Misdiagnosis??

[PhilT79]

Hello

I am hoping I can get some help and I am not unique in this one.

In Feb 2016 I visited my GP after a few weeks of extreme thirst and the subsequent up all night toilet trips. She tested my blood and it was 28 mmol and then my keytones that were also very high and sent me straight to the hospital that evening. In the hospital they gave me various blood tests including blood gases (the painful one from a artery) After these tests that night i was diagnosed with type 1 diabetes and hyperthyriodism. I was sent home with a blood tester, insulin pen and lantus and thyroxine. In the coming weeks and months i visited the hospital regularly and sorted my doses of novorapid and lantus out and got myself in a routine. I did all i was advised to do ie contact DLVA and insurance etc etc. I also changed my diet as the scare had pointed out to me I probably wasnt eating as healthy as i could and heart attack etc is more likely now.

Anyway by August I noticed that almost any injection of insulin was sending my Hypo and by sept i had completely stopped insulin intake. I googled this and read a lot of helpful threads on this forum and decided i was in the honeymoon period. 2 visits to the diabetic nurse they were quite happy this is what is going on. Only in dec when i went to a planned consultant visit did he point out that honeymoon period does not mean no insulin but normally reduced insulin. He then asked me 2 questions: 1 "How did you decide you have type1!" to which i replied this hospital told me i had it and secondly "have you had a gads blood test?" my reply no what is one and are you not looking at all my bloods on the screen in front of you! Anyway he sent me for one that day.

It took 6 weeks to get the results and that was today. They came back negative and i was told I don't have type 1. On this i had many questions ie what did i have, what do i do to revert the dvla etc etc, what do i do next. To this she replied i will write to your gp and they will be in touch. She did say my HB1aC is 49 and normal is 48 or below but to be honest it was the 17th dec they took the blood i was enjoying the christmas run up in what i thought was the honeymoon period ie hand me the chocolate!

Has this happened to anyone else? What do i do with the DVLA etc?

 

[Bluetit1802]

Blimey! I can't answer your questions as I am T2 and not on any medication.

All I can say is that when you were sent to hospital in Feb 2016 your blood sugars were very high (which was causing your thirst symptoms and toilet trips) and you had high ketones (apparently) which can come from high blood glucose. They should have done a GAD test and c-peptide test to determine whether you were T1 or T2. It would seem odd to me if they didn't do these, but who knows what happens. It should be on your records somewhere. I don't know what an arterial blood gas test is I'm afraid.

I am sure misdiagnosis happens a lot. It certainly does the other way round (diagnosed T2 and turn out to be T1 or late onset T1)
I hope some more clued up people will come to your aid.

By the way, as the HbA1c is a sort of average over the previous 2 to 3 months, what you did in the few days beforehand won't have had much effect, if any. Well done on that result!

 

[Lamont D]

Hi, and welcome to the forum.

There have been many such stories of misdiagnosis and those who were diagnosed with diabetes of the wrong type, to the likes of myself when diagnosed with T2, after prediabetes, and I was after a long battle to get a proper diagnosis of a rare condition.

The reason behind the many misdiagnosis is because we seem to have all different symptoms and our blood glucose levels are taken as the diagnostic tool to determine which type!
GPs and some endocrinologists haven't a clue about metabolic conditions and the tests to distinguish the differing types are not used, because of cost or not available!

I would question and battle, demanding a proper bank of tests including GAD and c-peptide. Until you do get satisfaction and a proper diagnosis!

 

[Johnjoe13]

You can try the below which my nephew used when he had issues around his license and changes to epilepsy, I've just googled it but this is where we initially went from what I remember and the person on the phone was very helpful.

The DVLA customer service contact number: 0844 453 0118

 

[azure]

@PhilT79 There are members here with late-onset Type 1 who have been able to avoid/come off insulin for a while.

I can't comment on your GAD tests but hopefully someone will be along with information soon.

 

[PhilT79]

Thank you everyone. The hospital are writing to the goals so when I can get an appointment I will discuss it all with them

 

[catapillar]

A GAD test is only a definitive diagnostic tool if it is positive. A positive GAD test means you are definitely type 1. A negative GAD test doesn't mean you definitely don't have type 1, about 25% of type 1 diabetics are not GAD positive.

It is standard and usual to make a diagnosis of the type of diabetes (1/2) based upon clinical presentation because there are limited tests available to give a definitive diagnosis. Antibody tests are only definitive if positive, they could be negative and you could still be type 1. Cpeptide tests only tell you if you are producing your own insulin, honeymooning type 1 diabetics will be producing insulin. Advanced type 2 diabetics will not be producing insulin.

GAD tests, I think, are only analysed by a limited number of labs, hence your long wait for the results.

Could you have waited 6 weeks for the gad results when you were first in hospital with blood sugar of 28 and high ketones? Or do you think you just needed insulin for that brief period whatever type of diabetic you were? The presence of ketones on diagnosis is a pretty reasonable push towards an assumption of type 1, especially if diabetes symptoms are reported to be sudden onset.

There are plenty of LADA or type 1.5 diabetics who do have a particularly strong honeymoon period where they are able to come off insulin for a little while.

 

[PhilT79]

I have not had to use insulin now for almost 6 months and to be honest my diet had worsened a little. What I want to find out now from the docs is if they have any ideas what was wrong with me when I first why in last year as all tests I have had now say I don't have either type 1 or 2.

 

[catapillar]

I have not had to use insulin now for almost 6 months and to be honest my diet had worsened a little. What I want to find out now from the docs is if they have any ideas what was wrong with me when I first why in last year as all tests I have had now say I don't have either type 1 or 2.

Doesn't a hba1c of 49 say you have diabetes?

 

[Lamont D]

Doesn't a hba1c of 49 say you have diabetes?

My misdiagnosis had a high hba1c level, and a high finger prick test of nearly thirty mmols on both tests at my surgery!
So it does if a definitive diagnosis but not if it's not!
High hyperinsulinaemia and high insulin resistance with high glucose levels will always skew diagnosis!

 

[ankulakp]

It is great to known your test were negative and off the insulin and leaving normal life. Just want to check with you did test includes insulin antibodies test also with gad