Gad negative/ insulin changes

[Kaz84]

I was tested to see if I am a type one diabetic or LADA. My GAD tests came back negative and the consultant told me I was type 2. Again I explained that many times I have been told that I don’t fit a profile of a type two diabetic because I’m slim and underweight. I said would it be worth testing again in a couple of years just in case this changes because I still think I could have LADIand he said antibodies wouldn’t come back they usually go overtime.
He has now agreed to do a C peptide test I just don’t understand why this wasn’t done with the other tests because now I got to wait again.
My insulin is being changed and I will be going on long acting and fast acting insulin because lantus insulin only is no longer working for me. I asked for the libre sensors because I’m not going on n fast acting without because it’s more dangerous he said he will write a recommendation to my gp so hopefully they agree. I also asked for a smart insulin pen like novo6 and he said to ask the nurse at my next appointment. This left me confused because he’s the one who’s meant to be recommending the changes to my GP. So I rang the clinic back to send him a message that I wanted him to recommend the smart pen aswell. Why prescribe a normal pen then get me to ask someone else to change it when he’s meant to be the one sorting it out. I’ve now got to wait for him to send a letter to my gp he said will take upto 3 weeks and when I get new insulin to wait until the nurse makes me an appointment for starting. He said it will be about a month before I start new insulin.
I’m frustrated because I go away in 2 months I wanted to be settled on new insulin and I have holiday insurance to sort. I feel a bit in limbo now.
Sorry for the rant i think maybe im just being impatient with trying to get organised for my holiday.

 

[Ieva DUK]

Hi there, thanks so much for sharing all of this and honestly no need to apologise for the rant. You’re absolutely not being impatient - it’s completely understandable to want clarity and stability, especially with a holiday coming up. These kinds of transitions in diabetes care are stressful enough without all the delays and back-and-forth.
You’ve been really proactive in asking good questions and pushing for the right tests - that takes persistence and confidence, especially when the process feels disjointed. You're right to want to rule things out properly, and a C-peptide test can definitely help fill in more of the picture when it comes to insulin production. It's frustrating that it wasn’t done sooner, but hopefully it’ll give you the clarity you’ve been looking for.
The communication gap around the pen and Libre sensors sounds unnecessarily complicated too - ideally, your consultant would coordinate that directly. It can feel like you're stuck managing the admin side of your care when what you really need is to just focus on feeling better and staying safe. Sadly, we know that the care can sometimes be a postcode lottery when it comes to these things.
Fingers crossed your GP processes everything quickly, and that you’re able to get started on the new insulin with enough time to settle before your trip. You’re doing all the right things by advocating for yourself and staying on top of it. Keep going, and please do keep us posted on how things move forward - we’re here to listen and help whenever we can.

 

[Kaz84]

Hi there, thanks so much for sharing all of this and honestly no need to apologise for the rant. You’re absolutely not being impatient - it’s completely understandable to want clarity and stability, especially with a holiday coming up. These kinds of transitions in diabetes care are stressful enough without all the delays and back-and-forth.
You’ve been really proactive in asking good questions and pushing for the right tests - that takes persistence and confidence, especially when the process feels disjointed. You're right to want to rule things out properly, and a C-peptide test can definitely help fill in more of the picture when it comes to insulin production. It's frustrating that it wasn’t done sooner, but hopefully it’ll give you the clarity you’ve been looking for.
The communication gap around the pen and Libre sensors sounds unnecessarily complicated too - ideally, your consultant would coordinate that directly. It can feel like you're stuck managing the admin side of your care when what you really need is to just focus on feeling better and staying safe. Sadly, we know that the care can sometimes be a postcode lottery when it comes to these things.
Fingers crossed your GP processes everything quickly, and that you’re able to get started on the new insulin with enough time to settle before your trip. You’re doing all the right things by advocating for yourself and staying on top of it. Keep going, and please do keep us posted on how things move forward - we’re here to listen and help whenever we can.

Thank you so much, I appreciate your support and it honestly helps to know I’m not being awkward or impatient. I’m just ready to get things on track and had anxiety over medication changes it’s taken me a little while to accept it.
It’s just you get told by gp only clinics can prescribe cgm them clinic says it’s gp and honestly I’m sick of running round in circles because last time the gp said no to cgm. I’m hoping the recommendation helps. I made it clear no cgm no fast acting insulin so fingers crossed I get it. I currently pay but it’s expensive I have them most of the time but not always. I’m lucky we have the nhs but I waited 2 months to get the gad results from the clinic. I thought they had picked something up because I was told they wanted to see me.
The gp might get this letter sooner hopefully and I can get on track

 

[mashedupmatt]

I'm hoping they did more than just a GAD autoantibody test - mine was negative for those but positive for another 2 (IA-2 and ZnT8) which confirmed my Type 1 diagnosis (worth asking) but good that they are doing a C-Peptide test (which isn't done as standard to be fair unless the autoantibody test comes back negative and you are displaying all other clinical presentations of type 1) - it is not a nice time, with all the uncertainty but the C-Peptide does come back a lot quicker than the Autoantibody ones so hopefully not too long - and if you are on a basal/bolus insulin regime you should have a CGM in my opinion (regardless of type) - and if you want a smart pen ask for a Novopen Echo Plus as it also dials up half units - wishing you all the best and let us know how you get on

 

[Kaz84]

I'm hoping they did more than just a GAD autoantibody test - mine was negative for those but positive for another 2 (IA-2 and ZnT8) which confirmed my Type 1 diagnosis (worth asking) but good that they are doing a C-Peptide test (which isn't done as standard to be fair unless the autoantibody test comes back negative and you are displaying all other clinical presentations of type 1) - it is not a nice time, with all the uncertainty but the C-Peptide does come back a lot quicker than the Autoantibody ones so hopefully not too long - and if you are on a basal/bolus insulin regime you should have a CGM in my opinion (regardless of type) - and if you want a smart pen ask for a Novopen Echo Plus as it also dials up half units - wishing you all the best and let us know how you get o

Thank you for your reply. When I went for the bloods they did do about 5 tubes they took plenty. All I was told is that the antibodies are negative. I’m expecting him to send these results to my gp so I’m interested to actually look at them myself. I’m grateful he’s still doing the c peptide I said that will be good for my peace of mind. If that shows normal il just accept i’m type 2.
The issues are everything is stereotyped and type 2 especially by making out it’s people overweight and I just feel it’s unfair and actually insulting. I guess I’m only pushing so much is because of how much I’m told I don’t fit type 2 yet some consultants seem to kind of ignore that or turn a blind eye.
Il be on insulin regardless of type but I’m fed up of being shamed for eating carbs or not following what they consider healthy. I don’t eat breakfast Im not hungry yet it’s like they are making out I should. I understand from their perspective I truly do that it’s healthier but it’s too much pressure each and every person is different and I’m sick of them being so rigid in their mentality and not considering each persons needs. I’m not hungry I’m not forcing myself to eat.
Well I’ve made that clear to them now

 

[everydayupsanddowns]

Sorry to hear you are having a tricky time getting a clear diagnosis @Kaz84

One of the difficult things about evidence-based medicine, is that results from studies are separated by PICO (population, intervention, comparator, outcomes), which means that the best-practice for T2 Diabetes is defined by classic cases of T2 (the ‘population’). And if you aren’t a classic case, there are likely to be fewer studies, and less data available.

This from the NICE T1 Guidelines makes it clear that it’s really the Clinical Presentation that should form the basis of the initial diagnosis:

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

Hopefully the cPeptide will clarify things for you.

Have they done any investigations to confirm T2? Eg CT scans to show fatty liver / visceral fat around the pancreas as suggested by Prof Taylor’s ‘twin cycle hypothesis’ of T2? I’m just wondering where the uncertainty is coming from (hint: it must not be from “you are not a child”)?

 

[DaveB]

Hi. Th medical profession are obsessed with the view that only a positive antibodies test proves T1. I was told this by my consultant and I objected and he did a C-Peptide test. There is serious Group Think when it comes to T1 and beta cell death "well it's an autoimmune disease of childhood". As viruses can and do cause beta cell death which can and does occur at any age. Where is the proof that beta cell death is always due to an "autoimmune response"?

 

[Inka]

Type 1 diabetes is auto-immune by definition @DaveB That doesn’t mean that beta cells can’t die in other ways, just that in Type 1 they die because of an auto-immune attack. As an example, some Type 2s lose beta cells because they become exhausted or die in high sugar environments, but that doesn’t make those people Type 1.

 

[everydayupsanddowns]

medical profession are obsessed with the view that only a positive antibodies test proves T1

Sorry you’ve had that experience @DaveB

The experts on the NICE Guideline Development Group didn’t hold that view. Their combined opinion was that clinical presentation was the best guide. Things like cPeptide and antibodies can help confirm edge cases, but it’s perfectly possible to be classically T1 and test negative for antibodies (because the antibody attack has successfully killed off all the beta cells, and they have disappeared), or that only certain antibodies were tested for and a person has other ones.

“The risk of false negatives increases with longer diabetes duration” or something similar is in NICE NG17

 

[Kaz84]

My mum is type 1. My dad type 2, gran type 2 so diabetes definitely runs in the family. Il be honest it’s the nurses who have made me push more for the tests I’ve been told by a few different nurses over time I don’t fit the profile and now on insulin and tablets stopped working. With my mum type 1 it does make me think LADA. I’m definitely interested in the c peptide test I definitely think it will give me the clarity needed. I received a call today for libre sensor’s appointment in a few weeks so I’m happy about that it’s step in the right direction. I’m keen to get on track. I do think it’s important to know how much my pancreas is working, I do think insulin and type 2 can be tricky especially if you do make a bit of insulin yourself sometimes you could make a little extra at times and drop, I think this can be forgotten or ignored sometimes.

 

[Kaz84]

Sorry to hear you are having a tricky time getting a clear diagnosis @Kaz84

One of the difficult things about evidence-based medicine, is that results from studies are separated by PICO (population, intervention, comparator, outcomes), which means that the best-practice for T2 Diabetes is defined by classic cases of T2 (the ‘population’). And if you aren’t a classic case, there are likely to be fewer studies, and less data available.

This from the NICE T1 Guidelines makes it clear that it’s really the Clinical Presentation that should form the basis of the initial diagnosis:

1.1.1​

Make an initial diagnosis of type 1 diabetes on clinical grounds in adults presenting with hyperglycaemia. Bear in mind that people with type 1 diabetes typically (but not always) have 1 or more of:

• ketosis
• rapid weight loss
• age of onset under 50 years
• body mass index (BMI) below 25 kg/m2
• personal and/or family history of autoimmune disease. [2015, amended 2022]

1.1.2​

Do not use age or BMI alone to exclude or diagnose type 1 diabetes in adults. [2022]

Hopefully the cPeptide will clarify things for you.

Have they done any investigations to confirm T2? Eg CT scans to show fatty liver / visceral fat around the pancreas as suggested by Prof Taylor’s ‘twin cycle hypothesis’ of T2? I’m just wondering where the uncertainty is coming from (hint: it must not be from “you are not a child”)?

Ive been told by a few different nurses I don’t fit the profile for type 2. I’ve only had blood tests and the consultant said I was type 2 because there’s no antibodies. I can’t tell you exactly what they tested but c peptide is the next step so that’s should definitely give me a clear answer. My mum is type 1 my dad type 2 which is why I think lada because I’m on insulin and tablets stopped working. I do think it’s worth investigating.

 

[everydayupsanddowns]

Ive been told by a few different nurses I don’t fit the profile for type 2. I’ve only had blood tests and the consultant said I was type 2 because there’s no antibodies. I can’t tell you exactly what they tested but c peptide is the next step so that’s should definitely give me a clear answer. My mum is type 1 my dad type 2 which is why I think lada because I’m on insulin and tablets stopped working. I do think it’s worth investigating.

It certainly sounds like it. If your presentation looks more like T1 or LADA (slim build, non-responsive to oral meds, rapid progression to insulin) then as I say it would be interesting to know how they are confirming T2 (eg insulin resistance). But then I’m not medically qualified…

 

[rebrascora]

I will put a little bit of extra doubt into the mix..... How do they know your Dad is Type 2 and not also Type 1 but misdiagnosed? Was he tested for antibodies and C-peptide? Probably not. We take these things as fact because a doctor tells us, but many of us were told we were Type 2 when we were Type 1 and going back 20-30 years antibody tests and C-peptide may not have been widely available and likely not done, plus most doctors assumed if you were an adult you must be Type 2. I think you said in a previous thread that he went onto insulin quite quickly too, so he may just simply be misdiagnosed. It happens A LOT more often than you might think and certainly a lot more often than it should!

I hope the C-peptide brings some clarity but it can all come down to the preconceived ideas and opinions of your consultant and some are reluctant to change their minds once they have decided and C-peptide is not always conclusive either. I do wonder if there is some pressure on consultants not to diagnose too many Type 1s. We have had a few members who have had inconclusive test results but their clinical presentation has suggested Type 1 but consultants have stuck with a Type 2 diagnosis sinply because they didn't test positive for antibodies.

Do make sure to ask what preparation you need for the C-peptide. ie is it to be a fasted test or a stimulated test. The latter is where they want you to attend with a BG above a certain level for the blood/urine test. The urine test is cheaper but not as reliable, so push for a blood test if they suggest urine and stimulated is probably better than fasting.
Unfortunately in the early days of LADA you are usually still producing a reasonable amount of insulin and particularly after extraneous insulin has been introduced because it gives the remaining beta cells a bit of respite, so they are then able to function more efficiently and produce a little extra than when you were first diagnosed and levels were very high.

My C-Pep was low normal but thankfully my GAD was strongly positive, plus my onset was very sudden, but I didn't ever develop ketones and I was a bit overweight at diagnosis and was a self confessed sugar addict, so it could easily have gone either way, but the GAD antibodies, sudden high HbA1c and sudden onset were the factors that tipped the scales. I did also rapidly lose weight after diagnosis in the 6 weeks before I was started on insulin.

 

[Inka]

My mum is type 1. My dad type 2, gran type 2 so diabetes definitely runs in the family. Il be honest it’s the nurses who have made me push more for the tests I’ve been told by a few different nurses over time I don’t fit the profile and now on insulin and tablets stopped working. With my mum type 1 it does make me think LADA. I’m definitely interested in the c peptide test I definitely think it will give me the clarity needed. I received a call today for libre sensor’s appointment in a few weeks so I’m happy about that it’s step in the right direction. I’m keen to get on track. I do think it’s important to know how much my pancreas is working, I do think insulin and type 2 can be tricky especially if you do make a bit of insulin yourself sometimes you could make a little extra at times and drop, I think this can be forgotten or ignored sometimes.

I might have asked you this before @Kaz84 but did they screen for MODY?