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LADA diagnosis - after advice from others

S

SareN

Active Member
Messages
44
Type of diabetes
LADA
Treatment type
Insulin
so I just had the news that my antibody test was positive so the indication is type 1, I presume slow onset. I think she said my antibody result was 20 and apparently although positive its low positive!? (She referred to me as rare!)
I have spent lockdown eating low carb (pretty much under 20g per day plus lots of exercise) and it has been so challenging. Although numbers have been single digits, I have started to see more 8's and 9's recently whereas before there were lots of 5's and 6's. HBA1C result I had two weeks ago is 6.8% (down from 11.7% in February)
its taken so long to get to even talk to anyone so a part of me is just so relieved to have some answers....the other part of me is naturally sad at the diagnosis.
I just spoke to a nurse and thankfully I can go in and see her on Monday. She wants me to start eating a normal level of carbs again so she can see what is really going on. I will do this but a part of me is petrified of seeing the big numbers again and feeling rubbish. She said she can't give insulin without seeing the figures but I feel insulin is what I need long term and to try and find some level of normality ever again.
I have spent a lot of this morning in tears.....three months after initial diabetes diagnosis, its felt like such a long wait to get answers after what had already been a turbulent few years with not feeling myself and having two miscarriages.
Just after some reassurance from LADA/type 1 people out there that life can be happy again after a diagnosis and that insulin isn't the end of the world.
Also any idea what will happen at this appointment on Monday or any questions I should be asking?
Thanks in advance
Sarah
 
SareN said:
Just after some reassurance from LADA/type 1 people out there that life can be happy again after a diagnosis and that insulin isn't the end of the world.
Click to expand...
Insulin is not the end of the world, in fact it'll be what keeps you alive when all your beta cells do die off.
Many of us have been diabetic for years and whilst it can be very tough at times, it can be in a pain the ****, its what keeps us alive, if not for insulin I would've been dead 40 years ago.
I'm happy most of the time if it helps (but heck who is happy all the time - general life gets in the way!) and live a relatively normal life (ok, I have aspergers as well and am a big introvert so my 'normal' life might not quite be the same as others :))

There is also a lot more cool tech available now, you shoulda seen what was around 40 years go - home blood testing didn't exist, injections were with some metal and glass contraption with a humungous needle, and there was certainly no way to research stuff as there was no internet - all you had was what the docs knew at the time (not much) - so yeah all sorts of cool tech now to help (cool tech that has certainly been a game changer)
 
SareN said:
Just after some reassurance from LADA/type 1 people out there that life can be happy again after a diagnosis and that insulin isn't the end of the world.
Click to expand...
I can assure you life can definitely be happy again (albeit with a bit more frustration than before), and it definitely isn't the end of the world!
It takes some (well, quite a lot) getting used to but I don't feel much different than before diabetes. Except better than in the last months before diagnosis, when I must have had high blood sugars for months without knowing.

I've been on insulin for over 3 years now, and I like it a lot better than the tablets and diet I was on for a short while when they assumed T2. Insulin gave me the tools to DO something and work towards better blood glucose. On the tablets (which didn't do much for my diabetes) I could only stupidly sit and watch what my meter said, hoping it wouldn't go higher and come down again. On insulin, when I see a high number, I think 'woops, didn't get my dose right, let's have some insulin and correct the problem'.

I'll have my fingers crossed transitioning to insulin will be a relatively smooth ride for you!
 
Hopefully your nurse will see high numbers with the normal carbs and know what to do. She should start you on Basal/Bolus insulin (two insulins per NICE Guidance) and you may only need a small dose to start with. You may be offered a choice of pen types. I went for the replaceable cartridge type as it's more Eco then the throw-away ones. The nurse may start you on fixed doses of the Bolus (meal-time insulin) and change you to carb-counting later (where you adjust dosage based on carb content of that meal). My DN knew I was a bit of a nerd and started me on carb-counting from the start. It's possible the nurse will just offer you tablets for a while such as Gliclazide which I was on. They will work for a while but insulin will be needed later. As others have said insulin is a nuisance at times but gives you complete control.
 
Hi @SareN .

Another LADA checking in. Also described as "rare (and unusual)" though by my consultant! The DSNs were too busy flapping about other things to worry about whether I was rare or not as I'd been referred to the clinic by my GP after 3 months of ever-increasing meds with absolutely no effect on my ever-increasing blood sugars and my ketones were at such a level the nurses wanted to hospitalise me on the spot but I managed to dodge that one! So, I had a bit of an over-exciting time at that stage so I may not be the best one to ask about what to expect on Monday.

Whilst I had a bit of a panic about managing the insulin regime, the joy of getting a proper diagnosis and the correct treatment completely over-rode it all. 2.5 years down the line I far prefer LADA and being on insulin than a mis-diagnosed T2 being blamed for not trying hard enough with diet and exercise with meds that clearly did not work when they stopped working after 2 years. Plus, the ever restricting diet and increasing amounts of exercise were wearing me out. And getting me down. Much happier now.
 
Thanks everyone really appreciate the positive comments. I did say to her that I wasn't prepared to go on any other medication other than insulin as I want to try for a baby and know i will end up on insulin if pregnant and want a plan that is long term not a temporary fix.
I had glicazide initially but with the very low carb diet my numbers were going low so was changed to metformin.
I wouldn't have rushed to do low carb but because I had no access to any support due to lockdown (GP surgery was useless, just told me there was nothing they could say to make things better and I just had to wait my consultants appointment)I felt its all i could do pending medical advice.
I'm a bit of a need with heath/diet too, always been an interest of mine....i have an app that tells me what macro and micro nutrients I'm getting from food so hopefully once I start learning, I'll be ok. Its just a lot to take in and not having access to sny support has made me very anxious.
 
Hi Sarah, I’m sorry you’re feeling anxious just now and totally understand. I’m LADA too and was on Gliclazide then basal insulin and now basal/bolus with no tablets. There’s so much to learn and one thing I read here that I keep reminding myself is that’s it’s a marathon and not a sprint.
I’m learning new things every day and in the honeymoon stage (you are too perhaps?) which can be very challenging and frustrating but there will be support here if you have questions etc.
I went low carb in the early days and like you was told to eat normally again so the nurses could work out how much insulin I needed - I remember how horrible it was to get high numbers again, the anxiety and dread of checking my blood sugar.
Anyway, hoping you get lots of support from the nurses and you’ll get great advice here in the forums too, you’re never alone with this xx
 
Thank you for your lovely message.
Yes I would say I'm still in the honeymoon period because low carb and metformin has held me in single figures. Its just getting harder though as the weeks go by and I find myself reducing carbs more and more to try and maintain low numbers.
I'm hoping now I have a diagnosis that I can get on the correct treatment and start to move forward.
 
I was happy when I was told I was a type 1, not happy to be a type 1, but happy I was finally diagnosed right and it explained so much. In my case I was already on insulin, but I knew I had to have it instead of thinking my body could just deal with skipping doses.

I am doing great!!! Sure it can be a pain, but of all the diseases out there we have a big solve for ours. Insulin. So you just have to learn how to take it and what to do and you can pretty much do what you want to, just a little more thought has to go into it. My control is great and yours can be too, although it will be a little rocky at first as your body decides to make insulin sporadically at first.

I'm 63 now and I still snorkel, sure I have a regimen I follow to do so, but it shouldn't stop you !!~!~!
 
Thanks @Marie 2 really good reassuring message to read.

I started eating some carbs yesterday as the nurse told me I needed to. I think she needs to see bad figures to see if she can justify giving me insulin.

My numbers on low carb/keto diet (under 20g carbs per day) ranged from 6-9. Higher after HIIT exercise.

I had porridge for breakfast yesterday with nuts and berries (30g carbs) and I peaked about 1.5 hours after at about 15 (my fasting was 7). It took 5 hours to come back down to 7.

I then had some low sugar baked beans on low carb bread with cheese(30g carbs) for lunch. It didn't peak like the porridge ( I presume because of the high protein and fat content) but much more slowly went up to about 12 (about 2.5 hours after) but it stayed there for hours and pretty much all night sat around 10. Felt pretty ropey.

Back to 8.5 today for fasting. Just had porridge again.....so dread how high ill go today. She wants me to try pasta today which I'm so anxious about.

It is making me feel so ill and tired when figures are high. I really hope I qualify for insulin tomorrow. I never thought I'd ever say that but I'm just tired of feeling like I have no control over this. Low carb and metformin served a purpose to keep me safe during lockdown when I couldn't see any medical professionals but i know its just not sustainable for me long term. Fasting bs has generally been creeping up over the past few weeks.

Will these high figures that she needs to see do me any serious harm for two days? I feel like i have to prove how ill I am to get help.

Thanks in advance for any help/advice.
 
Diabetes damage is usually a more long term thing. Years of poor control causes damage because of thickened blood over time. Short term, not really. Except to make you feel ucky. It will happen off and on for various reasons sometimes anyway, like when you get sick.

The short term more dangerous issue is DKA. DKA is something as a type 1 we have to keep an eye out for. It happens with high blood sugar levels and not having enough or any insulin. It's not actually the high blood sugar that causes it so much as the lack of insulin. It can happen at lower levels in a few rare cases, but it is usually when your blood sugars are high. Get to know the symptoms as it requires immediate medical attention. Without being on insulin yet it is especially something right now to watch for.

https://www.diabetes.org/diabetes/complications/dka-ketoacidosis-ketones

I think you probably will feel better when you do have more control over your BG levels. Drugs and diet help at the beginning but as a type 1 we always end up needing insulin. And insulin made me immediately feel better. It just is a little rocky at the beginning because we still make it sometimes for years and our pancreas can really vary to what it decides to do.
 
SareN said:
so I just had the news that my antibody test was positive so the indication is type 1, I presume slow onset. I think she said my antibody result was 20 and apparently although positive its low positive!? (She referred to me as rare!)
Click to expand...

I think she means 'rare' as in it usually gets automatically diagnosed as type 2!!!! Yes, it is hard to eat carby things when you know your levels will rise (without insulin) but hopefully this will be a matter of days rather than months like some people are forced to do as they do need to be sure that insulin is the right medicine. If you do get insulin soon then I am sure you will start to feel a lot better and less restricted about your food. You will be able to test all kinds of food (from low to higher carb) and then settle on what is right for you. x
 
You should ask for a referral to a specialist who will take a fasting glucose and a c-peptide blood test, to find out how much insulin your body is producing, which will help decide on the best course of treatment.
 
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