LADA diagnosis

[AmandaPanda]

Hi all. I've just received my diagnosis of LADA today. My endocrinologist, who I thought was very good when I first saw him, sent me this diagnosis in a letter with no follow-up.
He has said to my GP to keep me on my current medication (Metformin and Gliclazide) basically, until it stops working.
Is this the right thing to do? I'm annoyed there's no follow-up to see him so I can't talk to him about it all. I have a short synacthen test booked for next Weds as my cortisol is low, so maybe he's waiting till after that to decide what to do, but I'm just guessing...

 

[Inka]

Glad you’ve got clarity about your diagnosis now @AmandaPanda 🙂 How are your blood sugars and are you able to eat normally?

Any decision about meds is up to you, but personally I wouldn’t take Gliclazide in that situation.

 

[AmandaPanda]

Glad you’ve got clarity about your diagnosis now @AmandaPanda 🙂 How are your blood sugars and are you able to eat normally?

Any decision about meds is up to you, but personally I wouldn’t take Gliclazide in that situation.

Hi Inka
I'm on immunosuppressants which seen to be helping keep my numbers fairly normal-ish. No really high highs, but I've been having a few hypos. Pretty much one a day. I've already halved the Gliclazide from 80mg to 40mg, but thinking of stopping it altogether.

Why would you say no to Gliclazide?

 

[Inka]

Again, this is just my opinion/thoughts as a non-medical person @AmandaPanda and what I personally would do. Your decisions are yours alone. For me, I wouldn’t take Gliclazide because it can squeeze the remaining life out of the beta cells quicker. I would probably take Metformin and, if necessary, small doses of insulin.

That’s just me though and in no way medical advice, only what I’d do.

 

[AmandaPanda]

Again, this is just my opinion/thoughts as a non-medical person @AmandaPanda and what I personally would do. Your decisions are yours alone. For me, I wouldn’t take Gliclazide because it can squeeze the remaining life out of the beta cells quicker. I would probably take Metformin and, if necessary, small doses of insulin.

That’s just me though and in no way medical advice, only what I’d do.

Thank you Inka, I appreciate your opinion. That makes sense, knowing how Gliclazide works.

 

[mashedupmatt]

I'm with @Inka on this one - the Gliclazide is probably doing nothing to help and can also make you hypo - I'm not medically trained so just my opinion

 

[everydayupsanddowns]

Glad to hear you have some clarity over your diabetes type @AmandaPanda but sorry that you feel you’ve been slightly left alone with it without the opportunity to chat things through.

LADA is a bit of an oddity, in that some medical professionals don’t use it, and there are a few variations on what some different HCPs understand it to mean.

LADA is most commonly used to describe T1 developing more slowly later in life, where the autoimmune attack on the beta cells in the pancreas happens over a longer period of time (perhaps several years) rather than ‘classic’ T1 than can come on dramatically in weeks or months.

There is some research that suggests introducing insulin earlier can help retain functioning beta cells longer (because some of their ‘duties’ are being done by exogenous insulin rather than the few remaining ones having to work double-shifts). This can mean that levels are slightly easier to manage.

On the other hand some T1s in the ‘honeymoon’ period find the insulin sputtering out of their remaining beta cells is a bit irregular and even inconvenient as it can add extra imponderables into the mix depending on whether it shows up or not.

Unfortunately diabetes tends to be like this. There are always multiple ways it *might* behave, and all you can do is try to understand how YOUR diabetes works, and the best apporaches for you.

 

[AmandaPanda]

I'm with @Inka on this one - the Gliclazide is probably doing nothing to help and can also make you hypo - I'm not medically trained so just my opinion

Thanks Matt. All opinions noted!!

 

[AmandaPanda]

Glad to hear you have some clarity over your diabetes type @AmandaPanda but sorry that you feel you’ve been slightly left alone with it without the opportunity to chat things through.

LADA is a bit of an oddity, in that some medical professionals don’t use it, and there are a few variations on what some different HCPs understand it to mean.

LADA is most commonly used to describe T1 developing more slowly later in life, where the autoimmune attack on the beta cells in the pancreas happens over a longer period of time (perhaps several years) rather than ‘classic’ T1 than can come on dramatically in weeks or months.

There is some research that suggests introducing insulin earlier can help retain functioning beta cells longer (because some of their ‘duties’ are being done by exogenous insulin rather than the few remaining ones having to work double-shifts). This can mean that levels are slightly easier to manage.

On the other hand some T1s in the ‘honeymoon’ period find the insulin sputtering out of their remaining beta cells is a bit irregular and even inconvenient as it can add extra imponderables into the mix depending on whether it shows up or not.

Unfortunately diabetes tends to be like this. There are always multiple ways it *might* behave, and all you can do is try to understand how YOUR diabetes works, and the best apporaches for you.

Thanks for the info. It's all appreciated. I'm keen to stop the Gliclazide, and I remember you mentioned before about retaining the beta cells by taking insulin. This is exactly why I need to speak to the specialist!! After my blood test I'll be nagging his poor secretary 🙂

 

[everydayupsanddowns]

If you are willing to take on the technical language of a research paper, you might find this overview helpful?

Latent autoimmune diabetes in adults: a focus on β-cell protection and therapy - PMC

Latent autoimmune diabetes in adults (LADA) is a heterogeneous disease sharing some phenotypic, genetic, and immunological features with both type 1 and 2 diabetes. Patients with LADA have a relatively slow autoimmune process and more residual islet ...

pmc.ncbi.nlm.nih.gov

 

[AmandaPanda]

If you are willing to take on the technical language of a research paper, you might find this overview helpful?

Latent autoimmune diabetes in adults: a focus on β-cell protection and therapy - PMC

Latent autoimmune diabetes in adults (LADA) is a heterogeneous disease sharing some phenotypic, genetic, and immunological features with both type 1 and 2 diabetes. Patients with LADA have a relatively slow autoimmune process and more residual islet ...

pmc.ncbi.nlm.nih.gov

Thanks. I seem to be better informed than most drs when it comes to new research!

 

[AmandaPanda]

My GAD antibodies were over 2000 when tested a couple of weeks ago, BTW...

 

[MrsAA]

My GAD antibodies were over 2000 when tested a couple of weeks ago, BTW...

Our son has just been diagnosed as LADA, he’s just on metformin currently, his HbA1C was 96, he went to GP as he was drinking a lot and peeing a lot…he was sent to A&E because he had ketones…they stabilised that and he’s been ok on just the metformin…think he’s due another blood test at the end of this month

 

[Leadinglights]

Our son has just been diagnosed as LADA, he’s just on metformin currently, his HbA1C was 96, he went to GP as he was drinking a lot and peeing a lot…he was sent to A&E because he had ketones…they stabilised that and he’s been ok on just the metformin…think he’s due another blood test at the end of this month

Oh dear I bet that was a bit of a shock.
It would be worth you (and him) looking through some of the recent threads from people recently diagnoses so you know what he should be asking for in terms of an ongoing treatment plan.
If the diagnosis is confirmed it is unlikely that metformin will be sufficient and he needs to keep a good eye on his blood glucose and ketone levels and go to A&E if he has ketones again. I assume he has been given to means to check for both

 

[MrsAA]

Oh dear I bet that was a bit of a shock.
It would be worth you (and him) looking through some of the recent threads from people recently diagnoses so you know what he should be asking for in terms of an ongoing treatment plan.
If the diagnosis is confirmed it is unlikely that metformin will be sufficient and he needs to keep a good eye on his blood glucose and ketone levels and go to A&E if he has ketones again. I assume he has been given to means to check for both

He’s currently paying for CGM but they are so expensive, he’s done the free trials, I’ve just ordered one on a free trial to send to him…his DN seems very on the ball so hopefully she’s given him everything he needs…he’s aware that he will no doubt need to go on insulin at some point though

 

[Inka]

How old is your son @MrsAA ? As you’ve probably gathered from this thread and elsewhere, many consultants don’t use the term ‘LADA’ and just refer to it as Type 1. Type 1 comes on more slowly in adults. It used to be thought that Type 1 was just something children got, but we now know more adults than children get it. If it’s confirmed your son is Type 1, he should be entitled to CGMs on prescription.

Do let us know how his blood test goes at the end of this month.

 

[MrsAA]

How old is your son @MrsAA ? As you’ve probably gathered from this thread and elsewhere, many consultants don’t use the term ‘LADA’ and just refer to it as Type 1. Type 1 comes on more slowly in adults. It used to be thought that Type 1 was just something children got, but we now know more adults than children get it. If it’s confirmed your son is Type 1, he should be entitled to CGMs on prescription.

Do let us know how his blood test goes at the end of this month.

He’s 40 and I think they referred to it as type 1.5

 

[AmandaPanda]

He’s 40 and I think they referred to it as type 1.5

That's what the endocrinologist told me- type 1½. From what I've read on here and other places, it's basically type 1 for adults, with a slower degeneration of the pancreas, but it really should be treated like type 1. That's how I understand it

 

[Inka]

He’s 40 and I think they referred to it as type 1.5

You’ll see from @AmandaPanda ‘s avatar and others that Type 1.5/LADA are often used interchangeably (if they’re used at all). It can be very confusing! My consultant uses Type 1.5 to mean something between Type 1 and Type 2. I can’t remember exactly what she said but it was something about it being a bit like Type 1 but with insulin resistance (usually a Type 2 feature).

 

[SB2015]

It is good that you have clarity over your diagnosis now @AmandaPanda with confirmation about the GAd antibodies.

I was told I had LADA at the start but was then referred to as having T1. This helps as it gives access to sensors and pumps, whereas the use of others terms such as T1.5 or LADA is used in some places as a reason to prevent access to the latest tech.

The approach used by consultants varies and our needs for insulin varies too. I was put on insulin straight away with both basal (background) and bolus (quick acting for meals). This gave me flexibility to eat what I wanted when I wanted. As @everydayupsanddowns says the Honeymoon Period during which my remaining beta cells decided to join in sometimes was frustrating. They gave no warning, had a bit of a rest with me injecting insulin, then joined in.

It will be interesting to hear what happens after your next blood test, and what decisions they make.