Newly diagnosed - GAD Test Positive - LADA? What’s next?

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Inka said:
Many of the Type 1s who have them have them approved by their hospital team. Not all Type 1s get them.
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Almost all are approved by a hospital team, I think. And the latest proportion I saw was 55%, I think. (Or was it 60%.) (Presuming the proposed NICE updates to the guidelines goes through a CGM (most often a isCGM, or Libre) should be the default.)
 
Regarding life expectancy with Type 1, this is based on historic data. The treatment and testing available today is so much better than it was 15 years ago and getting better.
And even if boiling up testtubes of urine, people have been awarded the HG Wells medal for living over 80 years with diabetes. So with today's technology, the outlook is even better.

For my personal experience, I was diagnosed 18 years ago this week. Based on the technology that was available then, I was told "everyone will see some complications after 8 or 9 years". More than 10 years after that, I still have no complications - my eyes are fine, my feet are fine, my kidneys, liver, heart,... all fine.
 
Hi Mark and welcome

Your in the right place and already I see you have got loads of good advice.

I am still to have my diagnosis confirmed. Initial diagnosis was on 21st October by GP as type 2 with Hba1c 115. I've been treating it as type 2 with diet and exercise and as of 22nd December it had dropped to 55 without medication. My symptoms were weight loss and like you thirst in the night and having to get up to go to the toilet during the night. Also had a dry mouth. My GP did c peptide after 5 weeks of initial diagnosis which came back as normal and they confirmed the diagnosis as type 2. Then on 17th December I was told no we have GAD test result back which are positive and your defo type 1 and was referred to the hospital. Attended hospital on 22nd December, 2021. Fantastic experience so much different. Seen both nurses and then the consultant. Consultant said she didn't know what it was as I present symptoms of t1 and t2, weight loss associated with type 1 and then the lowering of the Hba1c (without medication) looks more like type 2 but could be LADA. She said I could see a rise in bs levels within the next 4 weeks and move to insulin therapy but then again she said she has patients who 5 years down the line still don't require any medication. So I am just being monitored for now and attend again end of March. Having Hba1c repeated by the GP this Thursday so really hoping it has dropped further. Consultant told me that she will not diagnose t1 as the GAD test result is not conclusive and she will be running all the tests again, although didn't say when. Was told to monitor my bs levels at home and only contact them before the 3 month period is up if my levels are above 10 and remain there and won't come down. So far the only elevated reading I get is the morning one and the rest of the day they can mostly be in the normal (non diabetic range).

It has been a really really stressful and emotional time. So much to get your head around and the future is a worry. So glad I joined here (should have done it sooner). I have been able to connect with some truly inspirational and amazing people experiencing the same as me and that's been such a help. I suppose the comfort in our situation is we get time to make changes, adjust and try to come to terms with the mental aspect. Most type 1s are hospitalized and leave with insulin and it must be such a shock to have to deal with all that at one time.

In my case they don't know so yes with the GAD thing and weight loss it looks like type one (LADA) slow onset. Consultant said something had insulted my pancreas and whilst diet had taken the pressure off her guess was it would get tired again and stop producing insulin but when she didn't now. Then again it could be type 2 and then again it could be down to the the stress and trauma I experienced last year and may all sort itself out so just have to wait and see. The mental aspect of the whole thing is by far the worst. Physically I feel great and my symptoms cleared within 3 days of me changing my diet but its always hanging over you like a dark cloud.

I would say get yourself referred to the hospital pronto they are the experts and know exactly how to deal with this rather than the GP and DN not being able to make their minds up. I was referred instantly on the basis of the GAD test. Anything I can help with please let me know. I don't have a lot of answers but can listen and share my experience as others on here have done for me.

R
 
MarkH said:
I have to do the Pep today. Need to eat carbs first then urine test after 2 hrs I think. Do I still take metformin with the meal?

Carbs for the test - There isn’t any in the house other than chocolate I haven’t yet been emotionally able to bin.

Stressed? - Yeah esp after reading the life expectancy stats. However I’m hoping managed plus with looking after yourself it can be normal
GAD result not sure will find out.
No history of diabetes in the family.

Do you have a libre on the nhs?
Does the nurse prescribe the insulin?
Does the nurse give the diagnosis/label?

The one unexpected benefit is my sight. I’ve worn glasses for 5/6 years. 2 years ago I’d had a well man check and glucose was fine. Even 5/6 years ago click Guide on the tv was unreadable. I just kept buying bigger TVs to compensate After 4 weeks of metformin I’m like a human speed camera reading number plates at 100 metres
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Did you do the cpeptide? Funny thing is my DN called today, wants to do a full bloods and cpeptide . I said do I need to eat carbs ? She said no just make sure your sugars are above 8… anybody heard of this rule before ?
 
EmmaL76 said:
Did you do the cpeptide? Funny thing is my DN called today, wants to do a full bloods and cpeptide . I said do I need to eat carbs ? She said no just make sure your sugars are above 8… anybody heard of this rule before ?
Click to expand...
F7E9FE76-945C-4C02-B5C7-CE37FAF1BB0B.jpeg
@EmmaL76

You asked re GAD Looking at this it’s 30.9 should be below 25
Ironically I do have epilepsy which is mentioned, developed age 30, no seizures in 12 years

I rang the surgery to organise going in to leave the pep sample and pick up my prev results see image.

On arrival the same receptionist I’d spoken to said you need to get the sample here by12.30 when they are collected, and you can’t leave them overnight. Why it was never mentioned on the prev call argghhh lol … so back again 2moro after a baked potato for breakfast

I rang the Diabetes unit at the hospital and they stated I can’t be referred till this pep test is done.
 
richardmillar11 said:
Most type 1s are hospitalized and leave with insulin and it must be such a shock to have to deal with all that at one time.
Click to expand...
Where did you get this information from?
My perception is that MOST people with Type 1 are not hospitalised but experience varies a lot.

Most people with Type 1 are diagnosed as adults and it comes on slower than for children which gives us time to visit the GP and have test before we reach DKA and end up hospitalised.
 
richardmillar11 said:
Hi Mark and welcome

Your in the right place and already I see you have got loads of good advice.

I am still to have my diagnosis confirmed. Initial diagnosis was on 21st October by GP as type 2 with Hba1c 115. I've been treating it as type 2 with diet and exercise and as of 22nd December it had dropped to 55 without medication. My symptoms were weight loss and like you thirst in the night and having to get up to go to the toilet during the night. Also had a dry mouth. My GP did c peptide after 5 weeks of initial diagnosis which came back as normal and they confirmed the diagnosis as type 2. Then on 17th December I was told no we have GAD test result back which are positive and your defo type 1 and was referred to the hospital. Attended hospital on 22nd December, 2021. Fantastic experience so much different. Seen both nurses and then the consultant. Consultant said she didn't know what it was as I present symptoms of t1 and t2, weight loss associated with type 1 and then the lowering of the Hba1c (without medication) looks more like type 2 but could be LADA. She said I could see a rise in bs levels within the next 4 weeks and move to insulin therapy but then again she said she has patients who 5 years down the line still don't require any medication. So I am just being monitored for now and attend again end of March. Having Hba1c repeated by the GP this Thursday so really hoping it has dropped further. Consultant told me that she will not diagnose t1 as the GAD test result is not conclusive and she will be running all the tests again, although didn't say when. Was told to monitor my bs levels at home and only contact them before the 3 month period is up if my levels are above 10 and remain there and won't come down. So far the only elevated reading I get is the morning one and the rest of the day they can mostly be in the normal (non diabetic range).

It has been a really really stressful and emotional time. So much to get your head around and the future is a worry. So glad I joined here (should have done it sooner). I have been able to connect with some truly inspirational and amazing people experiencing the same as me and that's been such a help. I suppose the comfort in our situation is we get time to make changes, adjust and try to come to terms with the mental aspect. Most type 1s are hospitalized and leave with insulin and it must be such a shock to have to deal with all that at one time.

In my case they don't know so yes with the GAD thing and weight loss it looks like type one (LADA) slow onset. Consultant said something had insulted my pancreas and whilst diet had taken the pressure off her guess was it would get tired again and stop producing insulin but when she didn't now. Then again it could be type 2 and then again it could be down to the the stress and trauma I experienced last year and may all sort itself out so just have to wait and see. The mental aspect of the whole thing is by far the worst. Physically I feel great and my symptoms cleared within 3 days of me changing my diet but its always hanging over you like a dark cloud.

I would say get yourself referred to the hospital pronto they are the experts and know exactly how to deal with this rather than the GP and DN not being able to make their minds up. I was referred instantly on the basis of the GAD test. Anything I can help with please let me know. I don't have a lot of answers but can listen and share my experience as others on here have done for me.

R
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@richardmillar11

Thx for the long response - Apols for mine typed on the phone

Hmm this is so similar to me. I wonder if going on Metformin was a mistake and I should have tried to just diet and gym first hmm

Just had GAD result - Positive 30. Should be below 25 to be negative
What was your GAD?

Cheers
 
helli said:
Where did you get this information from?
My perception is that MOST people with Type 1 are not hospitalised but experience varies a lot.

Most people with Type 1 are diagnosed as adults and it comes on slower than for children which gives us time to visit the GP and have test before we reach DKA and end up hospitalised.
Click to expand...
Helli

Let me correct that statement to some people only find out they are type 1 diabetic when they have to go to A & E and are diagnosed there.
 
MarkH said:
@richardmillar11

Thx for the long response - Apols for mine typed on the phone

Hmm this is so similar to me. I wonder if going on Metformin was a mistake and I should have tried to just diet and gym first hmm

Just had GAD result - Positive 30. Should be below 25 to be negative
What was your GAD?

Cheers
Click to expand...
HI Mark

I don't actually know what my GAD result was. I was going to ask but at the appointment I just though I had enough to cope with that day and when the consultant said she would be repeating them anyway I though just leave it. I may pluck up the courage to ask at the next consultation if I do I will share it. In any event I suppose its positive and thats that.

I was on metformin for one week then felt my sugar levels were coming too low and stopped taking them after 1 week on the advice of the DN. Looking back I think what was wrong was I changed my diet immediately and I suppose my sugar levels being so high the drop felt like they were too low when in actual fact they were not.

With me diet and exercise has made a massive difference. Push the GP to do the Hba1c in say 4/5 weeks time. Mine didn't want to do it but the DN did it after about 4 weeks when taking the blood for the c peptide and the GAD and in 4 weeks it was down to 85. Then when the hospital did it another 4/5 weeks later it was down to 55 and I am having it done again this week. I understand it is a picture of what your blood sugar levels have been over the past 3 months which is why there is not point doing it until three months pass but for me it really helped mentally to know that my effort was making a difference and it may help your mental state a bit know that you are moving in the right direction!
 
EmmaL76 said:
A couple of weeks usually. I had to chase mine up. Never ever google your life expectancy! Trust me, I’m recovering from health anxiety from doing just that. If you keep all your bits and bobs in check, BG, BP cholesterol and try and stay fit and healthy, I’d like to think we have the chances of living as long as the next person!
Click to expand...
Just to confirm after re reading my post, the c peptide takes a couple of weeks… that’s not me predicting your life expectancy
 
EmmaL76 said:
Just to confirm after re reading my post, the c peptide takes a couple of weeks… that’s not me predicting your life expectancy
Click to expand...
@EmmaL76 I dunno possibly about right after my carb load full English in preparation for my pep test .

My GAD is 30, not way off the 25 grey area.

I exercise on my bike and need to start back running. The flapjacks and juice that’s off the agenda is presumably ok whilst on the bike as per normal, to keep the sugars up as they are getting depleted on rides/runs?
 
MarkH said:
@EmmaL76 I dunno possibly about right after my carb load full English in preparation for my pep test .

My GAD is 30, not way off the 25 grey area.

I exercise on my bike and need to start back running. The flapjacks and juice that’s off the agenda is presumably ok whilst on the bike as per normal, to keep the sugars up as they are getting depleted on rides/runs?
Click to expand...
Exercise can be a bit of trial and error. Bike riding does seem to be a good choice, well the circuit I use is nice and steady… no crazy stuff. That usually keeps my sugars fairly steady followed by a slight drop. Running can be a whole different ball game. My advice is to build up to the run for a little while, I mean walk, then light jog. Not just go from resting to forest gump as that gives me one hell of a spike! Sorry can’t remember if you said you were taking insulin or meds currently ? If not no need to worry about the drops during workout, but obviously if you are that needs to be monitored
 
@EmmaL76 Just meds. No I meant prior to Dec when this started I’d drink juice on my rides, eat flapjacks/gels to keep my sugars up. Presumably you can eat these and drink the juice if your exercising them off, otherwise you’d collapse on the bike
 
MarkH said:
@EmmaL76 Just meds. No I meant prior to Dec when this started I’d drink juice on my rides, eat flapjacks/gels to keep my sugars up. Presumably you can eat these and drink the juice if your exercising them off, otherwise you’d collapse on the bike
Click to expand...
I’ve never really had to bump my sugars up during exercise but I don’t take any meds at all. Saying that my workouts would only last a max of 60 mins (havnt moved my butt in months tho so this is all from memory) as I’m underweight I would eat the equivalent amount of what I’d worked off in peanut butter when I’d finished. But that’s just me, am I’m a bit strange lol
 
Hello Mark, I have just caught up with your chat, you should not worry to much about life expectancy to much because as you suggest you are now aware of looking after yourself better, and are getting all the health checks (full MOT`S) that a lot of people don`t for various reasons, one being they can`t be bothered, until it is to late, I am glad I am now on a basel / bolus regime, after 20 yrs of oral meds Gliclazide / Metformin, ended up on 3 x850g Metformin and a high dose of Gliclazide daily which gave me TERRIBLE reflux, now (touch wood) the acid has gone even with spicy food, If you do stay on Metformin ask for the slow release, it did help, albeit to late as I became type 1 LADA, and been previously ignored by the Doc. I started my insulin and said goodbye to the tablets, December HBA1C 44, best for ten years.
 
richardmillar11 said:
Hi Mark and welcome

Your in the right place and already I see you have got loads of good advice.

I am still to have my diagnosis confirmed. Initial diagnosis was on 21st October by GP as type 2 with Hba1c 115. I've been treating it as type 2 with diet and exercise and as of 22nd December it had dropped to 55 without medication. My symptoms were weight loss and like you thirst in the night and having to get up to go to the toilet during the night. Also had a dry mouth. My GP did c peptide after 5 weeks of initial diagnosis which came back as normal and they confirmed the diagnosis as type 2. Then on 17th December I was told no we have GAD test result back which are positive and your defo type 1 and was referred to the hospital. Attended hospital on 22nd December, 2021. Fantastic experience so much different. Seen both nurses and then the consultant. Consultant said she didn't know what it was as I present symptoms of t1 and t2, weight loss associated with type 1 and then the lowering of the Hba1c (without medication) looks more like type 2 but could be LADA. She said I could see a rise in bs levels within the next 4 weeks and move to insulin therapy but then again she said she has patients who 5 years down the line still don't require any medication. So I am just being monitored for now and attend again end of March. Having Hba1c repeated by the GP this Thursday so really hoping it has dropped further. Consultant told me that she will not diagnose t1 as the GAD test result is not conclusive and she will be running all the tests again, although didn't say when. Was told to monitor my bs levels at home and only contact them before the 3 month period is up if my levels are above 10 and remain there and won't come down. So far the only elevated reading I get is the morning one and the rest of the day they can mostly be in the normal (non diabetic range).

It has been a really really stressful and emotional time. So much to get your head around and the future is a worry. So glad I joined here (should have done it sooner). I have been able to connect with some truly inspirational and amazing people experiencing the same as me and that's been such a help. I suppose the comfort in our situation is we get time to make changes, adjust and try to come to terms with the mental aspect. Most type 1s are hospitalized and leave with insulin and it must be such a shock to have to deal with all that at one time.

In my case they don't know so yes with the GAD thing and weight loss it looks like type one (LADA) slow onset. Consultant said something had insulted my pancreas and whilst diet had taken the pressure off her guess was it would get tired again and stop producing insulin but when she didn't now. Then again it could be type 2 and then again it could be down to the the stress and trauma I experienced last year and may all sort itself out so just have to wait and see. The mental aspect of the whole thing is by far the worst. Physically I feel great and my symptoms cleared within 3 days of me changing my diet but its always hanging over you like a dark cloud.

I would say get yourself referred to the hospital pronto they are the experts and know exactly how to deal with this rather than the GP and DN not being able to make their minds up. I was referred instantly on the basis of the GAD test. Anything I can help with please let me know. I don't have a lot of answers but can listen and share my experience as others on here have done for me.

R
Click to expand...
Hi Richard
Can I ask what your GAD / C Peptide results were and whether your on tablets?
My GAD is 30.9 - Under 5 normal, only above 25 is positive
I’m awaiting C Peptide.
What scores GAD/C Peptide will define a diagnosis and dictate whether I’m put on insulin?
Cheers
Mark
 
MarkH said:
Hi Richard
Can I ask what your GAD / C Peptide results were and whether your on tablets?
My GAD is 30.9 - Under 5 normal, only above 25 is positive
I’m awaiting C Peptide.
What scores GAD/C Peptide will define a diagnosis and dictate whether I’m put on insulin?
Cheers
Mark
Click to expand...
Hi Mark

I don't know what the result was. I should have asked the consultant but I didn't. She just said it was inconclusive and she would be running it again. I won't be back with her until end March and I will ask and certainly I will share it. It seems that yours is barely positive and I have done some research and by the sounds of it, it will be very slow progression although don't rely on what I say there are others on here in a better position to comment than me. In short if my result is the same as yours i'll be very very happy. Also I have read a report on here where the GAD test was re-done and it had returned to normal so don't be getting too upset about a fast progression to insulin therapy. My Hba1c was down to 55 on 22nd December, 2021 and the consultant didn't start me on any medication. I only had metformin for 1 week on 19th October, 2021 then was advised to stop it as I felt I was coming low (but I wasn't. I think looking back because my sugars were so high when they did come down I just noticed it more) as of today its still 55. So I think you give yourself 3 months and you'll see an improvement. If I have any developments i'll certainly let you know but for now everything is ok and going in the right direction. I just have to monitor levels at home and if they are sustained above 10 and won't come down then I need to contact the hospital. So far my spikes are in the morning with two wheetabix and in the evening if I eat potatoes. So I have cut that out. Sugars are always high in the morning with the longer I lie in bed could be up to 8 but usually 7. When I was getting up around 6am they would have been in and around 6.6/6.7. If I eat a meal out with a starter (no pud) its went up to 15.5. I take a walk for an hour now every evening after dinner which brings the levels down to the 5s or 6s. You'll get the hang of it but the main thing is not to panic for now just do the diet and light exercise and you'll be grand.
 
OK so the latest is
Urine C Peptide is 45785 pmol/l so thats 4.57 in the other scale? Normal is 0.5-2?
Urine C Peptide/Creatine Ratio 4488.7 pmol/mmol
Urine C Peptide/Creatine Ratio of LESS than 79.5 pmol/mmol supports a diagnosis of T1
My GAD being slightly high they have put down to Epilepsy meds (I developed around age 30 seizure free 11+ years).
So apparently I'm not type 1 I'm type 2
Metformin 500 x 4 and Im down to a morning reading of 123/6.8
Awaiting the next nurse apt ...
 
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