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Help! Been diagnosed as a type 1 for 10 years but now they think I'm a type 2?!

lcarter

lcarter

Well-Known Member
Messages
513
Location
Nottingham
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
My pancreas
Okay.

Breathe.

So my DN called me today to tell me following a blood c peptide test and a urine c peptide test along with other urine test, it shows I'm producing a good level of insulin. It shows I'm insulin resistant more than anything he thinks. He has recommended I do a 24 hour urine test and start taking metformin.

Has this ever happened to anyone?! I have been a type one for 11 years.
 
Well there is a major difference in type 1 and type 2. Type 1 means no insulin is made by the body, and type 2 is where you are resistant to the insulin that your body makes. Its hard to believe that you have been misdiagnosed for so long. I would think about a second opinion. Do you take insulin now?
 
What a shock for you.

I would take a few days to just breathe and get my head around it. Its really going to change things for you, but you won’t get a proper grip on it for ages.
 
Agreeing with Brunneria and Trevor here, it's so odd that you have been misdiagnosed! Usually the other way around may be that your beta cells have mutated back or regenerated in some way after being suppressed for a while. But yes address if you have to take insulin still and all my best goes to you as well, this had to be such a shock.
 
That is such a shock for you, how are you feeling about it, as there's a big difference in the two type's, so no more possible Insulin injections? !
 
Wow, what a shock. Must be very difficult to take in after such a long time as a type 1.
 
lcarter said:
Okay.

Breathe.

So my DN called me today to tell me following a blood c peptide test and a urine c peptide test along with other urine test, it shows I'm producing a good level of insulin. It shows I'm insulin resistant more than anything he thinks. He has recommended I do a 24 hour urine test and start taking metformin.

Has this ever happened to anyone?! I have been a type one for 11 years.
Click to expand...
You must be really stressed. What a predicament. But it is good news, in the end?
 
They told me that when I was diagnosed when I was 25 (11 years ago.) I had no sign of any auto immune condition. My result was negative. But because I was presenting high sugar levels of 26mml, weight loss and extreme thirst they went with type 1. My hba1c this time was high, as I am super resistant to insulin. I've had high sugar levels and never presented with ketones. They've then ran c peptide in my bloods and the result was 854, when the result for a type 1 would be under 200. They then tested my urine for a whole host of things, one of the results they were looking for levels of 79.5 or under for type 1 and mine was 3000. I've got to do a 24 hour urine test, but they immediately want me on metformin.

I'm in shock for sure, but annoyed they didn't think to do the c peptide test initially after I had been diagnosed, as they are supposed to do it after three years if they are unsure. I've been struggling for ten years with extremely high levels and then lows, but they just carried on regardless.
 
Robinredbreast said:
That is such a shock for you, how are you feeling about it, as there's a big difference in the two type's, so no more possible Insulin injections? !
Click to expand...
They don't know at this stage, they seem to think I will always still be on insulin now. They believe I'm highly insulin resistant so I need to take this Metformin and then see how my levels are.
 
How would I go about a second opinion? The reason it was noticed was because I saw a different doctor. He then spoke with my doctor who agreed to do the tests to 'purely entertain his ideas as he is a new doctor.' And here we are.
 
lcarter said:
How would I go about a second opinion? The reason it was noticed was because I saw a different doctor. He then spoke with my doctor who agreed to do the tests to 'purely entertain his ideas as he is a new doctor.' And here we are.
Click to expand...

Within the NHS, if you are unhappy, you are entitled to a second opinion. That second opinion doesn't have to be from within the same practise, or endo department/hospital, or whatever. You can ask to be referred outside of your usual area.

In your shoes, I'd be doing some reading into these sorts of anomolies (although I accept there may not be oddles out there), and taking a view of whom my personal "trusted expert" might be.

It was my GP who told me all these things, when I had seen an Endo whose laissez faire attitude made me want to harm him. (OK, I'm not a violent person in any shape or form, but I was pretty, jolly hacked off with him). I did a bit of reading, she made the referral and off I went to someone much more interested, although I still, at that point, didn't get a diagnosis. (it wasn't diabetes related).

Maybe spend a bit of time over the weekend having a ponder. As you are probably aware, Metformin is widely used to help ease insulin resistance in both T1s, and T2s. It seems to work very well for some T1s, although I imagine on starting it you'll want to be doing lots of testing, just in case you start to see surprising results.

Metformin is a drug that works best in a therapeutic dose, it it can take several days to start showing an impact if it's going to.

A second opinion may not change the ultimate diagnosis, but at least you will be reassured, whichever way it goes, that it's had more than one pair of eyes and one lot of grey cells coming to those conclusions. Trust in the message is very important in terms of accepting change and disruption.

Where are you in the UK?
 
Goodness, you must be angry, shocked and a bit pleased all at the same time. It's 'almost' negligent that your usual doctor didn't run these tests before - are you going to make a complaint as you have been injecting all these years when you could have given dietary control a go?

I am a Type 2 with strong insulin resistance who used to inject a lot of MDI insulin (Lantus and Novorapid) but I did manage to move from being insulin dependant to being very low carb diet controlled. It's not for everyone but this post is really just to say that it's something that is possible.
 
lcarter said:
They told me that when I was diagnosed when I was 25 (11 years ago.) I had no sign of any auto immune condition. My result was negative. But because I was presenting high sugar levels of 26mml, weight loss and extreme thirst they went with type 1. My hba1c this time was high, as I am super resistant to insulin. I've had high sugar levels and never presented with ketones. They've then ran c peptide in my bloods and the result was 854, when the result for a type 1 would be under 200. They then tested my urine for a whole host of things, one of the results they were looking for levels of 79.5 or under for type 1 and mine was 3000. I've got to do a 24 hour urine test, but they immediately want me on metformin.

I'm in shock for sure, but annoyed they didn't think to do the c peptide test initially after I had been diagnosed, as they are supposed to do it after three years if they are unsure. I've been struggling for ten years with extremely high levels and then lows, but they just carried on regardless.
Click to expand...

Hello there, lcarter. I was doing some digging into c-peptide for something else, but found this web page, which looks very useful - even if only for the little table with the implcations of c-peptide test results: https://www.exeterlaboratory.com/test/c-peptide-plasma/

The table in question is here: upload_2019-5-25_17-40-30.png

Apparently, Exeter does lots of testing for ther areas, as well as their local region.

Of course, it doesn't change anything for you, but sometimes it's just good to see the explanations for yourself.
 
Consider this to be good news, if your body is constantly making a reasonable level of inslin it is possible that you using a combination of very low carb, metformin and maybe other drugs you could stop inslin. This is clearly a risk of DKA without close self monitoring if your inslin production is not consistent and some of the less common types of diabetes can result in someone makes little inslin on some days but a reasonable amount on others.

Personally if I was you I would be asking to see a consultant who has experience with people that have been misdiagnosis for a 2nd opinion.
 
ringi said:
Consider this to be good news, if your body is constantly making a reasonable level of inslin it is possible that you using a combination of very low carb, metformin and maybe other drugs you could stop inslin. This is clearly a risk of DKA without close self monitoring if your inslin production is not consistent and some of the less common types of diabetes can result in someone makes little inslin on some days but a reasonable amount on others.

Personally if I was you I would be asking to see a consultant who has experience with people that have been misdiagnosis for a 2nd opinion.
Click to expand...

But take care , be aware that low carb can be dangerous when also using insulin or /and insulin affecting drugs but if you learn to control carbs versus insulin ratio you might learn to go low carb slowly and gain control over you insulin resistance .. be patient
 
Hi can I join your club I was told type 2 lada then type 1 now after c peptide back to type 2 fed up now
 
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