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Type 2 Misdiagnosis of diabetes type

CrankyKat

Well-Known Member
Messages
63
Type of diabetes
Type 2
Hi all,

I have been under a diabetic specialist who had taken me on as a new patient. He is confused by my weight and extra issues I have (acute retinopathy) whether I am officially type 2 or in fact type 1 diabetic.

I am booked in for an HB1AC test and a urine test to look further into it.

I wondered if anyone else has been in the same boat and how the news effected you? X
 
If you don't mind telling us, how old are you? (Edited to add: This is relevant, in some ways, to the "what type of diabetes" question.)
 
... the reason I was asking for your age is that if you are at the younger end of the spectrum (20s for instance) then Type 1 could be more likely than if you were older. Other than that, I hope some people with more experience than I have can chime in and help with your question.

Edited to add: I see you just added a photo to your avatar. Based on your youthfullness, the question of Type 2 or Type 1 (from your doctor) is understandable. As I said, people who actually have experience of this issue will be better placed to address this than I am.
 
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Personally the news that I was heading for diabetes came as a terrible shock, followed by lots of painful grieving. I mourned my old self-image and also my previous carefree way of life around shopping, cooking and eating. I wept floods intermittently over several weeks. Now I feel much more positive, though I can still over react if I get what seems to me an undeservedly high blood glucose reading. IMO it must be a rare person who is not upset by all this in the beginning. In your case the current uncertainty must make it harder to bear. I imagine you'll feel better when you know where you stand. Good luck with your tests.
 

Hi,

I know exactly what you mean about morning your old life as I do that all the time. How easy it would be to eat a big bag or Haribo or a massive bag of kettle chips but meh.

I think that once I know 100% of what I have it will help me alot!
 
CrankyKat said:
Hi,

I know exactly what you mean about morning your old life as I do that all the time. How easy it would be to eat a big bag or Haribo or a massive bag of kettle chips but meh.

I think that once I know 100% of what I have it will help me alot!
Click to expand...
I like the forlorn selfie!
 

It sounds like your doctor is working to pin this down, which is important. It might take a little while, but getting it right is more important than doing it quickly.

I have not been in the same boat as you because my diagnosis was a straightforward Type 2. It was however a big shock just to be told that I had diabetes, and I know something about what you are going through. Your selfie reminds me a bit of my eldest daughter by the way.

It does get better over time, for most of us, as our attention switches to practical details and we learn to cope with diabetes. It is a big nuisance but for most of us, manageable, and we can live our lives to the fullest.

Edited to add: I have a first cousin who was diagnosed with Type 1 at about your age and who is now 59. She's never let diabetes slow her down and, since I was diagnosed with T2 nine months ago, has become one of my role models for coping with the disease.
 
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I was diagnosed T1 at 50. It can happen at anytime

And yes, I miss chili cheese corn chips.

Weight loss for no reason is a big indicator of LADA
 

I don't think this is correct. Type 1 is an autoimmune disease, it can strike at any age. About 20% of people newly diagnosed with type 1 diabetes are diagnosed over 40 - https://www.diabetes.org.uk/about_us/news/1-in-5-cases-of-diabetes-diagnosed-in-the-over-40s

@CrankyKat all a hba1c will tell you is what your blood sugar is doing, it doesn't tell you why it's doing it, so is literally no help in determining type of diabetes. Do you know what your urine is being tested for - have you been give any instructions for it to be first pee of the morning or after a meal etc?

Anyway, there are two tests that can help with determining type of diabetes:
  1. A cpeptide test. This tests to see what your insulin production is looking like. It can be don as a blood test or as a urine test, but my recollection is there are some specific instructions on the timing of the pee they want! It doesn't give any sort of definitive answer on diabetes type as a honeymooning type 1 will be producing insulin and a type 2 who's pancreas has been exhausted won't be.
  2. Antibody testing. Type 1 is an autoimmune disease, so they can test to see if you have the antibodies associated with type 1. There are 4 or 5 identified antibodies. The most commonly tested for is GAD. If you are GAD positive you are definitely type 1. But if you are GAD negative that doesn't necessarily mean you aren't type 1. About 25% of type 1s are GAD negative.
So, the testing might not actually give a definitive answer on type of diabetes. Sometimes the clinical picture of your diagnosis gives more of an indication of diabetes type. How were you diagnosed? How long have you been diagnosed with diabetes? It's not unusual for type 2s to have complications, like retinopathy, on diagnosis because they may have had undiagnosed diabetes for years. This is much less common for type 1s as type 1 is an acute onset condition. Had you had significant untried for weight loss pre diagnosis? What were your blood sugar levels on diagnosis (over 20 or 30 would point towards type 1)? Did you have ketones on diagnosis (it's very unusual for a type 2 to have ketones, but 85% of type 1s are diagnosed in DKA)?

How are you currently managing your diabetes? Things that may suggest LADA, rather than type 2, would be inability to achieve blood sugar control with diet, exercise and oral medication and continued untried for weight loss.

You say your consultant is confused by your weight. It should be remembered that you don't have to be fat to be type 2, it is perfectly possible to be normal weigh or slim and still have type 2 diabetes. While being overweight significantly increases the risk of type 2 and the media likes to present it as a disease for fat people, that's just not correct. Other lifestyle factors, like shift work and high stress can increase the risk of type 2, as can things like hormonal imbalances and PCOS, and there is a significant genetic element to type 2 so if you have a family history that could make type 2 more likely no matter what your weight is.
 
Kristin251 said:
I was diagnosed T1 at 50. It can happen at anytime
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Thank you both for correcting me. I am relatively new to this stuff and you are the ones with the knowledge who should be listened to. (By the way I was not trying to say that T1 is only diagnosed among the young. If you see my original post I only said it could be more likely if you were younger than if you were older. But the phrasing was clumsy at best.)

@catapillar's points are very informative, including for instance the fact that T1 is usually acute-onset.
 
Hi all! I should have mentioned the are also going to do the antibody and cpeptide test.
 
Grateful said:
... the reason I was asking for your age is that if you are at the younger end of the spectrum (20s for instance) then Type 1 could be more likely than if you were older...
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Nay! Not so. I was diagnosed T1 in my 60s. A friend was also diagnosed T1 in her 60s...
 
If 20% diagnosed with T! are over 40 it follows that 80% ie MORE are under 40.
 
I was misdiagnosed with prediabetes, then in 2009, I was T2!

Both wrong!

I got my true diagnosis in 2013!

The testing may take time and most are to eliminate or prove what is happening with your endocrine system.

Getting a true diagnosis will alter your thinking, then as you realise you have to do something about it. The treatment is even more important than the diagnosis.
Your way of thinking will almost certainly change if you value your health.

If it is diabetes, you will have to seriously think about how your system can tolerate certain foods.
I would always advise to use a glucometer and a food diary, to test, record and experiment to see which foods you are having intolerance to.
 
Hi all,
I was searching for the term 'autoimmune' and the engine brought me this thread. Rather than creating a new one, I'll ask here, and hopefully get some answers, hoping in particular to hear from @Lamont D, @catapillar and @Kristin251.
My son was diagnosed with T1D this January. He's been in honeymoon since diagnosis, taking as much as 4-5 units of insulin a day. His HBA1C came down from 12% at diagnosis to 5.6 this summer and 5.8 a month ago. Soon after diagnosis we did an antibody test that showed no antibodies. Our endo was enthusiastic at first and ordered genetic tests be done (for the entire family), but no results yet. I am worried that the results will never come back as the lab we sent serums to might not do the tests, which is a long story.... Anyway, my question is, since there are were no antibodies, c-peptide we did earlier was good, and he is still in his honeymoon (10 months now), could he not be type 1? Is there any other test to do to see if the t1d diagnosis was correct? I am worried that we are missing on something that we might regret later. We are due for an appointment in a month, but would like to have some pointers before then. Thanks
 
@justadad
From @catapillar further up:

"
  1. Antibody testing. Type 1 is an autoimmune disease, so they can test to see if you have the antibodies associated with type 1. There are 4 or 5 identified antibodies. The most commonly tested for is GAD. If you are GAD positive you are definitely type 1. But if you are GAD negative that doesn't necessarily mean you aren't type 1. About 25% of type 1s are GAD negative.
"

Waiting for a definitive answer from a T1 but I would guess that it is likely that your son is one of the 25% not GAD positive. [Thinks - was he tested for the full range of antibodies or just GAD?]

I am assuming he had a serious blip in insulin production (hence the diagnosis) but has recovered somewhat and has a partially functioning pancreas. Just had a quick search and there is loads about the honeymoon phase but nothing obvious about how to confirm that you are T1 in the honeymoon phase.
 
Type 2 can also happen at any age. Even toddlers can and are diagnosed type 2 these days. https://www.diabetes.org.uk/about_u...hildren-and-young-people-have-type-2-diabetes
 
lucylocket61 said:
Type 2 can also happen at any age.
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Of course. I was really only talking about prevalence, but as I said earlier, I seem to be having a lot of trouble phrasing it properly.

Perhaps all I can say that will not be objected to is that "many of those diagnosed with T2 are in middle age, and many of those diagnosed with T1 are in childhood or early adulthood."

(That there is something of an epidemic of T2D in children is a known trend. Only a couple of days ago I was reading about the explosion of childhood T2D in the Arabian Gulf countries.)
 
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