Weird or what?

[SueJB]

Morning all,
I've just got back from my health centre having had a quick blood pressure test, high 150/90
Anyway, while I was there, I asked the nurse to see if I had had a GAD and c-peptide test. She confirmed what I've been thinking all along. NO!! they haven't been done.
She told me that diagnosis of diabetes is now done on the results of HbA1c results. Here are mine
Jun 13 = 5.5%
March 16 = 6.0%
July 16 = 6.4%
Aug 17 = 13.0% ( this is when I had to go to the hospital and go on a saline drip, I'd felt fine but was put on Levemir and Novorapid)
Jan 18 = 5.7% (still on insulin but with a weight gain of 7k since Aug and with a low carb diet)

After that background ramble the question is, should I press the secondary provider, ie at the hospital to have these tests done?
To be honest, I'd been pigging out all through August as it's the month of my birthday, husband's too, our anniversary and our holiday
Look forward to your thoughts

 

[Neoncat]

Would it change anything? If it would change how you manage your treatment (for example you think there is a chance you might be type 2 rather than 1) then yes. Otherwise you will just be subjecting yourself to another test (and let's face it we do enough of those already!). I have never had these tests done but I turned up at hospital in DKA with blood sugar in the high 30's and all of the classic type 1 symptoms so it was pretty clear what was wrong with me!

 

[Bluetit1802]

If you never had those tests and didn't have the usual symptoms associated with T1 they can't say whether you are T1 or T2.
In my opinion it matters. For one reason, you may not need injected insulin. The weight gain on a low carb diet could suggest too much circulating insulin depositing fat in your fat cells.

You need to press for these tests. I'm not sure where, but I would start with whoever is in charge of your diabetes care.

 

[KK123]

I think it is important to know what type you are, if you are type 1 you know that that's it, all you can do is manage it primarily with insulin forever and minimise the health risks with lifestyle, if you are type 2 you know you are in with a chance of staving off any effects or even halting it in its tracks, etc. Also I want to know because of any associated risks of my children getting diabetes (albeit that might be small). Having said that, I too had a sky high blood sugar on diagnosis, ketones over 4, ended up on a drip, fitted the profile of type 1, had the C peptide and antibodies tests done (the GAD coming back as 'weak positive' and.......still inconclusive!!!!! I'm not sure I will ever know.

 

[rmz80]

Christ; on reading your original post I bet that’s what happened to me. Rather than spend £80 on blood tests they stuck a label on my notes “type 1”

The point is I started a diet which on losing some weight I realised I must be type 2 as my need for insulin dropped by the same ratio for each kg of weight lost. I am now free of it.

A type 1 would not really respond to diets in this way.

 

[SueJB]

Would it change anything? If it would change how you manage your treatment (for example you think there is a chance you might be type 2 rather than 1) then yes. Otherwise you will just be subjecting yourself to another test (and let's face it we do enough of those already!). I have never had these tests done but I turned up at hospital in DKA with blood sugar in the high 30's and all of the classic type 1 symptoms so it was pretty clear what was wrong with me!

Thanks. I really would like to know as my strong suspicion is that the insulin ie the fat hormone is causing my weight increase.

 

[SueJB]

If you never had those tests and didn't have the usual symptoms associated with T1 they can't say whether you are T1 or T2.
In my opinion it matters. For one reason, you may not need injected insulin. The weight gain on a low carb diet could suggest too much circulating insulin depositing fat in your fat cells.

You need to press for these tests. I'm not sure where, but I would start with whoever is in charge of your diabetes care.

Thanks, my sentiments exactly. I've got an appointment to see the diabetic consultant in March. My health centre said it was for the hospital to do it. I'd prefer not to take insulin as long as I can. I can see the results of it around my waist and other now fatty bits

 

[SueJB]

I think it is important to know what type you are, if you are type 1 you know that that's it, all you can do is manage it primarily with insulin forever and minimise the health risks with lifestyle, if you are type 2 you know you are in with a chance of staving off any effects or even halting it in its tracks, etc. Also I want to know because of any associated risks of my children getting diabetes (albeit that might be small). Having said that, I too had a sky high blood sugar on diagnosis, ketones over 4, ended up on a drip, fitted the profile of type 1, had the C peptide and antibodies tests done (the GAD coming back as 'weak positive' and.......still inconclusive!!!!! I'm not sure I will ever know.

Thanks, too old for kids but I know what you mean. I do think it's important to know definitively

 

[SueJB]

Christ; on reading your original post I bet that’s what happened to me. Rather than spend £80 on blood tests they stuck a label on my notes “type 1”

The point is I started a diet which on losing some weight I realised I must be type 2 as my need for insulin dropped by the same ratio for each kg of weight lost. I am now free of it.

A type 1 would not really respond to diets in this way.

I'd lost 17k over 2 yrs deliberately and though that was a nice slow pace, since insulin the gain and with no change in my eating habits seems to me to indicate the wrong diagnosis. I'd pay privately to have it done but I'll press for the NHS to do it. I've paid in for so many years which sounds like I'm complaining which in a way I suppose I am. On you still on insulin?

 

[SueJB]

Christ; on reading your original post I bet that’s what happened to me. Rather than spend £80 on blood tests they stuck a label on my notes “type 1”

The point is I started a diet which on losing some weight I realised I must be type 2 as my need for insulin dropped by the same ratio for each kg of weight lost. I am now free of it.

A type 1 would not really respond to diets in this way.

undiagnosed type 1 does cause weight loss though

 

[rmz80]

undiagnosed type 1 does cause weight loss though

Your right I lost 1st 8lb.before been rushed to hospital
But its starting a diet once you start using insulin that I guessed the reason for the sharp drop in need for insulin for every kg lost.
It was if the insulin I was on was only needed for my excess weight above whats called "lean body mass" i.e. the insulin resistance of cells containing fat

 

[Circuspony]

Definitely get the tests done. If they are positive then you'll know for certain. The hospital ran mine.

 

[Daibell]

HI. If you have a low-carb diet but still need the insulin then it's reasonable to assume you are T1. This might not be true if you were an in-diagnosed T2 for a long time which damaged your beta cells hence you now need to be treated the same as T1. I must agree that your weight gain is also a pointer to T2 with some of your own insulin production. A GAD test might show you have antibodies but the test becomes more unreliable as time elapses after diagnosis so any result might not be useful. A c-peptide will show whether your own insulin output is high (T2'ish) or low (T1'ish) and that test might guide you. I have the opposite problem having been labelled T2 by ignorant GPs despite being stick thin, lost weight unexpectedly and high BS and 12% HBA1C. After many years and arguments with the GP on the complete set of tablets I was put onto MDI which was a relief but I'm still listed as T2. I did have GAD and c-peptide done privately. GAD was negative done years after diagnosis and my c-peptide was low. I found the latter result re-assuring that I was right and my GP was wrong. I'm still thin on my low-carb diet.

 

[rmz80]

This is an (simplified) example of what I reasoned about telling if your t1 or t2 from a diet.
(It does help in this example if you are being treated with insulin not tablets)

A type 2:
You weigh 80kg and your insulin need is 10units
Your lean body mass is calculated as 70kg

You lose 5kg to 75kg and your insulin need drops to 5 units (i.e half. The insulin needed is just working on the excess weight from lean body mass, the rest is handled by pancreas)

Versus type 1
You weigh 80kg and your insulin need is 10units
You lose 5kg to 75 kg and your insulin need drops to 9 units (ratio 75/80; i.e. the insulin is needed for all the body because you not producing any)

 

[SueJB]

Your right I lost 1st 8lb.before been rushed to hospital
But its starting a diet once you start using insulin that I guessed the reason for the sharp drop in need for insulin for every kg lost.
It was if the insulin I was on was only needed for my excess weight above whats called "lean body mass" i.e. the insulin resistance of cells containing fat

Hi I was trying to lose weight and did successfully for 2 yrs and I did it because I was getting blobby, not obese just cuddly and I was overweight. I do not want to be on insulin unnecessarily as putting on the 17 k I diligently lost seems to be doing that. You can understand then why I'd like to find out what type diabetes I have and not take insulin

 

[SueJB]

This is an (simplified) example of what I reasoned about telling if your t1 or t2 from a diet.
(It does help in this example if you are being treated with insulin not tablets)

A type 2:
You weigh 80kg and your insulin need is 10units
Your lean body mass is calculated as 70kg

You lose 5kg to 75kg and your insulin need drops to 5 units (i.e half. The insulin needed is just working on the excess weight from lean body mass, the rest is handled by pancreas)

Versus type 1
You weigh 80kg and your insulin need is 10units
You lose 5kg to 75 kg and your insulin need drops to 9 units (ratio 75/80; i.e. the insulin is needed for all the body because you not producing any)

Thanks, that's a bit clearer for type 2 but not type 1.
If type 2
I'm now 57k and my present insulin need (as I have been told by the specialists) is 6 or 8 or 10, you see they're not sure but lets go with 6 which is what I try and keep to. So my lean body mass is 51k which is exactly what I was before they put me on insulin. If I lost 5k my insulin would drop to 1 unit. Doesn't that sound weird?
If type 1
Present 57k needs 6units =51 so how much would I need to lose? 51/57 would be right but I can't work out how many units of insulin I would need, can you help?

 

[catapillar]

@SueJB youve been diagnosed with type 1, correct? Your medical records say you have type 1 diabetes?

NICE guidelines actively discouraged "routinely" running cpeptide or antibody tests on adults diagnosed with type 1 - https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#diagnosis

That's because neither a cpeptide test, nor an antibody is definitive as to type of diabetes. Cpeptide will tell you if you're producing any insulin, but if you are producing any it won't tell you why, it could be because you're type 1 and your immune system has killed off your beta cells, or it could be because you're type 2 and your beta cells are worn out from hyperinsulimia. A GAD test is definitive if it's positive. But 25% do type 1 diabetics test negative for antibodies, that doesn't make them not type 1.

NICE guidelines do suggest considering cpeptide and antibody testing in an adult with type 1 if there are some unusual features, such as:

• The patient is over 50 at diagnosis with diabetes
• The patient has a BMI of 25 or more
• There has been a slow evolution of hyperglycaeimia or long prodome.

If you have any of those unusual features, then ask for the tests.

Or alternatively, you're being treated as a type 2, but need confirmation of type 1 to get access to type 1 treatments, like a pump.

 

[SueJB]

@SueJB youve been diagnosed with type 1, correct? Your medical records say you have type 1 diabetes?

NICE guidelines actively discouraged "routinely" running cpeptide or antibody tests on adults diagnosed with type 1 - https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#diagnosis

That's because neither a cpeptide test, nor an antibody is definitive as to type of diabetes. Cpeptide will tell you if you're producing any insulin, but if you are producing any it won't tell you why, it could be because you're type 1 and your immune system has killed off your beta cells, or it could be because you're type 2 and your beta cells are worn out from hyperinsulimia. A GAD test is definitive if it's positive. But 25% do type 1 diabetics test negative for antibodies, that doesn't make them not type 1.

NICE guidelines do suggest considering cpeptide and antibody testing in an adult with type 1 if there are some unusual features, such as:

• The patient is over 50 at diagnosis with diabetes
• The patient has a BMI of 25 or more
• There has been a slow evolution of hyperglycaeimia or long prodome.

If you have any of those unusual features, then ask for the tests.

Or alternatively, you're being treated as a type 2, but need confirmation of type 1 to get access to type 1 treatments, like a pump.

Thanks so much Catapillar for the link and for your comments. You're sort of right!. I wouldn't say I've been diagnosed with type1 but rather I've been labelled. I know I'm starting to sound like a stuck record but if they haven't done the full gamut of tests they don't KNOW but rather it's an educated guess based on experience. Well that's not good enough for me and I'm going to challenge them. To be honest, I thought that anyone even remotely believed to have any form of diabetes would automatically undergo these tests so the results can sensibly inform treatment. Can you tell me where you found the 25% figure?

I'll have a read of the NICE guideline although I don't know what my BMI is right now, I'll find out. I meet the other 2 criteria so again, thanks. I really think I might need to be armed with all the facts to get this done

 

[catapillar]

Can you tell me where you found the 25% figure?

It's a pretty widely acknowledged fact - https://www.diabetes.co.uk/gad-antibody-test.html

Type 1 is an auto immune disease. It happens when your immune system takes against your beta cells and kills them off. You can confirm that that autoimmune kill off has happened by finding the antibodies that killed off the beta cells. There are about half a dozen identified antibodies. That's why the NICE guidelines provide that if antibody tests are run, they shouldn't just be testing for GAD, at least one of the other identifies antibodies should be tested for at the same time to reduce false negatives.

But 25% of type 1s are antibody negative. Either because the antibodies that killed off their beta cells haven't yet been identified as causing type 1. Or because once all the beta cells are dead, there's nothing left for the antibodies to do, so they disappear before the test is done.