Anyone had an incorrect type 1 diagnosis?

[MissPiggy]

Hello!

I know this is a bit of a hopeful post but it keeps zipping round my head. I'm 32 weeks pregnant and 5 days ago I was diagnosed with type 1 diabetes. We have absolutely no history of diabetes in our family and I've always been fit and healthy. Had a pre-pregnancy bmi of 19.5 and have only put on 7kg so far. I haven't really gotten my head around the diagnosis yet and I can't get my morning blood sugars down for love nor money. But, I just keep wondering if the diagnosis could be wrong. The two results they told me were conclusive for them was one measuring amount of insulin in my system which should be between 350(ish) and 1850(ish) and mine was 180. The second was the antibodies attacking my pancreas which should be between 0 and 10. Mine was 851

I just wondered if anyone had any experience of the diagnoses maaaaaybe being wrong for type 1, perhaps due to pregnancy hormones? Like I said, probably hoping too much but I can't help thinking about it!

Xxxxxx

 

[JConnor]

I was diagnoised Gestational when pregnant then type 1 two months after, i was under impression they dont give full diagnosis till after pregnancy, have you had a hba1c test? to look at average blood sugars for last 3 months?

 

[benedict]

Welcome to the forum MissPiggy

Do you have any reason to doubt the diagnosis except for the lack of a family history of type 1 diabetes?

It is not unusual for type 1 diabetes to occur without having a relative with the condition. High blood sugar, a relatively low BMI, producing insufficient insulin and the presence of the relevant antibodies would be consistent with type 1 diabetes.

Type 1 diabetes is often referred to as 'juvenile diabetes' but that can be a misnomer as a diagnosis of type 1 diabetes is not uncommon in adults.

Best of luck getting your sugar levels under control and we wish you all the best for the latter stages of your pregnancy.

Benedict

 

[MissPiggy]

Hello both!

I've no reason to doubt the diagnosis really, it's just based on the no health issues or family history. I wasn't feeling overwhelmingly tired, drinking more than usual or going to the loo more. They didn't believe me when I said I genuinely never have to go in the middle of the night so I had no symptoms whatsoever.

They told me weeks ago when they said gestational that they wouldn't diagnose type 1 until 6 weeks after bump is born so I wasn't expecting any results but they said that the results were overwhelmingly showing type 1 so they changed me from limiting carbs and a little insulin which wasn't working to insulin with every meal plus the background insulin. I've asked them a few times since about taking me off insulin when baby is born just to see but they just say that I'm type 1 and need to keep on with it and it won't seem so hard once baby is out.

X

 

[JConnor]

I am no expert at all. Our experience sound vary similar tho diagnosed at 28 weeks with Very high sugars (was already on prenatal ward due to dehydration) and was told I was probably type 1 with the results but I would need to wait till after birth, they did do an hb1ac test tho, maybe this is why your team so sure it type 1. I was allowed to come off insulin and at 6 week post GTT only just failed it so everyone thought I was type 2, 2 weeks later sugars rocketed and blood tests showed type 1. Please try and trust your team, you are gonna need there help, talk to them early and try to make compromises.
Good look with things, it is a massive learning curve and a very anxious time.
Jess


Sent from the Diabetes Forum App

 

[hels]

Hi MissPiggy

I am in a similar situation. I am now 36 weeks pregnant and was diagnosed as type 1 at 29 weeks. I thought it was gestational diabetes but from the initial appointment after my GTT was told by the diabetes team they were certain I had type 1. A blood test as confirmed I have GAD antibodies. My insulin will be continued after the birth, there will be some guesswork as to the levels I will need.

I also have under active thyroid which is often associated with diabetes. I had been thirsty but otherwise been feeling fine. My diabetes team have asked if I have been tired but I've been feeling great? I also thought it wouldn't be confirmed until after the baby born.

I'm just concentrating on controlling my blood sugar levels for now for the sake of the baby then will start again with managing it when the baby has been born.

I've been having scans every 2 weeks and am likely to be induced at 38 weeks.

Good luck and take it one step at a time.

 

[Hellbunny]

I was diagnosed with gestational diabetes then 7 weeks after birth type 1, I also have no family history which was a surprise to me x

Sent from the Diabetes Forum App