Wrongly Diagnosed?

Johnjoe13 said:

I've read of misdiagnosis before and i'm wondering if it's a rare occurrence or it happens quite frequently? I'm thinking there are no statistics available on this as they probably don't want people to know they got it wrong. So my question is, should they be considering doing these GAD & C-Peptide tests as standard together with the HbA1C or is this too expensive? I think it will save people a lot of trouble and anxiety for people in the long run, or at least do them when they do the second test which confirms diabetes? I know they got me back for another HbA1C to make sure

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I doubt it is necessary for everyone to have these tests as routine. Maybe just for those presenting with symptoms or those who don't fit the "type". I was diagnosed T2 on a routine health check. I had zero symptoms. I was fit and well. (or so I thought). My diagnostic tests weren't drastic. I asked my nurse on my first appointment how she knew I was T2. She said because my levels were too low for T1 and if I were T1 they would be higher and I would be feeling quite poorly with diabetic symptoms.

Yes I'm 28 was diagnosed type 2 in august last year. Put on metformin by my GP. Had a savear DKA new years day and found out I was actually type 1 all along! So yes it does happen. I was very unwell.

I was 19 when I was diagnosed and was wrongly diagnosed with type 2 even though I had lost 2 stone in weight and my health was deteriorating. Lucky the diabetes team I was referred to called me in to re-diagnose me as type 1. I agree that type is considered "child" diabetes so I would definitely see your GP about a possible change in medication or new diagnosis.

Sounds like you need to get checked out - I was on meds for about 10 years as a 'type 2' and only when I was diagnosed with Retinopathy in my eyes did the medical team start to take note. They'd seen my annual reviews and HBA1C well above average in that time and my own GP failed to act. It took a part of my body failing to be placed onto insulin. If I didn't take my insulin now I'd be bouncing off the roof at 33.3 on my meter. I don't know how long I was high for, but it was enough to cause me major health problems. Suffice to say I'm now being referred for what's known as an AutoImmune test, which will identify your 'type' as far as I know. There is also (as mentioned by my diabetic nurse "Type 2, slow Type 1" which basically means the pancras has stopped producing any insulin while being insulin resistant due to all the insulin it tried to kick out while being 'insulin resistant'

Just get check and stamp at the Docs or ask for a second opinion within the same practice if need be as a lot of GP's are clueless and once you're over the hill, specialist care is needed to know that the heck to do on a daily basis to manage it.

Regards and hope you're well soon.

I was originally diagnosed in 2003 as a T2, took them nearly a year to reconsider and test and confirm T1, in 2008 I changed health care area and my records were "lost" showing T1 diagnosis, finally only last month (feb 2017) after years of arguing over diagnosis I was retested for gad and confirmed T1 again for the 2nd time (haha) have to laugh. But yes it happens and all because of my age and T2 being predominant in the male side of my family.

JenLou said:

Hello All,

I am wondering if anyone else has had experience with being wrongly diagnosed?

i got diagnosed in April 2016 with type 2 and i can't help but wonder if i have been wrongfully diagnosed. from what my diabetic team have told me Type 2 comes on gradually over time which is correct with what i have also read but before i was diagnosed after having a lumbar puncture - two maybe 3 months before that i had a blood test and nothing shown up to suggest diabetes. From what i have read and been told once again Type 1 comes on suddenly in children and in adults it can take a month or two and i can't help but wonder if i am actually type 1 and not two as none of the medication i have been given to treat type 2 is working. i am on yet another course of medication which isn't working so i want to know if anyone else has ever been wrongfully diagnosed?

thank you

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Hi I have a dr who mentioned to me that type 2 was most common in adults but it can be missed and type one as a massive diagnosis rate in the under 30s apparently as I was told by my GP so we had to cover all bases the way we did it was with gliclazide the only problem as she mentioned was that it could be the honeymoon period where I can still produce a bit of insulin and I was forcing my body to produce a little more it was working so we switched to metformin as it ment I wasn't taking a pill to lower my sugars but I'm still following the rules but I have been running slightly to high but my exercise is on point so it has been dropping it down just be persistent with your GP show your taking note and that you want more info I've only been diagnosed since October and our local GPs are fantastic I have direct email to my GP who isn't my personal GP but one that has an interest in Diabetes and she always says it might sound like a silly question that can be answered with a phone call or an email. But what I have noticed is if your interested and asking questions only you know what's going on in your body my doc says it's far cheaper to keep you healthy than deal with complications and most of the time for me it's bump my cardio up or double check my carb intake. YES FELLOW DIABETICS I have a young modern GP who thinks checking up on carbs helps keep it under control eat loads of fruit and veg just few bread and potatoes and ****. Do eat fresh pasta and rice though.

Be persistent and always see the same GP about your diabetes is what I would recommend I don't see the nurse anymore as she is a bit of a b@&£h so see my doc every 3-4 months good luck my fellow diabetic friend.

azure said:

Don't be afraid of insulin @cireland It's not half as scary as people imagine (and that's speaking as someone with a needle phobia). It can also preserve any beta cells for longer.

Lots of testing is a good idea, along with recording what you eat, as that will provide useful information for your appointment.

Do let us know how your appointment goes If you're looking for a book about Type 1, Think Like A Pancreas is a fantastic one

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@azure

So today, I decided to go private before seeing my NHS doctor on the 21st, since being diagnosed Type 2 then Type 1, on my referral letter it said I was MODY and Type 1 which I thought was odd.

The doctor I saw is a specialist in Endocrinology. After going through all my details it was fair to say he was confused about my case,especially as being diagnosed MODY and Type 1. We spent a good hour going through lots of questions and talking and genuinely seemed interested in finding out what it is that is actually wrong with me, he mentioned that having a high GAD test does not in itself indicate type 1 diabetes, he also mentioned that itappears no C-peptide test was carried out amongst other things. He wants me to stop taking Metformin (I am taking 2x500mg twice a day) on Monday and see him Tuesday Morning for tests as he called it a "full view of your body and pancreas that will create a holistic view"from which a lot will be clearer.

I am going to call the hospital Monday and talk to them about everything he said and mentioned to see what they think (as I am due to see them in the afternoon) but he did mention that for some reason I appear to be a slightly odd case, he is also running some trials at the private hospital with new drugs and experimental medicine which he asked if I would potentially be interested in (if it is MODY or Type1)..

Either way I am probably more confused than ever!

Since my last post I have been playing around with some food items further to see what effect would be on my blood, measured every hour for 4 hours and it's fair to say results surprised me.

Full on pizza and sides (takeway)
5.3 before
5.4 1 hour after,
6.5 2 hour,
7.1 3 hour
6.1 4 hour

Pasta stuffed with Spanish and cheese 400g (yes 400!)
5.1 before
5..4 1 hour after,
5.4 2 hour,
5.1 3 hour
4.7 4 hour

Apple turnover (also with cream) x 2 (21g of sugar in each and about 50g crabs)
5.6 before
6.5 1 hour after,
6.1 2 hour,
5.9 3 hour
5.6 4 hour

Burrito stuffed with rice and beef, and sauce.
6.0 before
6.9 1 hour after,
6.6 2 hour,
6.0 3 hour
5.5 4 hour
Just for interest! - it's further confused me!

I'm no doctor, but those post prandial results simply do not indicate Diabetes in any shape or form to me.

They look perfectly normal.

Fascinating @cireland Those results look normal to me (the food ones).

It will be interesting to hear what the final verdict is. Did the endocrinologist explain about the MODY bit?