Today I find out I am type 1 diabetic /LADA

[Torres71]

By chance in April this year, at the start of Covid pandemic, my doctor requested I be tested for diabetes, as I was experiencing coldness in my foot. I didn't give it a second thought, as I was used to having 3 monthly blood tests as I take Azathioprine for Chrohn's Disease. The day after the blood test, I had a phone call informing me I was diabetic, as my HBA1C was 49. I was completely shell shocked to say the least & was upset with myself. I then had my HBA1c tested in May & was told it had increased to 64. I attended an appointment with a diabetic nurse & was told I didn't fit in a box of being a type 1 or 2, so she would speak to my GP & seek advice from an endocrinologist. She gave me information on type 2 diabetes. By this point in time, I had lost 17 lbs in weight without changing anything & did feel unwell, suffering from fatigue & chronic brain fog. I knew my Chron's could cause fatigue & I usually worked through it, but I just didn't feel right. I had always looked after myself, eaten well, exercised & not drank alcohol for 6 months. The weeks seemed to be endless, waiting for any news, so I found out that the letter had been dictated, yet 8 weeks later there was no record of it. I saw my diabetes nurse & was given a blood glucose machine. Thankfully, I was refereed to an endocrinologist & had an appointment 3 days later in September. I was put straight on Gliclazide 40mg day & had a variety of blood tests including GAD antibody & C-peptide tests. My HBA1c increased to 68. I discovered Diabetes.uk & found it extremely helpful, as I was trying to research information on diabetes & found other peoples experiences helped me. I was lucky to be referred to a diabetes specialist nurse & I must admit, she is absolutely fantastic in providing support by phoning me every week & has seen me in her clinic this week. I had my Gliclazide increased to 40mg am & 20 mg pm, then 40mg am & 40 mg pm & then 40 mg am & 60 mg pm, as it was not bringing my blood glucose levels down. It was often between 10 to 12.7 before eating breakfast & would increase throughout the day. We were waiting on the antibody test results, which were completed 8 weeks ago. She tried numerous times to get these results & today I received the news, I was a type 1 diabetic, as I tested positive for GAD antibodies & am in the honeymoon period, as I am producing some insulin. So here I am on a new path in this ever changing world, so have been prescribed insulin, which I am due to collect tomorrow. If I was completely honest, I am trying to process it all, I'm shocked, gutted, scared & in one sense relieved I finally have an answer. .

 

[EllieM]

We were waiting on the antibody test results, which were completed 8 weeks ago. She tried numerous times to get these results & today I received the news, I was a type 1 diabetic, as I tested positive for GAD antibodies & am in the honeymoon period, as I am producing some insulin. So here I am on a new path in this ever changing world, so have been prescribed insulin, which I am due to collect tomorrow. If I was completely honest, I am trying to process it all, I'm shocked, gutted, scared & in one sense relieved I finally have an answer. .

Wow, I am very unimpressed by your clinic, as you had classic T1 symptoms (weight loss, rapidly increasing hba1c) and yet they waited 6 months to test for antibodies and then lost the results for 2 months!

However, the good news is that you are now on insulin which is the right treatment for you and should make you feel much better. (And should allow you much more dietary freedom so you can adapt your diet to whatever suits your Crohn's). Modern treatments for T1 are infinitely better than they were when I was first diagnosed and though there's a significant learning curve (as a T1 insulin is your best friend but you need to learn how best to match its amounts with your own particular metabolism), you should start feeling a lot better once you're taking it. And there's always support on these forums if you want to ask any questions or just have a chat.

My single piece of advice for a new T1 on insulin? Always have glucose (or equivalent) to hand. Though it maybe months before you get your first hypo (low blood sugar due to too much insulin) you'll want immediate access to fast acting carbs when you do, as one hypo symptom is confusion and it's really unpleasant to struggle to find carbs when your brain is not working properly. You don't want to try to navigate purchasing sugar when you're out and about and hypo.

Anyway, good luck with the insulin tomorrow.

 

[Marie 2]

You should feel much better with insulin finally! It will allow you to actually utilize the food you are eating properly. And hopefully explain why no matter what you did, you hadn't been improving. It's a steep learning curve at the beginning, but it gets easier.

I agree with @EllieM always, always have a fast glucose source with you, and near the bed where you sleep too. It will eventually happen, and you don't want to be driving around looking for OJ or stumbling to the other end of the house trying to figure out what will be best and what you have available the easiest.

 

[Japes]

... If I was completely honest, I am trying to process it all, I'm shocked, gutted, scared & in one sense relieved I finally have an answer. .

That relief was pretty much my instant reaction to going on insulin, and on being re-diagnosed as LADA 3 years after an initial T2 mis-diagnosis - the relief at having an answer, and knowing it wouldn't matter what I did in the way of meds/diet/exercise to keep it all under control if what was needed was insulin.

 

[Torres71]

Wow, I am very unimpressed by your clinic, as you had classic T1 symptoms (weight loss, rapidly increasing hba1c) and yet they waited 6 months to test for antibodies and then lost the results for 2 months!

However, the good news is that you are now on insulin which is the right treatment for you and should make you feel much better. (And should allow you much more dietary freedom so you can adapt your diet to whatever suits your Crohn's). Modern treatments for T1 are infinitely better than they were when I was first diagnosed and though there's a significant learning curve (as a T1 insulin is your best friend but you need to learn how best to match its amounts with your own particular metabolism), you should start feeling a lot better once you're taking it. And there's always support on these forums if you want to ask any questions or just have a chat.

My single piece of advice for a new T1 on insulin? Always have glucose (or equivalent) to hand. Though it maybe months before you get your first hypo (low blood sugar due to too much insulin) you'll want immediate access to fast acting carbs when you do, as one hypo symptom is confusion and it's really unpleasant to struggle to find carbs when your brain is not working properly. You don't want to try to navigate purchasing sugar when you're out and about and hypo.

Anyway, good luck with the insulin tomorrow.

Thank you so much. It has seemed like an eternity finding out, but at least I know now. I've stocked up fast acting carbs, have been given a new blood glucose machine & will do my best to get & stay well. Thanks again.

 

[Torres71]

You should feel much better with insulin finally! It will allow you to actually utilize the food you are eating properly. And hopefully explain why no matter what you did, you hadn't been improving. It's a steep learning curve at the beginning, but it gets easier.

I agree with @EllieM always, always have a fast glucose source with you, and near the bed where you sleep too. It will eventually happen, and you don't want to be driving around looking for OJ or stumbling to the other end of the house trying to figure out what will be best and what you have available the easiest.

Thank you. I've felt so rotten this year & at least I know why at long last. I'm going to do all I can to improve & feel better. I've stocked up on OJ, have dextrose tablets around the house & even a bag of jelly babies near the bed. I appreciate your advice.

 

[Japes]

Sometimes, @Torres71 you don't really realise how bad you've been feeling until you feel better! I could find a million and one reasons for feeling so awful. But, the day the insulin really began kicking in, and the brain fog and sheer exhaustion from the constant running high blood sugars cleared - oh, wow!

It can take time for levels to go down to where you want them to be once you start with insulin. It's a whole mixture of your team not wanting to take you down too quickly, as that can cause other issues, and also them finding all the right doses for you for now - especially if you are producing some of your own insulin still.

 

[KK123]

Sometimes, @Torres71 you don't really realise how bad you've been feeling until you feel better! I could find a million and one reasons for feeling so awful. But, the day the insulin really began kicking in, and the brain fog and sheer exhaustion from the constant running high blood sugars cleared - oh, wow!

It can take time for levels to go down to where you want them to be once you start with insulin. It's a whole mixture of your team not wanting to take you down too quickly, as that can cause other issues, and also them finding all the right doses for you for now - especially if you are producing some of your own insulin still.

Japes, I was exactly the same. I remember in hospital with DKA being questioned on how I had been in the months before, tired?, no not really I said, just enjoy a two hour nap in the afternoon, lost weight?, yes but I've been exercising a lot, brain fog?, well yes but I'm getting on a bit, weeing a lot?, yes but I've been thirsty because of the hot weather. So many signs that I genuinely had convinced myself were just life or signs of ageing. I was placed on an insulin drip and within one hour my levels had gone from 32 down to 3.4! The nurse went into a panic, rushed off to get me 2 x slices of toast, levels shot up to 16, nurse came back, upped the insulin drip, 30 minutes later straight down to the 2s!!! More toast...and it went on like that all night. I remember the Consultant the next morning expressing his disapproval at the poor nurse exclaiming no wonder it was up and down all night!!! After 3 days of insulin ALL my symptoms disappeared and I felt like a new woman. x

 

[Lynnzhealth]

Thank you so much. It has seemed like an eternity finding out, but at least I know now. I've stocked up fast acting carbs, have been given a new blood glucose machine & will do my best to get & stay well. Thanks again.

I know the feeling. Glad you finally got the results. I have a FreeStyle Libre monitor and sensors, prescribed by my doctor. I was 69 when diagnosed T2. At 71 I had a very serious DKA episode, 4 days in hospital, diagnosed T1. My doctor decided I'd be safer with the monitor/sensors due to my age, almost 73. I keep fast acting carbs on hand, too. Yes, it's quite a shock and a lot for an old brain to absorb. Take care and stay safe.

 

[Lynnzhealth]

Thank you. I've felt so rotten this year & at least I know why at long last. I'm going to do all I can to improve & feel better. I've stocked up on OJ, have dextrose tablets around the house & even a bag of jelly babies near the bed. I appreciate your advice.

I have my favorite Cadbury Dairy Milk bars on hand just in case I have a hypo. I carry one bar, broken in pieces and Dex tabs when I'm out and about. One never knows.

 

[JMK1954]

Chocolate is not the best choice for dealing with a hypo, as because of the fat content it takes longer to digest than orange juice , glucogel, glucotabs, jelly babies etc etc

 

[EllieM]

Chocolate is not the best choice for dealing with a hypo, as because of the fat content it takes longer to digest than orange juice , glucogel, glucotabs, jelly babies etc etc

And, speaking from long experience, it can be a mistake to have something you regard as a treat as emergency hypo food. The urge to eat the fridge is strong when hypo and it's way too easy to overtreat when the carb is something you don't particularly like (glucotabs, ugh....). When it's something you like you need more will power than I've got to avoid eating the whole bar of chocolate instead of a few squares.

 

[Torres71]

Sometimes, @Torres71 you don't really realise how bad you've been feeling until you feel better! I could find a million and one reasons for feeling so awful. But, the day the insulin really began kicking in, and the brain fog and sheer exhaustion from the constant running high blood sugars cleared - oh, wow!

It can take time for levels to go down to where you want them to be once you start with insulin. It's a whole mixture of your team not wanting to take you down too quickly, as that can cause other issues, and also them finding all the right doses for you for now - especially if you are producing some of your own insulin still.

Thank you. I'm looking forward to feeling more like it & get my energy & zest for life back. I got given a new blood glucose & ketone monitor to use, so will be careful.

 

[searley]

That relief was pretty much my instant reaction to going on insulin, and on being re-diagnosed as LADA 3 years after an initial T2 mis-diagnosis - the relief at having an answer, and knowing it wouldn't matter what I did in the way of meds/diet/exercise to keep it all under control if what was needed was insulin.

I was classed t2 for 10 years before reclassified t1/lada. My diagnosis is t1 no mention of lada but I was producing insulin just 2 years ago.

Right through the 10 years nurses,gp's and independent consultants insisted I was classic t1 and if I were their patient the would update the records immediately.

But my consultant even 15 months ago insisted I was t2 and would stays classified that way

Then she gave me another cpeptide test and came back and said I'm now t1

 

[ert]

I was classed t2 for 10 years before reclassified t1/lada. My diagnosis is t1 no mention of lada but I was producing insulin just 2 years ago.

Right through the 10 years nurses,gp's and independent consultants insisted I was classic t1 and if I were their patient the would update the records immediately.

But my consultant even 15 months ago insisted I was t2 and would stays classified that way

Then she gave me another cpeptide test and came back and said I'm now t1

Diagnosis isn't straight forward for everyone. How long have you been treated with insulin?

 

[searley]

Diagnosis isn't straight forward for everyone. How long have you been treated with insulin?

10 years

 

[ert]

10 years

Deterioration onto insulin on diagnosis is a classic sign of type 1.

 

[searley]

Deterioration onto insulin on diagnosis is a classic sign of type 1.

I went o to Insulin within 3 months due to a reaction to metformin. I refused gliclazide. So they put me on insulin

But my consultant insisted I was still a t2 on insulin

 

[Choosehappy]

Japes, I was exactly the same. I remember in hospital with DKA being questioned on how I had been in the months before, tired?, no not really I said, just enjoy a two hour nap in the afternoon, lost weight?, yes but I've been exercising a lot, brain fog?, well yes but I'm getting on a bit, weeing a lot?, yes but I've been thirsty because of the hot weather. So many signs that I genuinely had convinced myself were just life or signs of ageing. I was placed on an insulin drip and within one hour my levels had gone from 32 down to 3.4! The nurse went into a panic, rushed off to get me 2 x slices of toast, levels shot up to 16, nurse came back, upped the insulin drip, 30 minutes later straight down to the 2s!!! More toast...and it went on like that all night. I remember the Consultant the next morning expressing his disapproval at the poor nurse exclaiming no wonder it was up and down all night!!! After 3 days of insulin ALL my symptoms disappeared and I felt like a new woman. x

Same here!