LADA/1.5 so confused??

elaine77

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561
Hi everyone, I'm glad I found this page as I am so confused that no one news what's wrong with me that it's really starting to get me down!

I had gestational diabetes in 2010 which went away after I had my son. No family history of diabetes at all and I'm 26 with a BMI of 22.5 so my weight is fine. The week before Xmas I went to the doctor and told him I thought the diabetes was back - he didn't believe me but a Ketostik shocked him into calling a diabetic consultant at the hospital.

To cut a long story short my blood results showed that I was producing c-peptide levels of 395 (and was told the normal range was 360 - 1400) but that my GAD antibody levels were 4 times higher than the normal limit. Consultant said this usually indicates type 1 diabetes but I'm currently taking a very low dose of Metformin only twice a day and its working so he isn't sure! From what he was saying I think the consultant has made his mind up that I will need to inject insulin soon enough but it just doesn't add up. Taking such a low dose of Metformin only twice a day I am getting results of 4.5 - 6.0 mmol which I think is good going! Also, I don't take a Metformin dose before lunch and my post-meal levels after lunch are the best of the lot! They never go above 5.8! The worst seems to be my fasting levels which I know is not good...... It's just so confusing..... If anyone has any experiences like this I would really appreciate any info you may have :-(

It's also worth mentioning that my son was diagnosed with congenital hypothyroidism after he as born which I swear must've been due to my gestational diabetes as it turns out it was transient and he is cured now! I also worry it might leave him vulnerable to getting diabetes too in the future...... Has anyone came across a link between the two?

Thanks all


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mo1905

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Rude people !
I am recently diagnosed as type 1 via GAD antibody test too. I am 46 and was very surprised, thought I would be type 2. I feel like a bit of a fraud as I pretty much eat and drink what I like but my BG is very stable, between 5 and 7 usually. I'm currently on gliclazide, metformin and very low dose of basal insulin. My doctor wanted to put me straight onto the fast acting insulin but consultant said to leave things as they are as I am in what is referred to as the "honeymoon period" or "phase". Basically, because I am having low basal insulin, this gives my pancreas a rest and I actually am nearly back to normal. She did say though that this was temporary, usually a few months. Perhaps you could also be in this "honeymoon phase" ? Just a suggestion, I'm fairly new myself. Hope you find out for sure soon.
 
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phoenix

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Sorry would write more but I'm off to bed (it's an hour later here!)
Have a look at this. It might help explain things.
http://www.locallada.swan.ac.uk/faq.html

I developed LADA in my early 50s, am now 61. In the earlier years hypos and insulin use were my main concern. Now hypos are less frequent and I think I'm more like a typical T1.
 

Hellbunny

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240
Type of diabetes
Type 1
Hi I'm in abit of a rush but I also had gd in 2010, I was actually type 1 but had a 2 year long honeymoon period, I have only recently gone on insulin and only need tiny amounts! If they do an insulin test every few months and it declines each time that would indicate slow onset type 1. X

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elaine77

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561
Thanks everyone.... It's just like I'm half and half at the minute! I've had levels of 5.4 mmol before bed and then when I wake up in the morning it's 7.4 mmol!? How does that work when I haven't eaten anything? Is that more linked to type 1 or type 2?

I have no idea what my pancreas is doing at the moment but someone suggested to me that my beta cells may just be blocked or exhausted? Some people have said to go on insulin ASAP but others have quite rightly pointed out how much had to change wen u move onto injecting (driving license, insurance, declaration etc etc) and with the fact I really hate injections it's not a transition I want to go through although I realise I might not have a choice :-( xxx


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Hellbunny

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240
Type of diabetes
Type 1
Was you on insulin in pregnancy? For me I find injecting pain free, I use a pen with 4mm needles (i was scared before I started as I thought it was a needle/syringe job!

Going to bed normal and waking up high is usually known as the dawn phenomenon, its the hormones released in the early hours which vamp up our levels, it's a pain but 7.4 isn't too bad. Are you following a low carb diet? I only ask as this can extend the honeymoon period, I went low carb for a short while and got my morning readings in the 5's, but I caught a flu like illness in November which accelerated things (i presume my pancreas cells were bashed for good during this) and I didn't get my readings normal again, which is why I started insulin. I don't currently drive but I know insulin mean you need to tell the dvla and have your license renewed more often than non insulin users, also the hypos we can get are a pain in the rear at times. Sorry for the ramble!

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Hellbunny

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240
Type of diabetes
Type 1
Sorry just re-read your first post and realised you are on basal. Are you worried about the hypos from fast acting or more the pain side of it? Sorry I did rush through this morning so missed a little x

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BobCornelius

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132
Hi,

I can relate to where you are at, I am awaiting consultant visit to get results of test for T1/\lada!

I was diagnosed T2 back in 2010, and started on low dose metformin. Later Repaglinade, Gliclizide, Sitagliptin, each worked for a while. Then on to Lantus as a basal insulin. Transferred care to specialist diabetic unit, now on Levemir as basal, Apidra as bolus and SR Metformin. I count carbs, and try for mostly low carb diet, but seem to have days when it doesn't work!

It seems diabetes is so individualised, there are few hard and fast guidelines on what works for whom. I also learned that diabetes medicine is measured in weeks and months I'm used to surgery, where results are noticeable within days!

As far as multiple injections go, 32g 4mm coated needles, if used once only, are virtually pain free!

It will work out for you, eventually!

:)

Bob
 

elaine77

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561
Thanks everyone, no I wasn't on insulin during pregnancy just Metformin same as now and it worked even better then, I didn't go above 7 mmol ever when I was pregnant apart from when I ate one piece of candy floss (so obviously went high).

There is literally nobody in my family who has diabetes of any type and they don't know anyone who has either which just makes it all the more frustrating! The dawn phenomenon thing is really irritating too, I tested blood before bed last night and got 5.8 mmol after eating spaghetti bolognese and woke up this morning to a 7.4!!

I have made changes in my diet but I haven't cut out carbs or made them ridiculously minimal although I am doing that gradually but mostly portion size is working for me at the moment and its the injecting I don't like... I don't like testing my blood with the lancets either and I've seen some awful pics of people with hard lumps everywhere from insulin injecting over time :-( the whole thing just freaks me out in a massive way and with nobody I know ever being diabetic I feel like I'm going into it blind....


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smidge

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Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi Elaine!

Sorry about your diagnosis - I know just how you feel with the uncertainty and fear - and the thought that you're alone. The good news is that LADA is more common than you think and that most of us with it cope very well :D Many of us go through a misdiagnosis as type 2 before we finally get an accurate diagnosis and appropriate treatment.

I've had LADA for more than 3 years - diagnosed at 42. it has been a hell of a journey, but I promise you you will adapt and you will cope. I am now on 5 injections a day (2 basal and 3 bolus). You will need insulin in the end, but that's not so bad once you get used to it - in fact, it was a real relief to me and the best thing I've ever done as I was really struggling until I went onto insulin.

PM me here or on the other forum if you want to talk - I use both forums, and try to look in on each a couple of times a week.

Take care

Smidge
 
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Nemesisuk

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I'm supposedly a type 1.5 or whatever they call it now. Had diabetes since 2003, big strong rugby type 20 st at the time and never a day off sick and your message made me think back to my early days.

I was struggling to walk up a hill and sweating profusely, peeing all the time etc. popped in to see my occupational health nurse who got me tested a diagnosed inside a few days. I was absolutely shattered when they told me I was diabetic! I ran everywhere, competed at cross country and never had a day off sick, so sitting in with the doctor who made me stick myself with a needle ( I had a major phobia!!!) - daft I know as I was happy to jump out of a plane or abseil down a sheer cliff, then havinmg the riot act read to me by a rather scary dietician who prattled on about what I couldn't eat now and never mentioned what I could..I was scared stiff I'll be totally honest.

Later that night I did the shopping in my local ASDA and picked up all the stuff I had been eating previously as a single guy (you know what I mean) and reading the labels like I had been told - I broke down and sobbed my heart out thinking it was all over now.
God knows what they thought was up with me in ASDA.

I was in a major funk for a week or more..and then I was sent to my diabetic consultant who wiped my nose, calmed me down, and explained slowly that nothing really needs to change and it isn't the end of the world (just slightly different)

12 years on, I am now 5 stone lighter, go to the gym regularly and apart from some portion control and cutting out sugar and butter and reducing my junk input I can still have the occasion beer, cake, curry etc. I grant you its a bit of a bummer what with the driving licence ( I lost my HGV as a direct result) and my bits (embarrassed) not working when you want (you won't have that problem at least - LOL) but nothing else is wrong. Oh my youngest turned out diabetic too - he's fine and love getting off scholl to see the hospital doc, doesn't stop him either and I asked him!!

So my main message to you is, STOP worrying, get some good advice about your diet and health and get on looking after your lovely family. Stay positive and you'll be fine - it's no good worrying about what you can't fix trust me.

Best wishes and good luck

A friend
 
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icecoffee

Member
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My experience is similar to you. I had high sugar level when I was pregnant but didn’t get any treatment (I wasn’t in UK at that time). A year later after I had my son, I was very ill and the ketostik shocked the doctors too. The insulin was put on immediately without any tests. I was type one then. As I hated injections, I determined to get rid of needles so the insulin amount was reduced less and less by reducing the food I ate. Eventually I stopped it and started to use Gliclizide. My case was thought odd as I was young and skinny, yet by definition I am type two. This got confirmed by a GAD test 15 years later I got the disease.
My advice from my experience is to concentrate on the BS control by lowering the carb intake hence to use a minimum medication to slow down its progress no matter whatever you are, type one, two or LADA . If I had the knowledge that I have now I guess I could just not have needed any medicine or on Metformin only at the early stage and for many years. I am not doing too badly though - having been with diabetes for more than 20 years I still keep insulin away.
Do not worry too much about your son. There is a risk but not necessary the case. To play safe, watch his diet, let him have more protein, less carbs and sugary stuff such as, sweets.
 
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elaine77

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561
Thanks icecoffee, my fasting levels r always above 7 which really frustrates me but the small Metformin dose is keeping all other levels between 4 and 6.5 most of the time with just some basic carb reduction and replacement so I guess I just have to try and slow it down as much as possible? I had the GAD antibodies but not the ICA ones.....whatever that means? But it's my son I'm most worried about I might ask his endo consultant to check for any antibodies when he gets his next TSH test for his thyroid before they discharge him.....just so I can stop worrying....if he'll do it that is, because there's absolutely no family history of diabetes in my family at all so I'm an anomaly myself really.....


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icecoffee

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Hi Elaine hope you are feeling better. When I was diagnosed, none in my family had it. A few years later my older brother got it and another few years my dad had it in his 70s. Both are type two. Other family members are fine. I remember I tested my son the fasting level once when he’s little with my meter. Touch wood, he is a healthy young man now.
I don’t know much about the GAD test as I have stopped to think which type I am when doctors sent me for tests out of their interests for scientific purpose. Search on internet you will see lots of info.
Readings of 4-6+ are brilliant! I’d like to swap my condition with yours :). 7+ is a bit high but not that bad. Anxiety will push the level up. When I have above 7 in morning I would adjust my eating, say a bit less snacks during the day, or less food for evening meals for a few days until it gets back under 7. Sometimes I adjust the amount of Gilclazide, but this is not your case and not recommended by doctors. I found that just before my period the fasting bs goes up to 8+ and what I do won’t help so I just leave it. I am still leaning my own conditions and trying to work a balance, which suits me, out of diet, medicine and other factors, like exercise and weight, etc. aiming a BS control that is as near normal as possible.
 

phoenix

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5,671
Type of diabetes
Type 1
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Elaine,
Just to pick up a couple of points. People with LADA have most typically GAD antibodies but there are several others including ICA, islet cell auto antibodies and IA-2 auto antibodies Those with GAD and IA-2 auto antibodies progress more rapidly to insulin dependency than those with GAD auto antibodies alone.
I have also read and it makes sense that those with higher numbers of antibodies tend to progress more quickly. About 80% of people who are GADA positive will progress to requiring insulin within 6 years.
I don't know of any evidence on the heritability of LADA. I know everyone worries , I was a grandmother before I developed it so worry sometimes about children and grandchildren. if the mother has T1 it's between a 1 in 25 and a 1in 100 but if someone has one autoimmune disease then they are susceptible to developing another ( Though some types of hypothyroidism are autoimmune I'm not sure that congential hypothyroidism is one of them, you'll know more about that than I)
http://www.diabetes.org/diabetes-basics ... betes.html

There isn't any clear evidence on the best treatment for LADA pre insulin. Some countries like the UK tend to use oral meds other countries put people straight onto low doses of insulin. A Cochrane report looked at the evidence available a couple of years ago came to no real conclusion except to suggest that the drug 'sulphonylurea (like glibenclamide or glyburide, gliclazide) could make patients insulin dependent sooner and it does not control blood sugar as well as insulin'
http://summaries.cochrane.org/CD006165/ ... -in-adults

Personally I left going to the doctor very late (long story basically I'd moved to a different country and tried to avoid going to the docs, I self diagnosed T2) Eventually my beta cells gave up . I was quite ill with all the classic symptoms including rapid weight loss, frequent urination, thirst. When I gave in and went to the doctors, I was hospitalised with high ketones. I went onto insulin straight away... but really about 3 years from I noticed the first symptoms. During that period I was quite careful with diet using a low GI diet and I did a fair amount of exercise which I'm sure helped.
( I think from that the loss of insulin function was very jerky and intermittent rather than a gradual slide downwards )

Almost 8 years later and I have on the whole felt very well, certainly an awful lot better than the immediate period before I was 'diagnosed' and went onto insulin. Undoubtedly insulin/counting carbs/weighing food can be a hassle but it hasn't stopped me doing anything I've wanted to do. (including doing 'mad' things like long distance running, walking and joining my grandchildren swimming in rough seas or ascending a climbing wall. )
 

elaine77

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561
Thanks I'm just always worrying about how long I have left before I get to the awful insulin stage. The last two days I have developed a cold and feel really really run down and the last two days my levels have been between 7 and 9 mmol which is high for me....could it be possible that having a bad cold is making my levels higher? Or is it worse than that and the cold is making by beta cells be destroyed quicker?? :-( worried and confused.


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smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi Elaine!

Yeh, it will probably be the cold pushing up your levels. The first illness I had after diagnosis, my levels went up into double-figures and I had to more than double my insulin doses just to keep them there. I was terrified, but they gradually came back to normal after the infection cleared. It's something to do with your body becoming more insulin-resistant when it's fighting infection as a defence mechanism. Take it easy, get plenty of rest and try not to worry!

Smidge
 

elaine77

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561
Thanks smidge. It seems ur right, I'm feeling a little better last night and today and I'm back between 7 and 8 phew! I read on here someone who was using tablets to medicate but got flu and it destroyed all the rest of their beta cells nd they had to go onto insulin straight away so I was praying my little cells held out lol. I think I'm going to ask my sons consultant to run a test for antibodies at his next endo blood appointment and see what he says... I only have the one antibody (GAD65) so I'm hoping this is a good thing!


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elaine77

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561
Hi everyone, I just want to run something by u all?

So I'm annoyingly pedantic and one thing that has bothered me since diagnosis is HOW and WHAT caused my body to murder it's own beta cells and although I might never find out (since the medical profession don't even know) I still keep trying!

So I did a bit (ok a lot) of research into triggers for this type 1.5 based on loads of people's experiences directly prior to becoming symptomatic/diagnosed and one MASSIVE trigger that came up (in about 85% of what I read) was stress!!

I find this interesting because my first diagnosis was a gestational one in 2010 where I got diagnosed around the time my partner got diagnosed with depression and we were going through a stressful time. The diabetes went away completely after this pregnancy though which I still find odd if it is late type 1 that I have because I don't understand how it can go way? It can halt probably but go away? Unusual?

Anyway, last year (2012) was the most stressful year of my life ever. I got married in September and my partner lost is job 3 months before our wedding because of his depression so we filed a tribunal claim where I had to sit in front of a judge and represent him myself as we couldn't afford legal fees. The Wedding was September, the tribunal hearing took a week and was in October and, funny enough, I was symptomatic from September and diagnosed December.....

Just wondering if anyone else encountered acute stress prior to diagnosis or know anyone who has..... I know it may not change the outcome of the disease but u can't find a cure if u don't know the cause right?

Thanks all, :)


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