Awaiting results??? Type 1 or 2?

[Carlyh210]

Hi there, So sorry for long post just looking for some advice please. 7 months ago my daughter got diagnosed with type 1. She has been coping really well and got on with everything that has been thrown at her. Last week I finally decided I should see the doctor (after a long spell of feeling unwell) They checked my sugar levels (which were very high 28.8) ketones (3.4) and told me to go to A&E. I have had high levels for a while and just avoided doing anything, I was sure i would be told i was type 2 and didnt really want to admit it to myself. So after going A&E I have been put on insulin and have spoke to dietitian and diabetes nurse. The nurse told me i would be put on insulin because my bloods were high but that it may well be type 2 or something else entirely different???? She said that until they know otherwise they will assume im type 1 and be treated as such??? The same thing happened to my daughter and I remember when my daughter got diagnosed we had to wait weeks until the follow up appointment until they finally said she had a antibody that confirmed she was definitely type 1?
Im just a bit confused with everything at the moment as everyone who knows me, knows im overweight and everyone is telling me im type 2 because of my size. Im trying to get my head around the fact it may be type 2, yet am having to take insulin in the meantime and living as a type 1. Has anyone been in a similar situation? Has anyone else initially been given insulin then told they were actually type 2? And if so how long did it take to diagnose it fully? Sorry again for long post and all questions :/

 

[Daibell]

Hi. I've seen posts on the forums where someone diagnosed as T1 has finally found to be T2. Yes, being overweight can confuse things as you can be T1 and be overweight. Hopefully you have had both T1 tests i.e. GAD and C-Peptide the latter being more useful overall. All you can do is await the results and in the meantime have the insulin. Try to keep the carbs down but be aware you may need to reduce the insulin to match; test quite often to avoid a hypo.

 

[Juicyj]

Hello and welcome @Carlyh210

It's quite a worrying time so i understand your need for some answers, my best advice is to simply keep a close eye on your levels, keep a record of your testing and insulin injections, it's useful to report back to your diabetic nurse when doing reviews, keeping your blood glucose levels down is the priority at the moment, so if insulin can help then so be it. As your on insulin make sure you have some quick acting glucose at hand at all times too, my recommendation is gluctotabs as they are the easiest way to treat a hypo.

Hope you get some answers soon, please chat here if you have any worries too, always someone about

 

[TashT1]

I am going through exactly the same thing. Diagnosed 4 weeks ago sent to hospital by docs - BG 25, ketones 3, Hba1c 97 (11%) - told almost certainly it is Type 1, given a freestyle libra on prescription, 28u of Lantus daily, 10u of Novarapid with each meal & told to await antibody tests.

Having originally been told my antibody results were confusing I then got a call to say they were negative & on that basis I am Type 2, it was like being diagnosed all over again, overwhelming.

Well it just doesn’t sit right with me so I put my research head on and found this:

1. I don’t know if they did a c-peptide test & if they did it must have been random non-fasting - I find out later today if/ how they tested for this.

2. 40% of Type 1’s get misdiagnosed as Type 2 especially if you are over 30

3. 30% of Type 1’s are antibody negative or develop antibodies 6-12 months later

4. Several studies suggest that anyone over 30 & requiring insulin should be treated as Type 1 until proven otherwise, a high BMI, age & a lack of antibodies is not automatic proof of Type 2.

5. There is growing evidence that coronavirus (even mild cases) is leading to diabetes diagnosis & lead researchers investigating this do not know if this results in Type 1, Type 2 or a new classification.

I’m just at the start of this journey but the one thing I do know is to follow my instincts and push for the right diagnosis. I had to learn this the hard way through another autoimmune diagnosis.

Make a list of questions for the next time you speak to your DN and ask for a copy & full explanation of your results, don’t just accept positive/ negative, good/ bad. Without this information you can’t double check the advice you are receiving.

Good luck

 

[ert]

I hope you get some answers from your medical team soon. Have they completed a c-peptide test, to see how much insulin your body is producing? If not, you could ask for one. A c-peptide, higher than the normal range would support you are type 2. If your insulin is abnormally low, it supports type 1 and they can also test for GAD and IA2 antibodies to see if you have had an autoimmune response if it's on the low side. It can take 2 to 4 weeks to get these results back. In the meantime, they're treating you with insulin as your blood sugars were so high.

 

[KK123]

Hi there, my story is similar but the only reason they went on to do the extra tests (C Peptide & antibodies) was because I was slim. I did have ketones and off the scale glucose but even so there was initially a lot of murmuring about type 2 because of my age (56). I was put on insulin after leaving hospital and around 6/8 weeks later the tests came back as type 1. It is hard I know but at least they are not writing you off as a definite type 2 simply because of your weight which seems to be what they usually do. Many, many people are misdiagnosed simply because of a certain presentation. x

 

[TypeZero.]

Hi there, So sorry for long post just looking for some advice please. 7 months ago my daughter got diagnosed with type 1. She has been coping really well and got on with everything that has been thrown at her. Last week I finally decided I should see the doctor (after a long spell of feeling unwell) They checked my sugar levels (which were very high 28.8) ketones (3.4) and told me to go to A&E. I have had high levels for a while and just avoided doing anything, I was sure i would be told i was type 2 and didnt really want to admit it to myself. So after going A&E I have been put on insulin and have spoke to dietitian and diabetes nurse. The nurse told me i would be put on insulin because my bloods were high but that it may well be type 2 or something else entirely different???? She said that until they know otherwise they will assume im type 1 and be treated as such??? The same thing happened to my daughter and I remember when my daughter got diagnosed we had to wait weeks until the follow up appointment until they finally said she had a antibody that confirmed she was definitely type 1?
Im just a bit confused with everything at the moment as everyone who knows me, knows im overweight and everyone is telling me im type 2 because of my size. Im trying to get my head around the fact it may be type 2, yet am having to take insulin in the meantime and living as a type 1. Has anyone been in a similar situation? Has anyone else initially been given insulin then told they were actually type 2? And if so how long did it take to diagnose it fully? Sorry again for long post and all questions :/

You’re suffering from a lot of misconceptions. I used to be overweight and I have been diagnosed with type 1 diabetes.

Aside from that, it really doesn’t matter if you’re type 1 or 2. The disease is the same but a different pathogenesis is present.

Unfortunately it does seem there’s a high probability you are type 1 given the fact that type 1 is said to be genetically influenced and your daughter has been diagnosed with type 1.

 

[urbanracer]

You’re suffering from a lot of misconceptions. I used to be overweight and I have been diagnosed with type 1 diabetes.

Aside from that, it really doesn’t matter if you’re type 1 or 2. The disease is the same but a different pathogenesis is present.

Unfortunately it does seem there’s a high probability you are type 1 given the fact that type 1 is said to be genetically influenced and your daughter has been diagnosed with type 1.

Genetic influences increase risk with both types of diabetes.
https://www.diabetes.co.uk/diabetes-and-genetics.html

 

[TypeZero.]

Genetic influences increase risk with both types of diabetes.
https://www.diabetes.co.uk/diabetes-and-genetics.html

Correct me if I’m wrong...

T2 is mostly lifestyle-based whereas T1 is most definitely genetic.

 

[Andydragon]

Correct me if I’m wrong...

T2 is mostly lifestyle-based whereas T1 is most definitely genetic.

T2 has genetic aspects too
My father, his father both T2
Lifestyle obviously has impacted too

 

[TypeZero.]

T2 has genetic aspects too
My father, his father both T2
Lifestyle obviously has impacted too

Yes I 100% agree with you but I thought the most accepted theory among the scientific community is T2 is mostly lifestyle based with some genetic aspects whereas T1 is genetic with some unknown environmental triggers

 

[urbanracer]

Correct me if I’m wrong...

T2 is mostly lifestyle-based whereas T1 is most definitely genetic.

I am a T1. Nobody else in my family has T1 so where's the "definite" genetic link?

The information may vary from one website to another but if you read the information page that I linked to (above) the genetic risk is higher for T2 than for T1.

 

[EllieM]

T2 is mostly lifestyle-based whereas T1 is most definitely genetic.

T2 is extremely genetic, in that an inability to process excess carbs runs heavily in families. The only lifestyle factor is that insulin resistance can be reduced by reducing carbs to much less than is regarded normal in our society, and also (to a lesser extent) by exercise. So T2 can be avoided by reducing carbs, just as someone with coeliacs disease can preserve their body by avoiding gluten.

T1 has a genetic factor, in that some genes seem to make you more likely to get it (last time I looked you were much more likely to get T1 if you had a close family member with it, but it was still extremely unlikely, much less likely than T2 if you have a family member with T2). But there also often seems to need to be some sort of a trigger (stress, a virus, a severe injury, no one really knows, though I wouldn't be surprised if a lot more T1s are diagnosed after having COVID19).

I had a T1 mother (who got it with no family history), have a T2 father and definitely have some insulin resistance (more than when I was younger). My husband's parents were both T2 so a lowish carb diet suits us both. Two of his 3 sisters are already prediabetic (T2). T2 wise, my kids are at extremely high risk, much much higher than their T1 risk....

My argument would be not to worry if you have a T1 relative (there's nothing you can do about the risk and though it's higher than normal it's still low). If you have T2 in your family, watch your waistline even if you aren't willing to watch your carbs. Once it starts to go up you are probably heading into T2 territory, as that is a symptom of T2. On the other hand, if you are aware of the risks, you can reduce your carbs before you get full blown T2....