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LADA... totally lost

T

tassajara

Newbie
Messages
3
Type of diabetes
Type 2
Treatment type
Diet only
Hi everyone,

I have been struggling recently with my diabetes recently. I was diagnosed 2 years ago at the age of 24 with pre-diabetes and shortly afterwards, my endo ordered anitbodies testing which were positive for anti-GAD antibodies. I think the numbers were in their 500's. I was told it was autoimmune and to monitor it and return to the clinic in a six months or if my fasting blood sugars hit 10mmol/l.

My fasting blood sugars were okay between 5 and 6 most days with occasional spikes above it, and then my HbA1C's were around 6%. I checked my blood sugars regularly enough then. I read up about eating to your meter, watched my diet (didn't low-carb, just avoided sugar and white carbs) and exercised regularly (even managed to run a 10km race toward the end of 2013), and lost 10lbs and brought my BMI down to 23.5. All good things in my mind anyway!

I went back to the endocrinologist in January 2014 and updated him on all these great things that I was managing... and he gave out to me. He made me feel like I was being obsessive for following the diabetes team's recommendations. Don't get me wrong, I know my numbers were good but the reason they were good is because I was doing what they told me to do. He told me to come back to him in 2015 for another appointment. I don't know if he thought I was under some delusion that diet and exercise would reverse my diagnosis which I know it won't.

So because I'm an all or nothing person, I lost all motivation at that point. Exercise dwindled to nothing and I started eating whatever I felt like. My glucose monitor was thrown into a drawer for months at an end. I know it was a stupid reaction to have but I was frustrated.

I've started exercising and testing again, but my numbers have gotten worse. My fasting blood glucose on waking is between 7.0 and 8.0 most mornings. The only time when I wake up with it below 7 is when I have a low-carb dinner the night beforehand. I've been exhausted and thirsty quite frequently for the last 3 months, but some of that could be from training for an upcoming race. I've gone to my GP and he took bloods (we're waiting for my HbA1C to return but he already rang me to freak out about my fasting blood sugar being 7.2 that morning.

I guess my question is where to from here? I'm going back to the endocrinologist in May and I'm wondering should I start discussing medication with him? At what point, were ye started on medication?
 
Hi tassajara .... I feel for you. It is very frustrating when you take responsibility and control of your health, only to be 'put down' by the doctor. My theory is that 'I'm the CEO of me' and I'll decide what is best. The doctors are medical advisers; up to you whether or not you take their advice.

Unfortunately I am not qualiified to help you regarding medication. I am insulin resistant/pre-diabetic and GAD positive but my bloods are relatively good after the 2 hour mark. My endo says I am not diabetic, others on this forum think I am LADA in the honeymoon period. I am under an endo for other autoimmune disorders

I will tag @Ian DP and @LucySW as they are very knowledgeable. Although I can tell you right now that they will advise adopting a low carb diet in order to preserve remaining beta cells.

Out of curiosity, were you already under an endo for something else?

Lesley

PS - Welcome to the Forum!
 
Thanks for your reply, I only see an endo for the diabetes issue. Thankfully I've been lucky enough not to have any other medical issues.
 
Welcome tassajara!

Sorry you've had such an awful experience. I am afraid it's not uncommon for LADAs to get a pretty difficult time from the medics - most of them do not seem to understand how someone with 'Type 1' can manage their condition with diet and exercise. Obviously, LADAs are not full Type 1s and are still producing quite a lot of insulin in the early stages. Many of us were actually misdiagnosed Type 2 based on our age and their ignorance, so at least you got the right tests and right diagnosis!

The first thing to remember about LADA is that it is for life and it is progressive - you will require insulin at some stage and all you're really debating is at which stage. @Ian DP is very successfully managing his on a very low-carb diet at present, but that is not always possible for everyone. There is a theory that high BG kills beta cells and hurries the progression of our condition, so keeping BGs low might help to slow the progression. Certainly high BG is damaging to many parts of our bodies and causes terrible complications, so keeping BGs within a healthy range is paramount. If using insulin is the only way you can achieve that, that's the way to go!

I went onto insulin fairly early in my journey - about 9 months after diagnosis - it was the best decision I made as it has enabled me to keep my BG at a good low level. I use both basal and bolus insulins and maintain my HbA1c in the 5s with a combination of insulin and a low-carb diet.

Most medics would try you on some of the Type 2 diabetes drugs before insulin e.g. gliclazide and these can be effective for a while for some people, but personally I don't see the point of giving these to LADAs when insulin is such an effective treatment and, in my opinion, is the most appropriate treatment for LADA. With fastings in the 7s and 8s, I would certainly be considering insulin. However, reducing the carbs in your diet, taking up exercise again etc might mean you can continue without it for some time - if you want to. You might have difficulty persuading medics that you should have insulin at the stage you are, but very small doses of it gives your pancreas a break and helps you maintain good, healthy BGs. Depending on what your HbA1c returns, if you want to try insulin make that clear to your diabetes consultant - if he is negative, change diabetes consultant.

In the end, this is your condition, your body, your health - you choose how to manage it and what level of risk of complications you are comforatble with - the higher your BG the higher the risks. If your diabetes team is not supporting you, change diabetes team.

Stay on the forum - I'm sure you'll find some good advice and information to help you make the right decisions for you!

Smidge
 
Hi tassajara
LADA is a progressively worsening diagnosis. So you can expect at some point in time to go on insulin, on your journey to T1. If you want to delay insulin then most of us find a low carb high fat diet helps a great deal. I am LADA diagnosed T2 18 months ago then LADA 15 months ago. Officially on my hospital records I am T1 in the honeymoon stage. No insulin or meds.

I have been very low carbing for 8 months now, my BG levels are lower now than at any time since diagnosis. This is all down to very low carbing. I follow Dr Bernstein solution of keeping BG at normal levels (4.6 before breakfast and 5.6 2 hours after meals), this seems to have worked (so far) with me and seems to have halted or slowed down my beta cell destruction. I have an insulin pen, ready to use, when the time comes. It will come, but no idea when. On diagnosis my consultant told me I would be on insulin within weeks maybe a couple of months..... That was 15 months ago.

Insulin is inevitable, for both you and I. If you wish to preserve your last few insulin making beta cells then keeping to Dr Bernstein's 'normal' BG levels will in my opinion help..... But we are all different. I would recommend reading Dr Bernstein diabetic solution book (around £5 on kindle and iBooks).

A LCHF diet is a way of life. I eat food now that I could not have eaten 2 years ago (double cream, coconut oil, lots of meat)... Tastes change when diets change, I now love double cream etc.

Have a read on the LADA forum of previous posts. My thread / blog is 'can I prove the Drs wrong'. The more you read, the better educated you become. There is a lot to take in. Nearly everything I have learned has been from this forum, little from the NHS. Have a read, come back and ask more questions.
 
tassajara said:
Hi everyone,

I have been struggling recently with my diabetes recently. I was diagnosed 2 years ago at the age of 24 with pre-diabetes and shortly afterwards, my endo ordered anitbodies testing which were positive for anti-GAD antibodies. I think the numbers were in their 500's. I was told it was autoimmune and to monitor it and return to the clinic in a six months or if my fasting blood sugars hit 10mmol/l.

My fasting blood sugars were okay between 5 and 6 most days with occasional spikes above it, and then my HbA1C's were around 6%. I checked my blood sugars regularly enough then. I read up about eating to your meter, watched my diet (didn't low-carb, just avoided sugar and white carbs) and exercised regularly (even managed to run a 10km race toward the end of 2013), and lost 10lbs and brought my BMI down to 23.5. All good things in my mind anyway!

I went back to the endocrinologist in January 2014 and updated him on all these great things that I was managing... and he gave out to me. He made me feel like I was being obsessive for following the diabetes team's recommendations. Don't get me wrong, I know my numbers were good but the reason they were good is because I was doing what they told me to do. He told me to come back to him in 2015 for another appointment. I don't know if he thought I was under some delusion that diet and exercise would reverse my diagnosis which I know it won't.

So because I'm an all or nothing person, I lost all motivation at that point. Exercise dwindled to nothing and I started eating whatever I felt like. My glucose monitor was thrown into a drawer for months at an end. I know it was a stupid reaction to have but I was frustrated.

I've started exercising and testing again, but my numbers have gotten worse. My fasting blood glucose on waking is between 7.0 and 8.0 most mornings. The only time when I wake up with it below 7 is when I have a low-carb dinner the night beforehand. I've been exhausted and thirsty quite frequently for the last 3 months, but some of that could be from training for an upcoming race. I've gone to my GP and he took bloods (we're waiting for my HbA1C to return but he already rang me to freak out about my fasting blood sugar being 7.2 that morning.

I guess my question is where to from here? I'm going back to the endocrinologist in May and I'm wondering should I start discussing medication with him? At what point, were ye started on medication?
Click to expand...
Oh dear tassajara, I do feel for you. This was rotten.

First of all, what a bummer. This was very bad luck to come across such a discouraging specialist. People don't realize what may be the consequences of a negative comment from a professional. But now you're ready to get around it and take control yourself again. If you have to be forceful, so be it: I'm sure you can do that.

Next, waking at 7 and 8 is not okay. Two things to do about this, one of which is in your control and one of which depends on the doctors. I agree with Smidge: I would ask for insulin and be very clear that you are asking for it. If you do indeed have autoimmune diabetes, and the rising levels bear that out, it's just a matter of when you go on insulin. Levels of 7 and 8 mmol are too high: they bring complications with them, whatever your consultant thinks. You are the one safeguarding your future health - nobody else will - and you have work to do. If your consultant won't put you on insulin, ask to change consultant. And insulin really isn't that bad. I am on basal/bolus. Try to decide before your appointment whether you want fixed insulin (I don't recommend this but they may try), or basal insulin (the background dose), or mealtime insulin. Of these, mealtime insulin would actually be more useful to you, because it will enable you to get rid of your post-meal spikes. Anyway, try to work out in advance what you want, so that you can be clear in asking for it.

And the other thing that I'd recommend is proactive low carb. In my case it's LCHF. (I need the relatively high fat in order not to feel hungry, but also eat lots and lots of green vegetables.) I couldn't get my blood sugar low enough by diet alone, though I tried for six months, and I now take enough insulin to keep me at an average of c. 5.5 mmol. I know that I did suffer some complications before diagnosis, and I want to reverse them as much as I possibly can. Eating to your meter is key. If possible, you want never to go above 7.0.

Reading: read all around this forum, and read Dr Bernstein's Diabetes Solution. I'd also recommend Jenny Ruhl and Phinney and Volek, and perhaps also Jenny Ruhl's low carb book.

And don't worry - never mind the time that's lost, you're taking action before things get really serious, and power to your elbow. You'll start managing things now.

All the best, Lucy t
 
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