confused about type

[kim22]

I don't know what type I am, and I was wondering if anyone else doesn't know what type they are?

I was diagnosed with type2 diabetes because of my weight, age (I was 19 at the time and was told I was too old to be type 1!) and I had no ketones.

I was only on tablets for a couple of months before I was put on insulin (novomix 30). because of this I thought I had been misdiagnosed.
My diabetic nurse at the hospital thinks I'm type 2 but a while ago she said I might be 'somewhere between the two'. But my diabetic nurse at the doctors thinks I'm type 1, and because she's the one I've been seeing over the past few years that's what I believed!

I recently went back to the hospital because I wanted a pump, but was told I couldn't have one if I was type 2, so she started me on basal bolus insulin therapy and said if it helps then they'll look in to what type I am. I asked why she couldn't do the blood test now, she said she couldn't because the test is too expensive!

Is this normal/common? Also, do all type1's have ketones?

I'm more confused now than when I first found out I was diabetic, I don't know what to do

 

[Mark T]

I don't know what type I am, and I was wondering if anyone else doesn't know what type they are?

I was diagnosed with type2 diabetes because of my weight, age (I was 19 at the time and was told I was too old to be type 1!) and I had no ketones.

I was only on tablets for a couple of months before I was put on insulin (novomix 30). because of this I thought I had been misdiagnosed.
My diabetic nurse at the hospital thinks I'm type 2 but a while ago she said I might be 'somewhere between the two'. But my diabetic nurse at the doctors thinks I'm type 1, and because she's the one I've been seeing over the past few years that's what I believed!

I recently went back to the hospital because I wanted a pump, but was told I couldn't have one if I was type 2, so she started me on basal bolus insulin therapy and said if it helps then they'll look in to what type I am. I asked why she couldn't do the blood test now, she said she couldn't because the test is too expensive!

Is this normal/common? Also, do all type1's have ketones?

I'm more confused now than when I first found out I was diabetic, I don't know what to do

Hi,

There are a few in the forums who were diagnosed with Type 1 in there 50's - so there isn't really an age limit.

There is a thing called Type 1.5 / LADA which is a slow onset form of Type 1. You can read more about that here: http://www.phlaunt.com/diabetes/18382053.php

From my understanding, one of the main methods for determining Types is to have the tests for antibodies (Type 1 is autoimmune) - but I was told that you have to have that done within the first 6 months of diagnosis as one your beta-cells are gone, so do the antibodies.

 

[Copepod]

Hope you find basal bolus more flexible than mixed insulin. In one way, your type of diabetes doesn't matter nearly as much as getting the right sort of treatment. Although some people with type 2 diabetes have problems getting the right number of blood glucose test strips, generally, anyone who needs insulin gets enough to cover meals, driving and exercise, especially as some checks will do more than one thing eg post exercise and pre meal.

 

[everydayupsanddowns]

The GAD and C-peptide tests are expensive, but I can fully understand why you would want an accurate diagnosis - if only to make sure that all treatment options that should be open to you, are!

I can't remember which of the tests is which, one is for antibodies, the other tests for insulin production I think.

 

[Northerner]

The GAD and C-peptide tests are expensive, but I can fully understand why you would want an accurate diagnosis - if only to make sure that all treatment options that should be open to you, are!

I can't remember which of the tests is which, one is for antibodies, the other tests for insulin production I think.

C-peptide is the one which shows how much insulin your pancreas is producing, since it is part of proto-insulin and produced in equal quantities. Injected insulin doesn't contain C-peptide (although there is research going on to find out if it should!).

I was diagnosed as Type 1 at 49, although my consultant thinks I must still have active beta cells after nearly 4 years. This is chiefly because I started on 20 units of lantus and have currently reduced this by 95%! 😱 My novorapid requirements have also fallen by about 50% since diagnosis.

I would stick to your guns and request the tests because as Mike says you don't want to be denied future treatment possibilities because of misdiagnosis. Out of interest, how much daily insulin do you use? Obviously this varies from person to person, but often a Type 2 will require much larger doses than a Type 1.

 

[trophywench]

Patti on 'other' DSF only had it confirmed she was T1 last year, after over 8 years and other than the first 6 months (when she was just getting worse and worse) she also has been solely on insulin. First Novomix and then basal/bolus, just the same as you.

She didn't actually mind which sort she was, but it had quite a large psychological effect on her, just not knowing. She's in Cornwall and the treatment availability there was dire in the past but has picked up a bit recently and she was able to get referred to the hospital D Clinic and surprised hereself by bursting into tears when explaining to the Endo how she felt about 'not knowing'. He did the test. Took ages (6 weeks or something) to get the results though, so be warned in case that's 'normal' and not just down to the hospital admin being slow there.

I wouldn't set TOO much store about 'how much insulin do you actually use' because everyone is different for starters and anyway, if you are overweight, that can make you need more too.

 

[everydayupsanddowns]

Did all the T1s here exhibit Ketones at diagnosis (I know I did!). Just wondering whether the Kim22's lack of ketones could be an indicator that she may not be classic T1 and T1.5 (or whatever) might be more likely?

 

[Northerner]

Did all the T1s here exhibit Ketones at diagnosis (I know I did!). Just wondering whether the Kim22's lack of ketones could be an indicator that she may not be classic T1 and T1.5 (or whatever) might be more likely?

I believe my blood was so acidic I could have doubled as the 'Alien' in the film of that name! 😱

I think it may depend on what led you to diagnosis. I had shown some classic but 'liveable' symptoms for about two years, then a virus pushed my levels and my pancreas too far. Had I been diagnosed a year or so earlier, I have little doubt I would have been diagnosed as Type 2 due to my age, despite my physique (very slim, otherwise healthy).

 

[kim22]

I was told that I may be somewhere between the two types (which I assume is type 1.5, I had never heard/wasn't told of type 1.5 at the time)

My main worry is that I'm not getting the right treatment, for example, I was told I can't carb count because it doesn't work with people with type 2. My levels always seem to be in the teen's and 20's and I feel ill constantly, and it's not got any better since I found out.

I think I am on a decent amount of insulin (not really got anyone to compare with though) I was on 45 units of novomix twice a day, then I was put on 15 units of novorapid per meal and 45 units of levemir, but because my levels went to 31.2 I got in touch with my diabetic nurse and she put each injection up by 5 units.
However, I am overweight, also, I find it very difficult to exercise due to a bad back (I've been told that exercise helps the insulin to work)

 

[Mark T]

I don't understand why a Type 2 can't carb count - not being able to do so leaves you with a very inflexible treatment regime. What would happen for instance if you decided to have a low carbohydrate meal yet still injected the same amount of insulin?

Those sorts of blood glucose levels will not be doing you any good in the long run. I think there was an online carb counting course somewhere that I've seen mentioned here before.

 

[Northerner]

...I think I am on a decent amount of insulin (not really got anyone to compare with though) I was on 45 units of novomix twice a day, then I was put on 15 units of novorapid per meal and 45 units of levemir, but because my levels went to 31.2 I got in touch with my diabetic nurse and she put each injection up by 5 units.
However, I am overweight, also, I find it very difficult to exercise due to a bad back (I've been told that exercise helps the insulin to work)

It sounds to me like you may have insulin resistance as well as insulin insufficiency, meaning that you need an extra boost of insulin to 'top up' what your pancreas is producing, but your body isn't able to use the insulin very efficiently. The way it works (non-scientifically!) is that your cells have a number of insulin receptors on them, which are like doors that allow glucose to pass into the cells (for energy) and out of the blood. With insulin resistance, then your cells have fewer or damaged receptors so they don't take up glucose very efficiently. Exercise improves the situation because it causes more insulin receptors to become available on the cells making them more sensitive to the insulin and able to take up more glucose. Lesson over! 🙂

Losing wieght will certainly help, if you can find some form of exercise that you can manage regularly with your bad back - worth asking your GP for a referral to a physiotherapist who should be able to devise an exercise programme for you 🙂

 

[trophywench]

No idea if I had ketones or not, from actual measurements but I can tell you I did, because I know what I felt like then and what they feel like now!

I did have to give them an armful of blood every day in hospital though and that was horrid, was covered in bruises.

I know I was bloody annoyed - admitted on a Wednesday morning aged 22 and a married lady - and not until the Friday afternoon when my sister drove over and brought my mother to see me did the doctor actually come to tell me - and her!!! - all about it. I know he said a normal persons blood would be 4 to 5 but I don't remember what mine was, only that it was well above that.

After that the only thing that was done that I ever saw the results of, was pee dipping each morning. No idea what they did with 3 vials of blood every day.....

 

[Robster65]

It does sound as if your medical team are trying to force into one of the categories they've heard of rather than examing the evidence and just treating you as an individual case.

And worse still, they seem to be refusing to give you the treatment that will bring your BGs down. Instead it sounds like they're just doing what they think should work and then not adjusting it to the BGs.

Unless you're within, or somewhere near normal range, you'll constantly feel ill and your body won't be able to fight off infections or heal itself. The immune system is fighting a constant battle at those levels, and often loses. I hope you can come down to at least low teens, so you have a chance to feel well.

Rob

 

[kim22]

I don't understand why a Type 2 can't carb count - not being able to do so leaves you with a very inflexible treatment regime. What would happen for instance if you decided to have a low carbohydrate meal yet still injected the same amount of insulin?

That's exactly what I was thinking, but I was too busy panicking about doing the extra injections to ask why!

It does sound as if your medical team are trying to force into one of the categories they've heard of rather than examing the evidence and just treating you as an individual case.

And worse still, they seem to be refusing to give you the treatment that will bring your BGs down. Instead it sounds like they're just doing what they think should work and then not adjusting it to the BGs.

They're definitely refusing to give me proper treatment, my DN told me not to do any extra units if I eat more than normal or if my levels are high. when I spoke to her over the phone the other day, I asked what to do if my levels go over 30 again and she said not to worry about it!

As for exercise I was refered by my doctor to something called Be Active a while ago, where I did light gym work and swimming but when I finished, I found the gym membership too expensive to carry on.
I keep telling myself to go swimming again, although it does hurt, my main issue is being half naked in front of people!

 

[kim22]

btw I have been looking online at how to count carbs, this is what I've been using http://www.bdec-e-learning.com
As I have no idea about carb counting I was wondering if this is a decent site, as I've seen many things on the internet that appear to be made up, and obviously I want the right info.

 

[Medusa]

i was diagnosed with type one at age twenty, i was surprised as thought i was too old but when you look into it and speak to other folk you realise the boundaries are not so clear cut in every case.... in my opinion if you take insulin it can only be beneficial to carb count or at least be roughly aware of content of food.... carbs and cals is a good book for this ....

 

[trophywench]

Excellent site!

BDEC is Bournemouth Diabetes and Endocrine Centre, which is part of the Royal Bornemouth and Christchurch NHS Foundation Trust.

They deliver a carb-counting course (called BERTIE) which is on a par with (though not the same as) DAFNE. The principals are the same though. It was originally the only alternative to DAFNE that met every single one of the NICE Guidelines for a T1 education course. (I am not sure if that's still the case - see next paragraph)

They also train HCPs from across the UK (DSNs, Doctors and Dietitians) to design and deliver their own version of the same course locally. My team at Rugby were trained by them and deliver a course called CARBS-4-1 to patients in the whole of the City of Coventry and Warwickshire district.

Which nurse told you not to worry at a BG of 30? 😱 GP or Hosp?

 

[kim22]

It was the nurse at the hospital, she didn't want me to have extra insulin because it'll cause me to put more weight on.
Everyone seems more bothered about me losing weight than getting my BS levels under control, but how am I supposed to attempt to exercise (or do anything really) when I feel so ill and lethargic!?

 

[MeanMom]

Kim, 30 is WAY too high a level for anybody😱

I would go back to whichever member of your team (GP, DSN whoever) that you feel most comfortable talking too, tell them what you have just typed on here, and say you feel so rotten and ill there is no chance of getting your weight down, so can they please help you get your numbers down FIRST. Even if it's only into the high teens. If they won't help ask, or rather insist, they refer you to someone who will.

It doesn't really matter what 'type' you are - you deserve and have the right to get the care you need. I really hope you manage to get help.

Take care Xx

 

[MeanMom]

Just to add - to quote my copy of 'Think like a Pancreas' (please forgive me if I have made incorrect assumptions)

'For those with type 2 diabetes who are still producing some of their own insulin, the total daily insulin requirement...can vary considerably depending on ...insulin resistance. For instance a person...who weighs more than 113kg might require hundreds of units of insulin in order to manage blood sugar levels'

'For individuals who produce virtually no insulin on their own (including those with type 1), insulin requirements are ...more predictable.'

From the table given in the book, a mostly inactive T1 adult would need .60 to 1.2 total units of insulin per kilo of body weight each day.

Hope this helps you work out how many units you might expect to take in total in a day. It's supposed to be 40-50% basal, 50-60% bolus, according to the book.

Good luck xx