is the only treatment. For what it's worth, for me, starting insulin (when I was still diagnosed as a T2) was such a relief, I finally had a way to manage my BG instead of just being frustrated with numbers that wouldn't come down.
Excuse my ignorance, I'm not from the UK. But your profile says you're in the UK, why can't you get a referral to an endo on the NHS?
Has your nurse talked about the possible risks of DKA on flozins if you turn out to be a T1?
Type LADA or 1.5 are both the same thing, and they both mean T1 diabetes: caused by an autoimmune reaction killing your insulin producing cells. So if it is indeed T1 (LADA, 1.5), you'll produce less and less insulin until you cannot do without, no matter your diet or other medications.She said a T1 1/2 , a LADA
Flozins become a risk of DKA when you don't produce sufficient insulin. T1's are often advised to test for ketones to rule out DKA when their BG stays in the higher teens or higher for a bit. No ketones, no DKA.‘DKA’ & flozins - T1, is that only T1 as she says more like a T1 1/2? She said that I’d be unlikely to have a Hypo, which has been a concern in the past when my number was lower than 6 before going to bed.
I'm so sorry about the state of the NHS.NHS ha ha, sadly I’d be waiting for months and months. She is very knowledgable and we get on really well, I feel that she feels very self confident she can see the patterns.
I am not sure if she can, I will have to ask when I re-book with her after my holiday. I think that she does have the ear of the drs. They do listen to her because of her experience and length of time she has worked in the practice.Type LADA or 1.5 are both the same thing, and they both mean T1 diabetes: caused by an autoimmune reaction killing your insulin producing cells. So if it is indeed T1 (LADA, 1.5), you'll produce less and less insulin until you cannot do without, no matter your diet or other medications.
Flozins become a risk of DKA when you don't produce sufficient insulin. T1's are often advised to test for ketones to rule out DKA when their BG stays in the higher teens or higher for a bit. No ketones, no DKA.
But on flozins it's possible to have reasonable BG and still go into DKA because you pee out the excess sugar.
I'm so sorry about the state of the NHS.
Can your nurse order a C-peptide test?
Thanks. I’ve phoned surgery and hope to speak with the dr to see about referral/s. Think I’d just like to get a definite answer on type because at the moment it seems like guessing. I do fully trust my nurse but just want solid answer to be able to manage right decisions.Hi Angela - I was lucky enough to be able to speed up the diagnosis through my Bupa at work ( not free though! ) - but initially I was referred to an endocrinologist via the NHS and I had a choice of 3 clinics come through on the app after a week or so - I think the quickest appointment was around 8 weeks, longest was around 12 weeks. The doctor himself couldn't submit the antibody tests - had to go through the endo. Could you perhaps try to get the ball rolling before your hols directly with the doctor? If you are potentially on the wrong treatment regime better to find out sooner rather than later - especially as you mention your nurse said about taking insulin. Before I started taking insulin I feel there was no way I could suffer a hypo - once you start taking it you have to be very hypo aware. Still getting use to my dosing at the moment - I've heard the analogy of it being a marathon not a sprint. I have good days and not so good days - but my time in range is gradually improving and my last HbA1c test was better too (52) so going in the right direction. All the very best with getting your referral
this mirrors my experience almost exactly. Diagnosed type 2 6 years ago with HBA of 66. lost weight and low carb for 5 years reduced it to 38-40. then October sicker than Ive ever been. HBA1C of 110. Now about to go on insulin pump. there is nothing you or I could have done differently, we did what we could and we delayed this. Its a head destroyer but I am planning on getting my life back. You will too.Hi - I am posting this in case it mirrors anyone else' experience - someone can perhaps provide advice or it might help someone get to the bottom of their symptoms
I was diagnosed with Type 2 diabetes in Jan 2022 with an HbA1c of 99. I was immediately prescribed 4 metformin a day, but I did some research and decided to give low carb/exercise a go. I ignored the metformin, went low carb, hit the treadmill and within a year I lost 30kg (down from 120kg) and got the HbA1c down to 41. I was very happy as I was determined not to take the pills.
However by the end of 2023 my HbA1c had crept back up to 83 - I blamed myself for being less strict over the summer food wise, I had picked up an injury which set me back a little exercise-wise but had kept the weight down and thought I was doing okay so it was upsetting. So 2024 has been about being stricter on the regime, started using a CGM, but no matter what I did the only way I could get my blood sugar to acceptable levels was more and more exercise, to the point it was getting me down, it was becoming all consuming. My last HbA1c was 57 in September - my regime just wasn't doing enough anymore and I can tell from my CGM it isn't tracking to go down. My blood sugar would creep back up again without eating and I was getting very frustrated with it. Even with an low-carb meal ( < 10g) my blood sugar would seem to spike disproportionately and stay high unless I exercised - I felt something was 'off' - as though there was another factor at play.
I spoke to my GP who basically just wanted to put me on metformin because 'that is what we do for T2 patients' but I insisted I wanted to eliminate other contributing factors so got referred to an endocrinologist - the GP couldn't request those sorts of tests himself. I ended up going privately as the wait was too long and was concerned about my blood sugar riding so high.
Yesterday I had the results and have been told that I am not T2 but actually LADA and I am currently awaiting someone to contact me from the local diabetes team regarding going onto insulin. The theory is that whilst I am still producing insulin ( honeymoon period?) it isn't sufficient to win the battle with diet and exercise alone.
Given there seems to be a common reporting that 10% of T2 diabetics are misdiagnosed and are in fact LADA I find it incredible that LADA is not even mentioned on the NHS website, mentioned by the GP nor tested routinely ( cost I suspect ) - I really shouldn't be asking for a c-peptide test just because I read about it on the internet! I will always wonder if I had the test back in 2022 I could have done things differently.
I am obviously disappointed that I will be going down the insulin path but I will be maintaining my diet/exercise which will hopefully keep my dose as low as possible for as long as possible.
Thanks for reading this far
yes you can have no antibodies and still be LADAI was diagnosed as type 2 two years ago. My consultant now thinks I've LADA because of decreasing cpeptide, weight loss (already slim), poor response to metformin, etc. Blood tests not showing any antibodies though. Has anyone else experienced negative antibodies who had LADA? Thanks
You need a GAD 65 antibodie testWhat tests do you need for LADA, my HBA1C is 107, currently waiting for Endo referral which says it has an average waiting time of 17 weeks. Meanwhile the GP is doing nothing and I feel terrible. Low cortisol aswell.
yes you can have no antibodies and still be LADA
Hello, just a quick reply because it is after my bedtime.I ignored the metformin
LADA is real, but it's simply recorded as T1, because that's what it is. An autoimmune reaction killing off the beta cells.My endo told me that LADA isn't real so I wonder if that's why the NHS don't acknowledge it...regardless, there should be more awareness about how diabetes can present as the current understanding is so lacking. Type 1 is assumed to be rapid onset and only occurring in children and type 2 is associated with adults or people who are overweight and there's no in between in most people's minds.
Do you have a source for this?The other thing to mention, is that tasting ammonia would indicate too much protein - we are all told to avoid fat, and if we start to reduce carbs, the temptation is to reduce carbs without increasing fat. However - that means the amount of energy available goes down, and the body will start to metabolise protein for energy - this is not a good state of affairs, because that will actually generate the very kinds of toxins around your body that contribute to the inflammation which may be affecting all sorts of things.
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