LADA?

@RainbowBrite sorry to read about your run around.
Unfortunately, you are not alone in the assumptions around types of diabetes. It seems the myth around type 1 only being diagnosed in childhood is still prominent amongst GPs even though more than half of the people with type 1 were diagnosed over the age of 20.
I am one of the "over 20" gang but the decision on which type was "you're too thin to have type 2" which, again is an assumption. Thankfully, it was correct for me but is still worrying.

We can't reverse the diagnosis or roll back the time and get it right first time but we can offer support and answer most questions.

I did not realize there is a link between gall bladder removal and type 1 can you tell me more?
Am waiting for cpep and anti gad results anyday now but my story is much the same as yours 10 years on insulin and within my bmi also walk miles and diet okay so really want answers now

Pretty much my story too. But what does it matter? You need insulin, then you need insulin. Labels don't matter. As for the tests, while they can prove T1, it's not necessarily conclusive. Mine wasn't but as far as my consultant is concerned I'm T1 and that's that.

barrym said:

Pretty much my story too. But what does it matter? You need insulin, then you need insulin. Labels don't matter. As for the tests, while they can prove T1, it's not necessarily conclusive. Mine wasn't but as far as my consultant is concerned I'm T1 and that's that.

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Its because of the chance to have sensors or even a pump if needed and because i dont like the look from folk who read in papers type 2 are fat and lazy only needing to diet for it to all go away ! I wish

Yes, I've been down the same route. The main problem with being wrongly labelled T2 is the difficulty in getting a pump or whatever later. It good to see that NICE is now providing better information for T1 diagnosis e.g. NICE Guidance NG17 "Type 1 diabetes in adults: diagnosis and management" https://www.nice.org.uk/guidance/ng17 indicates that T1 can occur in adulthood and can be slow to develop. Sadly many GPs and diabetes training courses just don't keep up.

borderter said:

Its because of the chance to have sensors or even a pump if needed and because i dont like the look from folk who read in papers type 2 are fat and lazy only needing to diet for it to all go away ! I wish

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I wish it were that simple. So few folk know the difference between T1&2 and think we all ate too much cake!

Sensor point is a good one. I wish you luck with that.

RainbowBrite said:

So I was originally diagnosed in 2013 with type 2. GP found it accidentally during a routine blood test and was shocked as I didn't fit the bill as such for a type 2 diagnosis. My hba1c has continued to creep up over the following years and I am now on insulin and metformin.

Today, I was seen in the diabetic clinic for the first time (5 years post diagnoses) and my mind is plain. The consultant has sent me for an antibody and cpeptide test straight away. She believes I could be type 1. There was a marker in my last blood test which is normally only there in type 1's. I've got other symptoms which she says can only really be linked to type 1's and I've had my gallbladder removed many years ago and I never knew there was a possible link.

So now having blood tests to check. Also being referred for an MRI scan of my pancreas. I really wonder why my GP never picked up on all these signs and if the test show I am type 1 I think I will feel really let down.

Sorry for the post....I kind of just felt the need to rant a bit.

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Funnily enough...

Was diagnosed as T2 early 2014 just after my son was born-i'd put weight loss down to me getting healthy before my son was born but had balanitis - blood test confirmed a high HbA1c (9.2% in old terms). Have worked tirelessly with diet and exercise (reduced to 49mmol in new money) which ultimately failed, then Metformin and low carb, then Gliclizide in the mix over 4.5 years. It was actually someone in work that had been through a similar journey that told me about the c-peptide and GAD test and to force the issue at my GP. 6 months of pushing finally got me referred to the hospital with HbA1c constantly over the 60mmol range for 18 months.

High c-peptide readings hinted that there was no wrong diagnosis and was to wait on the results (shared by my GP). I had my 6 month follow up earlier this week and was going in to ask for some drastic support as I felt beaten. I could see others that had reversed type 2 that were older and less fit than me-how the hell could they do it?

Imagine my surprise when the Dr started showing me T1 guidance and how I had flagged as LADA 5.5 years after original misdiagnosis - especially after the letter I had seen from him 3 months before. But the feeling of uselessness and self blame lifted. This isn't something I could control or blame myself on-my fog has lifted and I now need to change my outlook.

All I can do is thank the other LADA guy I know for recognising the same issues otherwise I could have went on trying something that was fundamentally futile and getting more and more down on it. It makes me wonder though why the GAD test isn't more widely used at the outset. I had asked 5 times for it and was told it wouldn't matter by my GP. How wrong they were. That's the most frustrating thing in my case.

I was diagnosed T2 in March 2017, at age 69. I controlled my sugars by following the LCHF regime, no meds. Then in early May I had a very severe episode of DKA, Diabetic Ketoacidosis and spent 4.5 days in the hospital recovering. I was put on insulin and IV treatment. The specialist told me I didn't present as a T2, but as a T1, but it was very rare to have DKA at my age as a T2. I'm on insulin awaiting the results of the blood work to test for antibodies, etc. The insulin was reduced even further yesterday because I've been having lows two/three times a day/night. My physician did not pick up on anything, nor did the diabetic educator and both knew my blood sugars were spiking for no reason at all before I had to be hospitalized. I will be very interested in finding out which type I am and what treatment is needed. While I was hospitalized I was fed an 'ordinary' diet and that set me back. I really have to cut back on the carbs (which I'm told is very necessary for my body [old school thinking]). The struggle is real and I feel for all trying to get a true diagnosis. It's sad that many of the med professionals still follow the unhealthy way of treating this disease. Good luck to everyone.

I was diagnosed 5 years ago, age 57 ...no symptoms ... found during routine blood test! Was not overweight and had a reasonably balanced diet. Metformin just made me ill ... lost 1.5 stone in 3 months. Have been on dipagliflozin for 4 years but Hb1ac now creeping up ... 8.3 last two tests. Tried carb counting, trying to keep under 130g a day, upped protein and fats so as not to lose more weight ... only 8 stone now. Blood sugars still high, so requested an appointment at diabetic centre, as had only seen GP or practise nurse. So went to clinic last Monday and have been told its NOT Type 2, but late on-set Type 1. Have started aloglyptin as well as the dipagliflozin. 5 days in, not seeing any change but guess I need to give it a chance. If after 3 months Hb1ac is not coming down, gliclacide is the next move, but ultimately, insulin.
I am just relieved to get an answer and pleased that it's not my mis-management of my "Type 2". AND, I have always said that if Im never diagnosed with anything worse, I'm ok with that!

My GP thought I was type 1 from day one and referred me immediately, also in the 'too thin and athletic and low body fat' for type 2. I didn't want to have anything to do with this diagnosis, fought against a lift-time on insulin for awhile, but after returning a c-peptide of less than 0.2 nmol/l and high levels of GAD antibodies, I'm resigned to the fact that she was correct and have accepted the need for insulin (after a brief episode in hospital).

I hope you feel like your current treatment is now working for you.

RainbowBrite said:

So I was originally diagnosed in 2013 with type 2. GP found it accidentally during a routine blood test and was shocked as I didn't fit the bill as such for a type 2 diagnosis. My hba1c has continued to creep up over the following years and I am now on insulin and metformin.

Today, I was seen in the diabetic clinic for the first time (5 years post diagnoses) and my mind is plain. The consultant has sent me for an antibody and cpeptide test straight away. She believes I could be type 1. There was a marker in my last blood test which is normally only there in type 1's. I've got other symptoms which she says can only really be linked to type 1's and I've had my gallbladder removed many years ago and I never knew there was a possible link.

So now having blood tests to check. Also being referred for an MRI scan of my pancreas. I really wonder why my GP never picked up on all these signs and if the test show I am type 1 I think I will feel really let down.

Sorry for the post....I kind of just felt the need to rant a bit.

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I had my gallbladder removed many years ago, too and didn't know there was a possible link until I read this post. I wonder why my GP "didn't think of anything else" (his words) when I had my DKA episode in May? If I hadn't had the DKA episode, with my glucose being through the roof for at least three months, I probably wouldn't have had the c-peptide test done, either. I think the med profession needs to have refresher courses in diagnosing diabetes, the proper tests for it and come into the 21st century. It's a very scary feeling knowing that a physician I've had for over 20 years doesn't seem that interested and seems to be close-minded about it. He actually said he thinks my episode is linked to the LCHF lifestyle. Two entirely different things. Yes, it's very scary.