Type 1.5 (LADA) - Scared

[worrywart]

Hello everyone,

I am a 32 year old male with no history of illness, slim and no history of diabetes in my family. I moved with my partner to Perth australia 2 years ago where i still live to this day. This week i was diagnosed with LADA type 1 diabetes which has turned my entire life upside down.
It all started 4 weeks ago when i went to teh GP and did a urine test becuase i had been waking up at night needing a pee for a few months prior. The urine test came up with high blood sugars so the GP over a few weeks took some tests. First was the glucose tolerance test which came back high (15 then 16) after hour 1 and two respectively. Then the A1C which actually came back "normal" meaning i havent had high blood sugar for long at all and then finally some other tests i dont fully understand about antibodies which came back indicative of type 1. Anyway i got the final results monday and then went in to see a specialist tuesday. He confirmed i have a latent form of type 1 which in maybe a month, several months or even years will lead to me being insulin dependant (clearly i hope years).
At the moment i dont have any of the obvious symptoms of diabetes which lead the specialist to conclude my pancreas is still making a healthy amount of insulin. He has put me on type 2 pills though to try and reduce the degradation of my pancreas and given me a blood glucose tester from which he only wants 2 readings over the next week - 1 fasting, 1 after my biggest meal on any particular day.
I have never ate badly and as i mentioned i am not fat but probably havent done that much exercise over the last 12 months. I have been chronically stressed in work for the last 6 months though which is why i went for the new job.
Whilst i have met people recently who are full fledged type 1 and say it is a breeze to manage i am still a total mental wreck. I have been all shades of white over the last 4 weeks, had all sorts of symptoms from shock/anxiety and i am sleeping very poorly each night. Im seeing a counsellor to try and deal with the anxiety and panic i have aswell as exercising very regularly, doing meditation classes and yoga.

I feel very alone about this and Perth does not seem to be very geared up for helping people (mentally) with this condition. I see tonnes of information everywhere about type 2 in perth but there is hardly anything for type 1, particularly my "brand" of type 1. I know the insulin is coming and i know it wont be that bad (the specialist made me do it to myself during our appointment just to show me) but i am very very very nervous, getting upset all the time, sleeping terribly, panicking and even considering returning to the UK over this just to be near family.

Can anyone help please i dont know how to deal with this!!!??????

Karl

 

[Mileana]

Heya

I think it is entirely normal to have a reaction to getting told you have an illness which will stay with you for the rest of your life - so first of all, don't think that you are over-reacting. Your reaction is common - some get it really badly, some hardly get a reaction, but you are definately not in any minority when it comes to getting weepy, stressed out and even depressed. I think it is an honourable trait that you decide to deal with it and seek help.

Next - it is common to look for things to 'blame' or things to 'explain' why the bad stuff happened to you - it is a normal part of grieving. You will find, probably, that you will swing back and forth between denial, anger, bargaining and acceptance a few times over the next month or few months. That is normal too.

However, as your type of diabetes is LADA, Latent Auto-Immune Diabetes of the Adult, that means that your body is slowly (Latent) killing (auto-immune) your insulin producing cells which leads to you being diabetic mainly because of lack of insulin and that the progression of the condition happens over time (months, years) at a later time than the rapid onset type 1 which often hits children and teens. It also means that you haven't done anything wrong - your body just mistakingly attacks some of your own cells. You can't have done anything to make this happen.

You can however do something to try and control and compensate. If you have a look at the post Daisy always posts to new members, and probably will post here too shortly, you will see the connection between carbohydrates (sugar and starch) and the body's need for insulin. Cutting down on carbs will make your body need less insulin so your difficiency will be relatively less. You may find further information in the low-carb section and depending on your needs and the results you get when testing 2 hours after a meal, you may choose to halve your daily intake of these foods, or go really low (20-50g/day) in an attempt to achieve better control. It often works.

However, as you are LADA, you are right that at some point your body will be unable to keep up. Then you will need insulin. You shouldn't ignore the results you get when this happens - when you do all you can and your blood glucose will not be controlled by diet, exercise and oral meds. Being on insulin is a bit of hassle in the beginning as it takes getting used to, you bringing a couple more items in your handbag, and learning the finer adjustment rules and your own body's reaction. I do however find it much easier now 2 months later than I did in the beginning.

I think that you will manage okay - you sound like you are trying your darnedest to get your head around it and I think you will find this forum has a wealth of information - you are free to ask questions and look around. Take a look at the type1 forums too as well as the type 2 - you will get treatment at first which resembles type2 treatment, until that point comes where you don't produce enough insulin for this to work, and you will then be treated as a type1. Make yourself familiar with both, I would say. And ask your doc how you will know when this change happens.

Do remember to do things that you enjoy even in the middle of the shock and sorrow - you need something that will fuel you, cheer you up and give you something else to think about. Consider deciding on something to do, then stick to that, and perhaps make a daily 1 hour slot where you read, learn, worry and think about diabetes, then let it go for the next 23 hours and just stick to your diet decision - limit the influence a little bit and make a note of any thoughts so you can 'worry' about them/deal with them in your 'diabetes' time. That way you don't ignore it, but you also don't let it consume you.

Good luck.

 

[daisy1]

Hi Karl and welcome to the forum
Mileana mentions in her post the information that we post to new members. Here it is and I hope you will find it helpful.

BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS


Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find well over 30,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes ... rains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips
The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.
-------------------------------------------------------------------------------------------------------------------------------------------------------

Please sign our e-petition for free testing for all type 2's; here's the link:
http://www.diabetes.co.uk/petition/

Do get your friends and colleagues to sign as well.

 

[worrywart]

Thanks for the information Daisy and thankyou very much for the very detailed response Mileana, it must have taken you ages to write that out and i appreciate you spending your time to respond. While im sure i will survive and lead a perfectly normal life it is still just a massive shock for me and despite the needle thing being very painless it still makes me feel rotten to think in the future i'll probably be doing that at least 4 times a day. My counsellor has urged me not to worry about the future becuase it is totally non-productive worrying over something that hasnt happened yet, im trying to follow that advice.

Next - it is common to look for things to 'blame' or things to 'explain' why the bad stuff happened to you - it is a normal part of grieving. You will find, probably, that you will swing back and forth between denial, anger, bargaining and acceptance a few times over the next month or few months. That is normal too.

I think you are absolutely right, i have got a lot of emotional times to go through and i really wish be some sort of invincible being that isnt bothered by a thing. I've had a terrible month worrying about this and just want to be back to my old self again.

By the way i forgot to mention in the first post that for the past month, whilst i didnt have a bad diet to begin with, i have changed to only eating low carb - tonnes of veg, nuts, seeds, low GI fruit, lean meat, eggs, real grainy wholegrain bread, brown rice, brown pasta and shirataki noodles. I've also been hammering the exercise and will continue to do so from here on out. In many ways i wish this was type 2 rather than 1 because i can easily handle eating well and exercising because it makes me feel better about myself. But you are right by trying to exercise and eat well to stave the insulin dependancy off, im going to try my best regardless of whether it actually reduces pancreas destruction. I just hope it is held off for some time.

You mention writing a log of my thoughts and you are dead right, my counsellor has had me doing this for the last week now and i try to vent everything in 20 mins of writing before i go to bed. You are also right about thinking about diabetes for only 1 hour a day and spending 23 hours to be myself but unfortunately its dominating my every thought right now. I cant so much as eat an orange without panicking! I'll switch the computer off after writing this message and try and forget about it for this evening. Unfortunately i bet i'll have another terrible sleep ahead of me.

As a final note i know im lucky to have learned about this really early when i have no symptoms, most people with this illness only find out when they fall into a coma i guess. Oh and i have the utmost sympathy for parents with small children who get this, i can imagine it can be heartbreaking

I've got a long and emotional road ahead of me accepting this

 

[Mileana]

If you know about 'mindfulness' tecniques, they may be helpful also.

Basically, it is about recognising the thought you have, but letting it pass. It requires some practice which your log will also help you with - but saying 'Hey there is the thought about how terrible it is to have diabetes again' is worlds apart from saying 'Oh, diabetes is so terrible and I will never.. and I will always... and probably...' Just wave to the thought as it goes by, say 'Hello, you can be here too' and don't engage in it.

I am not trying to make light of your worries - merely a tool amongst others to try and not get lost in it completely.

'I don't like having diabetes but right now, I need to sleep. Tomorrow I will learn more about it. I can do that best when rested.'

'I don't know if an orange is the best thing for me to eat. Tomorrow I might know more about it. Right now, I need food, and this is the best option I can come up with.'

'I am scared right now. That is okay, it IS a major change. Gradually, I will get used to it. I am strong/clever/young/have support (pick a favourite) and I am not ignoring important things. I am learning - bit by bit.'

You will learn and accept it eventually.

Take care.

 

[Daibell]

Hi. You are not alone in having LADA. There are many on this forum who have normal or LADA type 1 with lots of advice and support. Quite a few T2s even have to move to insulin one day despite low carbs (I'm probably one of those). Yes, it is very frustrating but apart from having the best diet possible you just have to accept that you are one of very many sharing the same problem and there is a lot of help via this forum and other sources

 

[mbudzi]

It does feel all consuming to start with. But 9 months in I'm still alive and still enjoying life. I take courage from knowing that, but for medical advances, this wouldn't be the case. The insulin, the eating restrictions etc etc that get me down are really my way of cheating death. It's a perverse sort of logic, but knowing that the tough thongs are really my partners in squeezing some more time out of life had helped me turn dome dark days around.

Wishing you well in finding your way of making yourself the master of it, not it the master of you.

 

[worrywart]

Just thought i'd give an update

Its been 2 weeks since i was diagnosed with LADA now. I'll go over the good news first...
Firstly i discovered the specialist who i saw the day after the GP diagnosed me is apparently one of the best diabetes doctors in western australia, probably the whole of australia so im happy im in safe hands. He told me its LADA, its coming but at the moment my body is still making a healthy amount of insulin so im to take one tablet of "Januvia" daily which he says has been shown in mice to delay the degradation of the pancreas from antibodies or whatever. So no insulin yet (phew). He also asked that i take two blood glucose readings within a week of seeing him and email him the results. I waiting til the very last day of that week in an attempt to get my stress/panic under control so the reading is the most accurate. The reading before breakfast was 4.4 nmol and the reading an hour after my largest meal of any one day was 6.6 nmol - both normal (phew). Despite him not wanting any more readings til i see him in a month i took some more at various times, all coming in between 4.2 and 7.0 if i recall correctly so normal (phew). I even took one reading when i woke up for the nightly pee which i've developed over the last few months leading up to this - the reading was 5.4 - normal again. So the good news is basically my pancreas is working normal at the moment and im eating extremely well (low carb) and exercising vigorously in my own attempt to keep it that way as long as possible. The specialist did say these things probably wont help but are good for me anyway....
He did however give me some inspiration, for all those who are LADA this is for you and me. In the past he had a young man come to him with diagnosed with LADA, he gave him the same medication as he has me, months went by, years went by and finally after 17 years he finally became insulin dependant. Seventeen years will do me just fine! Im hoping a cure will be around by then! Please dont crush my dream with any replies by the way....
My panic has now subsided, stress has lowered and although it still dominates my thoughts most days im a lot better than when i first wrote this thread. I have good days and bad days

Which leads me into the bad news... Im still wakign up in the middle of the night needing a pee, my sleep is still broken albeit not waking at 2am and staying awake panicing/sweating buckets bad, i still have a sense of dread hanging over me and think about the "illness" coming in the future and what i'll have to do to manage it, im still over analysing bodily feelings e.g. if i get shaky or slightly light headed - probably normal but im always putting it down to the condition and i still have times when i get very down and feel like crying.

Im hoping by the positive readings i've been getting that i've got some breathing room before i go on insulin but deep down i just dont want this s**t to come

Thanks for your kind replies everyone

If anyone has any stories of LADA type 1 taking a long time to come out feel free to write some inspiration

 

[worrywart]

Hello again,

I have another update incase anyone is interested. I went to see my specialist again lastnight, one month after being diagnosed with LADA type 1. I gave him the two BG readings i mentioned in the last message and he was happy my body is still producing a healthy amount of insulin. He now doesnt want to see me until my BG readings get consistently above 7.0 fasting or 10.0 an hour or two after my biggest meal of the day. Im to test my BG two times each week until this occurs (fasting an after main meal).
He also clarified a few things for me:
The GAD test that was taken a month ago did reveal high antibodies, where its supposed to come out less than or equal to 1 mine came out greater than 2000 which kinda horrified me because it made me realise this is very real and any chance of a mistake having been made is impossible.
My C-peptide levels came back normal at 0.9, well within range so he said although he suspects half of my islets have already been destroyed the remaining half is still working well (for now).
He is giving me Januvia as a sort of "trial", he says they have shown to slow the degredation of islets in mice but have not be tested in humans. He says they wont harm me, i.e. accelerate it and he is hopeful they delay the damage as hoped.

So lastnight, once again i slept terribly and today i feel rotten. Its like my world is collapsing, suddenly im doing really good the next im sentenced to a lifetime of illness. Most of the time i feel like crying, im always worried, nervous and just all round feel terrible. Its like being stuck in a nightmare i cant wake up from. Im still seeing a counsellor to try and accept this but at the moment i cant see there being any mental relief any time soon.

The specialist said he would be very surprised if he heard from me before christmas and is looking to hold our next appointment in march 2013. Whilst he is optimistic i'll get 9 months or even a few years out of this before i go insulin dependant i am not.

Can anyone give me some reassurance that the management of this wont be that bad??? Something along the lines of "its a breeze", "its just an inconvenience" or "its probably only going to be four little pricks a day, no more than 5 mins of your daily time!"

Help

 

[cteld]

Hi,

Have you read Dr. Richard K. Bernstein's Diabetes Solution? I thought of it when I read your posts. I think you'd find it valuable.

I read the book several months ago and was really amazed he's not a household word in diabetesland. He was a Type 1 who several decades ago basically started the VERY low-carb movement (not just low carb) for diabetics and then became a medical doctor in order to get his findings published and of course to treat diabetics. For people who are insulin-dependent or on the way to being so, he has very specific techniques for balancing insulin and carbs that basically reversed many of his complications in himself, and I understand he's also had success with many of his patients.

Anyway, what made me think of him when I read your post is that Bernstein apparently believes that his techniques for controlling blood sugar can help Type 1s who still produce some insulin to preserve this ability for a long time. (He expresses regret that he didn't learn this before his own pancreas conked out on him.) He also evaluates ALL the diabetes drugs out there and updates his book every few years with the latest ones. His program is pretty strict in terms of the carbs you can eat - like, brown rice and pasta and potatoes and the like are too fast-acting to bring blood sugars down enough in his opinion. I don't follow his program strictly at all, but I may yet go that far, as I'm prediabetic with worrying neuropathy symptoms that haven't gone away on up to 80 carbs a day. (He recommends about 30, if I recall, eaten in a regular-as-clockwork fashion, each day.) It sounds intimidating, but it's a very convincing book and has extremely practical advice for how to manage the condition. It's obvious the guy really wants people to be able to get the better of this disease.

 

[Mileana]

Hi again, Worrywart

So, I am LADA on insulin, and am also doing low ish carb.

Before I was put on insulin, I took some pills - they didn't agree with me - I was allergic to some of them. I would generally worry because I was not really able to take care of myself the way I was supposed to because of this fact.

I asked to be put on insulin. Insulin has few side effects and I realised I had to do something to control my blood sugar.

What it feels like for me?

I get up in the morning and check my blood sugar, then I inject some long acting insulin that will last me all day. Then I decide on breakkie and inject some insulin to cover the carbohydrates in my meal. A couple hours later I check my blood sugar again.

Before I eat lunch, I have a guess at how many carbohydrates are inside the food, then I inject a short acting insulin to process this amount. A couple hours later, I check to see whether I was right.

Before dinner, I do the same and take the insulin that goes with this meal. Then I check a couple hours later.

Before bed, I test my levels again and inject some insulin to cover my night time need for insulin (long acting).

When I exercise more than I normally do, I check my blood sugar every 30-45 minutes to be sure it is where I want it to be - otherwise I will have a snack half way.

Injecting insulin is a bit strange at first - I had 2 days where I found it difficult to put the (btw tiny) needle into my tummy. It doesn't hurt though. It's just the mental barrier. You inject into a pinched area of fatty tissue which doesn't really have nerves or anything.

I am a bit of a slow person when it comes to insulin injections, so I think the whole process of taking 2 insulins takes me 3-4 minutes from I start the test till I've done both. I use insulin pens.

You will have to carry your meter almost anywhere you go, but you can get them really small - I use mine now as a combined purse and meter, heh. My card and a bit of cash is in it too so I won't forget one without forgetting the other. If you are expecting to need to eat out, you'll need your insulin with you. I bring mine in a pencil case of neophren - the pens are the size of a speed marker, so it's not like you need a whole medical bag.

While you learn insulin when that time comes, you will want to record the things you eat and work out your carbohydrate/insulin ratio. This is a bit varying throughout the day, but is not a very difficult thing to learn. It deals with how much carbohydrate you can eat for each unit of rapid acting insulin you take. This allows you to do the meal time checks and look at your food and get it right when you decide how much insulin you need.

Insulin for me has meant I can now actually control what my blood sugar does. It has made me aware of the connection between my weight and the carbohydrates I eat. It has made me a lot more confident in making decisions regarding my own health. I can do anything I could before, just better because I am not bothered by high blood sugars, seldomly bothered by lows because I have learned to adjust, and because I am more aware of my body's signals.

It is a month at first of a lot to take in, then as you learn to adjust and make good decisions about your insulin with a bit less immidiate help and directions from the diabetes team, you are likely to find yourself empowered in that you can be pretty flexible about what you eat, your exercise and daily life.

 

[Daibell]

Hi. Good to hear you are in the hands of a diabetes expert. As you may know, Januvia is the brand name for sitagliptin which I've been on a for over a year now. With some side effect exceptions it's a good drug as it works by supressing an enzyme that in turn switches off the pancreas producing insulin too early. It doesn't 'hit' the pancreas in the way that gliclazide does , doesn't affect weight and doesn't induce hypos as it stops working when sugars come down to near normal. I was interested that it may help delay the effects of antibody damage.

 

[worrywart]

That was a brilliant response Mileana thanks for that.
I was going to pm you actually because i saw in your signature you have virtually the same condition as i do and im glad not to be alone (although i still wish neither of us had it). As yet i dont have high blood sugars which is why my doctor hasnt put my on the insulin yet, i dont want to go on it just yet either becuase im still a nervous wreck.

Can i ask, how are you feeling mentally now?

From your message you seem very strong and like it doesnt bother you at all. Is this correct or were you scared for a while and now it has passed? Everyone is telling me to get my stress under control because that will probably bring the insulin closer and when it does make it harder to manage my blood sugars.
I am very nervous, as i write this im sat in work at my desk and nothing but diabetes goes through my mind, how it happened to me, what is to come, when it will come, what should i rule out of my diet next etc? At the moment i am trying everything in my power to keep this away as long as possible, exercising vigorously, yoga, meditation, reading, healthy diet, low carb (or no carb). I know i must accept sometime but this has come around so suddenly that i just dont feel ready for it yet.
My hope is that if i can keep it away for a couple of years then i wont have to deal with it so long until they find a cure (yes i know im probably deluded but hope for a cure is the only thing that keeps me going).
Look at this:
http://denver.cbslocal.com/2012/03/09/cu-researchers-find-cure-for-type-1-diabetes-in-mice/
It sounds really promising and i have to believe he will succeed.

Karl

 

[Mileana]

There has been times when all I wanted to do was call my diabetes nurse and yell at her: Look, I haven't a clue how this is supposed to work, lady! Give me answers - now! When I had my first hypo, I was very concerned. When I had done the best I could, and had a blood sugar of 15 anyways, I was fairly angry. I was not given much information about carb counting, dose adjustments and exercise at first.

My nurse is good, though. They had just not expected, I think, that I would want to control it this much so soon - I read the whole internet, asked people on here and did some really hard thinking about it and I think it was only a couple weeks into it that my Nurse wrote me back on one of my mails with numbers and questions: You go girl! I've not seen someone picking up on all these nuances so quickly for a loooong time!

The first bit was a wobbly start and I had to take some leap of faiths that I didn't feel entirely ready for, so it's not all been easy.

I am quite used to working with my health professionals to find workable solutions and I don't tend to just accept 'just because'-answers unless I can get an explanation, so I think sometimes they're a bit tired of me, and sometimes probably they're challenged and impressed.

For me, as I have probably said before, the more data I can get, the more experience, the more sense something makes to me, the less afraid I will be, and the more confident I'll be in making decisions that I need to make and which are likely to be right.

Every now and then when something new turns up that I can't make sense of, I will be apprehensive. I'll search for answers, explanations, ask around and then when I have enough that points in one direction, I will have a go at it - carefully at first, and then slowly, that will be in my repetoire of things I know how to cope with.

I'm not super-woman. What I am pretty good at is bouncing back, though. I don't have the ability to give up, but I do have the occasional day when I think - what IS the message of this blood sugar? Why DOES it do this? What AM I supposed to do about it.

What I think you need to do also, along all the good things that you are trying to do, is get hold of this person you were before all this was revealed. What did you like to do? Where would you be on a Sunday morning at 11am? What did you talk to your friends about? It may be that you don't feel completely in sync with these things, and I think that is normal when you have a bit of shock and grief going on, but I would try doing them anyway - if the diabetes thoughts pop up, tell them 'Hey, gimme a break, I've dealt with you and now it is Karl-time, and I'll be back to deal with you again in a couple hours - right now, I am having fun, because I'm still the same person.'

The factor of the when and why are tricky ones, because noone can know for certain. What you can do though is make a plan for what and how. Not Why did it happen and When will I need insulin, but more like What am I going to do to take care of myself, my body, my mind, my wellbeing? And How am I going to know when that moment arrives, so I can deal with it as quickly as possible, and how am I going to do that at the time? What are my goals for the next month, 6 months, and how am I going to achieve them?

Some answers could be 'I am going to eat this and avoid that' (Make a document, or copy Viv's modified atkins diet advise).
I am going to monitor my blood glucose at these times, and I want the result to be .... I will then add or subtract items from the list to match these results and get a better reading next time.
I am going to exercise this way at these times. I am allowed to skip max 1 a week or if I am sick. I will do it for x minutes and then I will stop, knowing I have done what is recommended and sustainable.
I will talk to my family, friends... about other things than my diabetes, but I will also sometimes talk about the things that concern me. I will make time to enjoy life with a good book, a nice film....
I will ask questions to everyone whom I suspect has knowledge about it. I will accept a certain amount of confusion, but I will keep going until the answer reveals itself.
When I get to that point, I will need insulin. I will read a little bit about it now when I feel I have the surplus, so I have a basic knowledge about it.
I will have the checks done that go with having diabetes.
I will notify my nurse/doc when all of these things fail to work to get me proper control so I can get better treatment before things spiral out of control.

Really, the more you can put down on paper in a sort of action plan, the more free time your brain will have. Then every week, have a look at what needs adjusting - alright, this week, I tried so and so, that seems to work better than what I did before, I'll include that - however, those chips I had on Friday were really a terrible choice, I'll put them on the 'don't eat' list.

It will also make it possible to see how you progress and take charge, what you learned... And down the line, you will smile when you read the mistakes you made in the beginning, which now seem like the end of the world, and slowly you will learn that making mistakes is not often as bad as you think at the time, and that it is valuable experience for the future. You just really need to zoom in on the things that you learn, and I bet that in a not too distant future, you will be able to face a problem and say 'Sh/t, I don't know what to do about this now. However, I have solved all these problems before, there's a really good chance I can figure this out too. Now let me think, what is my best options and who can I ask about this to make me a bit more sure I am making the right decision.'

Feel free to PM me whenever you feel like it. I don't know everything, far far from it, I am just pretty used to working with myself in a way similar to above and I do find it works.

 

[worrywart]

Hi,

Have you read Dr. Richard K. Bernstein's Diabetes Solution? I thought of it when I read your posts. I think you'd find it valuable.

I read the book several months ago and was really amazed he's not a household word in diabetesland. He was a Type 1 who several decades ago basically started the VERY low-carb movement (not just low carb) for diabetics and then became a medical doctor in order to get his findings published and of course to treat diabetics. For people who are insulin-dependent or on the way to being so, he has very specific techniques for balancing insulin and carbs that basically reversed many of his complications in himself, and I understand he's also had success with many of his patients.

Anyway, what made me think of him when I read your post is that Bernstein apparently believes that his techniques for controlling blood sugar can help Type 1s who still produce some insulin to preserve this ability for a long time. (He expresses regret that he didn't learn this before his own pancreas conked out on him.) He also evaluates ALL the diabetes drugs out there and updates his book every few years with the latest ones. His program is pretty strict in terms of the carbs you can eat - like, brown rice and pasta and potatoes and the like are too fast-acting to bring blood sugars down enough in his opinion. I don't follow his program strictly at all, but I may yet go that far, as I'm prediabetic with worrying neuropathy symptoms that haven't gone away on up to 80 carbs a day. (He recommends about 30, if I recall, eaten in a regular-as-clockwork fashion, each day.) It sounds intimidating, but it's a very convincing book and has extremely practical advice for how to manage the condition. It's obvious the guy really wants people to be able to get the better of this disease.

Just ordered it from book depository!!! Thanks for the tip

I'll go to the nth degree to keep this thing at bay for as long as possible

 

[worrywart]

Hi. Good to hear you are in the hands of a diabetes expert. As you may know, Januvia is the brand name for sitagliptin which I've been on a for over a year now. With some side effect exceptions it's a good drug as it works by supressing an enzyme that in turn switches off the pancreas producing insulin too early. It doesn't 'hit' the pancreas in the way that gliclazide does , doesn't affect weight and doesn't induce hypos as it stops working when sugars come down to near normal. I was interested that it may help delay the effects of antibody damage.

Hi Diabell,
Thanks for your message i too am interested whether it can help delay the antibody damage, i trust my doctor but i also understand that im somewhat the guienea pig in that he's never tried this on a LADA but i guess since it worked in mice it could work in me. As i said in my previous post the doctor said he would be surprised if he saw me again before christmas and has pencilled in a date in march for a review. Clearly i hope i get that far without insulin but i would prefer it to be MUCH longer i.e. years.
FYI im doing the low carb/GI thing trying to restrict myself to 30g carb max per main meal, i exercise 6 days out of 7 quite often with it being a 3-4 mile jog and trying not too stress (trying) since im positive that will only shorten my non-insulin window. By the way im no superman at exercising, i am slim (just under 12 stone) but i only do as much as i think is enough - about 30-40 mins for my 6 days out of 7. I NEVER run on a treadmill at the gym because its soul destroying, rather go for a run around the neighbourhood where you can go at your own pace, think about things and see some nature which also makes me feel better.

As you probably saw in my last post i've ordered a book which may reveal some tips to delay this but i do think getting down to 30g carb a day will be difficult.

My goal is to keep this at bay for as long as possible so the time i have to do insulin until a cure is discovered is not so long. I can deal with 10 years on insulin i guess but i dont want this to be forever.

Either way we are in the same boat it seems, at least neither of us are alone
Stay in touch

EDIT
By the way i thought of something that a friend of a colleague who has had type 1 since 11, him being 50 now, told me. He told me whilst my blood glucose is normal i should be enjoying myself and getting drunk, eating everything and anything etc. Just so you know im obviously NOT going to be doing that and i wouldnt recommend you either :lol:

 

[smidge]

Hey worrywart!

Just wanted to say Hi! I also have LADA. I was originally misdiagnosed as Type 2 about three years ago. Unfortunately I couldn't control my BG and after lots of tests I was diagnosed with LADA and went onto insulin 2 years ago. I cried and cried at first. I was just devastated. But insulin has been the best thing I ever did! My HbA1c is good and I have much better control. I'd be lying if I said insulin didn't affect your life, but it doesn't rule it. Please don't fear it. Whenever it comes to you, whether that's one year or 17 years, you will cope. It is just a tool to help you stay in charge of your diabetes and to keep well and complication-free.

Take care

Smidge

 

[worrywart]

Hi Smidge,

Thanks for your great answer, you made me feel much better about insulin and i know i'll eventually come to terms with this - especially when my BG starts going high. I think im still in shock and i hope it will pass. Anyhow i'd like to keep in touch with you if you dont mind so i might add you as a friend if thats ok. Although my BG is fine now, the biggest problem i have is the stress which i believe will bring insulin dependance closer as the pancreas works to keep cortisil/glucose levels down produced by the liver when i panic. I sleep poorly 50% of the time now (better than 100% of the time when i was first diagnosed) but i do spend a lot of my days feeling nervous and i cant help but feel these nights/days are when the islet destruction is accelerated the most. As such im going to try and beat the stress by continuing with yoga, meditation, exercise and breathing techniques to hopefully overcome it. Its weird aswell, some days i can easily accept that im going to be insulin dependant like its not that big a chore but others i feel like all hope is lost.
Im going to take a break from this forum for a while and only report back periodically on how my BG is going. The doc wants me to test two times a week until they start going high which he expects will be within a year. I hope longer and im doing everything i can now to "help" with this. Im now on Dr Bersteins 30g a day very low carb diet, exercising, doing yoga/meditation, reading to destress and of course takign the 1 januvia pill a day my specialist has said delayed the pancreas destruction in mice (but not tried on humans). Hopefully all this will help which if it does might be good for all LADA's to follow.

So as of today im 2 months since diagnosis, BG fine so i guess ive still got a bit of time left til insulin (touch wood)
Keep you posted

Going to stop thinking about diabetes for the day now and smile

Karl :mrgreen:

 

[tinawelch]

Hi Karl,
Sorry to hear that you have been so worried about your diagnosis.
I promise, this isn't the end of the world.
My diagnosis was a complete surprise too, 18 years ago - I was 'discovered' after checking in to hospital for an operation and having the routine, pre-op, tests.
The nurse was so excited as she had never diagnosed a diabetic before! My instinct was to run as far away as possible but, of course, it wouldn't have helped.
I was a couple of stone overweight at the time so tried losing weight first of all, then, when my 'pee sticks' were turning black with every test, they put me on Metformin.
Eventually, I felt so ill that I called the local hospital diabetic group. They said it would take several months to see a consultant but after I broke down on the phone, they prioritised me and I saw someone the next day.
I had no idea how ill I had been feeling, until I was put on Insulin. The difference was amazing! The 'fog' lifted and I finally managed to stay awake for more than an hour at a time! My work productivity increase 10 fold!
I know you aren't feeling ill but I just wanted to let you know that moving onto Insulin is not the end of your life.
My only beef is that I didn't know about low-carbing and managed to slowly acquire an extra 6 stone - not good when you are only 5ft tall.
But you, my friend, have come to the right place!
You say your family are not with you - well, I think you have found a new family on here.
There are people here who are knowledgeable about pretty much anything you need info on and are there for you whenever you need a helping hand. I would say that, anything you have a question about has already been experienced/felt by others who know just where you are coming from.
This is the begining of a new phase in your life and the future isn't orange - it's a bright sunny yellow!!

Tina. xx

 

[SilverTiger83]

Hiya, I am a newbie to the forum but also a newbie to the world of diabetes. I too have been diagnosed as LADA Type 1 a couple of months ago, i am a 28 year old female, I have been struggling with my sugar levels as they have been high for so long (I have other health problems which kind of masked my symptoms!) that my body is now struggling to run on lower levels.. Generally on a good day I'm at 11 before breakfast and 21 before bed and i am very rarely in single digits. I am currently taking 2 x 80mg Gliclazide, morning and night but clearly it isn't working, I had a reading of 27 the other day which gave me a bit of a shock. A background insulin has been ordered by my nurse and is now sitting in my fridge until i get the go ahead to use it along with the Gliclazide to try to combat this BG.. To start with they weren't sure if i was diabetic at all, it was a random blood test that was high while my doc was trying to find out why i was so tired all the time.. I have had shaky episodes for years and had been tested several times for diabetes with a 'borderline' result but it was still a shock when the test was positive and now, 2 months later they are saying i could be on insulin within a week! If i do get lower readings it's purely because I just haven't eaten very well, the things i eat are healthy but i have a habit of just not eating enough which causes me problems, having to make sure i eat is exhausting in itself and i am bored of constantly having to think about eating. I'm glad my diet was good to start with though, i don't have to rule anything out. As soon as i eat anything my BG goes up so generally i feel like **** all the time. Docs have been as helpful as they can be with regards to info, and luckily we have a very good diabetic clinic at my local hospital, although i haven't found any proper support round about me. I am an emotional wreck justnow, just hate my body for falling apart. I have so many other problems that this has just pushed me over the edge. It's good (but not good at the same time) to find people who are in a similar situation to me.. Any info or advice is most welcome x