Consultant unsure which type despite positive GAD result

[BethJo]

Hi guys, I’m new to this but thought I’d give it a try as I bet many of you know how much being diagnosed can mess with your head lol very frustrating! I’ll try and keep my post simple

On 8th May 21 I was rushed to hospital with a dangerously high fever and stayed there for nearly a week with a bad infection (not covid). While I was there they’d been checking my blood glucose levels and they were pretty high so they decided to do the HBAC1 blood test to see if I had diabetes and it came back as positive at 65. At the time because of my age they were unsure which type of diabetes I have so to be safe they put me on insulin glargine before I went home and to wait for the GAD test results to come back.

Since being home I’ve had consistently high blood sugar levels between 12-21. I was then put on a low dose of NovoRapid to take before meals but still no changes.

I had 1 really low level day going right down to 5 but it was a day of not eating at all and high stress.

The blood test results came back a few weeks ago which showed a positive outcome which the nurse told me is likely to be connected to type 1.

However, I’ve been to see the consultant today and she can’t definitively say which type it is as there’s factors for both but this doesn’t make sense as I’ve had a positive GAD test. (Not that I know what it really means). According to the islet test my body is producing a very low amount of insulin but could this be the very early stage of type 1? She has kept me on both types of insulin but has incorporated metformin as well.

According to my records I had a blood glucose test late last year which was normal and another in March which was slightly high at 9 but they obviously didn’t test me for diabetes. I had a blood test in 2019 to check for diabetes but that was normal.

As you can probably see it’s appeared very quickly and diagnosed quick too by chance.

Ive had very bad symptoms this year & lost a lot of weight but didn’t think it could be diabetes, I just put it down to the amount of stress I’ve been dealing with.

I suppose my question to you lovely people would be have you had this type of experience before? How long did it take you to get a definite answer? Can you offer any advice as to how I can stop stressing over the confusion of it all?

It seems likely that I have type 1. I’m 31 years old with a plethora of other health conditions/medications etc with a positive GAD test. However I have an extensive family history on my fathers side of type 2 diabetes hence the problem of diagnosis.

Thank you in advance for any help and/or support you can offer ️

 

[urbanracer]

Hi and welcome to the forums.

First off - stress. Stress raises your cortisone levels and that's a signal for your liver to pump out glucose and help you deal with whatever is causing the stress. Put simply, stress makes your glucose levels worse so RELAX.

The GAD test is not absolutely foolproof and it's written in various places that non diabetics may test positive. But generally speaking, a (strongly) positive GAD result is taken to indicate Type 1 diabetes. Sudden and rapid weight loss is another factor that backs this up. Polyuria -waking up at night to wee often accompanies this too.

I also had a catalogue of minor health issues for several years. After the T1 diagnosis and getting my glucose levels under some control, most of my other health issues have abated. Maybe (just maybe), you will see some improvement.

 

[Antje77]

Hi @BethJo , and welcome to the forum!

As far as I know, high blood glucose + anti GAD = T1 (or LADA).
Producing very little insulin fits in too.

she can’t definitively say which type it is as there’s factors for both

Has she told you what factors make her think you might not be T1?

Is your consultant an endocrinologist?
If not, I think it's time for a referral.

 

[BethJo]

Hi and welcome to the forums.

First off - stress. Stress raises your cortisone levels and that's a signal for your liver to pump out glucose and help you deal with whatever is causing the stress. Put simply, stress makes your glucose levels worse so RELAX.

The GAD test is not absolutely foolproof and it's written in various places that non diabetics may test positive. But generally speaking, a (strongly) positive GAD result is taken to indicate Type 1 diabetes. Sudden and rapid weight loss is another factor that backs this up. Polyuria -waking up at night to wee often accompanies this too.

I also had a catalogue of minor health issues for several years. After the T1 diagnosis and getting my glucose levels under some control, most of my other health issues have abated. Maybe (just maybe), you will see some improvement.

Thank you for the nice welcome

Definitely agree stress does cause higher levels but with high functioning anxiety that’s uncontrolled there’s not much I can do at the moment ‍ it’s been a very tough year.

I’ll note my conditions below to see if they relate in anyway:
Epilepsy with myoclonic jerks
Complex ptsd
Borderline personality disorder
Extreme fibromyalgia
Underactive thyroid (hyperthyroidism)
Chronic fatigue syndrome
Sleep disorders
Breathing issues (under investigation)
Partially deaf

As my original post states, I think the diabetes has come on very quick this year with symptoms of exhaustion, extreme thirst and more frequently going to the toilet as well as losing around 14lbs in less than 2 months (I had put weight on late last year)

Did you get a quick diagnosis of T1?

 

[BethJo]

Hi @BethJo , and welcome to the forum!

As far as I know, high blood glucose + anti GAD = T1 (or LADA).
Producing very little insulin fits in too.

Has she told you what factors make her think you might not be T1?

Is your consultant an endocrinologist?
If not, I think it's time for a referral.

Hey, thank you

Yes I agree it definitely makes sense towards T1 but she said because I only had 1 positive GAD test instead of 2 or 3 and the family history of T2 on my dads side she just can’t give an answer hence why I’m now on insulin and metformin.

It says on my letter she’s a general diabetes Dr specialising in diabetic medicine, not too sure what that means.

 

[MsClarita]

So sorry that you’ve been put in such a confusing situation, that can’t be doing anything for your stress. I can’t offer any advice other than to share my experience, I lost a lot of weight in the months leading to diagnosis of type 1. I also attributed it to stress. I am 37 and we have no family history of type 1 diabetes. Hope you get an answer soon xx

 

[searley]

Hey, thank you

Yes I agree it definitely makes sense towards T1 but she said because I only had 1 positive GAD test instead of 2 or 3 and the family history of T2 on my dads side she just can’t give an answer hence why I’m now on insulin and metformin.

It says on my letter she’s a general diabetes Dr specialising in diabetic medicine, not too sure what that means.

As you are on insulin the need to know the type is a little less urgent as insulin is the treatment for T1

So for a while relax and treat yourself properly so you can feel a little better

Then do whatever tests they want to get the proper diagnosis

If you were not on insulin and turned out T1 then the situation would be a little different

So in the short term don’t worry too much about the type

 

[BethJo]

So sorry that you’ve been put in such a confusing situation, that can’t be doing anything for your stress. I can’t offer any advice other than to share my experience, I lost a lot of weight in the months leading to diagnosis of type 1. I also attributed it to stress. I am 37 and we have no family history of type 1 diabetes. Hope you get an answer soon xx

Aww thank you that’s kind of you to say, it’s certainly not helping but I’m trying to stay positive

Oh bless you, how did you find out you have diabetes? I always thought you had to be a child to get T1 but apparently not. Do you have T2 in your family at all?

Thank you for sharing your experience and support! X

 

[BethJo]

As you are on insulin the need to know the type is a little less urgent as insulin is the treatment for T1

So for a while relax and treat yourself properly so you can feel a little better

Then do whatever tests they want to get the proper diagnosis

If you were not on insulin and turned out T1 then the situation would be a little different

So in the short term don’t worry too much about the type

Yea they said that at the hospital that it was safer to be on insulin until a diagnosis than not be on it and it turns out to be T1.

The consultant has basically just said to see what the metformin does alongside the insulin.

The most annoying thing is I was told by the nurse that it’s T1, my GP have said it’s T1 but the consultant is now unsure.

I think I’m just wishful thinking that it’s T2 so I can get it into remission lol

 

[searley]

Yea they said that at the hospital that it was safer to be on insulin until a diagnosis than not be on it and it turns out to be T1.

The consultant has basically just said to see what the metformin does alongside the insulin.

The most annoying thing is I was told by the nurse that it’s T1, my GP have said it’s T1 but the consultant is now unsure.

I think I’m just wishful thinking that it’s T2 so I can get it into remission lol

My gp said T1 my nurses said t1

My consultant said not sure probably t2

I stayed like that for 9 years until a cpeptide test showed I’m producing almost no insulin

 

[BethJo]

My gp said T1 my nurses said t1

My consultant said not sure probably t2

I stayed like that for 9 years until a cpeptide test showed I’m producing almost no insulin

Wow 9 years that’s an insane amount of time! I’m so sorry you had to go without answers for so long.

The consultant said 3 years of monitoring and tests to hopefully get a proper answer as it’s in the early stages but depending on what the metformin does it could be less time, we shall see.

No ones mentioned the cpeptide test though, would they have done that? She did say I’ve got very low insulin levels so I assume that’s the cpeptide test.

 

[searley]

Wow 9 years that’s an insane amount of time! I’m so sorry you had to go without answers for so long.

The consultant said 3 years of monitoring and tests to hopefully get a proper answer as it’s in the early stages but depending on what the metformin does it could be less time, we shall see.

No ones mentioned the cpeptide test though, would they have done that? She did say I’ve got very low insulin levels so I assume that’s the cpeptide test.

They probably would not have done it

Cpeptide test shows how much insulin you produce and in the early stages you can still produce quite a lot

 

[BethJo]

They probably would not have done it

Cpeptide test shows how much insulin you produce and in the early stages you can still produce quite a lot

She said I wasn’t producing much insulin from the test but I have no idea what that test is lol

 

[searley]

She said I wasn’t producing much insulin from the test but I have no idea what that test is lol

Ah the only real way they check is a cpeptide test or direct insulin count so they may have done one either produces the same results when not on insulin.. after starting insulin they have to check with a cpeptide test as they can do an insulin count

In the early stages T2’s often over produce.. T1/LADA don’t produce enough

So I would think with gad plus low insulin that T1 or LADA (slow onset t1) is highly likely

So anyway welcome to the ‘new life challenge’

It’s not that bad when you get used to it.. good luck and remember it may feel like it but you’re not alone.. plenty of people here gone through the same. So browse the forums.. ask questions etc

 

[BethJo]

Ah the only real way they check is a cpeptide test or direct insulin count so they may have done one either produces the same results when not on insulin.. after starting insulin they have to check with a cpeptide test as they can do an insulin count

In the early stages T2’s often over produce.. T1/LADA don’t produce enough

So I would think with gad plus low insulin that T1 or LADA (slow onset t1) is highly likely

So anyway welcome to the ‘new life challenge’

It’s not that bad when you get used to it.. good luck and remember it may feel like it but you’re not alone.. plenty of people here gone through the same. So browse the forums.. ask questions etc

Ohh right ok I get it now thank you for clearing that up, it makes so much more sense now as they took the blood tests before I was on insulin so a cpeptide will be next then.

That’s what I’m thinking, it just makes more sense for it to be T1.

Lol thank you, it’s definitely a challenge so far. My partner has to do the injections bless him so it affects more than just myself but I’m glad there’s kind people like yourself around to help! Thank you so much for the information and support, take care of yourself

 

[Daibell]

If the consultant expects the metformin to have much of an effect with the insulin then he does not know much about diabetes and the way metformin works. I would expect you to be T1. A Positive GAD and low insulin thru C-peptide for most medics would 'prove' T1.

 

[Antje77]

If the consultant expects the metformin to have much of an effect with the insulin then he does not know much about diabetes and the way metformin works.

For some T1's metformin makes a huge difference. Having T1 doesn't mean you can't have insulin resistance as well, in which case the metformin may mean needing less insulin while reaching lower numbers.
So even if the metformin has a noticeable effect, this doesn't rule out T1 at all.

 

[EllieM]

I agree with the others that the official diagnosis doesn't matter that much given that you are getting insulin, though it may be better for you to have an official T1 label, as certain technological benefits (insulin pumps and continuous glucose monitors) are prescribed more freely to T1s. Given your other conditions, you have a very good case for a continuous glucose monitor, at least.

Unfortunately autoimmune diseases seem to love company - T1s get regular checks on their thyroid levels as a result and we have a subforum dedicated to diabetes and other conditions such as coeliacs and thyroid problems.
Other Health Conditions and Diabetes | Diabetes Forum • The Global Diabetes Community

T1 can happen at any age (remember a certain female ex prime minister) though a lot of people (including doctors) assume it's a kids' disease.

Lots of virtual hugs: hopefully your levels will come down further soon.

 

[BethJo]

If the consultant expects the metformin to have much of an effect with the insulin then he does not know much about diabetes and the way metformin works. I would expect you to be T1. A Positive GAD and low insulin thru C-peptide for most medics would 'prove' T1.

I agree with Antje77 about the metformin being used in conjunction with insulin, there’s a lot of research to suggest it helps the insulin work better. However I understand what you mean as if the metformin doesn’t do anything then what’s the point lol

I’d expect it to be proven by the results but apparently not, I’m thinking of getting a second opinion

 

[BethJo]

I agree with the others that the official diagnosis doesn't matter that much given that you are getting insulin, though it may be better for you to have an official T1 label, as certain technological benefits (insulin pumps and continuous glucose monitors) are prescribed more freely to T1s. Given your other conditions, you have a very good case for a continuous glucose monitor, at least.

Unfortunately autoimmune diseases seem to love company - T1s get regular checks on their thyroid levels as a result and we have a subforum dedicated to diabetes and other conditions such as coeliacs and thyroid problems.
Other Health Conditions and Diabetes | Diabetes Forum • The Global Diabetes Community

T1 can happen at any age (remember a certain female ex prime minister) though a lot of people (including doctors) assume it's a kids' disease.

Lots of virtual hugs: hopefully your levels will come down further soon.

I think this is the main stressor as having an official diagnosis can open up different doors. I know with both types that diet and exercise are important but more so to get into remission with T2 so it’s a little frustrating but I’m just going to do the best I can

I’d love a continuous monitor, my fingers hate me right now lol I’ve already got hyperthyroidism so that’s being checked every 3 months anyway. Misery loves company ay lol

Thank you so much, virtual hugs back to you I appreciate your time and support x