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Wrongly diagnosed T2 now newly diagnosed T1

T

tankgirl

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4
Hi All,

Just wanted to share that after almost a decade of being labelled a neurotic T2 secret overeater (amongst other things) my GAD antibodies test came back significantly +ve so I have now finally correctly diagnosed as T1 and not the T2 that 5 GP's had labelled me as.

As an aside, I am a healthcare professional who knew the facts and fought my own corner ridiculously hard but without success so I am very grateful that a change of geography put my health into the care of a particularly capable team.

I don't envy anyone in a similar predicament.
 
Hi and welcome. Yes, there is so much ignorance amongst healthcare profs about late onset T1 not helped by DUK (not this site) never talking about it. I'm still labelled as a T2 and as my diabetes expert GP said as I'm not T1 I must be T2 despite never being overweight etc. There are many of us.
 
Hi all I have been t2 for six years. Changed hospitals and cos they didn't Have my records they did all the blood tests again and they listend to my description of onset. It turns out I'm actually t1. Can I sue for wrong diagnosis and screwing my health up
 
jane Schofield said:
Hi all I have been t2 for six years. Changed hospitals and cos they didn't Have my records they did all the blood tests again and they listend to my description of onset. It turns out I'm actually t1. Can I sue for wrong diagnosis and screwing my health up
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Would be hard to prove it.

I would advise writing to the foi officer at the medical centre previously and asking for a full copy of your medical records first.

Hospitals in England have complaints procedures thru PALs but you are also entitled to gain access to a Patient Advocate to help you.

You could also talk to to a non win non fee solicitor.
Personally having had a **** time myself with NHS its not easy and you can spend time thinking about misdiagnosies or you can spend time gaining understanding of new diagnosis...and getting on with life....

Which ever route you decide upon its up to you. I got apologies and new procedures in place to safe guard other T1's and changed hospitals. However, my mental health suffered to be honest. I was happy with results I got but it was horrendous and to be honest I would have been better placed if I had soent my time thinking of my future and my immediate recovery.
 
donnellysdogs said:
Would be hard to prove it.

I would advise writing to the foi officer at the medical centre previously and asking for a full copy of your medical records first.

Hospitals in England have complaints procedures thru PALs but you are also entitled to gain access to a Patient Advocate to help you.

You could also talk to to a non win non fee solicitor.
Personally having had a **** time myself with NHS its not easy and you can spend time thinking about misdiagnosies or you can spend time gaining understanding of new diagnosis...and getting on with life....

Which ever route you decide upon its up to you. I got apologies and new procedures in place to safe guard other T1's and changed hospitals. However, my mental health suffered to be honest. I was happy with results I got but it was horrendous and to be honest I would have been better placed if I had soent my time thinking of my future and my immediate recovery.
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Thank you
 
jane Schofield said:
Thank you
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Its a tough call.. Anger at others for mistakes in health can be overwhelming...

I hope you can decide what to do. Its a huge, hard decision to make. The day my letter of explanations and apologies and plans came I was able to let go of that anger.. So many people told me to take legal action but I know that is long and drawn out and I have enough money for my needs and didn't want monetary compensation. However, the time spent with that anger did slow down my recovery and mental health wasn't good. I'm not sure though whether I could have let go of my anger without taking the course of complaining... Probably not.. But will never know.

Good luck on adapting to T1 by the way.
 
donnellysdogs said:
Its a tough call.. Anger at others for mistakes in health can be overwhelming...

I hope you can decide what to do. Its a huge, hard decision to make. The day my letter of explanations and apologies and plans came I was able to let go of that anger.. So many people told me to take legal action but I know that is long and drawn out and I have enough money for my needs and didn't want monetary compensation. However, the time spent with that anger did slow down my recovery and mental health wasn't good. I'm not sure though whether I could have let go of my anger without taking the course of complaining... Probably not.. But will never know.

Good luck on adapting to T1 by the way.
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Thank you for your comments will take time to adjust. Been fitted with a pump soon
 
jane Schofield said:
Thank you for your comments will take time to adjust. Been fitted with a pump soon
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A pump will help but grasp a good knowledge of carbs and 2 hourly testing as you will need to be precise... And also happy on being to understand how to change things on a pump long term...

Good luck. I had a pump for 5 years but have no fat and manufacturer tjinks that why I jad probs with cannnulas blocking,

Back on MDI now and much prefer it. I get obsessive with things and glad now that I don't obsess about my pump anymore and make the very most of enjoying every minute of every day instead..

I do still obsess over food and what I eat but thats due to other issues I have.

A pump can certsimly be excellent.
 
Hi, sorry to read about the wrong diagnosis. As a young and relatively slim T2, could you please tell me if there is anything I could do to avoid harming my health, in case I were a late T1 as well? My sugars are ok, and actually I suspect I really have insulin resistance, but I just want to make sure I don't do any harm.
 
Munkki said:
Hi, sorry to read about the wrong diagnosis. As a young and relatively slim T2, could you please tell me if there is anything I could do to avoid harming my health, in case I were a late T1 as well? My sugars are ok, and actually I suspect I really have insulin resistance, but I just want to make sure I don't do any harm.
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Hi my blood sugers we're always very high always in the high teens and twenties that's why they did repeat blood test follows by fasting bloods. If your worrid talk to your health care professional and ask for full bloods doing and then fasting this should tell them what type you are. Hope you are not wrongly diagnosed ☺
 
I think the GAD and c-peptide tests are the key ones in trying to determine what sort of diabetes you have, so if you haven't had those I'm not sure you can be clear what type you are. Have you now been moved onto insulin? Because it is possible to be an insulin dependent type 2. It might be worth asking your treating team for some clarity as to the position.
 
catapillar said:
I think the GAD and c-peptide tests are the key ones in trying to determine what sort of diabetes you have, so if you haven't had those I'm not sure you can be clear what type you are. Have you now been moved onto insulin? Because it is possible to be an insulin dependent type 2. It might be worth asking your treating team for some clarity as to the position.
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I have been on insulin for 5 years more than likely had the GAD but have had so many blood tests over the past few months hard to keep track.
 
sorry to hear of your missdiagnosis. I wish I had been missdiagonosed as I have had it for 50years and suffered with a lot of long term complications and they still will not allow me a pump. you turn up after a mere 5yrs and get one. If I dont get better treatment I am quitting work as cannot cope any more. At least then I will not be paying anything into the NHS.

sorry feeling depressed
 
So you have been on insulin under the old hospital. I would have thought that insulin dependent type 2s and type 1s receive essentially the same treatment. Why do you think that being called a type 2, if you were receiving the insulin you needed, has damaged your health? There are quite a few LADAs / 1.5s who maybe wouldn't go on insulin for a year or more after diagnosis as they have long honeymoons & produce enough insulin themselves to cope without it for a while.

I don't think there can be any confidence as to your type until you have had a GAD test. Even then, the answer is not definitive. Unfortunately trying to clarify what type you are can be a complex combination of tests & clinical history. The GAD tests aren't routinely offered to every type 2, or to every slim type 2, nor are they offered to every type 1.
 
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