Type 1 or 2

[SamSpice]

I am a newbie here but was diagnosed 23 years ago with T1D at the age of 25. I was immediately told that I was Type 1 and immediately started insulin.

On a telephone review this week with a new consultation he told me that he had spent time looking back on my records and when I was diagnosed I was not checked for the Type 1 anti-bodies or C-Petide test to confirm that I was Type 1.

He said that he is skeptical that I even have Type 1 even though I have been treated as one for so many years.

He said my treatment may have been very different if I am only type 2.

Has anyone else come across this?

I am currently waiting for a blood test to confirm this.

 

[Bruce Stephens]

Has anyone else come across this?

People more often (much more often) report things going the other way (they're diagnosed Type 2 but eventually (when treating it as Type 2 fails) they find they were really Type 1).

At 25 you were a bit young for the typical presentation of Type 2, and if you were also not fat (and/or relatively fit and healthy looking) I can imagine doctors assuming you were Type 1 without testing. There's more of a realisation that people can have Type 2 without being overweight, I guess.

 

[gll]

https://www.exeter.ac.uk/news/featurednews/title_707155_en.html

Professor Mark Strachan, from Western General Hospital, Edinburgh, said: “We have now measured C-peptide in over 750 people with a clinician-diagnosis of Type 1 diabetes, attending our clinic at the Westen General Hospital. So far, we have made a new diagnosis of genetic diabetes in eight people, and changed the diagnosis to Type 2 diabetes in 28 other people. This has allowed us to make changes to treatment in many of these individuals and in 12 people we have actually been able to stop insulin therapy.”

From 2019 and you probs found a consultant hell bent on testing everyone they meet that hasn't been previously tested

 

[rebrascora]

https://www.exeter.ac.uk/news/featurednews/title_707155_en.html



From 2019 and you probs found a consultant hell bent on testing everyone they meet that hasn't been previously tested

I find it really hard to understand how people are taking insulin unnecessarily for decades and not being permanently hypo or piling on weight because they are having to eat extra to prevent hypos, in which case, why hasn't it been picked up sooner?
I hate to be cynical but I do wonder if some of this comes down to a consultant who is trying to save money or with a theory to prove and a name to make for himself. Having said that if they have 12 patients off insulin and still surviving then he clearly has identified an issue.

 

[rebrascora]

I am a newbie here but was diagnosed 23 years ago with T1D at the age of 25. I was immediately told that I was Type 1 and immediately started insulin.

On a telephone review this week with a new consultation he told me that he had spent time looking back on my records and when I was diagnosed I was not checked for the Type 1 anti-bodies or C-Petide test to confirm that I was Type 1.

He said that he is skeptical that I even have Type 1 even though I have been treated as one for so many years.

He said my treatment may have been very different if I am only type 2.

Has anyone else come across this?

I am currently waiting for a blood test to confirm this.

Hi and welcome to the forum.

Sorry to hear that you suddenly have this uncertainty hanging over you after so long. I hope they are doing both C-peptide and GAD antibody tests although whether you will have many/any GAD antibodies so long after diagnosis, I am not sure. The antibody test usually takes about 6 weeks for the result to come back but the C-pep is about 2 weeks I think, so hopefully you won't have to wait too long.
Have you put on weight over the years and do you need quite large doses of insulin? Just wondering if there are indications of insulin resistance which might suggest a mis diagnosis?

Can you remember how your original diagnosis came about? Did you end up ill in hospital with DKA or was it identified in a routine blood test or perhaps something in between?

I was one of those that went the other way.... Assumed Type 2 but turned out to be Type 1.

 

[Bruce Stephens]

I find it really hard to understand how people are taking insulin unnecessarily for decades and not being permanently hypo or piling on weight because they are having to eat extra to prevent hypos, in which case, why hasn't it been picked up sooner?

I think that part's straightforward enough: if someone with Type 2 diabetes (or without diabetes at all) takes insulin their pancreas just won't produce as much. So long as they don't take too much insulin everything will be OK. And occasional hypos won't be regarded as problematic because people taking insulin generally get occasional hypos (similarly for eating to prevent them).

 

[rebrascora]

I am sure that there was some work done in America where very longstanding diabetics with 50+ years of Type 1 were still found to be producing insulin but just not sufficient. I am sure I have read posts about it by @trophywench. I wonder if the early intro of insulin enables some beta cells to be preserved but that they may be prone to further attack down the line..... or they may not. Like maybe some people have a very long honeymoon period and others, all their beta cells are killed off quite quickly and perhaps those with surviving beta cells can regenerate a bit and maybe this is what this professor is picking up rather than them being misdiagnosed in the first place. We also know that the beta cells can get a new lease of life after insulin is introduced and there are Type 1s on the forum who started on insulin and then had to reduce it right down to almost nothing because they suddenly didn't need it anymore. Mine was a slow and steady pregression upwards as I assume my beta cells popped their clogs. My gut feeling is that I don't have any production left now, but it is just a feeling. My C-pep when I was diagnosed was borderline but I was positive for GAD.... but I was following a low carb diet which will have given my beta cells some respite along with the insulin I was injecting also taking the strain off them.

It is quite a fascinating subject..... but not when it creates anxiety and uncertainty for a patient.

 

[Bruce Stephens]

https://www.exeter.ac.uk/news/featurednews/title_707155_en.html



From 2019 and you probs found a consultant hell bent on testing everyone they meet that hasn't been previously tested

Yes, or maybe there are some other indications for looking again at the diagnosis that we're not seeing.

 

[SamSpice]

Thank you for your comments above.

I have put on weight over the years and this is still increasing. For me it is a vicious circle as I take absolutely huge 60 units at least three times a day of Novorapid and then up to 160 units of Tresiba. With this amount of dosage it is extremely hard to lose weight.

I was 'diagnosed' after my vision went bad overnight. I have had one episode of DKA about 15 years ago.

I don't know what to think at the moment and will wait and see what the blood test comes back as.

I am a little scared to be honest x

 

[Bruce Stephens]

I have put on weight over the years and this is still increasing. For me it is a vicious circle as I take absolutely huge 60 units at least three times a day of Novorapid and then up to 160 units of Tresiba. With this amount of dosage it is extremely hard to lose weight.

Those are high doses (probably caused partly by increasing weight). But if you want to lose weight, what stops you from (gradually) eating less and lowering the doses to match? Have you talked this over with your dietician because it does sound like some kind of problematic feedback loop?

 

[gll]

Would it help to talk about some of the fears and implications of a change of diagnosis on here?

I do hope the results come back quickly. When was the bloodtest?

 

[EmmaL76]

Wonder what made your doctor randomly start looking over old notes after all this time, almost like he wanted to question your diagnosis. I’ve heard of others being diagnosis type 1 without antibody test so that isn’t that unusual. I myself have struggled with getting an official diagnosis, I still don’t have one, doctors don’t seem to understand how unsettling that is for me. Please let us know how you get on, if the tests were done recently then you may have a few weeks to wait

 

[Bruce Stephens]

Wonder what made your doctor randomly start looking over old notes after all this time, almost like he wanted to question your diagnosis.

I think it might be that @SamSpice is having this prolonged weight gain with high insulin use, so the doctors are looking again at everything to see if something might explain it.

I imagine they won't be that surprised if the tests come back confirming the Type 1 diagnosis, in which case I'd hope they'd offer help to control weight in the form (initially) of a dietitian, perhaps with more investigation to see if something else might be influencing the weight gain. It's not the case that people taking insulin inevitably gain weight, after all.

 

[rebrascora]

It certainly sounds like you might have some Type 2 diabetes going on but that doesn't necessarily mean you aren't also originally and still Type 1 as well. ie you could have both Type 1 and Type 2 diabetes. The large insulin doses and weight increase would suggest Type 2, but the original diagnosis of Type 1 could be correct. Hopefully the results will be clear, as sometimes that isn't as defined as you might like.
Of course, if you are Type 2 and not Type 1 at all then there is the possibility of reversing it and how fantastic would that be!! Not having to inject every meal and calculate carbs and test before you drive the car and all that other stuff.
Of course, they are not going to suddenly stop your insulin immediately but hopefully they would give you support to improve your diet and lose weight and slowly bring your doses down.... but then they should have been doing that in the first place as I am sure they are well aware your weight has been increasing.... after all they do regularly weigh us!

You clearly need some support with the weight gain, to help reverse that. It is a bit more complicated with insulin usage and that isn't because insulin causes weight gain, but you have to understand how to reduce doses as you reduce food. It does add an extra difficulty to dieting which is already mentally challenging for many people, not least because food and carbs in particular are pushed at us from all directions all the time and are so cheap and readily available. I remember when I first started low carbing how, suddenly, I realised just how many adverts were on TV and magazines and so many shops and restaurants selling huge cookies and cup cakes and even bill boards promoting fast food that I had never even noticed before were tempting me with food that I was trying to resist. I had no idea just how insidious it has become until I was actively fighting against it. Thankfully I am over that now and mostly don't notice it anymore because I am no longer tempted, but there were at least a couple of months when it was incredibly hard work resisting and it was in your face all the time wherever you went.

So whilst I can understand how all this is unsettling and scary, it also opens up the possibility that you may no longer need to be dependent on insulin for the rest of your life and it could be the door to a new slimmer, healthier you. How great would that be.

And of course, we are here to support you either way.

 

[DaveB]

Thank you for your comments above.

I have put on weight over the years and this is still increasing. For me it is a vicious circle as I take absolutely huge 60 units at least three times a day of Novorapid and then up to 160 units of Tresiba. With this amount of dosage it is extremely hard to lose weight.

I was 'diagnosed' after my vision went bad overnight. I have had one episode of DKA about 15 years ago.

I don't know what to think at the moment and will wait and see what the blood test comes back as.

I am a little scared to be honest x

Hi. Insulin itself can't cause weight gain but if you are having too many carbs the insulin helps the body metabolise those carbs and they get stored as fat. It sounds possible you are in a vicious circle due to insulin resistance?