Still in limbo after the GAD test

[JamietDE6]

Evening hive mind.
So, yesterday I received my GAD antibody result from my DSN. It was negative. I am currently injecting a mixture of Lantus and Novarapid and most of the time managing to stay between 5.2 at its lowest and around 14 late in the evening. Initially my symptoms all appeared rapidly and I am told we’re consistent with Type 1. Hab1 c was 106 and blood was 28mmol. I am not significantly overweight and exercise regularly.
Initially highest ketone at start of treatment was1.5. Based upon all this my DSN said i may not be Type 1 after all. Could be 1.5 or even 2. I mentioned a c peptide and was told it is much too early for that. My DSN advised that she would talk with the consultant to try and get an opinion and possibly review medication and give metformin a go.
I am now baffled. How will I / when will I get a diagnosis? Obviously type 1 and 2 are very different in terms of reversal. I feel like I am back at day one. Is my experience typical?

 

[Lucyr]

It’s 14 years since my diagnosis and I haven’t got an answer on type yet. Not sure that helps you, hopefully you’ll find out soon. How long is it since diagnosis, cpeptide in the honeymoon period can be normal which confuses things, so that may be why she wants to wait a bit.

 

[JamietDE6]

It’s 14 years since my diagnosis and I haven’t got an answer on type yet. Not sure that helps you, hopefully you’ll find out soon. How long is it since diagnosis, cpeptide in the honeymoon period can be normal which confuses things, so that may be why she wants to wait a bit.

Hi Lucy I am on week 7 of treatment so early days of course. Just out of interest why can they not decide in your case? I am beginning to think the medical profession are playing a guessing game based on a risk analysis here…… I just read an article all about the presence of GAD antibodies in people without any diabetes symptoms at all,even more confusing….

 

[Lucyr]

I am on week 7 of treatment so early days of course. Just out of interest why can they not decide in your case?

Week 7 is very early so still time to decide yet. It’s more that they aren’t particularly interested in investigating or deciding for me. Don’t think medical professionals really understand the importance of knowing, and the consequences of being misdiagnosed as t2, as we do. It’s taken 14 years to convince them to do the cpeptide test, haven’t had a gad test but not sure if antibodies relevant this length of time later.

But anyway, holding off the cpeptide test if they don’t want to do it yet, and doing it when your honeymoon ends and bgs increase / insulin production reduces, wouldn’t necessarily be a bad thing as perhaps the results would be more clear then.

 

[JamietDE6]

Thanks for your advice. You have prompted me to change my type to other as well

 

[Eternal422]

Hi @JamietDE6 - hopefully you will get a definitive answer soon, but on the surface it does look like it may be T1? I was initially diagnosed as T2, which I think was mainly due to presenting with symptoms when I was 42, back then(!) that was an assumption made by many GPs I think.

But, it’s great that they have you on insulin straight away rather than the trial of something like Metformin which may not help you at all, just delaying you getting insulin and things under control.

When I was reclassified as T1 last year (20 years after initial diagnosis, although on insulin alone from 5 years after diagnosis) my DSN said that the amount of insulin I took and how my BG was reacting to it definitely suggested T1.

So, to answer your question, I’m not sure if your experience is typical, but you’re definitely not the only one! Hope it all goes well for you and you get the right care.

 

[rebrascora]

I think there is an element of lack of knowledge in making that initial assessment of type in some situations.... Many GPs even now, still harbour the view that Type 1 only exhibits in children, so if you are a mature adult it must be Type 2 in their eyes. Then there is of course a reluctance to admit they got it wrong and therefore a reluctance to reevaluate. On the other hand, if young people are a bit overweight, medics now wonder if they might be Type 2.... I think this is partly due to the rise in obesity in children and media coverage of the increasingly younger onset of Type 2 in young people. We had a case on the forum recently where a teenager who was otherwise fit and healthy but very tall and well built (rugby player), being considered to be Type 2 by a consultant even though it appeared to be a straight forward presentation of Type 1 and the father is Type 1. They even started him on Metformin as well as insulin in the first couple of days of treatment until another consultant took over and reversed those decisions. I sometimes wonder if there are financial incentives in diagnosing Type 2 over Type 1!

My own situation was more fortunate than @Lucyr and @Eternal422 in that it only took a few months to get the diagnosis sorted out from an initial Type 2 assumption. Thankfully my practice nurse was switched on enough to have a suspicion that there was something just not quite right, but I was carrying a couple of stone too much and I was a self confessed sugar addict and 56yrs old and no ketones, so I don't think their Type 2 assumption was unreasonable. What tipped it was that I cut my carbs down to the bone, took full dose Metformin and gradually increased Gliclazide over 8 weeks and yet my HbA1c went up instead of down. I also had sudden very sudden onset symptoms that literally happened one night after a meal out and very rapid weight loss once I started treatment. I was started on insulin 8 weeks after symptoms hit me and saw a consultant a month or so later who authorized GAD and C-pep. The latter came back borderline, so it hung in the balance until the GAD came back positive.

I think the difficulty is that we all present slightly differently and the tests are not always conclusive, so you need someone with an open mind and enough experience to look at the test results in conjunction with the clinical presentation especially if the GAD and C-pep tests are not both very obviously positive, I think it still comes down to the personal opinion of whoever is interpreting the results, which can therefore be a bit of a lottery and once you get a Type allocated it cven be quite difficult to find someone who is prepared to overturn that, particularly within the same clinic/department, which may be why the likes of @Eternal422 only got it sorted out when he moved to a different clinic.

 

[Eternal422]

and once you get a Type allocated it cven be quite difficult to find someone who is prepared to overturn that, particularly within the same clinic/department, which may be why the likes of @Eternal422 only got it sorted out when he moved to a different clinic.

You’re right, I think this is the only reason for me. We moved areas and although initially my new GP didn‘t question it, when I asked about how to better adjust insulin doses after a slight rise in HbA1c, the health centre nurse referred me to the hospital diabetes centre. I consider myself really lucky with them as they are quite switched on and after discussing my case between consultant and other DSNs there, made the decision to change my diagnosis based on the evidence of how I responded to insulin. Within one month of seeing them they put me on Libre and wrote to my GP to say that I was actually T1.

The thing is my original GP and hospital must have had some suspicions as they never took me down the care pathway of T2, stopping Metformin and leaving me solely on insulin. I did have the GAD test, but this came back inconclusive which the original consultant said was most likely because it was too long after the original presentation of symptoms.

@JamietDE6 - I don’t know how much insulin you are using and how you respond to it and carbs, but, if you don’t already, it might be a good idea to gather some BG results, amount of insulin used and carbs taken (I assume you are carb counting for the Novorapid?) in a log book (I’m guessing you don’t have a Libre sensor which would make this easy to do?) so that you can let your team have the information to help confirm your diagnosis.

 

[Val1133]

I understand your frustration @JamietDE6.

I was diagnosed on 2 September with HbA1C of 115 after losing over one and a half stone and being very thirsty. I was started on Metformin and Gliclazide.

I had a GAD antibody test done in November as I was still losing weight. This indicated Type 1 and I was referred to the hospital for support.

By the time I saw the consultant late January, my HbA1c had reduced to 47 and he wasn't sure whether to start me on insulin or not. I had reduced my carb intake to bring my BG down and was still losing weight. However, I told him I didn't know if that was sustainable long-term, so he decided to start me on a very low dose of Insulin (4 units of Tresiba at night and 2 units of Fiasp if my BG reading was over 12). The Gliclazide was stopped, but I remain on Metformin.

He also ordered a C-Peptide test.

I had to start eating more carbs to prevent Hypos - this was great, as my diet had become very restrictive. I was also given a Libre 2.

I had a follow-up appointment with the consultant last week. The C-Peptide test seemed to indicate that I had good insulin levels and he suggested stopping insulin for a week. He has also ordered an Antibody test (not GAD) to try to determine the type of diabetes I have.

I also managed to see the Dietician last week - six months after diagnosis.

Anyway, the purpose of this long winded message is to say that the Diabetic Team in my hospital seem to be trying every test there is for me and still not coming up with conclusive diagnosis of Type. It just must be very difficult for them to know.

I was looking for quick results, but now realise it is just not that simple.

I would like to add that I have had excellent support from the NHS and think they are doing a marvellous job through all their difficulties.

 

[JamietDE6]

You’re right, I think this is the only reason for me. We moved areas and although initially my new GP didn‘t question it, when I asked about how to better adjust insulin doses after a slight rise in HbA1c, the health centre nurse referred me to the hospital diabetes centre. I consider myself really lucky with them as they are quite switched on and after discussing my case between consultant and other DSNs there, made the decision to change my diagnosis based on the evidence of how I responded to insulin. Within one month of seeing them they put me on Libre and wrote to my GP to say that I was actually T1.

The thing is my original GP and hospital must have had some suspicions as they never took me down the care pathway of T2, stopping Metformin and leaving me solely on insulin. I did have the GAD test, but this came back inconclusive which the original consultant said was most likely because it was too long after the original presentation of symptoms.

@JamietDE6 - I don’t know how much insulin you are using and how you respond to it and carbs, but, if you don’t already, it might be a good idea to gather some BG results, amount of insulin used and carbs taken (I assume you are carb counting for the Novorapid?) in a log book (I’m guessing you don’t have a Libre sensor which would make this easy to do?) so that you can let your team have the information to help confirm your diagnosis.

Hi
I am using approx 16 units bolus and 9 basal. Usually bolus before meals and occasional correction. I do not avoid carbs at all and do find sometimes I am going to bed around 15 mmol and not wanting to bolus just in case of a hypo because I am not confident in my insulin to carb ratio yet, but I am probably paranoid I suppose. I don’t have a CGM or flash and they won’t give me one yet. I even asked for a Libre 3 or G 6 and the DSN almost fell off her chair laughing ( worth a try). Regards monitoring i obsessively record everything using my glucose app. I then print a report of BG results for my DSN which gets me a pat on the head

 

[EmmaL76]

I understand your frustration @JamietDE6.

I was diagnosed on 2 September with HbA1C of 115 after losing over one and a half stone and being very thirsty. I was started on Metformin and Gliclazide.

I had a GAD antibody test done in November as I was still losing weight. This indicated Type 1 and I was referred to the hospital for support.

By the time I saw the consultant late January, my HbA1c had reduced to 47 and he wasn't sure whether to start me on insulin or not. I had reduced my carb intake to bring my BG down and was still losing weight. However, I told him I didn't know if that was sustainable long-term, so he decided to start me on a very low dose of Insulin (4 units of Tresiba at night and 2 units of Fiasp if my BG reading was over 12). The Gliclazide was stopped, but I remain on Metformin.

He also ordered a C-Peptide test.

I had to start eating more carbs to prevent Hypos - this was great, as my diet had become very restrictive. I was also given a Libre 2.

I had a follow-up appointment with the consultant last week. The C-Peptide test seemed to indicate that I had good insulin levels and he suggested stopping insulin for a week. He has also ordered an Antibody test (not GAD) to try to determine the type of diabetes I have.

I also managed to see the Dietician last week - six months after diagnosis.

Anyway, the purpose of this long winded message is to say that the Diabetic Team in my hospital seem to be trying every test there is for me and still not coming up with conclusive diagnosis of Type. It just must be very difficult for them to know.

I was looking for quick results, but now realise it is just not that simple.

I would like to add that I have had excellent support from the NHS and think they are doing a marvellous job through all their difficulties.

How come they didn’t run the GAD test? Surely in your circumstances that would have been the most appropriate. How have you found coming off the insulin ? I’ve been in a similar situation. Did they give you a number for you cpeptide / insulin production ?

 

[Val1133]

How come they didn’t run the GAD test? Surely in your circumstances that would have been the most appropriate. How have you found coming off the insulin ? I’ve been in a similar situation. Did they give you a number for you cpeptide / insulin production ?

Hi @EmmaL76

They did do a GAD test in November and it showed a very high level of GAD antibodies (826 if I remember correctly) and for this reason they were treating me as Type 1.

I must admit that I feel a lot more relaxed not being on the insulin as I no longer have fears of getting Hypos. I hadn't realised how anxious I had become being on gliclazide and then on insulin. The diabetic nurses have put the fear of God in me about Hypos and that's what has made me anxious.

My BG levels overnight seem to stay between 5.5 and 8 - again according to Libre 2. I am not convinced Libre 2 is that good as I used to get false low glucose warnings when doing exercise or even out walking.

The Consultant didn't give me a number for the C-Peptide test and just said it was good. I am hoping he will send me a letter with the actual figures on it in due course, as he did that last time.

How are you managing?

 

[helli]

I was diagnosed nearly 20 years ago when very few people mentioned GAD tests and c-Peptide. I think more people were misdiagnosed at the time based on age but, thankfully, despite being in my mid-30s, it was just decided that I had Type 1 and I never experienced any of the uncertainty I read about nowadays.

Generally, the name of my condition is irrelevant. It could be Type 1 diabetes or Type Z diabetes or Zebratitis all I care. What is important is that I get the treatment I need.
I say "generally" because, unfortunately, there is a discrimination when it comes to monitoring. People with Type 1 are entitled to a Libre. People with type 2 treated with insulin are less likely to get it.

But, if you have insulin, Libre and access to an endocrinologist, my advice would be to focus on managing your diabetes and let someone else worry about naming it.

There are exceptions, as @Emma76 has found, if the "standard treatment" is not working. But if your insulin is working and not taking over your life, a name is just a word (or a number).

 

[EmmaL76]

Hi @EmmaL76

They did do a GAD test in November and it showed a very high level of GAD antibodies (826 if I remember correctly) and for this reason they were treating me as Type 1.

I must admit that I feel a lot more relaxed not being on the insulin as I no longer have fears of getting Hypos. I hadn't realised how anxious I had become being on gliclazide and then on insulin. The diabetic nurses have put the fear of God in me about Hypos and that's what has made me anxious.

My BG levels overnight seem to stay between 5.5 and 8 - again according to Libre 2. I am not convinced Libre 2 is that good as I used to get false low glucose warnings when doing exercise or even out walking.

The Consultant didn't give me a number for the C-Peptide test and just said it was good. I am hoping he will send me a letter with the actual figures on it in due course, as he did that last time.

How are you managing?

Oh I see my apologies, so you had the GAD. I don’t use anything to keep my sugars down at the moment but it’s really hard. I feel like hot death most of the time. My bg is similar overnight. I lost a lot of weight after diagnosis (wasn’t overweight to start with) I have put some back on now but my hba1c reflects this. I’m also not that convinced with the libre. My estimated hba1c was way off this time. To be honest, I’ve being trying to figure it out for 2.5 years and I know others have endured much longer but I’m really getting hacked off with it. My life is completely different to how it was, I have no energy, my stomach issues are horrendous, I have constant lady infections sometimes I feel like I’m just done with it.

 

[Val1133]

Oh I see my apologies, so you had the GAD. I don’t use anything to keep my sugars down at the moment but it’s really hard. I feel like hot death most of the time. My bg is similar overnight. I lost a lot of weight after diagnosis (wasn’t overweight to start with) I have put some back on now but my hba1c reflects this. I’m also not that convinced with the libre. My estimated hba1c was way off this time. To be honest, I’ve being trying to figure it out for 2.5 years and I know others have endured much longer but I’m really getting hacked off with it. My life is completely different to how it was, I have no energy, my stomach issues are horrendous, I have constant lady infections sometimes I feel like I’m just done with it.

I was very persistent just after diagnosis and my Diabetic Nurse at the practice and subsequently at the hospital have been excellent. BUT both have told me how serious this condition is.

I was diagnosed after losing 1 1/2 stone during the summer without trying. I was a little bit over weight, but not that much! I was helped tremendously by reading many of the personal experiences on this forum. I found I was having similar symptoms/experiences to others on here and was able to speak to the Diabetic Nurse about them.

I would urge you to get in touch with the Diabetic Nurse (probably easier to get an appointment with than the Dr) at your practice and tell them about the problems you are having.

I find @rebrascora and @everydayupsanddowns very helpful - Perhaps they can advise as I have very limited experience.

I hope you get sorted soon.

 

[EmmaL76]

I was very persistent just after diagnosis and my Diabetic Nurse at the practice and subsequently at the hospital have been excellent. BUT both have told me how serious this condition is.

I was diagnosed after losing 1 1/2 stone during the summer without trying. I was a little bit over weight, but not that much! I was helped tremendously by reading many of the personal experiences on this forum. I found I was having similar symptoms/experiences to others on here and was able to speak to the Diabetic Nurse about them.

I would urge you to get in touch with the Diabetic Nurse (probably easier to get an appointment with than the Dr) at your practice and tell them about the problems you are having.

I find @rebrascora and @everydayupsanddowns very helpful - Perhaps they can advise as I have very limited experience.

I hope you get sorted soon.

Thankyou for your kind words however @rebrascora and @everydayupsanddowns are probably sick to the back teeth of me! But they are both great recommendations, putting huge amounts of time into helping us all out. My weight loss was due to me severe food restriction and low carb lifestyle that in the end was not sustainable. Although in the beginning I spoke to my team quite a bit, even with my up in the air diagnosis I’ve now gone down to a call yearly. I’m fine with that to be honest, all the testing that can be done has been done.

 

[DaveB]

Hi. It's not too early to have a C-Peptide test. It's rather silly to be told that. A lot of medics believe, wrongly, that the GAD test is proof or otherwise of LADA. As viruses can cause LADA and not auto-immune response it's important to have a C-Peptide test if you need to know where you are but the insulin treatment wouldn't change. I initially had my test done privately but later my NHS diabetes consultant attanged one.

 

[helli]

As viruses can cause LADA and not auto-immune response

My understanding was that a virus could cause an autoimmune response.
But now I think of it, I don't know whether that was my assumption (because the body kills off the insulin producing cells slowly over time) or whether it was something I was told/read.

 

[rebrascora]

It is my understanding that various things can trigger the autoimmune response but a virus is one of the commonest ones..... A bit like poking a hornets nest with a stick.... the immune system gets agitated by the virus and then goes on the war path looking for anything else that needs dealing with.... until the immune response settles down again.
I was talking about this to my nurse today and saying about how my blood donations were apparently specifically tagged up to give to neonatal babies, when I was a regular blood donor prior to diagnosis, because I had very low levels of antibodies in my blood. I wonder if my immune system ordinarily ticks along very quietly, but when it gets rattled it goes out looking for trouble. 🙄
I definitely felt there was a correlation between my first Covid jab and a dramatic increase in Levemir dose requirements in the 2-3 months that followed it which made me wonder if the vaccine, which of course is designed to stimulate the immune system, also triggered it to have another go at my remaining beta cells. That would seem reasonably logical to my non medically trained mind..

 

[JamietDE6]

Hi @rebrascora
interesting re the blood donations. My group is AB+ and due to the rarity given to babies although not any longer given recent developments which is sad as it was always a satisfying thing to do (13 times) On another note is it customary in late onset for pancreatic cancer to be considered particularly if a GAD is not indicative of type 1? Any thoughts?