Were you wrongly diagnosed?

[Andy-Sev]

At the moment I am in diabetic limbo waiting further tests (pushing for a c-peptide) with the specialist suspecting that I am type 1 but various nurses and my GP suggesting I am most likely type 2 and it got me wondering. How may people who have been diagnosed as type 2 have gone on to discover that they were in fact type 1 or one of the other variants? And how did it make you feel to discover you were wrongly diagnosed?

 

[Lamont D]

Yes I was diagnosed prediabetic in 2001, then in 2009, T2!
I was neither and not diabetic at all!

At the time of correct diagnosis, I was in hypo hell.
So, at first I was relieved, then elated as I started to feel well again, then anger and finally grateful. The realisation that it was a mistake easily made because of the blood tests showed diabetes, it was my consultant that recognised the horrid long list of symptoms. He put it altogether and he probably saved my sanity and my life.
It was this forum that gave me the inspiration and knowledge on how to treat and control my condition. I will be eternally grateful.

The full story is in my first blog called 's reactionary'.

 

[Daibell]

I was and still am listed as T2 despite being slim at diagnosis and never been overweight in my life. I had even lost weight just prior to diagnosis and had very high blood sugar. Tablets stopped working after a few years and only the low-carb diet kept my sugar out of the 20s. I had my c-peptide and GAD done privately. The ignorance about Late onset T1 appals me but it's typical of NHS arrogance/ignorance. I was finally 'allowed' to have insulin which was a life changer. I am annoyed about my wrong diagnosis but with NHS diabetes teaching so narrow, rigid and out of date you can't always blame the GPs/nurses.

 

[LucySW]

Look on the Type 1.5 forum, Andy. Lots of people. I was too, but here in DK, or at least in Aarhus, they routinely run a GAD test to check, so they picked me up after two weeks. It's new for them. Institutionally they haven't adjusted for it yet. Just make sure you push for yourself.

 

[fairylights]

Despite being very overweight at diagnosis, because I had BGL 30 + and ketones my GP immediately referred me to diabetes unit at nearest hospital where they treated me as type 1 (although suspecting I may be type 2) whilst waiting for gad and c-peptide results which confirmed I was type 1.

 

[jane12]

At the moment I am in diabetic limbo waiting further tests (pushing for a c-peptide) with the specialist suspecting that I am type 1 but various nurses and my GP suggesting I am most likely type 2 and it got me wondering. How may people who have been diagnosed as type 2 have gone on to discover that they were in fact type 1 or one of the other variants? And how did it make you feel to discover you were wrongly diagnosed?

I was diagnosed with type 2 a year ago because of my age (47 ) at the time. 2 weeks later after being hours away from death with DKA I was diagnosed correctly, but only after my second hospital visit in two days. I was glad it was diagnosed as I received the correct treatment. I was just relieved to get a correct diagnosis as I felt so ill.

 

[Chester'smum]

At the moment I am in diabetic limbo waiting further tests (pushing for a c-peptide) with the specialist suspecting that I am type 1 but various nurses and my GP suggesting I am most likely type 2 and it got me wondering. How may people who have been diagnosed as type 2 have gone on to discover that they were in fact type 1 or one of the other variants? And how did it make you feel to discover you were wrongly diagnosed?

This is an interesting thread. In 1999 I was diagnosed as Type 1. Following a recent diabetes review with the specialist nurse she wrote to my GP (copied to me) and stated I was Type 2. When I questioned this she made further inquiries of medical records - this took time as the earlier ones weren't computerized. Apparently 4 years after initial diagnosis the consultant wrote to my GP stating that I was Type 2. This was news to me as I was never told this at the time.

Another interesting snippet is that somewhere in my notes it states that I was training for a marathon - anyone who knows me knows that I don't run (and if they see me running they better run too as something bad is happening). The response fdrom the nurse? "It says it in your notes".

In a nutshell the treatment plan she is following is for T2. I've been on insulin since the day of diagnosis. I'm also on tablets - which I was put on a few months after diagnosis. One tablet I'm on however is not suitable for someone with T1. The nurse is insistent that I'm T2.

Other than asking for sight of all my medical records I'm not sure what else I can do.

 

[donnellysdogs]

This is an interesting thread. In 1999 I was diagnosed as Type 1. Following a recent diabetes review with the specialist nurse she wrote to my GP (copied to me) and stated I was Type 2. When I questioned this she made further inquiries of medical records - this took time as the earlier ones weren't computerized. Apparently 4 years after initial diagnosis the consultant wrote to my GP stating that I was Type 2. This was news to me as I was never told this at the time.

Another interesting snippet is that somewhere in my notes it states that I was training for a marathon - anyone who knows me knows that I don't run (and if they see me running they better run too as something bad is happening). The response fdrom the nurse? "It says it in your notes".

In a nutshell the treatment plan she is following is for T2. I've been on insulin since the day of diagnosis. I'm also on tablets - which I was put on a few months after diagnosis. One tablet I'm on however is not suitable for someone with T1. The nurse is insistent that I'm T2.

Other than asking for sight of all my medical records I'm not sure what else I can do.

I signed a form at my GP asking to see my records.
They are allowed to review them first and then you sit with someone to review them.

This involved my GP Office Manager trawling through 100's of consultant letters etc and seeing they had been correctly noted. The Office Manager got back to 2003 and found an item missed off and that I hadn't been informed about. I did not need to then review my notes or ask for the rest of my history to be checked as the information they provided was the cause of 20 + years of pain.

It is well worth asking for a review of your records if you have any doubts or queries.

I did not have to pay for this.

 

[Chester'smum]

I signed a form at my GP asking to see my records.
They are allowed to review them first and then you sit with someone to review them.

This involved my GP Office Manager trawling through 100's of consultant letters etc and seeing they had been correctly noted. The Office Manager got back to 2003 and found an item missed off and that I hadn't been informed about. I did not need to then review my notes or ask for the rest of my history to be checked as the information they provided was the cause of 20 + years of pain.

It is well worth asking for a review of your records if you have any doubts or queries.

I did not have to pay for this.

Thank you. This certainly sounds like the way forward.

 

[Hope_1421]

I was misdiagnosed with type 2 at the age of 8, and it turns out, 6 years later, that I'm actually a type 1 and have been for the last 6 years