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New LADA Diagnosis

L

Liz1986

Member
Messages
6
Type of diabetes
LADA
Treatment type
Diet only
I was diagnoised with type 2 then 1 then 2 and now 1.5 all within 3 months!
I am not really sure the difference between 1.5 and 2? Other then I am GAD positive?
I was diagnosised while in DKA but the DKA was originally missed and was put on metformin for a few days before I got so ill I was sent to the hospital. From there I was on insulin until recently and am now on no medicine. The Dr says I am in a honeymoon phase? Where my insulin needs drastically decrease?
Are there any more concrete tests to determine your type of diabetes? I feel like everytime I go see another Dr/specialist I change types? And would love to just have an answer!
Any advice for a newly diagnosised newbie would be great :)
 
Sounds very much like LADA. I was diagnosed much the same. High BG levels, DKA, hospital, meds. Then GAD test, Also not overweight and lost some weight. That was over a year ago.

If you low carb you will most likely stay in the honeymoon period for quite some time, likely much longer than if you don't low carb. You could ask for a C peptide test, this is a marker of the amount of insulin produced. I have not had this done. My Dr said it was not worthwhile is it won't Chang anything.

There are quite a few LADA's on this forum. Have a browse through some of the posts in the LADA section.
 
Hi Liz,

Yes, have a read of these. There are certain patterns of 1.5 story that tend to repeat themselves. The point is that you'll probably be insulin-dependent at some future point, and once you are, better to get on with it. What you do about when and how you get there is up to you.

It could be a lot worse - LADAs generally need less insulin than lifelong Type 1s. But we have to be careful about complications, as we may already have some. So truly normal BG is worth aiming for, if you th you can do it.

Here are my and Ian's stories:


http://www.diabetes.co.uk/forum/threads/an-older-and-wiser-new-lada.70099/

http://www.diabetes.co.uk/forum/threads/ladas-preserving-their-beta-cells.62177/

http://www.diabetes.co.uk/forum/threads/can-i-prove-the-drs-wrong.53061/

http://www.diabetes.co.uk/forum/threads/managing-the-bernstein-eating-plan.63042/

Read well! And the Bernstein book. Or http://www.diabetes-book.com/read-online/ Don't be put off by him looking cheesy: he's great. Also lots of videos by him at Youtube Dr Bernstein's Diabetes University.

Welcome - and it's not that bad! Lucy
 
To a certain extent the difference between T1 and 1.5 is semantics. Autoimmune diabetes occurs because the beta cells are being destroyed by an autoimmune attack .Basically the cells that normally help to fight viruses and bacteria 'decide' to target and kill cells in your own body' In this casethe beta cells which produce insulin.
No-one yet knows what triggers the attack (lots of ideas around various enteroviruses, for example a coxsackie virus that normally produces very mild symptoms is very like a beta cell in structure) \No-one knows why in some cases the beta cells are destroyed very much more quickly than in others. Those of us who develop it later though do seem to loose function more slowly
(One theory I find interesting is that LADA could be the result of a series of autoimmune attacks with beta cells being killed off every time a particular virus is encountered. Eventually the tipping point is reached)

Like you I had DKA at diagnosis and have been on insulin ever since. (almost 10 years now). My insulin needs dropped after the first few weeks and are still less than they were at that time. However, if you have got to the state that you have only a few working cells left you really are insulin dependent
I have learned to use insulin to control my diabetes and have lived a relatively normal lifestyle . I was probably motivated to be more active than I would have been and ran a couple of marathons; just to show I could. I've kept my HbA1c pretty stable over the entire period.

I try to eat a healthy diet ; sort of Mediterranean meets SW France, I live in France and have a lot of good fresh produce,. I don't particularly restrict starchy carbs ; I don't load my plate with them either (usually about a quarter for a main meal ) I do count them for my insulin dosing; and all the rest of the carbohydrates from veg, fruit and dairy as well. I try to choose minimally processed starches; real whole grains, not those pulverised into submission. I use the GI to guide my choice so would eat small waxy new potatoes rather than jacket ones, whole grain basmati rather than sticky white rice etc
I did increase my exercise, I did become more careful about some foods so sometimes have to make choices about whether to eat certain food .Choices that I wouldn't have to have made pre diabetes. (ie I make a conscious decision whether something is 'worth the insulin' ,it depends on the circumstances as to whether it is or not)

Balance and moderation are hackneyed sentiments but I think that they are important. Any lifestyle changes you make need to be sustainable and to fit in to with what you want to do. For example I like to eat fresh foods but also like to walk long distances so I have to adapt my diet to what's available when I go on multi day trips to the mountains
Fortunately we have the tools to allow flexibility. It is important though to learn to use them. (sadly that doesn't always happen, people sometimes seem to get very little guidance on how diabetes 'works' and how to use insulin)
You'll get a lot of help on here but can I also recommend a couple of books.
Type 1 Diabetes in Children Adolescents . Ragnar Hanas (don't be put off by the title .Though it's aimed a parents and children,it really is an excellent book which lives up to it's subtitle 'How to become an expert in your own diabetes'
Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin . Gary Scheiner This book provides a lot of info on using insulin effectively
 
Thanks for the responses!
I have read think like a pancreas and it did help me understand a bit more.

I get really confused by what my target blood sugars should be... Each Dr gives me new ones.... one said I am young so I need to keep really tight control and keep fasting under 6.1 and 2 hr pc under 7.8 but then I was told my fasting should be around 6 and 2 hr can be as high as 10? I can't get my fasting to 6 it's usually between 4.8-5.4.

The dietician refuses to teach carb counting because she said its just a way for diabetics on insulin to cheat?

How often do you guys test? Originally after the hospital I was told 4 times but now just fasting and a random sugar every few days? But I am super paranoid about going back into DKA so I test atleast twice a day...

Sorry for so many questions!
 
Gosh.

1) Fasting sugars of 4.8 - 5.4 are brilliant - true normal. Stay with them.

2) Yes, different health professionals will give you various levels to aim at. However, one of the positive things about diabetes is that it's you, rather than the doctor, who actually runs your care. This means that it's in fact your decision what sugars you aim for. Do some reading, but then it will be clear that if you can, you should stay below 7.0, because that's about where much more serious complications take off.

Doctors tend to set a higher limit, but that's because the medical establishment is a) out of date and b) prioritises avoiding hypos over protecting diabetics from complications. But as a new LADA you probably aren't in much danger of hypo-ing - especially if, as I've just remembered, you aren't on insulin.

If you're not on insulin at the moment, I'm not sure the above is terribly helpful. Have I got this right, that they have taken you off all medication and are treating you like a Type 2?

If that is right, all you can do is low-carb, and I would enormously recommend that you do that.

3) Carb counting, but above all testing - it's called eating to your meter - is absolutely vital. If your dietician won't teach you, never mind. Find a good carb counting app that you like (I like Carbs & Cals myself, but theres also My Fitness Pal - browse the forum for recommendations), and just start weighing. You'll soon know it.

You need to test on waking, and before and 1.5-2 hrs after each meal. That way you can see what foods spike you, and stick with those that don't. It's nonsense that you don't need to test. We can only gain control of our diabetes by testing. You want control.

Oof - lots more here, but that's enough for now.

Oh - one last thing. You don't need to worry about DKA so long as your BG is below 10.

But if and when your fasting BG goes above 6.5, I would go and ask for insulin.

Do lots of reading, and read especially http://www.phlaunt.com/

Lucy
 
I agree very much with Lucy. Fasting sugars of 4.8 - 5.4 are brilliant - true normal.
as Lucy says, don't worry about DKA with BG levels under 10
Eating to your meter will help you in your BG control.
In the early days I would recommend you test very frequently, to establish what foods are good for your BG leves. Maybe as much as 10 times per day. Frequent testing also helps with BG control. That's what I did, but now I test much less frequently, because I have learned what foods do to my BG levels.

You might find Dr Bernstein's book Diabeetes Solution, an interesting read. Around £5.00 on kindle or iBooks.
 
Ian DP said:
I agree very much with Lucy. Fasting sugars of 4.8 - 5.4 are brilliant - true normal.
as Lucy says, don't worry about DKA with BG levels under 10
Eating to your meter will help you in your BG control.
In the early days I would recommend you test very frequently, to establish what foods are good for your BG leves. Maybe as much as 10 times per day. Frequent testing also helps with BG control. That's what I did, but now I test much less frequently, because I have learned what foods do to my BG levels.

You might find Dr Bernstein's book Diabeetes Solution, an interesting read. Around £5.00 on kindle or iBooks.
Click to expand...
Totally agree with all that. LSW
 
Wow! Thank you so much for all of that info!

They took me off all medicine and I guess treating me like a type 2? The Dr said I will eventually need to go back on insulin but for now I am fine without anything. How often do you do an A1C? My last (only) one was the end of November when I was diagnosed but have no follow up appointments, I am thinking maybe the end of March for the next one?

I did find out from testing my sugar spike happens around 1 hour after eating and usually if it didn't go to high after the meal is back in the 5s in about 2-2.5 hours.

I am going to look up all these books and do my own reading and figure out these bloody disease on my own no actually take control and not depend on the Drs.

Thank you guys so much for the help! I was feeling so lost and over whelmed before!
 
Well, good on you Liz. That's the spirit! We *can* gain control ourselves, and then you can get on with your life.
 
My Hba1c are taken around every 3months, whenever I have a hospital diabetic appointment.
Back in the 5s 2hrs after eating is good. Dr Bernstein recommends not being over 5.6. That's always my aim.
 
Hi Liz. I was just diagnosed this december with an hba1c of 15,5 %. I am lucky in a way that my doctor ordered both the gad antibody test and c-peptide. My Gad antibodies were very high and my c-peptide were 0.14nmol/l (minmum normal range in our lab is 0.21 nmol/l). I am currently on 6 units of novomix 30 injected once a day. I also decided to shift over to LCHF diet to make control much more predictable. I am no doctor, but would advise you to maybe consider to start low dose basal insulin right away to take the stress of your remaing beta cell´s and you might just get away with one injection for years. I am currently managing strict control and now my bloodsugars are in range mostly between 4 and 6 mmol/l 24/7. According to dr. bernstein if you are still producing insulin when diagnosed and you take strict control you might just carry your own cure.
good luck
 
Hi Liz and Fido!

Welcome! I'm another LADA who was originally misdiagnosed as Type 2. I was left to fend for myself for nearly a year with no meds and no further tests until I was really ill. I'd say that as LADA is progressive, you should be insisting on frequent HbA1cs at least initially to judge how you're doing. Maybe every 3 or 4 months.

I have been diagnosed more than 5 years now and am further progressed than Ian and Lucy - but not as much as Phoenix! I also low-carb and thoroughly recommend it as a means of keeping good control.

Stick around, there are quite a few of us on here now!

Smidge
 
Smidge,

Can I ask what TDD dose you are on now? Mine keeps creeping up. I expected that, but I hope it'll slow down soon for a bit. I started out on 4u of Insulatard a day, and now I'm on 4u morning and 3u at night, plus usually 2u Novorapid for each of three meals. Occasionally the odd correction dose when sth goes wrong. 13 or sometimes 14u a day.

All that because I want to keep to near-normal blood sugars: waking 5.2, that sort of thing.

And I still keep to the 30g carb a day, except for disasters. Last Friday there was such a disastrous bacchanalian binge that it took four or five days for my metabolism to recover. Back down to reasonable levels now.

The bolus insulin seems a lot more important to me, TBH, than the basal. It was the post-meal spikes, even tho they were very modest, that kept my A1c high till I got the Novorapid.

So could you share your progress thro the insulin dosages through your five years?

Lucy
 
Hi. The main difference between LADA and T2 is that aT2 c-peptide will usually be high as insulin resistance stops the body using insulin and not producing it. LADA is in a way a form of T1 except that the body may still be producing some insulin and the c-peptide will be low. Note that many T1s also produce some insulin so it's a spectrum. I'm surprised you haven't been prescribed Gliclazide and possible Sitagliptin which are the most common htablets for stimulating the pancreas. They worked a bit for me in the early days but even on full dose they had no effect and hence the insulin I'm now on. As another poster has said, do ensure insulin is started as and when your blood sugar often goes into the 20s as mine did. How much you low carb is your choice. For those down at 30gm/day it can be possible to avoid any medication as the body produces just enough insulin to cover needs. I've stayed above 100gm/day and then insulin may eventually be needed. I would say that if you are GAD positive then you are LADA. If you are overweight you could have a bit of both!
 
Hi Liz,
My thoughts on insulin. Clearly I am no expert at all on insulin, as I, like you are not on it yet, but my thoughts are:-

At some point in the future you will need insulin, just like I will need it some time in the future.
It could be next week, it could be months, it could be years, even many years, but you, like me, will need it some time.
Whilst your BG levels are in the 5s, as they are now, you don't need insulin.
Keeping them within the Dr bernstein range of 4.6 to 5.6 will likely defer the insulin for as long as possible, still no guarantees though.
The higher your BG levels rise above the 4.6 to 5.6 range the quicker you will need insulin, particularly if they are high over long periods.
Start thinking about the need to go on insulin when your BG levels reach 7.0 on more than a few occasions.
When you next see your diabetic Dr / DSN tell them you want to go on insulin sooner rather than later, and that you would like an insulin pen, so you can use it when your levels rise regularly above 7.0...... They will probably say no...... But maybe reconsider next time, when you ask again. Half unit pens are availbe, but you will need to specifically ask for it. I am told that one unit will lower my BG levels by 3.0, so a half unit pen will reduce it by 1.5, so clearly with a half unit pen you can start insulin earlier than with a one unit pen.
Chances are, your BG levels will rise when you are ill, a bad cold, definitely flu or a virus, just about any illness, or stress. I think this will be be the time when we are most likely to need insulin.

In my opinion, the best way of keeping our last few remaining insulin making beta cells, and thus keeping in the honeymoon period, is to keep our BG levels in the 4.6 to 5.6 range. Low carbing, insulin and exercise will all help us keep to these levels.

Just my opinion..... Keep reading and learn as much as you can, so you can formulate your own opinion. Don't necessarily rely on your Dr or DSN to give the best advice to suit you..... They have to stick to NHS policies, which are still one third plate full of carbs and starting insulin at levels over 10.0. Many of us believe changes are on the way, but the NHS does not change quickly!
 
Certainly Lucy - I've just been looking back at my spreadsheet over the years to try to remember some of the insulin trials and tribulations!

I'm currently on 18 - 20 TDD most of the time - obviously that varies depending on what I've been eating. It's made up of 7 units Levemir in the morning and 5.5 units Insuman basal at night, with 1.5 units Apidra for breakfast, 1.5 - 2 units Apidra for lunch and between 3 and 5 units Apidra for tea. There is still the odd correction bolus although they are much rarer since replacing Levemir with insuman at night - except this week where I've been having to correct before bed or on fasting again - not sure why. I'm happy enough with that and it is down a bit on where it was pre-Christmas as I've reduced the evening basal since switching to Insuman at night. I was on 8 - 8.5 units Levemir in the evening whereas I only seem to need 5.5 of insuman. I keep thinking I should swap the morning Levemir for Insuman and see how that goes, but as my BG seems to have settled pretty well and the hypers and hypos are reduced greatly, I'm sort of leaving well alone at the moment.

Looking back, after the first 9 or 10 months with no meds, no testing and no idea what was going on, my HbA1c had gone from 5.7 to 13 something which was pretty shocking. My weight was around 6 stone and I was pretty ill. I'd cut the carbs as soon as I was diagnosed and was having about 30g carb a day back then - just as well I was really as I'd have probably been dead otherwise. Anyway, as soon as I saw the consultant he put me onto insulin. I started on 6 units Insuman before bed. Within a couple of days, this had reduced to 4 units, then 2 units and then 2 units every other day. That went on for a few months and I had to start taking it daily again and then my BG started to rise during the morning so I added a morning 2 units of Insuman. After about 6 months I was on 4 in the morning and 2 at night but my BG was spiking after meals even though it was coming back down before the next meal, so I started using really small doses of Apidra with breakfast and tea - the Insuman and my own insulin was still managing to cover the low-carb lunch. Probably after about a year my post lunch levels were rising so I had to start taking 1.5 units Apidra with lunch. That was OK for a few months, but the Apidra and Insuman were combining mid-morning to cause regular hypos (which I was happy enough correcting with a finger of kitkat!) and my consultant wanted those stopped so I swapped onto Levemir - and it was all downhill from there! Fasting levels were the first to suffer so I gradually increased my evening basal to 5 units Levemir from 2 Insuman, then the late afternoon levels increased so I increased my morning basal and I had to change my theoretical ratio from 1:10 to 1:8 and was having to add more and more Apidra to cover protein etc. So over the following year my basal increased to 7.5 morning and 8.5 evening and my Apidra increased with each meal - my TDD was probably about 25 -28 units and this included corrections for high fasting and high late afternoon levels. My SDfromMean increased too from the 1.9 area to the 2.9 area, so more wild swings. Then it all fell apart badly during the early part of last year and I was correcting most days. Throughout this period my carb intake was between 40 and 50g a day as it had been since startng insulin. I assumed this was just the LADA progressing, but the switch back to Insuman in December has reduced my SDfromMean, reduced the fasting and late afternoon hypers, reduced my evening basal needs and reduced the amount of Apidra I need with breakfast and lunch. So, now I've no idea how much of my increased insulin needs were LADA progressing and how much were Levemir just being a bit **** for me!

It's been a real eye opener for me. Incidentally, for the first few weeks back on Insuman, I couldn't keep my BG up, it was like being in the honeymoon phase again so I wonder if our bodies simply sometimes need a change? Anyway, my TDD is now lower than it was for the last year and I expect it would be even lower if I switched my morning basal to Insuman as well. In fact, I think I've just convinced myself to abandon the morning Levemir and use Insuman instead!

Sorry, that was a long ramble through my insulin history - I bet you wish you'd never asked now LOL!

Smidge

P.s.,if your binge was the crazy Ben&Jerry moment I think you mentioned in a different post, I'd leave the full sugar ice-cream in the supermarket and invest in an automatic ice-cream maker and a bottle of DaVinci sugar-free syrup ;-)

Smidge
 
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Ian DP said:
I am told that one unit will lower my BG levels by 3.0, so a half unit pen will reduce it by 1.5, so clearly with a half unit pen you can start insulin earlier than with a one unit pen.
Click to expand...

Ian, a small point. I think that is rapid-acting insulin, not basal. Basal works much more gently than that - one might start with 2u and see what happens, which would be nothing dramatic. But even rapid-acting doesn't give fixed-ratio results. It depends on the time of day, the context, many things, and tends to give a range of results. Again, you have to try it (with some carb to hand if it goes too far), test, and see.

PS I think we are doing a good job here. I think we are giving useful, real-diabetes experience and with positive messages. I think it's great. A big cheer to you (and a self-sent one from me to me too). x Lucy
 
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smidge said:
Sorry, that was a long ramble through my insulin history - I bet you wish you'd never asked now LOL!

P.s.,if your binge was the crazy Ben&Jerry moment I think you mentioned in a different post, I'd leave the full sugar ice-cream in the supermarket and invest in an automatic ice-cream maker and a bottle of DaVinci sugar-free syrup ;-)

Smidge
Click to expand...

Thank you so much Smidge. I think detail is often really helpful. Really useful to see the contours. Which look quite similar, except that even despite your horrific high BG period at the beginning, you went up quite slowly. I'm thinking I need to pay more attention to times of day: bolus more in the morning, and eat earlier at night and just eat a lighter tea then. And ex more strategically. That might even get the TDD down.

On my binge, it wasn't the 2 tsps of Ben & Jerry's, it was a celebration meal at a friend's which turned into a gorge-a-supposedly-no-sugar-chocolate-mousse experience. Wine, friends, the chance to eat a dessert at last and therefore two - easy to do. It did take basically a week to get my waking blood sugar back to normal, tho.

I had two very marked highs recently, both from eating strawberries, which shouldn't have caused a problem as they're 5% carb. But I'm wondering whether some winter varieties may have been specially developed to be sweet out of season. I only mention it because it happened twice.

But I will google the DaVinci syrups.

Lucy
 
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