Type 1 or 2?

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Searsy

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Type 2
Hello

I wondered if anyone can help, I was diagnosed with diabetes age 26 and was told I had type 2 (I'm now 45), I also have an underactive thyroid which I was diagnosed with at age 22 which is very young, I have a family history of endocrine disorders. My question is, how do they know I am type 2 and not type 1? Is there a test they can do to determine this? I've asked this question and its been ignored or they have changed the subject. I've been on insulin for years and whenever I've come off it I've become ill fairly quickly. I would like to know so is there a definitive test or is it a combination of things to form a diagnosis? Thanks
 
MMmm, autoimmune diseases like t1 can mean you are more likley to get other autoimmune conditions, like thyroid issues. That and ghe family history would, i hope, have made them do the tests, if they existed when you were diagnosed
They use 2 tests, one for antigens that shows an autoimmune attack on your pancreas. (GAD antibodies) Your antibodys may be gone now though. The other is the c peptide test to check your own insulin production. Not sure if they can do that as you are on insulin.
I think one of the things, rightly or wrongly, that decides if you get these tests is if you are overweight. Many people on here were initially misdiagnosed and no doubt will have info to add.
Do you have a libre? Getting a t1 diagnosis can make it easier to get some tech.
I would talk to your doctor to see if either or noth of these tests are still relevant or would help shine light on the situation
 
Hi @Searsy
As @Tdm mentions there is a c-peptide test which measures the amount of insulin your pancreas is produced. Even when we are injecting insulin this test can still be done. No idea about the technicalities of how the test spots the difference but it does and it takes a few days to come back. It is an expensive test to do so they don’t often do it , but it would certainly help you to know if you still have beta cells that are working. Worth asking.

Let us know how you get on.
 
The reality is that many GPs just guess T2 like mine did even though I was stick thin and obviously short of insulin. Even if they give you the two tests i.e. GAD and C-Peptide it may not prove much. My GAD was negative as I don't have auto-immune conditions. There is an assumption/definition that T1 is only caused by an immune response. If not then you are automatically dumped into the T2 category. There is little understanding that viruses can cause beta cell destruction and the end result is identical to T1. Categorisation is a mess globally. I discussed this again with my diabetes consultant at my annual review this week and she repeated the common mantra (wrong in my case) that I was probably T2 at diagnosis, my beta cells just decayed due to excess BS and hence I'm on insulin. We've agreed to just say on the system that I'm 'insulin dependent'. BTW my C-Peptide showed my own insulin just above the T1 borderline. Do ask for the tests and good luck with the results
 
Searsy said:
Hello

I wondered if anyone can help, I was diagnosed with diabetes age 26 and was told I had type 2 (I'm now 45), I also have an underactive thyroid which I was diagnosed with at age 22 which is very young, I have a family history of endocrine disorders. My question is, how do they know I am type 2 and not type 1? Is there a test they can do to determine this? I've asked this question and its been ignored or they have changed the subject. I've been on insulin for years and whenever I've come off it I've become ill fairly quickly. I would like to know so is there a definitive test or is it a combination of things to form a diagnosis? Thanks
Click to expand...

Yes, there are two tests plus clinical opinion. There are a number of Type 1 antibodies they test for, along with C Peptide, which is an indicator of insulin production. I’m Type 1 and I still had antibodies around 25 years after diagnosis.

Sometimes the tests are borderline eg C Peptide, and also there are other things they look at, eg insulin sensitivity, if you had ketones at diagnosis, if you lost weight prior to diagnosis, if you were overweight at diagnosis. All those things and others plus the two tests above, if needed, help determine your Type.
 
Unfortunately the tests mentioned are not always definitive and it still comes down to someone looking at the whole picture and making a decision. If you have been diagnosed a long time, then the antibodies may not be present or at a very low level that would not give you a conclusive diagnosis. Long term Type 2 diabetics can end up with little or no insulin production, so again that isn't always conclusive when this has gone on for a long time. I think @Lucyr has just been through this process after many years with a Type 2 diagnosis from a relatively young age and I think I am right in saying it has been an emotional rollercoaster. I think being overweight at diagnosis can seriously cloud the issue and it shouldn't, but there is prejudice even within the medical profession. I think there is also pressure for GPs to keep treatment inhouse as much as possible rather than referring people to consultants who are more likely to spot a misdiagnosed Type 2 and are more experienced to make these clinic decisions, but sadly the diabetes clinics are seriously stretched, particularly since Covid increased their workload, so getting appointments for people who are not in critical need of them is a low priority, even if you can get your GP to refer you. Of course that doesn't mean you shouldn't try but do be prepared to have to keep asking if the first response in No and also be prepared for a negative result. I believe there is the option of having the tests done privately if you can afford them and I wonder if this might get you a more independent review of the results..... whereas with a GP or consultant, there will be an element of not wanting to admit they were wrong if the results do not show a clear antibody result.
I wish you lots of luck as I was misdiagnosed initially but was fortunate to have the antibody test within the first few months (my Cpeptide was borderline as I still had enough beta cells during that honeymoon period and they had probably rallied a little after the introduction of insulin therapy) The sudden onset of symptoms and dramatic weight loss were factors for me although I was carrying a couple of surplus stones and freely admitted to a poor diet prediagnosis. (sugar addict!) so there were indicators for Type 1 and Type 2 but the GAD antibody test swung it for me.
 
@DaveB I have always believed that Type 1 is an auto-immune condition which may be triggered by a virus rather than the virus causing full beta cell destruction so I am curious about your diagnosis without any auto-immune response.
I understand it is possible for GAD test to be inconclusive if it does not detect any anti-bodies but anti-bodies are not the same as autoimmune.
 
The two tests which I referred to are not GAD and C Peptide. They’re Type 1 antibodies plural (inc GAD and others in addition) and C Peptide. Just saying that in case my earlier post was unclear. I was told it was best not to test GAD alone in most cases and to test the set of Type 1 antibodies, which include antibodies to the islet cells themselves (obviously connected to Type 1) and others.
 
helli said:
@DaveB I have always believed that Type 1 is an auto-immune condition which may be triggered by a virus rather than the virus causing full beta cell destruction so I am curious about your diagnosis without any auto-immune response.
I understand it is possible for GAD test to be inconclusive if it does not detect any anti-bodies but anti-bodies are not the same as autoimmune.
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Interesting but I wonder why it's assumed that beta cell destruction is always an auto-immune cause when other viral attacks such as in the liver etc (e.g. hepatitis) there is no talk of an auto-immune response. Personally I think it's Group Think that auto-immunity is the cause without the right research to back it up. Does anyone know of any research that proves the point? BTW my wife had an EBV (Epstein Bar Virus) attack last year following a kidney transplant and there was no talk of an immune response to that.
 
DaveB said:
Interesting but I wonder why it's assumed that beta cell destruction is always an auto-immune cause when other viral attacks such as in the liver etc (e.g. hepatitis) there is no talk of an auto-immune response. Personally I think it's Group Think that auto-immunity is the cause without the right research to back it up. Does anyone know of any research that proves the point? BTW my wife had an EBV (Epstein Bar Virus) attack last year following a kidney transplant and there was no talk of an immune response to that.
Click to expand...

Because that’s the definition of Type 1 and shown by auto-antibodies? Even if/when a virus is involved, the virus doesn’t kill the beta cells in Type 1, the immune system wrongly identifies the beta cells as invaders and attacks them as well as or after attacking the virus.
 
@Searsy - I was diagnosed T2 at age 42 and had my diagnosis changed to T1 20 years later at age 62. I was on insulin only for 15 years by then. I had the first 5 years on Metformin which did absolutely nothing to help, hence the switch to insulin. They suspected T1 at that time and I did have a GAD test which came back inconclusive which the consultant back then said was unsurprising given the length of time (5 years) since initial presentation of symptoms.

It was only when I asked my GP last year about tweaking my insulin regime to try and get better control that they referred me to the diabetes team at the hospital. The consultant there reviewed my diagnosis and changed it to T1 based on how I respond to insulin and carbs. Apparently the amount of insulin I need to achieve in range BG levels and how carbs affect my BG are typical of a T1. I feel really lucky to have had this referral and diagnosis change, they got me onto Libre 2 immediately and have given me so much help in adjusting my MDI regime so that within a year I have improved my HbA1c.

I would imagine there is a lot of variability across the country in thinking and willingness to change diagnosis, but I would urge you to ask your GP for a referral as I did, then once under the care of your hospital, you can always ask the consultant to review your diagnosis. Even if tests would not be conclusive now, perhaps your response to insulin could be a pointer to being T1? Good luck!
 
I was diagnosed as type 1 at 42yrs after going into DKA. The specialist then thought I was type 2 as I was still producing some insulin. (I was very thin at the time as lost 7kgs in 1 month). The specialist thought my levels were quite different so sent some of my DNA to the US. Came back ae Mitochondrial diabetes or MIDD. 🙂 So Insulin dependent and Metformin makes me sick.
 
I have had the c-peptide test to confirm the T1 diagnosis, as our old GP kept changing Dr Hillson's diagnosis from T1 to T2 for some reason, so I asked for the test.
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Natural, internal, pancreas made insulin, contains two (2) peptide rings, only one of which can be absorbed into the muscle to produce energy (ATP)
Manufacturers of commercial insulin don't bother making the unused/unusable 2nd peptide ring (the c-peptide ring)
.
So... if the blood test sees the c-peptide molecules, it means you are still producing pancreatic insulin, if it sees none, it means your pancreatic beta cells are no longer producing natural insulin

I like to research problems I have. It's all knowledge that might help
.
Edit: this a simplified explanation but should help explain. Wikipedia has more details
 
Robert459 said:
I have had the c-peptide test to confirm the T1 diagnosis, as our old GP kept changing Dr Hillson's diagnosis from T1 to T2 for some reason, so I asked for the test.
.
Natural, internal, pancreas made insulin, contains two (2) peptide rings, only one of which can be absorbed into the muscle to produce energy (ATP)
Manufacturers of commercial insulin don't bother making the unused/unusable 2nd peptide ring (the c-peptide ring)
.
So... if the blood test sees the c-peptide molecules, it means you are still producing pancreatic insulin, if it sees none, it means your pancreatic beta cells are no longer producing natural insulin

I like to research problems I have. It's all knowledge that might help
.
Edit: this a simplified explanation but should help explain. Wikipedia has more details
Click to expand...
Thanks for that. That makes sense and explains how they can do ‘spot the difference’.
 
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