GAD results negative and left in limbo

[wiserkurtious]

I've posted this previously on the type 1 post so i'd though i'd post it on here to see what you guys think.So i got rushed into hospital with all the symptoms of type 1 in july of this year,where I spent 3 days in hospital on a drip .Was told to ask for the GAD test when I went to see my consultant so I did and had the test done.Last month I got the test results back and they came back negative on both counts,Asking my diabetic nurse"what does this mean" she,a little hastely imo said"this would mean there's a good chance you might not be type 1" she said she would speak to my consultant.She got back to me like 2 weeks later to tell me nothing!!! really,just to keep on going as I am,confused much!!! I've been off insulin for nearly over a month now with my levels been close to normal,so to say I'm a little confused is a understatement!!!

 

[tim2000s]

Have you had the C-Peptide test undertaken yet? If you were LADA, you would also be seeing GAD antibodies. The C-Peptide test will confirm how much insulin you are producing and given the lack of GAD, would confirm whether you are Type 2 or Type "Other". You are not confirmed as non-T1 without GAD, it is just less likely.

 

[wiserkurtious]

Have you had the C-Peptide test undertaken yet? If you were LADA, you would also be seeing GAD antibodies. The C-Peptide test will confirm how much insulin you are producing and given the lack of GAD, would confirm whether you are Type 2 or Type "Other". You are not confirmed as non-T1 without GAD, it is just less likely.

Hi again,I remember you asking me this last time my diabetic nurse rang me and they don t normally give people 1 5 years after having diabetes.

 

[tim2000s]

Yes, but if they are telling you that there are no GAD antibodies and they can't diagnose you with anything accurately, then they can at least determine whether you are producing insulin. Normally, they find out from a GAD test, so you need to push for it as this is not a "Normal" case, and you should make it very clear to the nurse that you won't take no for an answer.

 

[wiserkurtious]

Yes, but if they are telling you that there are no GAD antibodies and they can't diagnose you with anything accurately, then they can at least determine whether you are producing insulin. Normally, they find out from a GAD test, so you need to push for it as this is not a "Normal" case, and you should make it very clear to the nurse that you won't take no for an answer.

Your right and ill mention this again to her when I speak over the phone,ty for your advice and all the best

 

[jamesfitz]

Both my antibodies came back negative but my c peptide result was on the low side of normal so was told i was probably type 1

 

[wiserkurtious]

i was reading you link earlier regarding the honeymoon period,like you I'm in a very similar situation atm. Diabetic nurse virtually told me to see how things go,in other words shes waiting for my pancreas to pack in!! what if I'm type 2?!?!? it might not completely pack in anytime soon.

 

[jamesfitz]

I am surprised they havent given you a c-peptide test to help determine which type you have got. I was off insulin for a month following advice from the consultant but following information ive read online ive decided to start taking novorapid for any carbs i eat. This has stopped me spiking beyond 7mmol and will hopefully extend my honeymoon period

 

[Daibell]

Both my antibodies came back negative but my c peptide result was on the low side of normal so was told i was probably type 1

I weas the same i.e. negative GAD and low c-peptide and now on insulin. c-peptide is a reliable indicator several years after diagnosis. A negtive GAD doesn't prove everything as it becomes less reliable as time passes after diagnosis and viruses etc can cause beta cell failure.

 

[jamesfitz]

@Daibell are you in the honeymoon period or is it over? If so how long did it last?

 

[wiserkurtious]

still on no insulin so ya honeymoon still,but your right i feel like they're not doing enough investigating tbh.

 

[Daibell]

@Daibell are you in the honeymoon period or is it over? If so how long did it last?

I never had a honeymoon period as I think I should have had insulin a year earlier than I did I but my GP refused initially. She refused to accept I wasn't T2 so I had my own tests done privately. I went onto insulin around 2 years ago and my insulin needs have hardly changed during those 2 years.

 

[Andy-Sev]

@wiserkurtious I am in a similar situation. Was diagnosed as suspected Type 1 at end of September and put on insulin (Novomix30) which has rapidly decreased to minimal amounts as my BG readings are good and from tomorrow will be on Metformin and off insulin. I also had an abdominal CT scan today to see what is going on with my Pancreas because statistically I should be Type 2 but have a number of elements of Type 1 which means I am in limbo over which type I am. Hopefully this CT scan will come up with some answers as digging around myself for answers has just left me frustrated.

 

[EveryCloud]

Sounds all too familiar. I have been told that I am now 'Just type 2' after seeing a doctor (not my regular doc) I have argued and told her that my other doc, who is the specialist, dunno where he has gone and forgot to ask, has always told me I was symptomatic of type 1 and that I will need insulin soon. Fair enough this was over a year ago. But still, just a reminder that there are a lot of people working for the NHS with no clue about diabetes. On my notes it says Type 2. because 1.5 isn't officially recognised, and until I am on insulin I will be Type 2. I just keep going one day at a time, still have the odd after meal spikes of about 15 now and then, but over all my numbers arn't bad.

 

[Desbrina]

I'm a bit like that at the moment. My gad was negative and c peptide was borderline type 1 so I'm being classed as type 2 on insulin. I'm having the c peptide redone though

 

[wiserkurtious]

@wiserkurtious I am in a similar situation. Was diagnosed as suspected Type 1 at end of September and put on insulin (Novomix30) which has rapidly decreased to minimal amounts as my BG readings are good and from tomorrow will be on Metformin and off insulin. I also had an abdominal CT scan today to see what is going on with my Pancreas because statistically I should be Type 2 but have a number of elements of Type 1 which means I am in limbo over which type I am. Hopefully this CT scan will come up with some answers as digging around myself for answers has just left me frustrated.

I've been thinking about this,should i be on some kind of medication like metformin!! I feel it a little I'm been a litle neglected by them just leaving me with no medication and kinda of saying we ll wait and see what happens

 

[wiserkurtious]

still plodding along on no insulin,nearly 2 months levels are still pretty good,apart from the odd hick up,5s on wake up and before bed,think my routine as alot to do with my levels been at a good level.lots of exercise and eating the right foods seem to help I see the diabetic nurse at the end of the month so I'm going to ask her about metformin,or could i go to see my local gp about this?

 

[Ian DP]

still plodding along on no insulin,nearly 2 months levels are still pretty good,apart from the odd hick up,5s on wake up and before bed,think my routine as alot to do with my levels been at a good level.lots of exercise and eating the right foods seem to help I see the diabetic nurse at the end of the month so I'm going to ask her about metformin,or could i go to see my local gp about this?

You are similar to myself..... Just plodding along. I have been just plodding along now for two years without insulin.
My GAD test was positive. Diabetic consultant says no point in having a c-peptide test as it is obvious that I am still producing some insulin (as you obviously are). Most GPs will likely have less knowledge of your 'unusual' condition than yourself, so in my opinion wait to see the diabetic nurse, as she can always pop out to consult with the diabetic consultant. But I have concluded that 'we' .... We being honeymoon not on insulin..... Are so rare they don't really know what to do with us, but just tell us that we will be on insulin soon!!!! Over the last two years I have had a specialist nurse consultation starting every 3 months, now every six months. Every time I go there I come away thinking they have learned more from me, than me from them.

If you can possibly keep your BG fasting levels at 4.6 and 2hr after meal levels at 5.6 you will likely keep in the honeymoon period longer. Definitely longer according to dr Bernstein. If you haven't read dr Bernsteins book 'diabetic solution' then I think you will find it very interesting. On Kindle and iBooks for around £5.00.

Exercise and low carb have definitely kept me in the honeymoon period. I know I would be on insulin now otherwise. But I also know I will be on insulin at some point in the future.

 

[wiserkurtious]

You are similar to myself..... Just plodding along. I have been just plodding along now for two years without insulin.
My GAD test was positive. Diabetic consultant says no point in having a c-peptide test as it is obvious that I am still producing some insulin (as you obviously are). Most GPs will likely have less knowledge of your 'unusual' condition than yourself, so in my opinion wait to see the diabetic nurse, as she can always pop out to consult with the diabetic consultant. But I have concluded that 'we' .... We being honeymoon not on insulin..... Are so rare they don't really know what to do with us, but just tell us that we will be on insulin soon!!!! Over the last two years I have had a specialist nurse consultation starting every 3 months, now every six months. Every time I go there I come away thinking they have learned more from me, than me from them.

If you can possibly keep your BG fasting levels at 4.6 and 2hr after meal levels at 5.6 you will likely keep in the honeymoon period longer. Definitely longer according to dr Bernstein. If you haven't read dr Bernsteins book 'diabetic solution' then I think you will find it very interesting. On Kindle and iBooks for around £5.00.

Exercise and low carb have definitely kept me in the honeymoon period. I know I would be on insulin now otherwise. But I also know I will be on insulin at some point in the future.

ty for the reply things get a little frustrating when even the professionals don't know whats up with you.When i had the gad come back negative she said this would mean I'm not type 1?!?!?! confused a little by with what she was saying,so whats up with me than?!?!? So when i see the diabetic nurse I'm going to ask her to look into my situation a little harder,she said shes not seen may people like me long last the honeymoon period

 

[Andy-Sev]

Still plodding along here, still on Metformin with the insulin sitting in the fridge just in case. I have almost got over my frustration having discovered that there are countless diabetics in the same situation of not knowing what type they are and left in limbo waiting for the day that their bg readings to go crazy and for the specialist to say your honeymoon is over and you were type 1, 1.5 or LADA all along. In truth I am slightly glad to be in limbo as there are just as many wrongly diagnosed as type 2 and are not getting the treatment and access to testing which I currently have and hope you have.

As for the Metformin, well to be honest my bg readings were in range and consistent before they switched me over and I am convinced that my readings are currently consistent because I am strict on the old diet and exercise routine, along with the honeymoon still in full swing, it would just be my luck that it clears off come Christmas and I have the fun of trying to get control over the festive period.

As for feeling neglected. I actually don't mind that as I realised that often the left hand of the medical establishment don't know what the right hand is doing and that I was better of taking control of things and phoning up my DNS when I have any questions or concerns rather than waiting for them to get in touch with me as they have so many cases to deal with.