Diabetes misdiagnosis

[sllimc6991]

Hello all,

I am creating this thread as I thought maybe reaching out to the wider community may be able to answer some questions.

I'll apologise in advance if it comes across as a rant and for giving you all half of my life story.

I have been diagnosed as a Type 1 for around 2 months now, but my main question is, can you be completely misdiagnosed as a diabetic, and no I don't mean mistaking Type 1 for 2 or vice versa, but completely rule out being a diabetic?

In terms of my insulin intake, I am taking around 6 units of basil insulin a day, and have been doing so for the last 3 weeks, no doubt it will come across as arrogant, but this has been purely titrated through my own decision, as no one has told me to reduce my doses otherwise, where it would have stood at the original 15 basil and 9 rapid acting, only to give me too low of blood sugars if I carried on this way. My HBA1C is due next month, averaging at least a sub 7% from the original 12.8% just 2 months ago when first diagnosed.

In terms of contact from my nurses, all I have been told is my GAD test came back negative (which I know people will just reply with "there are loads of false negatives and a negative result doesn't mean anything") and that I am stil in a "honeymoon period", which quite frankly I'm sick to death of hearing, as no one can ever provide a clear answer as to how long it lasts, and if its just another way for medical personnel to keep people from asking questions.

I got diagnosed 3 weeks after receiving my Astrazeneca vaccine (diabetes for an under 30 receiving this vaccine is the last thing that came to mind!) in which I strongly believed to be the trigger for all of this.

Is it possible for someone to become temporarily hyperglycemic due to the immune system being attacked, and as a result created a temporary hyperglycemic incident, showing all of the symptoms to that of an undiagnosed diabetic?

From the digging around and the forums I have been reading, I can't find anything that relates to what's bothering me, and everything in the diabetes world is very black and white. There's no grey area, like you're told you have diabetes, there's not other explanation so get on with it.

Maybe I'm in denial, and don't want to believe all of this, but to put everything at rest, surely there is something that can be proven to me in physical writing that I have Type 1 diabetes.

Thank you for taking the time to read all of this, and I hope maybe someone can help me or give me some sort of advice.

 

[EllieM]

Welcome to the forums @sllimc6991 .

I got diagnosed 3 weeks after receiving my Astrazeneca vaccine (diabetes for an under 30 receiving this vaccine is the last thing that came to mind!) in which I strongly believed to be the trigger for all of this.

Your hba1c of 12.8% (corresponding to a blood glucose level averaging 17.7mmol/L) is based on the average blood glucose level for the last 3 months, so if it was normal before the astrazeneca vaccine then it would have had to be astronomical for the 3 weeks following...

It is very very common for new adult T1s to have a honeymoon period, sometimes lasting for years, where their own insulin production recovers and they need far far less insulin than initially prescribed. Your team should have explained to you how to titrate your insulin down as needed, though, so that is disappointing.

A small amount of basal insulin can go a very long way if a person is honeymooning.

I know it's not what you want to hear, but given that you still need insulin and your initial hba1c was so high, I don't personally see how you could not be diabetic.

 

[Fenn]

Hi, welcome

You must have had symptoms to have been tested? So assuming you had a or some symptoms and two Hba1c tests? I am not sure why you doubt your diagnosis. I guess as long as you keep testing, time will tell, one way or another.

Personally I would say diabetes is one huge Grey area, medical folks have to put us into boxes for treatment.

I doubt many of us here haven’t experienced some level of denial, I thinks it’s quiet normal, you break your leg, you can see the cast, diabetes being mainly invisible, it’s a lot easier to deny.

But, perhaps you are correct and you don’t have diabetes, Stranger things have happened I’m sure, the medical world is far from perfect and far from all knowing, buts it is better to have been falsely diagnosed and treated than not diagnosed if you are in fact type one and run the risks of serious illness.

I hope you find the answers you want, best of luck, keep posting.

 

[Dark Horse]

The honeymoon period can last from between 1 month and 13 years, The exact length depends on the person and no-one can predict it for you, unfortunately. This article has a lot of useful information about honeymoon periods, https://www.webmd.com/diabetes/type-1-diabetes-honeymoon-phase

As already mentioned, such a high HbA1c (12.8% or 17.7 mmol/mol) on diagnosis makes it very unlikely that diabetes had developed in just the preceding 3 weeks.

 

[Tony337]

Hi
I can't answer your questions but I wanted to say hello as you do come across as being very irritated.
I do not see specialists and avoid dsn's like the plague as they don't listen they just talk in my experience.
Because I've been type 1 for nearly 50 years I too fear I come across as arrogant but I don't mean to.
Keep researching and do challenge advice given but don't let it get you down.

I wish you all the luck in the world

Tony

 

[ROE100]

Understand your frustration but sense it may be more about the information/instruction/training you have been given is a bit lacking i.e. you would be on a higher basal but you have reduced it yourself.

I have been T1 for over 30 years and my basal is only 12 units the amount of units you take shouldn't be your guide to say am I diabectic or not if 6 units is what you need to assist in getting a better sugar level then that is what you need.

As others have said as well as yourself - 'honeymoon period'

 

[In Response]

As others have said, you don't sound as if you have been misdiagnosed given your Hba1c and that you need injected insulin.

Whilst the advice you were given in dosing seems out (after more than 15years, I am on 12 units of basal a day), the challenge for health care professionals (consultants and DSNs - in my case the DSN is more knowledgeable than the consultant so I definitely do not avoid DSNs like the plague). Anyway, back to the challenge: we are all different. We are different sizes, live different lifestyles, have different other medical cont, were diagnosed at different times with different treatments available, ... There is no one size treatment that fits all of us, no fixed length of honeymoon period, no ideal dose of insulin, no best insulin, ...
We have to learn what suits us with support from the diabetes team, friends and forums.

 

[Lamont D]

I was misdiagnosed with T2 in 2009, diagnosed with RH in 2012/3.
I am non diabetic.
The battle I had to get a true diagnosis took over ten years.
So I do know your frustration, I had an awful lot of hypos before diagnosis.

But I bow to my T1 colleagues who know more than I do about honeymoon periods.
And what it is to be T1!

Also, don't stop asking questions of your health care team and on this site if you get frustrated or confused.

 

[jonathan183]

In terms of contact from my nurses, all I have been told is my GAD test came back negative (which I know people will just reply with "there are loads of false negatives and a negative result doesn't mean anything") and that I am stil in a "honeymoon period", which quite frankly I'm sick to death of hearing, as no one can ever provide a clear answer as to how long it lasts, and if its just another way for medical personnel to keep people from asking questions.

I believe there are 3 sets of antibodies tests which should be completed for testing to determine if your diabetes has an autoimmune component. Did they mention zinc transporter 8?

Ed: I think they only started testing for this around 2016. Some more info here

 

[Lamont D]

I believe there are 3 sets of antibodies tests which should be completed for testing to determine if your diabetes has an autoimmune component. Did they mention zinc transporter 8?

Sounds like one of Eddie Stobart's fleet. (Ha!) Sorry!