Help! Potential LADA, struggling to get a clear diagnosis…

[Ian DP]

My diagnosis was much the same as yours... Aged 58, T2 then T1 (LADA) with a GAD test of over 2,000. My diabetic consultant told me to stop taking Gliclazide immediately and that I could continue with metformin if I wanted (but I didn't). He said I would be on insulin within weeks, a few months at the most. I started to low carb and eat to my meter, testing one hour after each meal, to establish what food raised my bg levels, I then read Dr Bernstein's diabetic solution book (£5 on kindle / iBook) and have been following it for over a year now. 18 months on, and I am still not on insulin, and my average pre breakfast bg levels are under 4.6. My latest hba1c (last week) was 5.1%.
I do have insulin at home (in the fridge) ready and waiting. As soon as I my bg levels are around the 7s I will be taking the insulin.
I know I will be on insulin sometime (as you will be). This will likely occur when we are ill (virus etc).
If you low carb (Dr Bernstein's recommendation is 30g per day) and do some exercise you will definitely be able to keep off insulin longer. But how long is impossible to tell. If you want to keep off insulin for as long as possible, then I do recommend you read Dr Bernstein's book.
Keep us posted on your progress.

 

[Fido78]

Hi consero. I was diagnosed 22 dec 2014. Like yourself I was 36 years of age and also a slim guy. Atleast my doctor ordered the antibodies tests right away and said he was sure I was Lada/type 1. I was put on insulin from the start and this was a good decision. I am currently eating LCHF and having good bloodsugars. I have some betacells left for now and this helps keeping my bloodsugars pretty good. I would advise you to go low carb as my bloodsugars got stabilised very fast this way.
Good luck!

 

[viv k]

This forum is helping me understand my diabetes. I've posted elsewhere about my confusion about my diagnosis, I suspect LADA. My HbA1c was 43 (6%?) in late April, but 54 (7%) last week.
I've been on a low carb/low GI diet for over a year and test my sugars regularly. I noticed an increase in early morning fasting levels (ave 6.5 a year ago, ave 8.5 recently), also getting higher spikes after meals (1/2 pita pocket with falafel & salad giving me a reading 11 2 hours after meals a year ago, last week sugars still at 16 3 hours after eating) I can usually get my reading into single figures with a 15 minute burn out on the stationary bike, thanks to others on this forum, I learnt about how that worked. Exercise is great, but not possible during the working day and, to be honest, with temperatures close to freezing in the garage where the bike is ( midwinter over here) for the last few weeks I haven't been on the bike, or for a walk, after every evening meal like I usually do.
I saw a different doctor last week and explained that I was getting tired and stressed trying to keep my blood sugar under control. She looked my previous HbA1c readings, told me I was doing really well, she said that they don't like type 2s testing and that worrying about testing all the time was stressful and that the stress could be increasing my blood sugar!
What I find stressful is that the doctors I have seen don't seem interested in finding out whether my high blood sugars are due to insulin resistance or lack of insulin production. Thankfully this doctor did agree to more tests and I should have the results of GAD antibody, c-peptide and 'islet ab' tests next week.
I am guessing that others here will be almost the only people who understand why I am hoping to find out I'm latent type 1 and that I can start insulin soon. If I happened to be insulin resistant and got a HbA1c that high on a low carb diet with a BMI of 21, then my long term prognosis would not be good.

 

[Ian DP]

Hi viv
It does sound like you could be LADA. Good that you have had a GAD and c-peptide test as this will establish whether you are a T1. (LADA). With your BG levels, It does sound as if you Need to go on insulin. The earlier you do so, the more healthy insulin making beta cells you will retain, which will help keep the quantity of your insulin requirements down.
I find a one hour cycle reduces my BG levels by 10 to 20%. In winter I use an exercise bike in front of the TV. Without it my BG levels would undoubtably be higher. Keep us posted with your gad test results.

 

[viv k]

Still waiting on GAD test results, a nurse phoned the lab who said it can take 4 weeks!
Meanwhile, in spite of being told not to, I am testing . Last May my average morning fasting reading was 7, this May it was 9, this week it averaged 11.
I got a letter from the eye clinic which said I have "early signs of diabetic eye disease" and they want to see me again. In April 2013 my HbA1c was 39, it was 50 in April 2014. With diet and exercise I kept it around 43 right through to April 2015. I've only gone high again recently (54 in early July), it doesn't seem like much time has passed for my eyes to be affected, so I really want to get my sugars under control. I'm willing to go onto insulin, I have no problem with injecting (I'm a dentist, I'm quite used to needles and my patients tell me I'm good at giving shots)
My concern is that the tests will come back negative and I'll be told I have made my sugars high by worrying and they'll give me metformin and send me home.
Health professionals say not to worry and try not to think about it, but when you are on a low carb/low GI diet and using exercise to get your sugars down, you can't "not think about it". You have to think about it everytime you eat (or not eat) something and everytime you go for a walk, or bike ride, after a meal when other people are sitting watching TV.
One day last week I had the same lunch I've had for the last year and 2 hours later my sugar was 19.6. I had been having an ordinary (sedentary) work day, not especially busy.
I know I am stressed about this, but surely I'm not making this happen just by worrying.

 

[Ian DP]

Hi Viv
My GAD test took 5 weeks. I think they have to send it off to specialist labs for testing.
It does sound like you need to go on insulin. Worrying about it doesn't help, but I can't imagine it's all down to worrying. T1s in the honeymoon period have deteriorating insulin making beta cells, which deteriorate faster with high BG levels. Going on insulin will help lower your BG levels and thus slow down your beta cell deterioration.
You say you are low carb. Can you go very low carb, say around 12g carb per day. You might find this will lower your BG levels, at least temporary until you know more about your diagnosis and can get extra hospital /GP support.

 

[Fido78]

Hi Viv
You sound pretty much like myself, very slim and with high bloodsugars. As you are very slim odds are that you are lada rather than type 2. I myself was not able to get bloodsugars down without gooing on insulin. You should be gooing on insulin even if it would be temporary. You really need to get your sugars under control. My eyesight was poor when diagnosed but has become normal very fast when bloodsugars normalised....

 

[LucySW]

Courage Viv. Cross that bridge (the wrong result) only if and when you come to it. At least you've had the tests now and need only wait.

Yes, of course you need to get your BG right down, and if you're low carbing and exercising and sugars are still high, it won't do. (I've been there. My story is below.)


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

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


While you wait, stick to Bernsteinian numbers (6, 12, 12) and don't exceed 6 at breakfast. In my experience his finding that BG rockets in the morning is 100% correct. (I have to take a correction dose most mornings.). And just keep up the exercise.

Your doctors would not take this line if they focused on the fact that you are already low carbing and exercising. Most people dont. Point that out, emphatically.

And when, hopefully, you are given insulin, *don't* settle for basal only. Get bolus plus basal.

Courage. Complications can be reversed with the commitment you are already showing.

Lucy

 

[viv k]

Thank you everyone for your supportive replies. I know I am making assumptions about my condition by posting here (in the LADA forum), and the islet ab test result that came back negative today suggests I've got it wrong. The nurse said it looks like I should go on metformin and has made me an appointment with my doctor on Thursday to talk about it. I've read online that metformin only causes gastric upset in 1/3 of people, so chances are I can take it without it disrupting my work day. (That has been a concern for me, because I can't usually rush off to the loo in the middle of someone's dental appointment.)
Lucy, my BS is usually under 10, even without exercise, 2 hours after breakfast and its my after lunch and after dinner readings that are 13-16+ (if I'm not able to exercise) I guess everyone is different.
Has anyone ever heard of an islet test being negative, but a GAD being positive?
I do wish there was a simple test for insulin resistance, because everything I've read says its associated with high blood pressure, high cholesterol and obesity- none of which I've got.
There was a suspicion 20 years ago that I might have had PCOS, because I had trouble getting pregnant (but had none of the other symptoms).
I'm hoping that the appointment with my usual doctor (for the last 30 years) who knows me fairly well, will put things in perspective.

 

[viv k]

Saw my doctor today, my GAD came back positive, she said it looks like I am LADA and I have been referred to the endocrinology department at the local hospital. I've been put on half a metformin tablet 2x a day, the GP wants the endo to organise the insulin.
I am relieved, I'm not going nuts. I'm going to get this sorted

 

[Ian DP]

Hi Viv,
With a positive GAD, at least you now know, LADA , which, if like me, the NHS will likely call you a T1 in the honeymoon period.
I think LucySW will be able and help and advise you a lot on your transition to insulin. Her post above gives some good advice.

 

[LucySW]

Viv,

Great that you now know what is going on and can get on with making things better.

Here is my advice on what to do next, based on my own experience (you have to judge how well that fits you). I think it's better to start with insulin now rather than pussyfoot around with other drugs, because only insulin will arrest/reverse the decline and ensure that you can keep your daily insulin dose low into the long term, perhaps even permanently. That’s important, because insulin should be kept as low as possible, for two reasons: 1) you will preserve your residual basal insulin capacity and this means you will have enviably stable BG levels and will avoid the horrible lows that full T1s undergo; 2) low levels of insulin (i.e. insulin sensitivity) is associated with longer life expectancy. No other drugs can prevent diabetes progressing and keep insulin needs low, except possibly metformin, which can be taken alongside insulin for Type 1s and is an incredibly benign drug with other protective effects, if your stomach can tolerate it. I would agitate strongly to avoid any other kind of drug like sitagliptin etc: they may stimulate the pancreas, but will also burn it out quicker.

Your consultant may suggest one of these three alternatives.

1) Basal insulin only. I tried this; for me it was a waste of time, because the issue with me was post-meal spikes. I was incredibly good, ate less and less, exercised more and got more and more miserable, and my BG levels just continued to rise slowly. Once I took bolus, end of problem. My fasting levels went right down again.

2) Mixed insulin, on the grounds that you are new to all this and you need something simple. Here you are given a 70:30 mix of basal and bolus insulin, and you have to take it twice a day and match your meals to it. You may like this; I wouldn’t. It’s rigid, and you will have to eat to your insulin.

3) Full basal/bolus (or MDI, multiple daily injections). This is what I would recommend. Contrary to what you might think, it’s not difficult. Usually you have two basal injections (night and morning), or sometimes one only. Then you inject bolus 30 mins before each meal. You have to carb count for this. No problem – we are adults and this can be quickly learnt. I use the Carbs & Cals app, and you’ll need to weigh stuff for the first few weeks. Then you’ll know it.

I would also recommend getting the Abbott Freestyle Libre, a continuous blood glucose monitor system that you stick on your arm. The point here is that it tells you what is actually going on in real time, so you can adjust (food, timings, insulin doses). It costs about £130 for the reader and the first two sensors, thereafter £50 for a two-week sensor. But it will teach you more than anything, and you don’t need to run one all the time. I run one every month or so.

So there you are, for what it's worth. I would also read up all the posts on the 1.5 forum.

Good luck!

Lucy

 

[cz_dave]

Re: Help! Potential LADA, struggling to get a clear diagnosi

I am LADA, diagnosed 3 years ago at age 42. Well, misdiagnosed 3 years ago as Type 2 actually :roll: Basically, like you I am slim, no family history of diabetes etc etc, but still they wnet down the Type 2 route and refused to listen to anything else until I was very ill. Even then, they refused the tests and I had to fight for over a year to get them - the stupid nurse at my doctor's was really surprised when the GAD came back positive for LADA.

There are a few lesser-known indicators of LADA; firstly, most LADAs do not have the other metabolic conditions that are indicative of Type 2 (high blood pressure and high cholestorol). So, if you are slim, no history of diabetes in the family, white and under 45 (or Asian under 25) and you lack the other metabolic conditions, you are probably LADA. Secondly, LADA in its early stages is characterised by pretty good fasting levels (because your basal insulin is usually still working), but shocking spikes after meals (because the first phase insulin is missing). So, even very small amounts of carb make most of us LADAs spike into double figures. For example, a Rich Tea biscuit will take me from 5 ish to 10ish - and don't even get me started on a slice of toast :lol:

Smidge

Hi Smidge,

I haven't seen such a perfect description of my condition yet - much appreciated. I suppose I am LADA (although diagnosed as Type 1 in honeymoon). And yes, also misdiagnosed as Type 2 initially (November 2014). I am 41 and experience exactly what you describe. My fasting BG was relatively good at diagnosis (7) but I spiked to 12 in the OGTT test.

The funny thing is that my C-peptide was very much in the normal range when tested in March 2015. I started with insulin in May (6 units Levemir and 2 units NovoRapid before meals) and 10 days ago I started LCHF. I still need to see if I can handle the diet. In any case, thanks to the diet I was able to completely discontinue both basal and bolus insulin. P.S. Do not get me wrong - I know injecting insulin is beneficial and I only discontinued because I was just going too low with it.

 

[viv k]

Checking in to report that I was seen at the local hospital yesterday. The specialist said to stop the metformin and that I needed to go on insulin right away to get my blood glucose down to reduce the damage being done to my beta cells. She was very positive about my low carb diet, when she introduced me to the educator she called me 'a breath of fresh air'. Warm fuzzies for me, but really I made the diet and exercise changes from purely selfish point of view- it's my eyes and kidneys that I'm trying to look after.
I have been started on 6 units lantus in the morning, but they are expecting to increase that pretty quickly and then they'll add bolus insulin to deal with the spikes.The educator wants me to email all my test results to him and was really nice.
I'm not quite there yet, but it feels like I've got the right people on my side.

 

[ButtterflyLady]

Checking in to report that I was seen at the local hospital yesterday. The specialist said to stop the metformin and that I needed to go on insulin right away to get my blood glucose down to reduce the damage being done to my beta cells. She was very positive about my low carb diet, when she introduced me to the educator she called me 'a breath of fresh air'. Warm fuzzies for me, but really I made the diet and exercise changes from purely selfish point of view- it's my eyes and kidneys that I'm trying to look after.
I have been started on 6 units lantus in the morning, but they are expecting to increase that pretty quickly and then they'll add bolus insulin to deal with the spikes.The educator wants me to email all my test results to him and was really nice.
I'm not quite there yet, but it feels like I've got the right people on my side.

Wow, I am so, so, happy for you that finally you are getting the help you need. Well done on all your efforts... I would have gone around the bend if I had been in your shoes. Bravo.

 

[viv k]

I'm relieved that we have some on to it diabetes health professionals here in Aotearoa

In my online searches I found out that the Edgar Diabetes centre at Otago University is developing a quick, cheap test protocol for determining insulin sensitivity

http://www.otago.ac.nz/diabetes/research/otago057103.html

Hopefully if such testing becomes routine then new diabetics will be able to find out quickly what type they are and people can get on to the correct treatment early. At the very least, those with normal BMI and blood pressure etc, who have abnormal HbA1c should be tested and not automatically put in the type 2 box.

 

[ButtterflyLady]

I'm relieved that we have some on to it diabetes health professionals here in Aotearoa

In my online searches I found out that the Edgar Diabetes centre at Otago University is developing a quick, cheap test protocol for determining insulin sensitivity

http://www.otago.ac.nz/diabetes/research/otago057103.html

Hopefully if such testing becomes routine then new diabetics will be able to find out quickly what type they are and people can get on to the correct treatment early. At the very least, those with normal BMI and blood pressure etc, who have abnormal HbA1c should be tested and not automatically put in the type 2 box.

I couldn't agree more, Viv. I didn't realise you were a fellow Kiwi You'd think I would have recognised the Pohutukawa? flowers in your avatar, but no. Lol.

 

[LucySW]

Checking in to report that I was seen at the local hospital yesterday. The specialist said to stop the metformin and that I needed to go on insulin right away to get my blood glucose down to reduce the damage being done to my beta cells. She was very positive about my low carb diet, when she introduced me to the educator she called me 'a breath of fresh air'. Warm fuzzies for me, but really I made the diet and exercise changes from purely selfish point of view- it's my eyes and kidneys that I'm trying to look after.
I have been started on 6 units lantus in the morning, but they are expecting to increase that pretty quickly and then they'll add bolus insulin to deal with the spikes.The educator wants me to email all my test results to him and was really nice.
I'm not quite there yet, but it feels like I've got the right people on my side.

Yes, sounds good; just get on to the bolus quite soon. I actually lowered my total daily dose after a bit; it seemed my beta cells might have recovered a but. It helps if you keep them out if high BG range as apparently they're less of a target for rogue T-cells then.

 

[viv k]

Had a chat to the diabetes educator today after he had looked at my readings from the last few days, he said it looks like I need to start on bolus insulin (lunch and evening meal) so that will happen next week and he will try leaving the basal where it is for now. Now that I'm considered type 1, stuff happens!
Looking forward to living life with BG readings in single figures.
Thanks Lucy for your support, it has really helped to read about your story. I already feel more energetic, possibly psychological, just knowing this is being sorted is such a good feeling.

 

[LucySW]

I'm so glad. You've got good people on your case. That is so great to know.

Keep updating on how it goes - but I expect great things.

Lucy