Type 1.5 (LADA) - Scared

worrywart

Active Member
Messages
33
Hi again all,

I wasnt going to post again until something "happened"but fortunately as of today September 10th 2012 im still getting "normal"blood sugars without insulin. Its now been 3.5 months since diagnosis. Anyway the reaon i broe silence was just to say thankyou for the beautiful message from tinawelch, it literally brought tears to my eyes and made me feel so much better about my situation. THANKYOU!

I'll keep you updated
Karl
 

worrywart

Active Member
Messages
33
Hi silvertiger

I can feel for your pain, we are in the same boat it seems. I have done a lot of research since being diagnosed on ways/means to beat this illness or at least make it easier. Heres what i do and im not sure if it'll work but i hope so:
So here's what i would do if i were you:
First change your diet IMMEDIATELY. If you are like me you probably eat quite healthy anyway and are most likely slim. As soon as i was diagnosed i changed my diet and i hope that is what has and will keep me going for a long time (touch wood) without needing insulin. Typical readings for me are 4.7 when i wake up, 4.9-5.4 an hour after a meal. For the first 3.5 months i went straight onto a PALEO diet, minimum carbs and energy sustained by increasing the fat intake. I eat eggs for breakfast every morning with bacon, spinach, sometimes sausage. I usually add some thickened cream into the egg mix for the extra fat. Lunch is a salad every single day with either extra virgin olive oil or low crab ceaser dressing for the fat. I have a MASSIVE salad with lots of meat and cheese for the fat. I add a whole avocado to it every day. I DONT eat fruit other than strawberries and thickened cream.
Dinner is always a bit more taxing because you need to think about it. Its alway meat/chicken/fish with veggies cooked lightly. I make cauliflower rice to go with it some days, most days just the meat and veg tho. I also throw in shirataki noodles sometimes (0 carb japanese noodles).
Preparation is key with this diet, i make prepare my breakfast and lunch all the night before. It will be hard at first.
Second for the first 3 months i ran 3-4 miles every day, mostly straight after my evening dinner to burn off any excess sugar. I was slim then - 12.5 stone and im 5'9". Now im 11.3 stone. You will lose weight even if you dont want to but you will stabalise. The biggest thing that loses the weight is the panic/stress, if you are like me when i was first diagnosed i was a wreck (see earlier posts) and was waking up several times a night sweating profusely. Im a lot better now but still think abot it most days.

Third and finally look at these:
http://www.youtube.com/watch?v=WPPGpVobyNo&feature=plcp
http://www.youtube.com/watch?v=lDvuBOkG ... plpp_video
http://www.youtube.com/watch?v=qILQfi-P ... plpp_video
Google something called "simply raw" its a dvd about 6 people that went on a raw vegan diet to get rid of their disease. One of the type 1's is apparently going totally without insulin now, he's kirt tyson in the videos ive linked to above.

Now i dont know if its a whole load of marketting **** but these videos were rare and I got extremely excited when i saw them. I got the simply raw dvd but i havent watched it yet. Even if it is bull it at least gives me hope that there is a solution.

My next step is to go on the raw vegan diet.
So far im still doing the paleo diet, but now i've incorporated a savory green smoothie every day. Im going to slowly phase out the dairy, then the meat, then the eggs while all the time re-introducing fruit in the low GI form. I had to buy a blender and a food processor to do these special diets by the way. If you are ging to try the smoothies get a blender with at least a 2L jug. You can make batches of smoothies in one go.

Anyway, as i said i dont know if any of this will work for you but i think its worth giving it a shot. You might decide to go straight up raw vegan and bypass the paleo. I have been following a girl on youtube called tasha who has been doing the raw/vegan thing and she is full blown T1. It seems to have reduced her insulin dramatically but she still needs it which is why i think this only works for some people and not others. There must be sub-groups of T1 that the doctors dont know about yet but i think if you have any beta cells left you stand a better chance of it working. Thats my insane thoughts anyway :D EDIT another thing to consider, which i am taking very seriously is going alkaline with your raw/paleo diet, it is supposed to have huge benefits to all round health and should be relatively easy considering veggies/fruit are all alkaline. I have ordered some alkaline drops which i'll be adding to the water i drink every day but ive heard you can get a filter tap that plumbs straight into your kitchen sink.

Look after yourself and let me know how it goes. I'll be updating on here every few months but if you need to contact me sooner send me a PM.

You are not alone, keep your chin up and keep telling yourself you will be FINE. The best description i heard about it was that its merely an "inconvenience"

Regards,
Karl




EDIT
I forgot to mention im still taking 1 x januvia 50mg a day, i dont know if its doing any good but my endo is using me as a guinea pig to see if the drug will preserve my beta cells as apparently it has done in mice

EDIT
I also forgot to mention that stress increases your blood sugar level, when i first found out about i started doing everything to help myself - i see a counsellor regularly, i do meditation, i do yoga, i read books a lot now and most importantly the run after dinner each evening for 3+ miles. I am no runner or fitness freak and it was death doing runs like that at first but after doing it for 2-3 weeks it gets easier. It took me a while to get my stress/panic under something that resembles control (around 2 months), it was horrendous and i still worry about it daily but the anxiety has mostly gone. My determination to beat this is keeping the stress away
 

SilverTiger83

Member
Messages
7
Hi Karl, thanks for the info and links.. :)

Since i posted i have been started on insulin, (it surprisingly doesn't hurt at all!) I was and am still getting high readings before eating anything in the day and no matter how well i ate throughout the day my GB just kept rising.. So this is my 2nd day on a fast working insulin to cover mealtimes, I haven't felt the benefit of it yet, as i still have Gliclazide in my system so after today my readings will be more true. It is trial and error with regards to dosage, but after a few more days or readings myself and my nurse will have a better idea of what to aim for, how many units to inject etc. My nurse has been amazing and is calling me several times a day to discuss readings and make sure i'm feeling ok.

You are correct, I eat healthily anyway (sweet or fatty foods have always made me feel ill so i avoid them) and I am of slim build. But of course anything extra i can do to make my diet even better is important! SO thank you for the info :)
I am feeling a bit better about things now I know what my course of action is, it was the whole "Don't know if you need insulin or not" that was stressing me out a bit. And the past 3 months have been pretty crazy with loads of appointments, blood tests etc, going from not knowing i was anywhere near diabetic to being on insulin..

How are you feeling day to day? I am here if you need to chat. Granted i don't know very much at the moment but i am here all the same. I find it helps to talk, last week just getting everything off my chest on here helped me deal with things, since i didn't really have anyone around me to talk things out with and i was at breaking point (also due to my other problems getting worse at the same time!)

Jen x
 

smidge

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

Glad you're feeling a bit more positive and that your beta cells are hanging on in there!

Hi Jen!

You'll be so much happier on the insulin once you get your doses right. There's nothing worse than high BGs and uncertaintly about your diagnosis and treatment. Once you know, you can get on with managing the diabetes and get on with life!

Take care both!

Smidge
 

SilverTiger83

Member
Messages
7
Hi Smidge,
Thanks, i hope so!
My levels are more stable than before but still a bit too high for my nurse's liking.
Almost 2 weeks on i am still feeling like absolute ****, which she has suggested may be down to something else other than diabetes as my BG is significantly lowered now so shouldn't be feeling as bad as i do :(
Jen x
 

worrywart

Active Member
Messages
33
Hi all,

Thought id give you an update into my weird situation.
To recap i was found with sugar in my urine some 6 months ago, i did a glucose test and it came back 15 and 16 after an hour and 2 hours. Was tested for antibodies and both GAD and IA2 were positive. Was diagnosed with LADA but was still generally in a good state (A1C 6.6%, fasting 5.6, c-peptide 0.9). Doc put me on januvia as he said it might slow the degradation of pancreas. From DX i read about the benefits of a paleo diet so went on that for a few months, kept taking readings each weekend, everything stayed normal. Around a month ago got rechecked (my request) for antibodies and c-pep. Antibodies were still present but the GAD had more than halfed to around 800. C-peptide had reduced to 0.4 (just inside normal limits). Cholesterol was a touch high due to the high fat diet i had been doing (5.7, just over the 5.5. normal threshold) Around 3 months ago i discovered the "Tree of life rejuvenation center" in the USA, the "Simply Raw" DVD and the book "There is a cure for diabetes. They all harped on about a raw vegan diet which had cured some type 1's. 10 weeks ago started on my raw vegan diet phase 1 in attempt to keep my LADA away at all cost. Last week i had my blood tested for a job medical - fasting was the lowest id ever seen 3.1 and my A1C was 4%. Cholesterol was down to 3.9 (amazing)

Which brings us to today....
Still doing the raw vegan diet, it was hard at first but is getting easier
Been going through good/bad patches of anxiety due to thinking about the LADA and other potential illnesses i could get, particularly thyroid. I am in a anxious phase now with heart racing sometimes and me overthinking bodily feelings attributing them to high BG (i run and check and am always normal, around 4.x)
Weight has dropped even further but stabalised now. Was 81 kg 6 months ago, now 68. Its not moving
Exercising 5 days out of 7, mostly resistance but i've started running again aswell

Dont know if the raw vegan is going to work but im doing it by the book, not making any exceptions and i am very hopeful.

Finally, i was successful with the job application so im moving back from Perth, Australia to London :)
Diet should be much easier over there with Tesco online.... :D
 

elaine77

Well-Known Member
Messages
561
I'm newly diagnosed with type 1.5 diabetes which is just another name for LADA and I can't stop stressing and worrying about it either as my results r so baffling! I'm taking a very very low dose of Metformin at the moment twice a day and I'm getting the best post meal readings (5.4) after lunchtime which is the only meal of the day I DON'T take medication with?? My post meal levels are always between 5.4 and 7 mmol but my fasting levels are high, I've went from 5.4 before bed to 7.6 in the morning??? I am producing insulin but its at the bottom end of the normal scale and I do have antibodies present aswell but the fact such a low dose of Metformin is working doesn't add up? I'm so confused and so is my consultant so he has told me to basically wait 3 months and see if anymore beta cells have been killed :'( on the plus side he said they are currently trialling implanting stem cells into diabetic patients to replace the beta- calls (or to turn them into beta cells) to try and cure diabetes but it is at an early stage.... Maybe if I delay this thing for long enough they might find a cure....it's e only thing keeping me sane at the moment as I am only 26 years old with a BMI of 22.5 so I'm not overweight, old, or obese...


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Messages
2
Hi,
I was diagnosed as probably type 1.5 a couple of years ago, I was put on insulin shortly after as the oral treatment wasn't working. I can understand your worries as I was fairly freaked out at the thought of daily injections for the rest of my life, but once you get your head round it, it's not so bad. I inject four times a day, NovoRapid fast acting to cover meals and Humulin 1 long acting at night. There is life after diagnosis, don't let the diabetes control your life, instead control the diabetes. I live a fairly normal life and can eat more or less what I like as I carb count and dose adjust to suit. Best of luck.
 

worrywart

Active Member
Messages
33
Thought i'd give you a minor update

After 18 from diagnosis, 14 months of doing the raw vegan thing these are my test results:

HbA1C 4.3%
Fasting Glucose 4.8 mmol
C-peptide 1.2 (range 0.51 to 2.72 from this site)
GAD 477 (still there but dropped again)
islet cell antibody negative

Not taking any medication and my new UK specialist doc has now changed his odds of me geting lada from 60% when he first met me in february to less than 40% now. He believes if something would have happened it wouldve done so in the first year. Im hopeful i've evaded it but will be continuing the raw vegan diet and introducing "normal" things back into my diet very slowly.

Karl
 
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elaine77

Well-Known Member
Messages
561
Hi worrywart, I'm totally pleased for u but surely no one can say they're not diabetic anymore unless they can eat a full baguette and be back below 7 mmol 2 hours later?

Surely not eating something ur body cannot cope with is not the same as curing its inability to cope with it in the first place? I would imagine any diabetic on a raw vegan diet would see those results because of the lack of carbohydrates in their diet?

I'm just as fed up as ever... No change in my condition 1 year on :-(


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 

kafanderson

Newbie
Messages
4
Type of diabetes
Type 1
I think I'm the same, my doctor says it looks like I have type 1 but my specialist nurse says I'm not a true type 1 because I had diabetes with my first pregnancy and that was 13 years ago, I'm now only just diagnosed with diabetes at 31! They also said I'm insulin dependant and not type 2 as I'm healthy young and not unfit or over weight, so confusing! It's been 3 weeks now and my sugar levels are still all over the shop xxxx



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DiamondAsh

Well-Known Member
Messages
641
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Disregard for authority. Noise.
I'm a terrible worrier... I took to my bed twenty years ago simply out of a panic that I was turning Diabetic. I was thinking of (and lamenting) all the nasty complications that go with it. That is why I am checking my BG levels daily and making sure I eat the right foods. You might be Type 1 but if you can keep your levels in a safe range you have a good chance of staving off the complications that come with it.

It's great that you are an active person. I'm not, not in the least, and I know that's going to be a problem for me (I can feel the anxiety brewing now as I write, thinking about having to exercise).

All the best, keep on keeping on :woot:
 

worrywart

Active Member
Messages
33
Hi all,

Following my last update my specialist doctor suggested to monitor my blood sugars in the future only by Hba1c every three months and in the preceeding 3 months introduce something more "normal" into my diet to see how my BS reacts. So i had my first hba1c since november recently and before i get to the result i have been introduciin more cooked vegan food, now eating a cooked (usualy a rice sort of dish) every second night. My anxiety still persists and Diamond Ash, i know EXACTLY what you mean from your descrption. I had a bit of a stomach bug in december which sucked and anxiety has been very bad lately so combined with the cooked food i expected a higer reading than last time.

HBA1C Feb 2014 = 4.2 %

elaine77 - my heart really goes out to you and i hope you start feeling better. I dont know if my body can handle a baguet and be under 7.0 later, but im not going to test it.... ever.....nor do test my bood eveer
Im not saying im "cured"or anything it just seems to be working for me and you should know my diet is about 70% carbohydrate. I have buckwheat granola for breakfast with lots of fruit, HUGE salad for lunch, nuts as snack and either a raw meal + salad for tea or a grain dish if its cooked night

If i can be of any help whatsoever (i dont exactly know how) please feel free to email me. If you cant see my email let me know

Karl

p.s. i still worry a lot!!!
 
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blackcat60

Newbie
Messages
1
Type of diabetes
Type 1
Hi just diagnosed as LADA on Monday. I'm on 8 units of Toujeo and 500 mg of Metformin x2. Anyone else out there in the same boat ? I'm also trying to gain back some of the 25 pounds I lost, it's not easy for me to gain weight , never was before I was diagnosed and seems even harder now . Help !!!
 

Maggieshauna

Active Member
Messages
41
Type of diabetes
Type 1
Hi blackcat60 I was diagnosed with type 1 on Friday...I'm on Lantus 10 unit and Humalog 3 units X 3 daily. I've lost 3 and a half stone very quickly. I've been given loads of information but I think we have lots to learn and quickly! Hope all goes well for you!
 

TorqPenderloin

Well-Known Member
Messages
1,599
Type of diabetes
Type 1
Treatment type
Insulin
The weight comes back pretty fast for most people. I lost about 40 lbs last year prior to my diagnosis.
 

JackMoody

Newbie
Messages
1
Type of diabetes
LADA
Treatment type
Tablets (oral)
Hi there, I just came across this (the original post) as I’m in the same boat. Can I have an update? Similarly I feel overwhelmed with anxiety about my pending pancreatic failure!