• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Diagnosis was made later in life.T1D

Gleny

Active Member
Messages
31
Hi there
I had the symptoms for some months which like a lot of people ignored the symptoms at first Typical bloke I suppose.But the symptoms got worse .There were some very unpleasant side effect not just the unquenchable thirst and needed to pee all the time.i had boils on my face and and thrush. which become very unpleasant.i lost around 20 pounds my eyes went bleary.Diagnosed last month ( May ) my glucose level was ballistic.So high I didn’t ask my GP how high when he rang me !.
I took Metformin at first which curtailed the thirst straight away. Yet didn’t reduce my blood glucose level very much.My level was 18-20 when my Diabetic health care nurse Tested my G/L.I'm now in injecting insulin & checking my G/L twice daily with NovoMix 30 flex pen.My blood glucose level has been as low as 6.2 mmol/L.
The pluse side is I have got my glucose level under control and all the horrible side effects have largely disappeared.Which in my mind were far worse than injecting insulin.
Glenn.
 
Last edited:
It’s a relief, isn’t it, @Gleny, to finally be given the magic insulin. Very pleased you feel so much better.
 
Gleny said:
Many thanks for your kind words
Glenn
Click to expand...

Hi Glenn and welcome. I notice they put you on Metformin at first, did they assume you were type 2 at that time and how long were you on it for? This happens so often, they assume people are type 2 because of things like age etc, and they turn out to be type 1. How did the type 1 diagnosis finally come about? x
 

Yes I think your assumption is correct my GP recommend Metformin as he assumed I was T2D when I was diagnosed.it stopped my thirst yet my B/Sugars was still very high.The Diabetic Specialist nurse who I had an appointment with ten days later.Saw how high my B/S was still 18- 20 put me on insulin straight away. yet I still take the Metformin I’m not sure why.i I’m T1D .could this Metformin be overrated lol ? It doesn’t seems to make little difference to my B/S levels
Glenn
 
Last edited:

Hi Glenn, do you know whether they did any specific tests for type 1?, ie a C Peptide test and an antibody test? I know they put you on insulin but that doesn't always mean you are 'type 1', many type 2s go onto insulin at first if their levels are very high. It matters because type 1 is an autoimmune disease that is different from type 2. I would ask next time you're at the Drs as most type 2s will say that adding exogenous insulin to a type 2 body where (usually) they are producing normal or high levels can be detrimental. I was a few years younger than you and because of my presentation (slim basically) they said 'probably type 2' but did those extra tests and hey presto, type 1. x
 

I requested a blood test for Diabetes due to the symptoms.this was analysed in a local hospital it came back as positive for Diabetes.I'm not familiar with the test you talk about they use words like D1 which means nothing to me.i have to go back in three months for another B/T I'm sorry I know nothing about antibiotic test I wasn’t told ! I have been using Insulin twice a day since since early May it has taken this long to bring my B/S levels down.i know they are very different as children get Type 1 Theresa May was diagnosed later in life she went from a 2D to a T1 so it does happen.The specialist nurse I see is very experienced I would think that she knows her stuff .I lost nearly two sone before I was diagnosed.
Glenn
 

Hi Glenn, it's great to see you doing so well! They used to think type 1 always came on in childhood but well over 50% are adults! It's good when you have an experienced Nurse too. x
 

Hi Glenn, by exogenous I just mean injected insulin, ie NOT what your body is producing itself. x
 
Okay thanks for that info this is all new to me.Although I have done quite a lot of research online it is rather complex.i suppose if my glucose level don’t stay low I will have keep using insulin I am 13 sone and on a very strict diet I also take Metformin Which doesn’t appear to make any difference to my blood glucose level.
Many thanks for your input
Glenn
 
It sounds like T1 or LADA (adult onset T1). But it could be T2, in which case different treatment would work. If it is T1, Metformin doesn't help and you can stop it. The only way to tell the difference is with an antibody test. It tests for antibodies the immune system creates when it attacks insulin producing beta cells in the pancreas. Sounds like your diabetes nurse is onto it, but tests are only ordered if the diagnosis needs to be confirmed. If you test positive for the antibodies you are definitely T1 and will need insulin for the rest of your life. If you test negative for antibodies you are most likely T2 and other therapy, including Metformin, may be effective.
 
MarkMunday said:
The only way to tell the difference is with an antibody test. It tests for antibodies the immune system creates when it attacks insulin producing beta cells in the pancreas.
Click to expand...

Quite a few T1s come up negative on the standard antibody test (google say 25%), I'd argue that c-peptide, which measures the insulin produced by the patient, is as important. T2s, at least for the first few years, will have high c-peptide, T1s will have ever diminishing levels.
 
Gleny said:
I also take Metformin Which doesn’t appear to make any difference to my blood glucose level.
Click to expand...
Metformin is a pretty benign drug (as long as your stomach can tolerate it) which does not have much affect on blood sugars, but can help many borderline T2s. It's not normal for new T1s to be on it, so that's another reason to check with your team as to which form of diabetes you have. If it's T2 there's a good chance that reducing the carbs in your diet will allow you to come off medication altogether, but you'll need to talk to your team before doing this as insulin injections may then make you go hypo (low blood sugar).
 
A panel 5 antibodies should be tested for at diagnosis. Of T1s, 80% are positive for ICA, 50% for IAA, 70% for GADA, 60% IA-A2 and up to 80% for ZNT8A at diagnosis. Over 98% of T1s will be positive for one or more of these antibodies at diagnosis.

The level of these antibodies declines with time, though. Having had T1 for 42 years, I would probably test negative for all the antibodies. So yes, a lot of T1s will not test positive for them.

c-peptide reflects insulin production and does not show if beta cells are being destroyed. Someone in their honeymoon can still have significant c-peptide. Enough to make the test not very meaningful. Because there are so many excess beta cells to start with, antibodies rise years or even decades before blood glucose starts rising.
 
Hi there
Metformin doesn’t reduce my B/G level it doesn’t effect my stomach. The only thing it did was reduce my thirst.i have Been reading about LADA which I knew nothing about. I have Been injecting insulin for a month my B/G has reduced very slowly.as I have increased the insulin slowly The lowest it has dropped to is 6.5 .I will ask the nurse for clarity.as she is a Diabetes specialist
Many thanks very helpful input Which I appreciate
Glenn
 
Okay, so sometimes they put you on insulin to lower your blood glucose levels just because they are so high, but using insulin that has nothing to do with either being a type 1/LADA or a type 2.

The first test to see if you are a type 1/LADA is an antibody test. Type 1 is an autoimmune disease that means your own body attacks your beta cells that make insulin. Age doesn't mean anything as 50% of type 1's, (what the used to be called juvenile diabetes) are actually over the age of 30 when diagnosed. The antibody tests tell you whether your body is destroying the cells. A few very rare cases people don't have the antibodies but still don't make insulin.

The next test is a c-peptide test. This will tell how much insulin you are making. A type 1 will test at a low normal level or a low level and keep decreasing over time. A type 2 will test at a high normal or high level because they are making enough insulin or even more than a "normal" person they just can't use it properly, they are actually insulin resistant.

The treatment will be different in the long run, commonly Meformin is prescribed because it helps block the liver from making it's own blood glucose, to try to help stop excess blood glucose. It also seems to maybe play a part in making you more insulin sensitive. Type 2's are more likely to take it although a few type 1's do too.

As a type 1/LADA especially when you get it as an adult you still make insulin for a while until it slowly stops, that can actually take a few years to complete and it also is one of the causes that so many type 1's are misdiagnosed at first as a type 2. Type 1's have to have insulin all their life to survive.

A type 2 might use insulin to help control blood sugars if they run high, but a diet change and/or medications a lot of the time can end up controlling blood sugar levels in the long run.

They don't always test you at the beginning for antibodies or c peptide unless they are suspicious it is type 1. A lot of the time they just treat what is going on (high blood sugar) and see how you do.

I always tell people to keep in mind that if you do everything right and your blood sugars keep climbing that you could be a type 1. We are misdiagnosed often.
 
Hi. Do check what type the GP has recorded and if it isn't T1 then ask for the two tests as discussed in the others posts. Metformin never does much but has some other benefits so some are left on it like me even when on insulin. Your nurse seems to be doing the right things and starting insulin early is good. I'm assuming you aren't overweight? If you are then T2 remains a possibility and the insulin would need to be reduced as weight reduces. BTW NICE says all T1s should be started on the Basal/Bolus insulin regime with two different insulins and 4 to5 injections per day. It provides much better control and flexibility than twice-a-day mixed insulin. At this early stage, mixed may be fine but be prepared to ask for Basal/Bolus if control becomes difficult as you move thru the 'honeymoon' period.
 
 

Hi Mark, I was also told by my Consultant (around diagnosis) that doing a C Peptide test AFTER you've started exogenous insulin is less useful as your body won't have had to produce what may be left of it's own insulin (or as much of it as it usually would have). He did say that it was an important test to do in any case as it contributes to all the other factors that may help them determine type. x
 
Hi there Marie
I have read Your message with interest which is written In a clear and precise way.i had an initial blood which confirmed That I have Diabetes.i assumed it was T2 because of my age.i was given Metformin by my Doctor who is not a Diabetes specialist.
The Diabetes specialist nurse put me straight on insulin through a NovoMix pen this was five weeks ago.My B/G level has reduced from 18 mmol/L to low of 6.0mml/L.
I know nothing and have not been informed about the antibody and the other test you mentioned they don’t give you much information here in the UK so Metformin could be beneficial to me from what you say.I would not say I am over weight as I am 13 stone you can convert that to pounds,I have put myself on a strict low carb diet mostly fruit and vegetables.I have one positive thing to say although it looks very much like I am T1 I do feel much better and some of the very unpleasant side effects of Diabetes have gone.
Kind regards
Glenn
 
Last edited:
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…