GAD positive but confused

nybrid

Active Member
Messages
36
Type of diabetes
LADA
Treatment type
Tablets (oral)
Dislikes
fear of diabetes complications
Hi one and all,
My specialist diagnosed me in Feb as type 1.5.
HB test 7 and fasting test 16
I've now got my average BG down to 5.4 on my tester and last week's HB test came back at 5.5.
I have eaten relatively low carb and not strayed at all.
I've now been sent a letter saying I'm type 1 and will fairly soon need to go on insulin as my test showed GAD positive. (I have no exact GAD reading )
I only take 1 500g metformin a day.
Am I in fact currently type 1.5/2 because I don't currently need insulin?
Would a cpeptise test give me any valuable information?
Occasionally I have a couple of glasses of red wine and my reading drops between 4.3 and 3.8. My doctor says this is a hypo but I have no hypo symptoms. Is she just being careful?
With my readings 5.5 and diagnosed type 1 should I ask to come off metformin as my levels go lower rather than higher on average?
I'm seeing the dietician and specialist in the next 3 weeks so any advise on the above most welcome.
Thanks ☺
 

Indy51

Expert
Messages
5,540
Type of diabetes
Type 2
Treatment type
Diet only
Bumping your post in the hopes that one of the experienced LADA's will reply.

I know of at least one who is still 'honeymooning' and hasn't required insulin yet @Ian DP

I don't know much about LADA so can't help you further, but welcome to the forums :)
 

nybrid

Active Member
Messages
36
Type of diabetes
LADA
Treatment type
Tablets (oral)
Dislikes
fear of diabetes complications
Ok thanks very much Indy.
Ian has helped me before. :)
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi and welcome. LADA can progress at widely varying rates; it took years for me to end up on insulin with increasing tablets along the way. Metformin will make little difference to your bs. All you can do is have a low-carb diet and keep an eye on your HBa1C and increasing the meds as and when it goes higher. For me after a few years on all of the tablets my HBa1C shot up over 6 months and hence the insulin. I had a c-peptide test done myself a year or so before insulin and it showed that my insulin production was at the bottom of the range which was confirmation to me of what was going on. Alcohol can reduce bs so always be careful with it when your bs is alreadt low. BTW beware NHS dieticians. If they suggest increasing your carbs etc then run a mile.
 
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Ian DP

Well-Known Member
Messages
712
Type of diabetes
LADA
Treatment type
Insulin
Dislikes
Chips
Hi Nybrid
I am much the same as you, but diagnosed a little earlier and a little older.
Have a read of my 'can I prove the Drs wrong post in the LADA forum section http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/
I often have BG levels below 4, quite a few 3.2s. My hospital DSN says not to worry at all (because I am not on meds). I have read some non diabetics have measured their BG into the low 2s.... So we are no more likely to hypo than a normal non diabetic if we are not on meds.
I was on Metformin and advised to stop taking them when diagnosed LADA.

C-pepside test would be useful, in that it will,tell,you how much insulin you are making. But my Dr said as it would not make any difference to my treatment he did not want to do one, which I accepted .... But shame in a way because I would love to know what my insulin level is now compared to a year ago (higher, lower same???? - who knows).

Dr Bernstein book diabetic solution is a god informative read. Around £5 on kindle and iBook and you can download the first few chapters free. Another good book is Dr Trudi Deakins eat fat.
 
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smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi one and all,
My specialist diagnosed me in Feb as type 1.5.
HB test 7 and fasting test 16
I've now got my average BG down to 5.4 on my tester and last week's HB test came back at 5.5.
I have eaten relatively low carb and not strayed at all.
I've now been sent a letter saying I'm type 1 and will fairly soon need to go on insulin as my test showed GAD positive. (I have no exact GAD reading )
I only take 1 500g metformin a day.
Am I in fact currently type 1.5/2 because I don't currently need insulin?
Would a cpeptise test give me any valuable information?
Occasionally I have a couple of glasses of red wine and my reading drops between 4.3 and 3.8. My doctor says this is a hypo but I have no hypo symptoms. Is she just being careful?
With my readings 5.5 and diagnosed type 1 should I ask to come off metformin as my levels go lower rather than higher on average?
I'm seeing the dietician and specialist in the next 3 weeks so any advise on the above most welcome.
Thanks ☺

Hi Nybrid,

A lot of questions there.

1. A lot of LADAs don't need insulin at first - it absolutely doesn't make them Type 2s. It is believed to be a slow onset form of Type 1. It tends to be diagnosed by the GAD antibody test. The presence of antibodies almost always means LADA and the NHS will classify that as Type 1 - they only really recognise Types 1 and 2 so LADAs get shoved in with Type 1s.

2. A c-peptide test would be useful for a couple of reasons; firstly it gives you a prognosis - if it's really low, you'll probably move onto insulin more quickly whereas if it's not too bad, you might go several years without needing to inject; secondly it gives you a baseline for measuring your condition's progression - but that involves getting your consultant to agree to doing them every year or so, which is highly unlikely; thirdly, it helps rule out Type 2 if there is still any doubt - a high c-peptide is indicative of Type 2 whereas a low c-peptide is indicative of Type1/1.5. As you've already tested positive to GAD antibodies, there isn't much doubt about your diagnosis, so your consultant will probably not want to spend the money on a c-peptide test for you.

3. Red wine is notorious for lowering BG. You're not on any BG lowering medications so there is really nothing to worry about. 3.8 is normal BG. Doctors are very ignorant in general around the issue of hypos. Even on insulin I like to see occasional 3.8s - even the DAFNE course doesn't classify a hypo until below 3.5 and clinically, a hypo is below 2.2. Medics tend to say 4 to build in a margin of error for insulin users - but you shouldn't need that margin with metformin.

4. I doubt the metformin is doing much for an LADA although I do know several Type 1s and LADAs who take it as they say it helps control the after food spikes and means they can use less insulin. Personally, if I was on it I'd probably stay on it. It is widely believed to be a benign drug that does more good than harm and has several protective benefits. I have no evidence of this though.

5. My advice would be to avoid dieticians!

Smidge
 
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Reactions: 9 people

nybrid

Active Member
Messages
36
Type of diabetes
LADA
Treatment type
Tablets (oral)
Dislikes
fear of diabetes complications
Hi and welcome. LADA can progress at widely varying rates; it took years for me to end up on insulin with increasing tablets along the way. Metformin will make little difference to your bs. All you can do is have a low-carb diet and keep an eye on your HBa1C and increasing the meds as and when it goes higher. For me after a few years on all of the tablets my HBa1C shot up over 6 months and hence the insulin. I had a c-peptide test done myself a year or so before insulin and it showed that my insulin production was at the bottom of the range which was confirmation to me of what was going on. Alcohol can reduce bs so always be careful with it when your bs is alreadt low. BTW beware NHS dieticians. If they suggest increasing your carbs etc then run a mile.
Great advice Daibell much appreciated.
Thank you
 

nybrid

Active Member
Messages
36
Type of diabetes
LADA
Treatment type
Tablets (oral)
Dislikes
fear of diabetes complications
Hi Nybrid
I am much the same as you, but diagnosed a little earlier and a little older.
Have a read of my 'can I prove the Drs wrong post in the LADA forum section http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/
I often have BG levels below 4, quite a few 3.2s. My hospital DSN says not to worry at all (because I am not on meds). I have read some non diabetics have measured their BG into the low 2s.... So we are no more likely to hypo than a normal non diabetic if we are not on meds.
I was on Metformin and advised to stop taking them when diagnosed LADA.

C-pepside test would be useful, in that it will,tell,you how much insulin you are making. But my Dr said as it would not make any difference to my treatment he did not want to do one, which I accepted .... But shame in a way because I would love to know what my insulin level is now compared to a year ago (higher, lower same???? - who knows).

Dr Bernstein book diabetic solution is a god informative read. Around £5 on kindle and iBook and you can download the first few chapters free. Another good book is Dr Trudi Deakins eat fat.
Very reassuring Ian thanks again.
I do a lot of driving as a rep and am about to start a new job. Am I right in saying that although I'm diagnosed type 1 by the specialist I DO NOT need to notify DVLA until I use insulin ?
 

nybrid

Active Member
Messages
36
Type of diabetes
LADA
Treatment type
Tablets (oral)
Dislikes
fear of diabetes complications
Hi Nybrid,

A lot of questions there.

1. A lot of LADAs don't need insulin at first - it absolutely doesn't make them Type 2s. It is believed to be a slow onset form of Type 1. It tends to be diagnosed by the GAD antibody test. The presence of antibodies almost always means LADA and the NHS will classify that as Type 1 - they only really recognise Types 1 and 2 so LADAs get shoved in with Type 1s.

2. A c-peptide test would be useful for a couple of reasons; firstly it gives you a prognosis - if it's really low, you'll probably move onto insulin more quickly whereas if it's not too bad, you might go several years without needing to inject; secondly it gives you a baseline for measuring your condition's progression - but that involves getting your consultant to agree to doing them every year or so, which is highly unlikely; thirdly, it helps rule out Type 2 if there is still any doubt - a high c-peptide is indicative of Type 2 whereas a low c-peptide is indicative of Type1/1.5. As you've already tested positive to GAD antibodies, there isn't much doubt about your diagnosis, so your consultant will probably not want to spend the money on a c-peptide test for you.

3. Red wine is notorious for lowering BG. You're not on any BG lowering medications so there is really nothing to worry about. 3.8 is normal BG. Doctors are very ignorant in general around the issue of hypos. Even on insulin I like to see occasional 3.8s - even the DAFNE course doesn't classify a hypo until below 3.5 and clinically, a hypo is below 2.2. Medics tend to say 4 to build in a margin of error for insulin users - but you shouldn't need that margin with metformin.

4. I doubt the metformin is doing much for an LADA although I do know several Type 1s and LADAs who take it as they say it helps control the after food spikes and means they can use less insulin. Personally, if I was on it I'd probably stay on it. It is widely believed to be a benign drug that does more good than harm and has several protective benefits. I have no evidence of this though.

5. My advice would be to avoid dieticians!

Smidge
Thanks Smudge great reply. I've been reading Dr Ben steins book and your info plus the other replies on here are very reassuring at a worrying time.
Thanks again
 

Ian DP

Well-Known Member
Messages
712
Type of diabetes
LADA
Treatment type
Insulin
Dislikes
Chips
Very reassuring Ian thanks again.
I do a lot of driving as a rep and am about to start a new job. Am I right in saying that although I'm diagnosed type 1 by the specialist I DO NOT need to notify DVLA until I use insulin ?
Not sure if you need to or not.
I did phone them and tell them (I think because my GP said I should). They wrote back acknowledging my call, confirming I was ok to drive and asking me to contact them again when I go on insulin.
 

Ali H

Well-Known Member
Messages
790
Type of diabetes
Type 2
Treatment type
Insulin
The DVLA website has tons of info on it but yes, generally speaking for a car or motorbike driver it is insulin they want to know about not oral meds or other injectables. Also tell your insurance company regardless of medication, they will just note it.

Ali