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

[MarkH]

Hi,

I’m 48

I was diagnosed diabetic late Dec 2021
I’d lost 14-18 lb over 8/9 weeks via lots of gym/diet/no booze. Intentionally, or so I thought. I’m 12.10 (178lb) now from around 13-10/14 (192 to196).
I was thirsty at night.

Random well man check mid Dec to go into 2022.
Blood sugar HB1CA was 98
Ketones in urine was negative - nurse stated thus likely I had lost the weight naturally and likely to be T2.

Put on metformin and have been able to get my graph down from 17.9 to 7/8.5 in the am before breakfast with the tablets and long walks.

2 days ago more tests came back after 4 weeks
Islet negative
GAD positive

Nurse at GP surgery called me and stated likely T1 LADA and another nurse will call me next week, again a GP nurse who knows more.

What happens now?
Do I need to be referred to specialist at the hospital?
Redo the GAD test?
Am I def type 1 LADA or could I still be type 2?
If it is LADA will I take insulin now or when my pancreas stops producing insulin? Is this something that’s usually months or years?
Obv want a second opinion from specialist before starting insulin.

Somewhat stressed and confused

Cheers

Mark

 

[EmmaL76]

Hi. Very similar to my own situation and quite a few others on here.
I’ve been diagnosed and re diagnosed several times. Like you I tested positive for GAD only, anything over 4 or sometimes 11 produces a positive result. Mine was 55 which is still considered a low positive result. Problem with GAD is that it can be present in normal population for various reasons, some type 1’s have it with results into the 1000’s and some don’t have it at all, and some type 2s have it also. On its own, particularly low tilter, they would usually retest after a period of time.. I’m still waiting. I’m classed as type unknown but treat myself as a type 2 which it working for me for now. It can be a stressful time, I hope it’s not worrying you too much? There is so much help available on here just reach out whenever.
Do you know your GAD score ? Is there any family history of diabetes ?

Just to add, with that positive result they will most likely assume type 1 to be cautious. You will probably be given insulin. I was, they just said give it a go with small amounts. I don’t use it anymore but they say to keep some in the fridge in case things take a sudden turn for the worse.

 

[EmmaL76]

Me again, keep thinking of things to say… if slow progressing type 1 is confirmed, taking a little insulin will take the pressure off your pancreas which means you may be able to keep producing for longer than without it. As for time frame, it’s so individual, some people it’s weeks , months , years or I’ve heard of decades! That doesn’t help you much I know

Did they carry out a c-peptide test do you know ?

 

[Inka]

Hi @MarkH 🙂 I’d ask for a referral if it was me. LADA is just a slower-onset Type 1. As @EmmaL76 says, early introduction of insulin will help your remaining islet cells last longer. This is a good thing. So, far from being a bad result, being put onto insulin at the right time is positive. Too many people with LADA are messed around and have their treatment proceed excruciatingly slowly, causing lots of unnecessary stress.

So, push for some consultant input and, if you are Type 1/LADA, don’t be afraid of insulin. It’s your friend.

 

[everydayupsanddowns]

Welcome back @MarkH

I remember there were a few ‘flags’ from your initial post, particularly the weight loss and the speed of onset.

I was diagnosed in my 20s, and can remember that wrench of knowing that I would now be on medication for life, but actually, in a sense, I think there is freedom in it too. With T1 there isn’t an option of possibly doing without meds, so it‘s about embracing meds and working with them as a way of managing your Bg levels.

And, of course, insulin (if you end up confirmed as T1/LADA) will absolutely give you the freedom of food choices that you were after. While moderate carb meals can be easier to estimate and dose for… with insulin any food can be accommodated with a bit of experimentation and the right dosing strategy. 🙂

 

[leonS]

Just be aware that the situation can change very quickly. Test blood glucose often.

 

[MarkH]

Welcome back @MarkH

I remember there were a few ‘flags’ from your initial post, particularly the weight loss and the speed of onset.

I was diagnosed in my 20s, and can remember that wrench of knowing that I would now be on medication for life, but actually, in a sense, I think there is freedom in it too. With T1 there isn’t an option of possibly doing without meds, so it‘s about embracing meds and working with them as a way of managing your Bg levels.

And, of course, insulin (if you end up confirmed as T1/LADA) will absolutely give you the freedom of food choices that you were after. While moderate carb meals can be easier to estimate and dose for… with insulin any food can be accommodated with a bit of experimentation and the right dosing strategy. 🙂

Yeah I did think that myself re the weight loss, however with the negative ketone test, and metformin lowering my levels I allowed myself to hold into T2 self diagnosis and just think no worries I’ll diet and train this off

Can the nurse put a label on this?
Do I need a referral to the hospital?
Can I get a Libre on the NHS?

Cheers

 

[MarkH]

Me again, keep thinking of things to say… if slow progressing type 1 is confirmed, taking a little insulin will take the pressure off your pancreas which means you may be able to keep producing for longer than without it. As for time frame, it’s so individual, some people it’s weeks , months , years or I’ve heard of decades! That doesn’t help you much I know

Did they carry out a c-peptide test do you know ?

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

 

[Inka]

@MarkH Dont do the C Peptide if you’re not able to do it properly. You need some carbs and you need to check about the Metformin and whether to take it.

 

[Inka]

To answer your other questions, a nurse can guess your type, but a consultant will be able to give a more informed opinion.

If someone’s on insulin, it’s prescribed by the GP or consultant and collected like a normal prescription. There are different kinds of insulins and insulin regimes so it’s important you’re prescribed the right things.

Some Type 1s can get Libre on the NHS.

 

[everydayupsanddowns]

To be honest I’m not 100% sure who can make a diagnosis - in general terms think this varies from condition to condition, as some things are easier to identify, while others can need more specialist review and interpretation.

It may also be that your results have been reviewed by a GP, and the diagnosis made, and the nurse is passing on the information. I think you can certainly ask for a referral if you are concerned that your classification may not be accurate?

 

[MarkH]

To be honest I’m not 100% sure who can make a diagnosis - in general terms think this varies from condition to condition, as some things are easier to identify, while others can need more specialist review and interpretation.

It may also be that your results have been reviewed by a GP, and the diagnosis made, and the nurse is passing on the information. I think you can certainly ask for a referral if you are concerned that your classification may not be accurate?

The nurse I’ve been dealing with got T1/T2 mixed up and stated that beta cells being damaged are in the Kidney, before I corrected her with my very limited knowledge. She then just said your case is strange I think your LADA. Not sure that qualifies as a diagnosis. I think another nurse is down to call me this week.

I think a referral would probably be safer.

 

[MarkH]

To answer your other questions, a nurse can guess your type, but a consultant will be able to give a more informed opinion.

If someone’s on insulin, it’s prescribed by the GP or consultant and collected like a normal prescription. There are different kinds of insulins and insulin regimes so it’s important you’re prescribed the right things.

Some Type 1s can get Libre on the NHS.

Those sensors are £50 each and last 14 days - ouch!
Time to beg and plead with the GP and take those uneaten Xmas chocolates over to the reception team

 

[EmmaL76]

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

Hi, do you have any cereal ? Bread? Anything will do. I also did the urine c pep and it showed good insulin production but only possible resistance so still no clearer. I’m really not sure about the metformin but I’d like to think they would have told you to stop medication if that was required.
Yes I got the libre on prescription due to the GAD positive and it was not really questioned, however I know this is not always the case. My endo at the hospital diagnosed me as probably type 1 and okayed the use of insulin. However currently my DN last time I spoke to her think I’m more likely a type 2. I’m actually due a call this afternoon first one in a few month so will see what she has to say this time as my numbers as increasingly better with no insulin or meds.
Great news about your eyes, some folks get real blurry vision as sugar levels drop… looks like you got lucky.
I have one type 1 uncle but no type 2 in the family.
Keep us informed on how your getting on.

 

[EmmaL76]

The nurse I’ve been dealing with got T1/T2 mixed up and stated that beta cells being damaged are in the Kidney, before I corrected her with my very limited knowledge. She then just said your case is strange I think your LADA. Not sure that qualifies as a diagnosis. I think another nurse is down to call me this week.

I think a referral would probably be safer.

Be prepared to get quite pushy! I got my referral in a rather unconventional way, my sister in law is my consultants medical secretary as luck would have it.she told him my story and he asked me to pop along to one of his ambulatory care clinics. Doctors were getting me absolutely nowhere !

 

[everydayupsanddowns]

The nurse I’ve been dealing with got T1/T2 mixed up and stated that beta cells being damaged are in the Kidney, before I corrected her with my very limited knowledge. She then just said your case is strange I think your LADA. Not sure that qualifies as a diagnosis. I think another nurse is down to call me this week.

Ah… Well that was hardly going to inspire confidence!

 

[MarkH]

Be prepared to get quite pushy! I got my referral in a rather unconventional way, my sister in law is my consultants medical secretary as luck would have it.she told him my story and he asked me to pop along to one of his ambulatory care clinics. Doctors were getting me absolutely nowhere !

Lol ..
How long does the Pep test take to come back?
I was kinda hoping you’d confirm my life expectancy point from earlier.

 

[Inka]

Those sensors are £50 each and last 14 days - ouch!
Time to beg and plead with the GP and take those uneaten Xmas chocolates over to the reception team

Many of the Type 1s who have them have them approved by their hospital team. Not all Type 1s get them.

I see you’ve met a diabetes ‘expert’ nurse……. Lots of them about!

 

[EmmaL76]

Lol ..
How long does the Pep test take to come back?
I was kinda hoping you’d confirm my life expectancy point from earlier.

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!

 

[Robin]

Lol ..
How long does the Pep test take to come back?
I was kinda hoping you’d confirm my life expectancy point from earlier.

A lot of the stuff on life expectancy is based on data from earlier years where the modern insulins and glucose measuring technology weren’t available,(some people on the forum here remember having to boil up their wee on the stove and add a reagent and look at the colour change) and it was much more difficult for people to keep their diabetes under the control that is now possible.
I would be pushing for a referral to a hospital clinic, because at the moment, the Libre can only be prescribed in a secondary care setting, not initially by a GP. (although once approved by the hospital, they are responsible for issuing the prescription). A hospital also has more flexibility about insulins, my GP nurse could only give me a choice of two basals, for example, whereas there are quite a few to choose from, all with different attributes.