Typing and "testing"

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
I'm not completely sure as to what type I am. I've had some testing (C-pept. and anti-GAD) and they were inconclusive. My internist and I chose to not do further testing and go with the assumption I'm T1. Before I had those tests, I had been treated like a T1 for almost 2 years, just like you, so nothing really changed.

I see both my internist and my DN once a year, as I requested.

Losing weight on insulin apparently is very hard. I eat a lot less than before, and healthier choices too, but have gained a couple of kilo's since starting insulin. Looks pretty stable now, and although not happy about my bmi of 36 or so, I prefer healthy blood sugars over healthy weight.

Mine too.


Can you ask to be seen by an endo? I'm not sure what the problem with your HCP's is and why you can't see someone else.

Hope things'll get better for you in the near future!
I have been treated as a Type 2 since diagnosis as they said I was overweight and over 40 despite only having a bmi of 24
I can call my DN whenever I want but have no specific appointment schedule
My GP has a nurse review once a year and i have been referred to an endo but they keep signing me off!
I am now up to 97 kilos and god only knows what my bmi is- I'm only 5'6"!
I agree with healthy blood sugars but the weight is a health issue as well as mental problem
Thank you
 
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Antje77

Oracle
Retired Moderator
Messages
19,284
Type of diabetes
LADA
Treatment type
Insulin
I have been treated as a Type 2 since diagnosis
Ah, different interpretation of the word treatment :)
Both our medical treatments (a basal/bolus insulin regime) is typical treatment for T1, and not T2, which is what I meant. My GP nurse, who handled my diabetes, was of the belief I was T2 for the first 2 years after diagnosis. It didn't matter very much to me what she believed, as long as my treatment worked to get my blood sugar down.
 

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
Helen already explained the honeymoon period, and better than I possibly could, so I'll leave that at that. But from the sound of it you're being treated with insulin as if you are a T1. Far as I know that means you should have a diabetic team and regular tests and check ups. If you're not getting those, I do believe it is time to, as Rachox suggested, file a complaint, and get a second opinion elsewhere. While a T2 diagnosis gets a lot of stuff taken care of, the care for a confirmed T1 is of, in my opinion, more vital importance, because things can go awry very fast. And while for a T1 white and brown carbs matter (splitting doses for instance due to lower GI and such), for a T2 a carb is a carb, white or brown doesn't matter, they're "equally evil". Just thought I'd mention it.
ok Thats interesting-I had never heard that before!
so it appears I am being treated with Type 1 medication and dosing even though my treatment ( physical and attitude!) is as if I was a Type 2.....definitely need to query this with a few people
 

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
Ah, different interpretation of the word treatment :)
Both our medical treatments (a basal/bolus insulin regime) is typical treatment for T1, and not T2, which is what I meant. My GP nurse, who handled my diabetes, was of the belief I was T2 for the first 2 years after diagnosis. It didn't matter very much to me what she believed, as long as my treatment worked to get my blood sugar down.
The main reason I'm worrying about getting a correct diagnosis is family.
I am the first person in all of my family history that I know of to get any form of diabetes and I have babies and grand babies to think of
The attitude I get whenever I mention my diabetes doesn't help :banghead::(:facepalm::stop::inpain::wacky:
 

Antje77

Oracle
Retired Moderator
Messages
19,284
Type of diabetes
LADA
Treatment type
Insulin
Have you tried contacting the hospital where you were first diagnosed and where they prescribed your first insulin about this?
so it appears I am being treated with Type 1 medication and dosing even though my treatment ( physical and attitude!)
I think something's wrong if your HCP's have a different attidude to T1's than to T2's...
 

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
Have you tried contacting the hospital where you were first diagnosed and where they prescribed your first insulin about this?

I think something's wrong if your HCP's have a different attidude to T1's than to T2's...
Unfortunately the hospital is the same in our area for clinics and everything else
It's the attitude that I am diabetic because I caused it (Type 2) as opposed to it being not my fault (Type 1) that we all face everywhere
 

therower

Well-Known Member
Messages
3,922
Type of diabetes
Type 1
Treatment type
Insulin
I don't want a diagnosis!
I want help in getting help!!!!!!!!!
It shouldn't make any difference what my numbers are to the basic question which was HOW DID OTHER PEOPLE GET THEIR TYPE AT DIAGNOSIS?????
I got diagnosed as type 1 simply by giving a brief account of medical issues over the previous 3 months and undertaking a simple urine test.
 
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becca59

Well-Known Member
Messages
2,856
Type of diabetes
Type 1
Treatment type
Insulin
I was diagnosed as type 1 on admittance to hospital with high ketones, bloods bordering on 30, severe weight loss and extreme thirst. Two days earlier my Gp thought I had type 2 because I was 54. Never had any tests, consultant said no need it was obvious I was type 1.
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
@Kerri5981 - I've often commented that many are type categorised by best guess. The best guess is sometimes driven by one or more of the following: age, stature, symptoms near diagnosis and the progression (positively or negatively) after the initial diagnosis.

I'm not saying you shouldn't be asking for a definitive diagnosis. How could I? However, I'm wondering what it is you feel you will achieve by a new classification. And finally, what you would feel if you were confirmed as T2?

In terms of the NHS testing you; that seems a lottery, but there are a number of private labs now doing bloods at often competitive costs.
 

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
@Kerri5981 - I've often commented that many are type categorised by best guess. The best guess is sometimes driven by one or more of the following: age, stature, symptoms near diagnosis and the progression (positively or negatively) after the initial diagnosis.

I'm not saying you shouldn't be asking for a definitive diagnosis. How could I? However, I'm wondering what it is you feel you will achieve by a new classification. And finally, what you would feel if you were confirmed as T2?
It is my diagnosis so surely I should have the right to know?
In terms of the NHS testing you; that seems a lottery, but there are a number of private labs now doing bloods at often competitive costs.
Well I'm sorry but I don't consider over £200 and a round trip of nearly 5 hrs plus the appointment time to be "competitive" on ESA when it only costs the NHS £36 or so I have been told- which I offered to pay!

Really, I am not trying to be rude, but I have my reasons for wanting to know and what should it matter what they are?
I just wanted some advice from people with the same disease, not to have my life history dragged through or my motives questioned!!
I joined this "community" in the first couple of days after my diagnosis and this is the first time I have been back in over 2 years and I am beginning to remember why!
 

LooperCat

Expert
Messages
5,223
Type of diabetes
Type 1
Treatment type
Other
It’s not as cut and dried as many of us always thought. I never knew there could be such a grey area in the middle until I got talking to people here. My impression was that of course type twos sometimes needed to use insulin, but because they are so resistant to the the stuff, that doses would be many times those of a type one. But even that isn’t a hard and fast rule. Some here take several hundred units a day; some of us less than thirty. I hope you find the answers you’re looking for.
 
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HSSS

Expert
Messages
7,465
Type of diabetes
Type 2
Treatment type
Diet only
@Kerri5981 you may not be trying to appear rude but you do come across that way. People are here trying to help you and you keep snapping back at them. You initially didn’t give a lot of info only adding it in various posts along the thread. We can’t say much on little info.

We get that diabetes care can be patchy and leave plenty to be desired in some places. it can leave you very frustrated. You’ve been given some good advice about how to seek to remedy that. We don’t need to know all your personal history but some of the questions you are uncomfortable with answering have relevance to the answers and advice given. If you don’t want to say something that of course don’t but please don’t snap at those trying to help. We’re not being nosy. We want to help. A lot of the questions are things to consider to help you, not us. We would like to be your support that you say you lack in real life. Let us.

As far as tests go a lot of private hospitals will do some testing, there is usually at least one in most major cities if not more frequently. Unless you really are in a very remote area perhaps there may be others you haven’t found yet. Online clinics are the other options, though you may still have to find somewhere to get the blood drawn and then send it off.

Or you if after reading other peoples experiences you still feel the need to a definite answer (if it’s possible) then I totally understand this and in your shoes would be asking for. A second opinion and an explanation of their rationale in their decision of type. You don’t seem to have been given much information but your caregivers, eg test results and explanation. At the very least you should get these and that alone might reassure you of the choices that have been made so far.

I hope you find your answers
 

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Well I'm sorry but I don't consider over £200 and a round trip of nearly 5 hrs plus the appointment time to be "competitive" on ESA when it only costs the NHS £36 or so I have been told- which I offered to pay!

Really, I am not trying to be rude, but I have my reasons for wanting to know and what should it matter what they are?
I just wanted some advice from people with the same disease, not to have my life history dragged through or my motives questioned!!
I joined this "community" in the first couple of days after my diagnosis and this is the first time I have been back in over 2 years and I am beginning to remember why!

All I'm tying to do is understand your motivators, or fears, in case there should be another angle to your approaching your medical team.

Type 1 is an auto-immune condition, although not all T1 test positive for antibodies. Do you have any other autoimmune conditions, like autoimmune thyroiditis, rheumatoid (as opposed to osteo) arthritis, coeliac diseaase or lupus, as examples?

That's the sort of thing that can strengthen a case for testing, or a strong family history. Have you ever been referred to an Endochrinologist?

It's not my place to judge you, or anyone else for that matter, but you are looking for some fairly focused help, and folks are actually trying to deliver that.
 

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
@Kerri5981 you may not be trying to appear rude but you do come across that way. People are here trying to help you and you keep snapping back at them. You initially didn’t give a lot of info only adding it in various posts along the thread. We can’t say much on little info.

We get that diabetes care can be patchy and leave plenty to be desired in some places. it can leave you very frustrated. You’ve been given some good advice about how to seek to remedy that. We don’t need to know all your personal history but some of the questions you are uncomfortable with answering have relevance to the answers and advice given. If you don’t want to say something that of course don’t but please don’t snap at those trying to help. We’re not being nosy. We want to help. A lot of the questions are things to consider to help you, not us. We would like to be your support that you say you lack in real life. Let us.

As far as tests go a lot of private hospitals will do some testing, there is usually at least one in most major cities if not more frequently. Unless you really are in a very remote area perhaps there may be others you haven’t found yet. Online clinics are the other options, though you may still have to find somewhere to get the blood drawn and then send it off.

Or you if after reading other peoples experiences you still feel the need to a definite answer (if it’s possible) then I totally understand this and in your shoes would be asking for. A second opinion and an explanation of their rationale in their decision of type. You don’t seem to have been given much information but your caregivers, eg test results and explanation. At the very least you should get these and that alone might reassure you of the choices that have been made so far.

I hope you find your answers
|All I asked was two simple questions but either people don't read or are being deliberately obtuse!
 

Kerri5981

Well-Known Member
Messages
46
Type of diabetes
Prefer not to say
Treatment type
Insulin
All I'm tying to do is understand your motivators, or fears, in case there should be another angle to your approaching your medical team.

Type 1 is an auto-immune condition, although not all T1 test positive for antibodies. Do you have any other autoimmune conditions, like autoimmune thyroiditis, rheumatoid (as opposed to osteo) arthritis, coeliac diseaase or lupus, as examples?

That's the sort of thing that can strengthen a case for testing, or a strong family history. Have you ever been referred to an Endochrinologist?

It's not my place to judge you, or anyone else for that matter, but you are looking for some fairly focused help, and folks are actually trying to deliver that.
All I want to know is how other people received their Type when diagnosed- what is so particular about that?
I thought these were the kind of questions that this was set up to answer
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
All I'm tying to do is understand your motivators, or fears, in case there should be another angle to your approaching your medical team.

Type 1 is an auto-immune condition, although not all T1 test positive for antibodies. Do you have any other autoimmune conditions, like autoimmune thyroiditis, rheumatoid (as opposed to osteo) arthritis, coeliac diseaase or lupus, as examples?

That's the sort of thing that can strengthen a case for testing, or a strong family history. Have you ever been referred to an Endochrinologist?

It's not my place to judge you, or anyone else for that matter, but you are looking for some fairly focused help, and folks are actually trying to deliver that.
As a side issue I will add something I've raised before that viruses can also result in beta cell death with exactly the same outcome and treatment. Whether it's called T1 or yet another type is up to the 'experts' but it's not T2 and I think it makes sense to include that cause for T1.