Type 1 diagnosis - test results

[Karenchq]

In March, after a week in hospital, I was diagnosed with type 1. My BS at arrival was 650. At first, I was in denial and had difficulties accepting the diagnosis, then thought perhaps I just have a mild case. I am accepting the diagnosis, but there is still a slight dought in my mind. My doctor said that he confirmed the diagnosis with these three tests. I want to take care of myself and am so grateful for this group with so many people willing to support each other and welcome new people. I am overwhelmed with so much information that I don't understand. Can someone give me an idea of what these test are and of number ranges so that I can compare with my results as given. If not to personal, could I ask you about your diagnosis and if your doctor used the same tests or others to confirm your diagnosis.

+ 2000 GAD antibodies
9.3 IA 2 antibodies
600 Anti-PPO

 

[catapillar]

Hi @Karenchq sorry that you are joining the club. But I'm afraid those tests do confirm that you have auto immune type 1 diabetes.

The GAD and IA2 antibodies are the ones that kill off insulin producing beta cells in people with type 1. A normal range (non diabetic) for these would be <1 or not detectable.

My GAD is >3000. Don't know if I've ever had the other tests.

I'm not sure what anti PPO test is I'm afraid. I'm sure there will be someone who can shed some light on that.

Wishing it away is a really powerful instinct & no here would blame you for that. But now your diagnosis is well & truly confirmed, know that there is lots of support & info on here for dealing with it.

 

[Karenchq]

Hi @Karenchq sorry that you are joining the club. But I'm afraid those tests do confirm that you have auto immune type 1 diabetes.

The GAD and IA2 antibodies are the ones that kill off insulin producing beta cells in people with type 1. A normal range (non diabetic) for these would be <1 or not detectable.

My GAD is >3000. Don't know if I've ever had the other tests.

I'm not sure what anti PPO test is I'm afraid. I'm sure there will be someone who can shed some light on that.

Wishing it away is a really powerful instinct & no here would blame you for that. But now your diagnosis is well & truly confirmed, know that there is lots of support & info on here for dealing with it.

Catapillar,

Thank you for your answer, that is helpful for my understanding. Another question, if you don't mind. At 3000, did that indicate that your beta cells were complete destroyed and how did you physically feel at that point?

 

[catapillar]

The test for whether you have any residual beta cell function is a c-peptide test, which shows if you are producing any of your own insulin. I'm sure you will be producing some insulin at this stage- have a look at honeymoon period or honeymooning, that's what this stage is called.

I did have the GAD test until about 4.5 years after diagnosis and at that stage my c-peptide was not detectable, so yes, all of my beta cells are dead. But it's a gradual process, I think I probably honeymooned for maybe 2 years plus, a lot of people think the end of the honeymoon makes managing diabetes a little easier as you don't get unpredictable bursts of self produced insulin. I certainly didn't notice beta cells dying in any adverse way post diagnosis - it isn't an event like that.

 

[Karenchq]

The test for whether you have any residual beta cell function is a c-peptide test, which shows if you are producing any of your own insulin. I'm sure you will be producing some insulin at this stage- have a look at honeymoon period or honeymooning, that's what this stage is called.

I did have the GAD test until about 4.5 years after diagnosis and at that stage my c-peptide was not detectable, so yes, all of my beta cells are dead. But it's a gradual process, I think I probably honeymooned for maybe 2 years plus, a lot of people think the end of the honeymoon makes managing diabetes a little easier as you don't get unpredictable bursts of self produced insulin. I certainly didn't notice beta cells dying in any adverse way post diagnosis - it isn't an event like that.

Thanks again

 

[Juicyj]

Hello @Karenchq and welcome to the fourm.

What you're experiencing regarding your diagnosis is completely natural, I was diagnosed after falling ill during a week's ski holiday and the day I returned I went to the docs and was diagnosed there and then, i'd lost weight, had no energy, couldn't get moisture in my mouth but was gulping lots of fluids, had thrush, blurry vision, dry hands and pear breath. A few months after I was diagnosed I got involved with C-Peptide research at Bristol hospital as I was newly diagnosed. I spoke to the doctor on the research programme to see if there was anyway I could preserve what life I had in my pancreas, sadly that wasn't anything I could do. Doing the research helped me accept the type 1 as I was doing something positive that could benefit a future cure and I got support from a healthcare team once a month who analysed my reaction to the medication I was being given as well as helped me manage my type 1 status.

Acceptance of your condition is a hugely important aspect of your self management, it will enable you to focus on the day to day stuff rather than focussing on the past or future. Read as much as you can, become an expert, if there's research going on then get involved, I found details of mine through Juvenile Diabetes Research Foundation. I have since learned I was given a placebo, which didn't really bother me as i'd had a year of seeing a doctor every month who got me on track and this was a big help. Since then I communicate with other type 1's here, which helps as you know you're not alone and can talk 'type 1' stuff to others who understand

 

[azure]

Hi @Karenchq

I sympathise with your feelings. I honestly couldn't believe I'd got Type 1. I didn't know a lot about it, and I think that lack of knowledge made me feel worse because I thought maybe I'd done something wrong to get it. I also felt angry as well as upset. I resented the fact that I'd got it because, in my mind, it was linked with illness and failure somehow. But now I know better and I understand that's not true

What helped me was understanding that Type 1 was an auto-immune disease and that it wasn't my fault and it didn't mean I'd done something wrong.

It's a hard diagnosis to take on board because Type 1 means a huge lifestyle change. Not just the injections, but having to think about what you're eating, your blood sugar, when you're going to exercise, etc. BUT it does get easier. You learn to fit it into your life and you're still the same person as you were before, just with an extra thing to think about.

I didn't have any tests to confirm my diagnosis. I had become very ill and had lost a lot of weight very quickly. I was admitted to hospital as an emergency and started on insulin. I felt better very quickly once my blood sugar came down (it was around 25 at diagnosis, which is 450 in your measurements).

My advice is to learn as much as you can about Type 1; learn to count carbs and, in time, to adjust your insulin according to your food and test results; take one day at a time to start with and give yourself time to deal with your diagnosis; and know that you aren't alone - there are lots of Type 1s here who can give you support and advice.

(Note - don't be fooled by the honeymoon period. When I first started on insulin, after a few weeks my own insulin production seemed to recover a little and I began to think that maybe there'd been some mistake in my diagnosis. But, of course, there wasn't. The better results I was getting and my low insulin doses gradually changed as my own insulin production declined. If I'd known that in advance, I wouldn't have got that false hope.)

 

[Karenchq]

Hello @Karenchq and welcome to the fourm.

What you're experiencing regarding your diagnosis is completely natural, I was diagnosed after falling ill during a week's ski holiday and the day I returned I went to the docs and was diagnosed there and then, i'd lost weight, had no energy, couldn't get moisture in my mouth but was gulping lots of fluids, had thrush, blurry vision, dry hands and pear breath. A few months after I was diagnosed I got involved with C-Peptide research at Bristol hospital as I was newly diagnosed. I spoke to the doctor on the research programme to see if there was anyway I could preserve what life I had in my pancreas, sadly that wasn't anything I could do. Doing the research helped me accept the type 1 as I was doing something positive that could benefit a future cure and I got support from a healthcare team once a month who analysed my reaction to the medication I was being given as well as helped me manage my type 1 status.

Acceptance of your condition is a hugely important aspect of your self management, it will enable you to focus on the day to day stuff rather than focussing on the past or future. Read as much as you can, become an expert, if there's research going on then get involved, I found details of mine through Juvenile Diabetes Research Foundation. I have since learned I was given a placebo, which didn't really bother me as i'd had a year of seeing a doctor every month who got me on track and this was a big help. Since then I communicate with other type 1's here, which helps as you know you're not alone and can talk 'type 1' stuff to others who understand

Thank you for your response and encouragement

 

[Karenchq]

Hi @Karenchq

I sympathise with your feelings. I honestly couldn't believe I'd got Type 1. I didn't know a lot about it, and I think that lack of knowledge made me feel worse because I thought maybe I'd done something wrong to get it. I also felt angry as well as upset. I resented the fact that I'd got it because, in my mind, it was linked with illness and failure somehow. But now I know better and I understand that's not true

What helped me was understanding that Type 1 was an auto-immune disease and that it wasn't my fault and it didn't mean I'd done something wrong.

It's a hard diagnosis to take on board because Type 1 means a huge lifestyle change. Not just the injections, but having to think about what you're eating, your blood sugar, when you're going to exercise, etc. BUT it does get easier. You learn to fit it into your life and you're still the same person as you were before, just with an extra thing to think about.

I didn't have any tests to confirm my diagnosis. I had become very ill and had lost a lot of weight very quickly. I was admitted to hospital as an emergency and started on insulin. I felt better very quickly once my blood sugar came down (it was around 25 at diagnosis, which is 450 in your measurements).

My advice is to learn as much as you can about Type 1; learn to count carbs and, in time, to adjust your insulin according to your food and test results; take one day at a time to start with and give yourself time to deal with your diagnosis; and know that you aren't alone - there are lots of Type 1s here who can give you support and advice.

(Note - don't be fooled by the honeymoon period. When I first started on insulin, after a few weeks my own insulin production seemed to recover a little and I began to think that maybe there'd been some mistake in my diagnosis. But, of course, there wasn't. The better results I was getting and my low insulin doses gradually changed as my own insulin production declined. If I'd known that in advance, I wouldn't have got that false hope.)

Thanks for your kind words. I won't get false hopes

 

[Robinredbreast]

Hi, lots of people feel that way at first. It can be a huge shock and some find it so difficult to come to terms with and their families too.
I basically just accepted it and got on with it, it's a long story and a very unhappy time leading up to type 1. The hardest thing I found hard to accept was Osteoporosis, I still can't and still think they got my results mixed up with someone else's. But, it's another thing that wont stop me from doing anything I want to.
Tbh, It will get a little easier in time, the thing to remember is, don't let diabetes rule you or your life, you're in control and in charge and with good management and doing your best to get good control, life goes on.
Take care, with best wishes RRB

 

[Karenchq]

Hi, lots of people feel that way at first. It can be a huge shock and some find it so difficult to come to terms with and their families too.
I basically just accepted it and got on with it, it's a long story and a very unhappy time leading up to type 1. The hardest thing I found hard to accept was Osteoporosis, I still can't and still think they got my results mixed up with someone else's. But, it's another thing that wont stop me from doing anything I want to.
Tbh, It will get a little easier in time, the thing to remember is, don't let diabetes rule you or your life, you're in control and in charge and with good management and doing your best to get good control, life goes on.
Take care, with best wishes RRB

Thank you for the necouragement