Confused

Hi @Katrina5664,

It's very frustrating not to know what caused your diabetes - I was diagnosed after being hospitalised 15 years ago - I described the circumstances here:

https://www.diabetes.co.uk/forum/threads/steroids.121908/#post-1482950

In relation to your GAD antibodies test, the fact that this was negative indicates that it's very likely you don't have type 1 diabetes, as this is caused by an auto-immune condition (in which case, the test would normally show GAD antibodies). There is more information here:

http://www.diabetes.co.uk/gad-antibody-test.html

It's not always as simple as "type 1 or type 2" - there are other types of diabetes too, with a range of possible causes. Can I ask what treatment were you given when you were hospitalised in August last year? It could be that the condition you were hospitalised with, itself affected your pancreatic function - or it could be that the medication you received had an effect (especially possible if you were treated with steroids). Also, were you given medication first to control your sugars, before being put on insulin?

In any case, I don't see the harm in asking if there's any way to pin down exactly what's caused your diabetes, and what type it is - this may not be possible in all cases, but it's worth asking; however, it's unlikely to make a difference to your treatment (especially if medication alone hasn't worked).

 

About a quarter of type 1s do not show GAD antibodies. GAD antibodies show you are a type 1, but confusingly no GAD antibodies does not mean you are not type 1.

 

@catapillar regularly offers good advice regarding GAD/C-peptide testing and what their results can and can't determine.

 

1) a giggling doctor is an indication of someone with a lack of social skills, not someone with a lack of clinical skills. Sorry if it made you uncomfortable, but don't let it.

2) not being sure whether you are type 1 or type 2 is a perfectly valid clinical uncertainty. Very often is is not actually possible to determine what type of diabetes someone has.

3) the only time it is possible to be absolutely, definitely, certain what type of diabetes you have is if you get a positive antibody test. A positive GAD test means you definitely have type 1. A negative GAD test doesn't mean you don't have type 1. It just means that you won't be able to get a certain answer as to type of diabetes. About 25% of people with type 1 are GAD negative.

http://www.diabetesandenvironment.org/home/mech/autoimmunity

5) more tests beyond the gad test aren't really going to help determine type of diabetes. If you're terribly bothered about it, you might want to query whether the gad test included a broader range of antibody tests, it usually does. Other antibodies associated with type 1 are ICA, IA-2 and ZnT8A. Again, not all type 1s are positive for these antibodies.

6) if it's not possible to determine the type of diabetes from tests then the story of your diagnosis can help in deciding. The fact you were diagnosed with blood sugar over 30 and with ketones points to type 1. Other things pointing to a type 1 diagnosis would be sudden dramatic untried for weight loss pre diagnosis.

7) if you will be treated as type 1 with a basal bolus regime then uncertainty over what type of diabetes you have won't make any difference to your treatment.

 

They may not be sure as there's an increase in the LADA strand of diabetes. Type 1.5 as it's also known. My partner has the LADA strand and still uses an insulin pump. Slow onset can give mixed results as it isn't type 1 but it also isn't the same as type 2. Maybe that's why your doctor has said that they're not sure.

Ask about it next time you're at a review maybe.

 

Hi @Katrina5664,

Thank you for this information; and I'm sorry to hear about your husband's diagnosis. It's quite reasonable to feel that weight loss is due to worry (as of course, that can happen) - but in your case, it seems that you developed some form of diabetes prior to hospitalisation - and given your sugar and ketone levels, I think insulin treatment was inevitable (albeit the initial dosages may have been a little too high).

If they have identified that your pancreas has atrophied, did you get an explanation for this ? - or at least, were the possible causes discussed? This suggests to me that it's possible your pancreas isn't producing insulin - but not as a result of "type 1" diabetes (i.e. not an autoimmune condition).

These insect bites - when did they happen - and in which country?

 

Atrophy of the pancreas is when the pancreas gets actually physically smaller.

Atrophy of the pancreas is usually associated with age, obesity or chronic pancreatitis.

This doesn't happen in type 1 diabetics. Some one who has type 1 will have a pancreas that's looks the same as anyone else's. The difference in a type 1s pancreases is that their immune system has killed off the insulin producing beta cells.

Had you had a CT scan to determine atrophy of the pancreas?

 

I just wondered, as it's possible that some parasitic infections can lead to damage to the pancreas; but from what you say, it sounds as though you were losing weight prior to the insect bites. It's not always possible to identify the cause of diabetes; advances in medical science are being made all the time however, and perhaps in future, it will be possible to shed some light on this.