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Confused

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Katrina5664

Active Member
Messages
31
Type of diabetes
Type 1
Ok so now I am very confused. Last year in August I was hospitalised with insects bites on my back which were operated on and at the same time was diagnosed with T1 diabetes - blood sugar level of high 30s and a measurement of 113 ketones. This was a shock but ok as all of you out there have done you have to get on with it and learn. I have worked quite hard to get control and I am not doing so bad. Today I went for my second diabetic review and this time saw the main man for diabetes at the hospital. All went well he was pleased with my readings and blood works blah di blah. He then said he was not sure if I was type 1, or 2 or (giggle giggle - him not me) but was quite happy to treat me as type 1. For explanation he said I had no Gad antibodies present. So now I am really confused. Should I ask to see someone else, should I ask for more tests what difference would it make. I am on insulin at the moment basel and bolus,
Katrina
 
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.
 
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.
 
Thank you all for your replies. Some interesting things here. I suppose at present I should run with what I am doing and go from there.
 
Odin004 said:
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).
Click to expand...

I was hospitalised for infected bites on my back requiring an operation to remove the infected flesh etc (yuk). I was put straight onto insulin administered by the nurses to start with. Whilst in hospital - three week stay - I had three consecutive hypos in the mornings and the following evening refused to let them inject me with the full dose of Lantus - 16 units. They decided to give me sitagliptin - incorrect spelling which brought me out in a rash head to toe so stopped that. According to my discharge papers my pancreas is atrophied. I was losing weight before going into hospital and was 7stone 9 on admittance. My husband has prostate cancer which is not responding well to treatment and I put it down to the worry etc of this.
Katrina
 
Last edited by a moderator:
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?
 
Hi Odin the bites happened in this country just before I was hospitalised - I have two rough collie dogs and we walk through various terrains pasture, orchards and arable land. I have no idea what bit me but usually like everyone else they just come and go but not this time. No discussion took place about the pancreas I was just told this was to be expected with T1.
Katrina
 
Katrina5664 said:
According to my discharge papers my pancreas is atrophied.
Click to expand...

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?
 
Katrina5664 said:
Hi Odin the bites happened in this country just before I was hospitalised - I have two rough collie dogs and we walk through various terrains pasture, orchards and arable land. I have no idea what bit me but usually like everyone else they just come and go but not this time. No discussion took place about the pancreas I was just told this was to be expected with T1.
Katrina
Click to expand...


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.
 
Katrina5664 said:
Hi Odin the bites happened in this country just before I was hospitalised - I have two rough collie dogs and we walk through various terrains pasture, orchards and arable land. I have no idea what bit me but usually like everyone else they just come and go but not this time. No discussion took place about the pancreas I was just told this was to be expected with T1.
Katrina
Click to expand...

Katrina - Do you know what bit you? Was it a mossi type or a tic?
 
Hello DCUKMod
No we have no idea of what bit me. I live in the South of England so nothing exotic. I have never had any problems with bites in the past. I doubt it would be a tic as they tend to hang on and burrow in with their heads.
Katrina
 
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