Hello - newbie here :)

[Lauren95]

Hi everyone, I thought I might say hello and hopefully get to know some people on here, as I was finally diagnosed yesterday, after a few weeks of uncertainty, with type 1 slow onset - a.k.a. 'LADA'. I'm currently at university and otherwise pretty healthy so it's a bit of a shock. Does anyone else here have this type of diabetes?

Also, I was wondering if anyone has any recommendations for eating habits/good recipes? I eat decently healthily foods most of the times however have real trouble sticking to any kind of schedule - sometimes I eat one big meal in the day, sometimes I eat 5 small ones, depending on what I'm feeling that day!

Thanks in advance 🙂 🙂

Lauren

 

[grovesy]

Welcome!

 

[Lynn Davies]

Hi and welcome to the forum Laura. There are a few Ladas around so you won't be on your own.

 

[Northerner]

Hi everyone, I thought I might say hello and hopefully get to know some people on here, as I was finally diagnosed yesterday, after a few weeks of uncertainty, with type 1 slow onset - a.k.a. 'LADA'. I'm currently at university and otherwise pretty healthy so it's a bit of a shock. Does anyone else here have this type of diabetes?

Also, I was wondering if anyone has any recommendations for eating habits/good recipes? I eat decently healthily foods most of the times however have real trouble sticking to any kind of schedule - sometimes I eat one big meal in the day, sometimes I eat 5 small ones, depending on what I'm feeling that day!

Thanks in advance 🙂 🙂

Lauren

Hi Lauren, welcome to the forum 🙂 Good to hear that you have a proper diagnosis of LADA, many people get mistakenly diagnosed as Type 2 then end up having a real battle on inappropriate medication.How did you come to be diagnosed? We've got quite a few members here who are slow-onset, myself included. I had symptoms for approximately 18 months (with hindsight!) until I caught a virus and then just totally overwhelmed my pancreas, laving me in A&E with DKA 😱 Are you on insulin yet? Weirdly, I was on lantus and novorapid for the first 4 years, then stopped needing the lantus altogether - for the past 4 years I have just needed novorapid with my meals.

I'm not particularly the person to ask about recipes, but there are some members who are very switched on in this respect, and you'll find a lot of their suggestions in the food section, so have a browse 🙂 Please feel free to ask any questions you may have, there's bound to be someone who can help! 🙂

 

[Lauren95]

Hi Lauren, welcome to the forum 🙂 Good to hear that you have a proper diagnosis of LADA, many people get mistakenly diagnosed as Type 2 then end up having a real battle on inappropriate medication.How did you come to be diagnosed? We've got quite a few members here who are slow-onset, myself included. I had symptoms for approximately 18 months (with hindsight!) until I caught a virus and then just totally overwhelmed my pancreas, laving me in A&E with DKA 😱 Are you on insulin yet? Weirdly, I was on lantus and novorapid for the first 4 years, then stopped needing the lantus altogether - for the past 4 years I have just needed novorapid with my meals.

I'm not particularly the person to ask about recipes, but there are some members who are very switched on in this respect, and you'll find a lot of their suggestions in the food section, so have a browse 🙂 Please feel free to ask any questions you may have, there's bound to be someone who can help! 🙂

Hi!

For my diagnosis process, I have actually been seriously impressed and grateful with the NHS. Fortunately I have a great GP who happened to guess LADA from the get go. As I'm only 20, not overweight, exercise and (mostly!) eat healthily, he thought it was very unlikely I'd be normal type 2, and unlikely I'd be MODY as I have no history of diabetes in my family. I mentioned to him in a routine appointment some symptoms - excessive thirst and night time bathroom trips, and unusual daytime tiredness - in hindsight classic diabetes symptoms - he did a blood test, and redid the blood tests and then sent for a antibodies test to see if it was any form of type 1. That came back where one of the antibodies tests was positive and one was negative, which apparently indicates LADA not full on type 1, and now here we are.

I'm not on insulin yet as apparently I still have some insulin producing cells left. Instead I'm on Gliclazide, which is one of the ones that help my remaining pancreatic cells work overtime on producing insulin to compensate for the few number of them left.

Oh also I forgot to mention that, despite my very high blood glucose levels, the highest my ketones have ever got is 0.1, so they're not worried about DKA yet 🙂

How do you find coping with it in general? I don't think my diagnosis has really sunk in yet as mostly I'm focussed on the fact that I've got university exams starting in 4 days - great time for this to hit... - so I'm assuming it'll sink in more after those have finished. Honestly I think I'm still almost in denial, like I know it's happening, but from what I've read, it's not that bad, and I don't really feel anything about this yet, so yes.

Also, I think mine may have been virus triggered as well, as last semester I was ill with some kind of virus that was going around, and that completely wiped me out for a few days, and I don't feel like I ever 100% recovered, and that's when the diabetic symptoms started.

 

[Northerner]

Your GP sounds very switched on - great to hear! 🙂

It will probably take a long time to sink in properly - I'm not sure it's sunk in with me yet and I was diagnosed in 2008! 😱 On the whole though I haven't found it too bad. I've been fortunate that my levels have been relatively easy to control. This is probably because I work from home, tend to eat similar things at similar times of the day, and also because my pancreas did seem to revive a bit 4 years ago and now helps me smooth the rough edges a bit 🙂 I think the biggest impact was probably on spontaneity - very tricky to just do things, there nearly always has to be a certain amount of pre-planning. It does become more of a habit though, so less of a problem as time goes on 🙂 You'll probably make some mistakes, but then learn from the mistakes with no harm done 🙂 My philosophy is that I can't ignore it completely, so I just devote the small amount of time it needs each day and then get on with my life 🙂 It's fortunate that you are not having to cope with a new insulin regime at the same time as your exams - is your Uni aware of your diagnosis? Have you had any hypos on the gliclizide?

 

[TheClockworkDodo]

Hi Lauren, and welcome 🙂

I was diagnosed with type 1 as an adult, but it was sudden rather than gradual onset. As Lynn said, there are several LADAs here though. I'm with Northerner, it hasn't really sunk in, as such, because I've found it generally pretty easy to deal with, so it doesn't normally bother me.

I hope the exams go well - what are you studying?

 

[Lauren95]

Your GP sounds very switched on - great to hear! 🙂

It will probably take a long time to sink in properly - I'm not sure it's sunk in with me yet and I was diagnosed in 2008! 😱 On the whole though I haven't found it too bad. I've been fortunate that my levels have been relatively easy to control. This is probably because I work from home, tend to eat similar things at similar times of the day, and also because my pancreas did seem to revive a bit 4 years ago and now helps me smooth the rough edges a bit 🙂 I think the biggest impact was probably on spontaneity - very tricky to just do things, there nearly always has to be a certain amount of pre-planning. It does become more of a habit though, so less of a problem as time goes on 🙂 You'll probably make some mistakes, but then learn from the mistakes with no harm done 🙂 My philosophy is that I can't ignore it completely, so I just devote the small amount of time it needs each day and then get on with my life 🙂 It's fortunate that you are not having to cope with a new insulin regime at the same time as your exams - is your Uni aware of your diagnosis? Have you had any hypos on the gliclizide?

Hi again!
Thanks for the quick reply 🙂 I actually just started the Gliclozide today so haven't really had a chance to have a hypo. Seems unlikely though as I've only so far actually taken one pill, and that was because my 2hr post breakfast levels were 23.6 glucose (though still only 0.1 ketones) and I was getting a really bad headache and general 'been run over by a bus feeling'. Originally the Drs recommended I monitor only for a week and then start on the pills but as I was so high this morning after eating, and high last night after dinner, they thought I should start immediately. As for uni, I'm scheduled to see my tutor on Monday to talk about it properly, but I have emailed him to tell him about it so he does know already. It sounds like it's been relatively easy for you to handle making a food routine, so that's handy 🙂 however I just have so much variability in my days/weeks that honestly that's what I'm most concerned about. I'm definitely more of a spontaneous person so I don't know how I'll figure that out 😛 Is the pancreas 'revival' a common thing?

 

[Lauren95]

Hi Lauren, and welcome 🙂

I was diagnosed with type 1 as an adult, but it was sudden rather than gradual onset. As Lynn said, there are several LADAs here though. I'm with Northerner, it hasn't really sunk in, as such, because I've found it generally pretty easy to deal with, so it doesn't normally bother me.

I hope the exams go well - what are you studying?

Hi Juliet 🙂
I'm studying biology - 2nd year - so luckily I did know a bit about diabetes before I ever even suspected I had it, and also I know how to research to find more info! How old were you when you were diagnosed? (If you don't mind me asking). I'm curious as there don't seem to be many young adults with LADA that I've heard of, as from what I can tell it's usually normal type 1 for people younger, which is slightly confusing ?

 

[TheClockworkDodo]

Hi Juliet 🙂
I'm studying biology - 2nd year - so luckily I did know a bit about diabetes before I ever even suspected I had it, and also I know how to research to find more info! How old were you when you were diagnosed? (If you don't mind me asking). I'm curious as there don't seem to be many young adults with LADA that I've heard of, as from what I can tell it's usually normal type 1 for people younger, which is slightly confusing ?

That's useful that the biology meant you already knew a bit about diabetes - hopefully it will also mean you will be able to filter out the accurate info. about it from the rubbish that pervades the internet/newspapers!

I was 44 when I was diagnosed, and there are quite a few type 1s here who were diagnosed in their 30s/40s/50s, so although it's more common for it to start in childhood, it's certainly doesn't always do so. The consultants at the hospital I was diagnosed in seemed to think I was really unusual though, because I have no auto-immune disease in my family - my diabetes is a secondary condition resulting from my having ME (which is also now considered to be an auto-immune disease) and they just hadn't come across that before. I don't know very much about LADA, I'm afraid, but if the thing about type 1 only developing in children/young adults is a myth I wouldn't be at all surprised if it were also a myth that LADA only effects older adults ...

 

[Carol Robinson]

Hello Lauren and welcome to the forum 🙂
Good luck with your exams.. it sounds like you're going to do well!
If you're looking for low carbohydrate, ketogenic recipes.. I use an app., called Ketodiet basic, it is on android, but.. if you have an iPhone or iPad etc., there's a full version. The recipes are great! I really don't think that I could have done so well since diagnosis without this app.
Enjoy the forum, there's lots of really kind, friendly, and helpful folk here.

 

[Northerner]

Hi again!
Thanks for the quick reply 🙂 I actually just started the Gliclozide today so haven't really had a chance to have a hypo. Seems unlikely though as I've only so far actually taken one pill, and that was because my 2hr post breakfast levels were 23.6 glucose (though still only 0.1 ketones) and I was getting a really bad headache and general 'been run over by a bus feeling'. Originally the Drs recommended I monitor only for a week and then start on the pills but as I was so high this morning after eating, and high last night after dinner, they thought I should start immediately. As for uni, I'm scheduled to see my tutor on Monday to talk about it properly, but I have emailed him to tell him about it so he does know already. It sounds like it's been relatively easy for you to handle making a food routine, so that's handy 🙂 however I just have so much variability in my days/weeks that honestly that's what I'm most concerned about. I'm definitely more of a spontaneous person so I don't know how I'll figure that out 😛 Is the pancreas 'revival' a common thing?

What are your waking levels like Lauren? Not sure I understand the policy of giving gliclizide, which will just stress your beta cells further. There is some thinking that giving insulin, even in tiny amounts, can actually relieve the stress on beta cells and allow them a chance for some recovery. I'm not unique in having some revival of my insulin-producing capacity, there are a couple more on the forum that I know about, but it is very unusual. You have to think of diabetes as being more of a spectrum rather than one or two distinct conditions - I'm sure you will be more aware than most, from your studies, that human beings are incredibly complex entities with so many diverse factors coming into play. In that respect, I am a bit of an outlier.

Now you are on gliclizide, do make sure you carry some sugar with you at all times - my hypo treatment of choice is jelly babies 🙂

We have had students in a similar position to you - your age, LADA and at Uni. One of them set up a Facebook group, if you use that, although I think she and the others who started it have since left Uni, so I'm not sure how active the group is. It's called 'Student Diabetics UK'. 🙂

 

[robert@fm]

Not sure I understand the policy of giving gliclizide, which will just stress your beta cells further.

As part of another thread, I recently read the PIL for gliclazide, and the contra-indications section specifically states that it is not to be used to treat T1; I suppose that includes LADA, and probably those still in the honeymoon period.

 

[Lauren95]

As part of another thread, I recently read the PIL for gliclazide, and the contra-indications section specifically states that it is not to be used to treat T1; I suppose that includes LADA, and probably those still in the honeymoon period.

Hi Robert, if you can still find it, could you possibly paste the link here for that?? That's quite concerning to hear. I definitely don't want to make anything worse :/

 

[Lauren95]

That's useful that the biology meant you already knew a bit about diabetes - hopefully it will also mean you will be able to filter out the accurate info. about it from the rubbish that pervades the internet/newspapers!

I was 44 when I was diagnosed, and there are quite a few type 1s here who were diagnosed in their 30s/40s/50s, so although it's more common for it to start in childhood, it's certainly doesn't always do so. The consultants at the hospital I was diagnosed in seemed to think I was really unusual though, because I have no auto-immune disease in my family - my diabetes is a secondary condition resulting from my having ME (which is also now considered to be an auto-immune disease) and they just hadn't come across that before. I don't know very much about LADA, I'm afraid, but if the thing about type 1 only developing in children/young adults is a myth I wouldn't be at all surprised if it were also a myth that LADA only effects older adults ...

Hi again 🙂
It was actually rather unusual for my family, as prior to a year ago we never had an autoimmune diseases. Then last Christmas, my younger brother developed an autoimmune disease that started affecting his nervous system. The Dr's spent a serious amount of time trying to diagnose him/find anything that would relieve his symptoms (dizziness, loss of sensation and hearing, sudden losses of vision and intense headaches that would leave him in the fetal position screaming - which for a 6 foot 4, 100kg rugby player is saying something) In the end they were unable to diagnose him with any known condition, not guillan barre or anything like that, however they treated him with something that I now forget what it was and his symptoms disappeared and he got better. Now he's just a typical grumpy teenager again. They think his was virus triggered. Apart from that no history of diabetes or any other autoimmune. I asked my gp if he thought I could be I'm something similar and he said it was highly unlikely so bad luck I guess.

 

[Lauren95]

What are your waking levels like Lauren? Not sure I understand the policy of giving gliclizide, which will just stress your beta cells further. There is some thinking that giving insulin, even in tiny amounts, can actually relieve the stress on beta cells and allow them a chance for some recovery. I'm not unique in having some revival of my insulin-producing capacity, there are a couple more on the forum that I know about, but it is very unusual. You have to think of diabetes as being more of a spectrum rather than one or two distinct conditions - I'm sure you will be more aware than most, from your studies, that human beings are incredibly complex entities with so many diverse factors coming into play. In that respect, I am a bit of an outlier.

Now you are on gliclizide, do make sure you carry some sugar with you at all times - my hypo treatment of choice is jelly babies 🙂

We have had students in a similar position to you - your age, LADA and at Uni. One of them set up a Facebook group, if you use that, although I think she and the others who started it have since left Uni, so I'm not sure how active the group is. It's called 'Student Diabetics UK'. 🙂

Hello again Northerner 🙂
I'll definitely look up the Facebook group - maybe I could try to revive it if it's died down a bit 😛 As for the gliclazide stressing beta cells, that was something that occurred to me and I asked my gp about that and he said it wouldn't make a difference but I think I'll try and follow up on this further now. As I said yesterday was the first day I'd taken the gliclazide so my waking blood glucose today was 6.3! Previously I've flip flopped around 9-13. I'm scheduled to get a phone call sometime soon from the diabetes nurse at the hospital to go over properly how to take the gliclazide as they hadn't really before, they just gave it to me just in case and expected me to start maybe next week or the week after, so I'll bring up the further concerns about stressing beta cells with her then. Also try and do some research of my own - put my biology degree to good use!

 

[Lauren95]

Hello Lauren and welcome to the forum 🙂
Good luck with your exams.. it sounds like you're going to do well!
If you're looking for low carbohydrate, ketogenic recipes.. I use an app., called Ketodiet basic, it is on android, but.. if you have an iPhone or iPad etc., there's a full version. The recipes are great! I really don't think that I could have done so well since diagnosis without this app.
Enjoy the forum, there's lots of really kind, friendly, and helpful folk here.

Hi carol 🙂
Thank you! I have an android so I'll download it asap and have a look. Does it happen to include how much carbohydrates are in recipes they give already? I'm not on insulin yet so they haven't even mentioned carb counting to me but I assume it's something I'm going to have to learn how to do eventually so may as well start guessing now 🙂

 

[Northerner]

Hi Robert, if you can still find it, could you possibly paste the link here for that?? That's quite concerning to hear. I definitely don't want to make anything worse :/

Robert is referring to the leaflet that comes with each box of pills, the 'Patient Informations Leaflet' also known as the PIL 🙂 Section 2 states you should not take gliclizide if you have Type 1 diabetes, although Type 1 does imply that you are also on insulin.

2 Before you take Do not take Gliclazide tablets and tell your doctor if you: • have ever had an allergic reaction to Gliclazide tablets or any of the ingredientsin the tablet (Please refer to section 6, further information) An allergic reaction may include a rash, itching, difficulty breathing orswelling of the face, lips, throat or tongue • are breast feeding. • have severe liver or kidney disease. • have porphyria (a hereditary disease affecting the liver or bone marrow). • have ever had a severe diabetic reaction (such as “acidosis”or diabetic coma). • have Type I diabetes.

I think it may be a bit of a grey area, with some consultants thinking to use gliclizide first, insulin later, and some thinking that starting on insulin and bypassing the gliclizide is a better option. Might be worth asking for a second opinion?

 

[Cowboy Bob]

As I'm only 20, not overweight, exercise and (mostly!) eat healthily, he thought it was very unlikely I'd be normal type 2

Hi and welcome to the club that no-one wants to join.

Just thought I'd mention that it's a fallacy that T2s have brought it on themselves, despite what the media say. I'm a T2, diagnosed last December at 43, not-overweight, exercise regularly (currently training for a 10k) and have always eaten healthily (never stepped foot in a McDonalds in my life). It's much more common to be a healthy T2 than is often stated.

 

[Carol Robinson]

Hi carol 🙂
Thank you! I have an android so I'll download it asap and have a look. Does it happen to include how much carbohydrates are in recipes they give already? I'm not on insulin yet so they haven't even mentioned carb counting to me but I assume it's something I'm going to have to learn how to do eventually so may as well start guessing now 🙂

Hi Lauren, yup 🙂 all the nutritional values are on each recipe, enjoy..