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Antibody negative type 1

M

mod84

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Hi

Hoping someone in here will have some experience or advice as the diabetic service we have is horrific.

Background story. Hubby diagnosed as diabetic July last year, I got him to go to docs as I’m aware of diabetic symptoms (years of working in hospital) he had all the symptoms getting more extreme. Anyway hbac1 came back at 148, doc sent him into hospital to be seen. He was acidotic and had ketones 4! He was given stat dose insulin and to return next day to see diabetic nurses. One nurse wanted to diagnose him as type 2 due to his BMI (he’s never been skinny even when toned up etc as not his build and at this point had lost 3 stone in 1 month) but registrar disagrees and diagnoses type 1 due to results and the way he was. We haven’t had much help from team since then unless chased. He’s currently on humilin I 18 units morning and night. He has humilog to have several times throughout day. Nearly a year on BM’s still aren’t stable and quite high in morning. He’s finally seen a diabetic consultant (first time) and he has went through some things, increasing insulin at night to try n stabilise with being high in morning still. While there he ordered blood tests. Letter just came and hbac1 is 79 (been slowly going down) but the puzzling thing is it has ‘antibody negative unlikely this is type 1 diabetes’ no explanation of what this means or where will go from this? the fact he’s still not hugely stable on insulin I’d be surprised for them to switch to type 2? But just wondering if anyone else type 1 has had antibody negative? I can’t find much info on web apart from that normally tests would be done before insulin started. I’m trying to get in touch with team to explain letter more as that one line isn’t much but as I say our team isn’t the best at support so just wondering if anyone had any experience of this? (They’re still keeping him on insulin I assume as nothing said about changing that)

Sorry for long post, Hope makes sense
 
mod84 said:
Hi

Hoping someone in here will have some experience or advice as the diabetic service we have is horrific.

Background story. Hubby diagnosed as diabetic July last year, I got him to go to docs as I’m aware of diabetic symptoms (years of working in hospital) he had all the symptoms getting more extreme. Anyway hbac1 came back at 148, doc sent him into hospital to be seen. He was acidotic and had ketones 4! He was given stat dose insulin and to return next day to see diabetic nurses. One nurse wanted to diagnose him as type 2 due to his BMI (he’s never been skinny even when toned up etc as not his build and at this point had lost 3 stone in 1 month) but registrar disagrees and diagnoses type 1 due to results and the way he was. We haven’t had much help from team since then unless chased. He’s currently on humilin I 18 units morning and night. He has humilog to have several times throughout day. Nearly a year on BM’s still aren’t stable and quite high in morning. He’s finally seen a diabetic consultant (first time) and he has went through some things, increasing insulin at night to try n stabilise with being high in morning still. While there he ordered blood tests. Letter just came and hbac1 is 79 (been slowly going down) but the puzzling thing is it has ‘antibody negative unlikely this is type 1 diabetes’ no explanation of what this means or where will go from this? the fact he’s still not hugely stable on insulin I’d be surprised for them to switch to type 2? But just wondering if anyone else type 1 has had antibody negative? I can’t find much info on web apart from that normally tests would be done before insulin started. I’m trying to get in touch with team to explain letter more as that one line isn’t much but as I say our team isn’t the best at support so just wondering if anyone had any experience of this? (They’re still keeping him on insulin I assume as nothing said about changing that)

Sorry for long post, Hope makes sense
Click to expand...

Hiya,

Sorry to hear of the troubles your husband is facing. Whilst I don't have the answers as I am in much of the same position, I recently posted my issues on this thread (which may be of some help):

https://www.diabetes.co.uk/forum/threads/frustrated-and-upset.164593/
 
About a quarter of all T1s are antibody negative. The test does not look for all antibodies.
 
Hi. Did your husband have a c-peptide test as well? This is more important than the antibody test but sadly many GPs etc don't realise this. Viruses can cause beta cell death as well as antibodies (I think that caused mine as I had a high white cell count around the time of diagnosis but negative GAD done privately). The c-peptide test will strongly indicate type by defining the level of insulin output and if low then insulin will be needed for life the same as any other T1.
 
Daibell said:
Hi. Did your husband have a c-peptide test as well? This is more important than the antibody test but sadly many GPs etc don't realise this. Viruses can cause beta cell death as well as antibodies (I think that caused mine as I had a high white cell count around the time of diagnosis but negative GAD done privately). The c-peptide test will strongly indicate type by defining the level of insulin output and if low then insulin will be needed for life the same as any other T1.
Click to expand...


They haven’t said which tests have exactly been done (literally a small line on letter but will ask gp exactly which ones) he does have to do a urine test after fasting carbs which not sure which this is either? I’ll take a photo of forkn
 
SB.25 said:
Hiya,

Sorry to hear of the troubles your husband is facing. Whilst I don't have the answers as I am in much of the same position, I recently posted my issues on this thread (which may be of some help):

Thanks for reply. Sorry you’re having same. It’s very frustrating as it’s a lot to take on and I think support is needed. Every contact we’ve had I’ve had to push for. I’ll have a read through your post
Click to expand...
 
Hi, I found this online :-https://labtestsonline.org/tests/islet-autoantibodies-diabetes which could be helpful.
Another type of diabetes is called LADA and many people are misdiagnosed as type 2. T
Hospital and GP's surgeries have a duty of care and it looks like hubby isn't receiving it, I would definitely press for more information. All the best.

Latent Autoimmune Diabetes in Adults is called LADA for short. It's a different form of diabetes.
What is LADA?

It's a type of diabetes which seems to straddle Type 1 and Type 2 diabetes. Bits of it are more like Type 1, and other bits are more like Type 2. That's why some people call it Type 1.5 diabetes or Type 1 ½ diabetes.

It’s not actually classified as a separate type of diabetes at the moment, but there's some medical research going on to try and pinpoint exactly what makes it different from Type 1 and Type 2 diabetes.

What are the symptoms of LADA?
The symptoms of LADA are the same as Type 1 and Type 2 diabetes:

  • passing urine a lot
  • feeling very thirsty
  • getting really tired
  • getting thinner.
But they generally come on much slower than they do with Type 1, over months rather than weeks. And the symptoms are more obvious and often come on more quickly than you’d expect with Type 2.

And whereas being overweight is a major risk factor for Type 2 diabetes, people with LADA tend to have a healthy weight.

Diagnosing LADA
Diagnosing LADA can be difficult, and some people are diagnosed with having Type 2 diabetes by mistake.

If you have LADA, you'll usually have antibodies in your blood that are usually found in people with Type 1. These are found using something called a GADA antibody test.

It's usually diagnosed in people aged 30 to 50 years old.

Treating LADA
LADA is treated like Type 2 diabetes. You’ll usually start taking oral medication, usually metformin, and go on to insulin as your blood sugar levels start to go up. You tend to go on to insulin much quicker than you would normally if you had Type 2 diabetes.

But there isn’t a definite, agreed way of managing LADA yet.

Action LADA is looking at both how common LADA is and how best to look after it. Until this study shares its findings, most healthcare professionals agree that the aim of treatment is to keep insulin being produced for as long as possible. So it’s recommended that insulin treatment is started early.

The research is also looking at whether anything can be done to stop LADA progressing to the point where someone needs insulin.

LADA isn’t recognised as a separate type of diabetes yet. So when it comes to treatment, the most important thing is to take whatever medication helps you manage your blood sugar levels properly. That will help keep you well in the short term and help avoid complications of diabetes in the future.

Remember you can always speak to your healthcare team.


Having LADA or Type 1.5 diabetes
"Being LADA is a bit harder for the medical profession to deal with. As there is a lot less knowledge about in terms of how it is caused."
 
Last edited:
Hi @mod84 and welcome,
The following is based on my own experience as a TID, not as medical information or advice:
Do you not love it when doctors give confusing messages and cannot communicate properly?
Whilst they posture and pontificate the first priority is likely to be that your huband is able to keep his blood sugar levels (bsls) as near as possible to normal.
At present that appears to be via insulin. there may be other help available once diagnosis is clarified but wevwork with what is available and likely to be effective for now.
You and he may wish to avail yourselves of information on the Home page under Type 1Diabetes and Living with Diabetesto see what diet options there are, what acceptable blood sugar ranges are and perhaps to refresh yourselves about hypoglycaemia.
Whilst we cannot provide medical advice or opinion we may be able to help by suggesting how we have dealt with bsl issues, what diets work for bsl control and for weight control, and further information about diagnosis.
Day by day allows the future to arrive when it will.
Best Wishes and please keep asking questions, that is how we all learn and no question is too simple or basic, we have all been there at sometime and you both can learn from our mistakes !!!!
 
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