Misdiagnosis??

[Kylie_Baker]

Hi everyone,

I've just had my first followup with the consultant after being 'diagnosed' in November '11 as T1. My HbA1c came back at 6.1 It was 13 when I was diagnosed. I've now been discharged from the consultants care back to my GP (!?) armed with advice to raise my HbA1c to around 6.5 and to lower my Lantus to avoid morning hypos.

It was a good appointment as I felt I was armed with more knowledge about my condition. Though have come away feeling very disappointed as the consultant was not 100% that my diagnosis was correct. Rather that there was really no way for anyone to tell what type of diabetes I had and that as I was responding to insulin very well, that I would just need to keep going on this path.

So, a little history. I was 29 at the time and diagnosed with Gestational Diabeties in the 35th week of pregnancy November '10. Big baby came along and everything returned to normal. I then had a miscarriage in June '11 that led to me being severely anaemic and being offered a blood transfusion. 2011 was a very stressful year. August '11 saw the classic signs of diabetes thirst/massive weight loss etc. My GP initially treated me for T2, Metformin then Gliclazide, then after some persuasion I was sent to the DSN who diagnosed me as T1 and to start insulin right away. I asked at this time for further testing but was told that we should look at this once I had stabilised (now I know that was NOT a good idea!).

Today, the consultant has told me that it is too late for a GAD test, and that in my case there is a likely link between the Gestational and T1. He can't be sure if I am T1, but is happy enough for me to carry on under this banner as long as my results stay stable. That's all good and well, but given the risk of long/short term complications etc, I really want to know exactly what I am dealing with here. I was told that misdiagnosis was common and made in about 30% of all diabetic cases. I was also told that I would most certainly need to go onto tablets (statins) in about 10 years. But that FOR NOW everything was fine and that was the main thing.

So my question really is where to do I go from here? Do I just take this as gospel and continue along this path, waiting for the next hiccup? Should I be satisfied with this? Have I missed anything?

Hopefully someone can help me.

Thank you for listening and any help.

Kylie

 

[AMBrennan]

My understanding is that is much more likely for T1/LADA/1.5 to be misdiagnosed as T2 (which is kinda the default diagnosis unless you're in DKA or a child), and that the risks are greater as well since oral medication will stop working, which will result in both higher glucose levels and psychological effects from "failing" to control the condition.

So unless you're very insulin resistant (suggesting T2) I'd believe the T1 diagnosis for now.

 

[Skweek1]

I'm glad I'm not alone - I was gestational diabetic but no problem after baby, who was 5lb 13, but knew that eventually I would almost certainly be diagnosed. Because of family history of T2, when after a nasty fall some 5 years ago, I started getting symptoms and was diagnosed - T2 suspected. A few months after being told to "eat normal healthy diet", I was put on Metformin, which made me really nauseous and was finally referred to a specialist, who was brilliant. I went on the Oxford Plan, was given insulin, which worked well for me and results were good, but my lovely specialist retired and the local Oxford Plan group was moved to a hospital several miles away,so dropped out of the system. Having been really ill with "Honk", I was recently referred to a diabetic nurse and carb counting was advised. Last weekend in hospital, it was suggested that I probably wasn't T2 at all, but T1,so went to my GP, (I've been seeing him for 16 years now,and am concerned that he doesn't know my history) who told me that when I saw my specialist, he could carry out tests to tell me whether I was T1 or T2, and I would be given Insulin. I pointed out that I'd been taking insulin for several years, and he then said "Oh, if you're on insulin you're T1". Couldn't make it up, could you? There is no-one at all in my surgery with even the most basic diabetes knowledge and I'm reluctantly forced to consider changing GP practice,but could the next be as bad? I really want to take control of my condition, but not getting constency yet and could do with support. Any ideas out there? Thanks.