Another recruit to the LADA club?

[Swillbos]

Just thought I would introduce myself as another probable LADA, currently awaiting test results. Bit of background:

Between the ages of 30-50, I was overweight, gradually moving up the ranks to full-blown obesity. When I turned 50 I set myself a goal of losing 4 stone over two years. I never really understood how carbs and calories were different but through trial and error I came up with my own DIY weight loss protocol: lots of walking and c1800 cals a day of which no more than a third from carbs, which I estimated at 150g a day. This worked very well for me and I found I was comfortably losing 2-3 pounds every month. When I was diagnosed with type 2 nine months into my regime, I had already lost 1.5 stone (c.10kg) and a tenth of my body weight. The Dr explained the parameters for diagnosis had recently changed, but that at HbA1c of 49, I was officially diabetic. Must admit my initial reaction was disbelief and extreme annoyance that things had changed, but it did spur me on to carry on with my diet and exercise routines.....now I know a lot more I suspect I had probably been diabetic for some time. Three months later my HbA1c had come down to 46 and I was congratulated on "reversing" my diabetes(!)

I lost three stone in a little over a year, and basked in the praise of the local practice nurse......I kept the weight off for a year, and then stressful work and family illness threw me off course, and weight started creeping back on. Nonetheless it was still an unpleasant shock to me when my GP suggested the time had come to start Metformin. It was then that I found this forum and started reading up, and realised that of course I hadn't reversed anything. I responded very well to Metformin (2 x standard 500mg - never had any problems with digestion after the first week or so) and discovered the joys of intermittent fasting, low carb baking and so much else! Over the course of seven years I have lost over five stone (34kg) and a third of my body weight but very, very slowly.

Things started to unravel a bit last summer and Metformin was increased to 1500mg. Then I had a step change in April, no matter what I tried I suddenly couldn't get my blood glucose lower than 15. Started on full whack Metformin (2000mg slow release) and 2mg Glimepiride, fully expecting great results....absolutely zero response, moved up to 4mg Glimeperide and still no improvement. Started panicking, GP told me to hang on in there and give it a chance, but ended up getting referred to the local hospital service and started insulin ten days ago.

I can't tell you how much better I feel now, I don't think I realised how poorly I was until I started insulin. I had high ketones and probably did very well to avoid DKA. The new approach does take some getting your head round, though, any advice welcome!

 

[Marie 2]

I was misdiagnosed for 9 years. Luckily medications made me sick so I was put on insulin fairly early. I never low carbed I have been a vegan for over 35 years. But I thrived as soon as insulin was added, especially when I started fast acting insulin.

You will probably still be in the honeymoon phase for a while, it takes years to develop full blown type 1/LADA. That means you still make insulin until you don't. So some days you might make some insulin still and other days not so much. At first it can be a little tricky, but it becomes second nature!

 

[Swillbos]

Many thanks Marie, as someone who has spent the last year beating myself up for failing the type 2 game, it is a huge relief to have the wisdom and experience of people who seem fated to have a different trajectory!

I am only on 9 units of Humulin, up from 8 units starting dose which sounds low (?) but am fairly low carb, and also still on Glimeperide. I can't see the Glimeperide is making one single jot of difference, apart, annoyingly, after all my hard work from putting on weight. My bloods routinely go up 4pts each morning after I have taken it with my modest low carb breakfast, not on the extensive list of possible side effects......but wow, overall what a difference, FBS down from 18.2 ten days ago to 6.2 this morning!!!

The honeymoon period is confusing, not sure if it would have started 7+ years ago when I was first diagnosed, or much more recently? But it would explain a few slightly odd swings. I am also finding it hard to envisage having a hypo as that is so far from my own experience to date, but have invested in a bag of jelly babies (unopened!) just in case. DN firmly advised me not to go to bed with anything less than an 8, so have also enjoyed a couple of late night digestive biscuits - interesting times!

 

[Marie 2]

Honeymoon phase can last up to 8 years easily in some people, and I have run across a few people it has been longer than that. It starts from the first day LADA starts in your body even before diagnosis. It just means at first you have the antibodies that start attacking your beta cells and killing them off. This takes a long time to completely happen in a LADA. But slowly you lose your ability to make insulin. Eventually you don't make any, or very very little.

Your insulin needs go up as time goes on. If you started 7 plus years ago, you probably aren't making that much insulin any more, your breaking point being last summer when your levels shot up. But who knows when you completely will stop and how much insulin you will need? It really varies person to person, your needs of insulin stabilize and that is how you tell you are done with the honeymoon phase.

Always, always keep a sugar of some kind with you where ever you go. It is necessary when you take insulin. OJ is very quick and that is what I always have on hand at home. Hypos just happen, you will sooner or later have one. It's just really a way of life unless you want to high numbers all the time. Figuring out exercise, showers, stress, they all can cause BG fluctuations.

Depending if you are making insulin, a type 1 needs insulin for every carb consumed, even broccoli really. Just certain things are low so they are just calculated with the whole of the meal. But the good news is, your diet can open up to more foods as a type 1, it's usually not an insulin resistance thing, it's a you don't make any in the first place thing. So you dose for what you eat.

They should be doing an antibody test which will confirm a type 1 diagnosis, although there are some type 1's that don't have antibodies but don't make insulin. A C peptide test tells you if and how much insulin you are making. There are some type 2's that need insulin too, the c peptide test is then high versus low.

 

[Swillbos]

Thank you so much for your brilliant reply Marie, that is a really helpful explanation.

I think it will be a while before I get the results of my tests as they got sent off to Sheffield, where apparently the more "exotic" lab work happens and takes three weeks to get the results. The phlebotomist had to check what the tests actually were as she said she hadn't seen them in 15years, which I found surprising. Definitely one was called GAD which I assume is the antibody test, there was also HBa1C and a third one, which sounds likes it ought to be the C peptide test.

At the time of my diagnosis Type 2 made sense as I was an overweight (OK fat!) middle-aged woman. My dad had diabetes, but not developed until his 70's and said to have been treated by diet; this I doubt as he had lot of neuropathy. Unfortunately Dad had died and my Mum had dementia at the time of my diagnosis so I have very limited information on the diabetes gene, although a brother in New Zealand tells me he is being monitored for "high normal" blood sugar, and now no longer eats jam sandwiches for breakfast

On the other hand the thyroid disease gene is very strong in our family. I was hyper-thyroid in my teens and had a thyroidectomy age 18, then became under-active in my early 40's and have been on levothyroxine since. So, there is a fairly strong auto-immune gene in there somewhere, which I understand may have an association with LADA.

Good points on the food front as well. Must admit I tend to think of broccoli and avocados etc as being pretty much "free" foods, so probably have been underestimating the carb count. But I think I'll leave that one to ponder another day. Meantime, jelly babies have moved out of the kitchen cupboard into my handbag!

 

[Brunneria]

Welcome!

 

[ert]

Welcome. You've certainly had a tough journey with successes along the way. I do hope you get to the bottom of your latest change. Let us know how you get on.

 

[Swillbos]

Many thanks ert. I'm definitely a coconut half-full kind of a gal! Hoping for more success for all of us in the future