LADA Learner . Any words of wisdom appreciated.

[Billy_Pilgrim]

Hi there, I’m a 38 year old man, recently diagnosed with 1.5, although yet to be confirmed by c-peptide tests. I believe I was misdiagnosed back in the UK with type 2, but something didn’t feel right with the scenario I was presenting – I’m very fit and healthy, regular gym goer, of optimal weight and a smug nutritional know-it-all to boot. I can actually put a date to the onset of symptoms, which was just 3 weeks ago, where I developed a terrible thirst and couldn’t hold my bladder for more than an hour at a time. I also lost around 3-5 kilos, which I've since struggled to put back on.

So with an inkling something was wrong in the diagnosis I flew out to Hungary (I’m half-Hungarian and always rated the doctors out here), and they deemed my BG numbers (which were all over the place, from 11 mmol/L to the high 19s) erratic enough to warrant a saline/insulin drip to get the levels down. The speed at which my levels dropped from 16 mmol/L to 9 on the day made the doctor confident that this whole auto-immune attack was only around a month old – maybe this was a hunch based on her past experience, but I happily took it.

The doctor here scoffed at the previous UK diagnosis – my British GP had claimed that the absence of ketones in my urine ‘proved’ that I couldn’t have Type 1, but the Hungarians insist that this does not necessarily follow. In London I was put on 500g Metformin, but over here it’s been switched to 1x1000mg slow-release Merckformin, and a 10 unit dose of Lantus each night.

So I’ve been on insulin for a couple of days now, and it’s been scary how quickly all this paraphernalia has become normal. I woke up this morning with a fasting reading of 7.4, which is my lowest yet, and was ecstatic. I was advised I might be able to phase out the insulin, given the progress I was making. But then I hit a bump in the road earlier today when I had sweet potato for lunch, in amongst some other roast vegetables. My BG shot up to 16.9 (from maybe 9.4) within 45 minutes, and I felt pretty rotten too. Who in the holy hell told us we can eat sweet potato? It’s the devil! The worst part was I was quite happy to go low carb, but my doctor had insisted I maintain 150 carbs a day for brain function. Not sure I can manage it without major spikes all day long. Stupid brain.

Not sure what it means in terms of potentially weening myself off the insulin now – is it likely? Or does it mean nothing? Will I ever get to drink a beer again? Or faceplant into a pizza?

 

[GrantGam]

@Kristin251 also has LADA and has been a follower of LCHF for a long time. If perusing a low carb diet is something that you'd like to do, then I guess she's an example of someone who's brain is still working on a lot less than 150g carbs per day

 

[Diakat]

But if you do want carbs, and are sticking to insulin then you'lyou'll need to add in a bolus dose for food. that will be a different insulin to your Lantus.
Good luck with it all.

 

[azure]

I agree with @Diakat A bolus insulin would help with sweet potato and the like. Carbs help with gaining back weight, if you wish/need to do so.

I'd also add that GAD tests can help determine what diabetes type you have.

 

[Zagi]

Hi Billy,


I've passed same path as you bit earlier.
Loss of weight, frequent urinations, tired...


My GP prescribed me 3*500g Metformin. It didn't reduce my readings. They were still 14-15 in the mornings.
I was rushed to clinic for diabetes (I'm in Zagreb, Croatia) and they made C-peptides test (low) and put me on insulin that helped immediately. (after couple of days it stabilized on 4 units of Abasaglar in the evening). My vacation just started, so stress was down and sports up. Very low carb diet helped too. But I was losing almost 1kg/week.

Like you, I was hoping that I would somehow skip insulin...
GAD tests confirmed auto immune attack, I returned to my fairly stressful work and I couldn't stand low carb diet.

I'm now on 3*4 units NovoRapid + 8 units Abasaglar.
I eat 'regular' diabetic diet, 2200 Kcal, with 6 units of carbs (equivalent of 180 grams of dark bread).

Once you get it used to it, insulin is about as much nuisance as shaving in the morning.
You can do sports, eat healthy food and from what I read, you could have a drink from time to time.

 

[Billy_Pilgrim]

Thanks dude, and all of you guys, that's really helpful. To be honest I've more or less got used to the injections, and would certainly consider the above advice for bolusing if it meant I could eat like a regular schmo once in a while. Otherwise I'm as committed to healthy eating as I've always been. When there was an occasional cheat day with the odd pizza or burger, it was usually preceded by drinking, so in retrospect one thing was probably the cause of the other.

Even on 4 meals a day, I'm currently eating way less than my 2200kcal, and will need to step it up to get my weight back. Any more than 25g carbs in one sitting is poison to me, so I will have to bulk up portion sizes with other things.

I woke up this morning with a reading of 5.5 mmol/L, which isn't too shabby, as presumably the Metformin hasn't kicked in yet. Will take your advice and take the GAD test to get some confirmation on what it is I have.

 

[Daibell]

Hi. As you have found the NHS can be very backward with regard to diabetes diagnosis and in many ways we are like a third-world country. The lack of ketones has little to do with a late onset T1 diagnosis - stupid. NICE updated their T1 Guidelines last year (finally) to say that those presenting at diagnosis as slim should be suspected as possible T1s and not just assume T2 as my GP did and so do many others. I'm glad you are now on insulin as I have been for 3 years now and it's almost a miracle treatment when you have struggled with the wrong diagnosis. I got a c-peptide done privately which helped confirm my thoughts but although GAD can be helpful a negative result doesn't prove you aren't T1 as there are more causes than the GAD antibody. This is another area where the NHS just assumes negative GAD means T2 and at least NICE realises that.

 

[Zagi]

Billy,

You can have six servings per day, instead of four. Since I started taking insulin before main meals, I can have 'regular' lunch. (Baked potatos or beans...). I understand felling 'Better anything then accepting that I'm so seriously ill that I need insulin'. It will last some time, but I assume you'll gradually overcome it.

 

[Kristin251]

I eat 150 carbs in a week! Not a day. I have been vlc way before dx and I ageee, sweet potatoes send me sky high.
Some people do very well keeping BS stable with carbs but I do not. Healthy fats with moderate protein and vlc is my ticket. I do need to bolus for protein but I take 1/2 unit per meal and 1-2 lantus at night. I'm most likely smaller than you so need less but I do love and follow bernsteins laws of small numbers. I couldn't stand the rollercoaster I had with carbs. With my smaller doses I don't fear rollercoaster or hypos. I eat pretty much the same TYPE meals everyday. I do still weigh protein as that's raises me. I add avocado to every meal as that slows and lowes things. Then I add a small mount of low go veggies and a little olive oil. I rarely have any surprises.

Point is , nothing wrong with low carbing!! Works for me and many others.

 

[Billy_Pilgrim]

Kristen, not sure if you go to the gym or not, but I would struggle with cardio work on carbs as low as that. I think I would struggle walking up stairs.

The avocado thing seems to work btw, thanks for that.

Zagi, sometimes I struggle to discipline myself to eat 6 times a day, just because of the nature of my work. So I find myself low-carb grazing, and then on the odd occasion when I need to fill myself up I make a protein shake. It's not ideal, but seems to be working for me so far.

 

[cz_dave]

@Billy_Pilgrim - I am also type 1.5 and I've gone through pretty much the same path like you and others on this site. I was put on Metformin by my GP. Luckily, my diabetes consultant had me do the right tests (GAD among others) and since I tested positive, he immediately diagnosed me as late onset type 1.

He immediately put me on 6 units Lantus and 2 units NovoRapid before main meals. That was two years ago (I am 42 now).

In the meantime I started carb counting and inject typically 2-3 units NovoRapid with a ratio of 1 unit/10g NovoRapid.

I have experimented with VLC but found it too extreme and unnecessary for me personally. I can achieve very good control with 100g of carbs per day too, providing I get NovoRapid dosage and injection timing right.

I am not a doctor but based on what I was advised by my diabetes consultant, you should ask to be put on fast-acting insulin to counter the post-meal spikes. This will help preserve the remaining function of your pancreas.

 

[Billy_Pilgrim]

Thanks! I will definitely mention it when I actually get to see someone. I'm now back in the UK, and my GP tells me the waiting time to see the diabetic nurse is 3 weeks, which is frankly ridiculous, given that my fasting levels are dropping and I need advice on meds. Ideally I'd want a referral to St Barts nearby (which has a dedicated LADA department), but they told me only after I get an appointment with the diabetic nurse.

Had my first hypo last night - I'd self-diagnosed a shortage of magnesium (I'd had tightness in my chest, shortness of breath, and unexplained dehydration), so popped a couple of effervescent tablets I had way at the back of the cupboard, and felt instant relief. In retrospect I think they might have supercharged my nightime lantus injection, as I woke up at 3am sheet-white and shaking like Ozzy Osbourne. So I squeezed some honey into my mouth and had a couple of charcoal biscuits, and woke up this morning feeling fine with a reading of 4.5mmol/L, which is the lowest I've ever been. A few too many variables going on to draw any conclusions just now, but I did just read that magnesium lowers the body's insulin resistance, so I might have to be a bit more judicious with my supplements in furture.

 

[Ian DP]

Hi Billy,
I am also LADA / T1.5, or as my Diabetic consultant says, T1 in the honeymoon period.
Diagnosed T2 just over 3 years ago, then, like you, requested a gad test 3 months later, which proved positive and thus T1.
I was told to stop all medication, including metformin. I didn't go on insulin, instead eat to my meter, which resulted in me going low carb (around 15g per meal max), and following Dr Bernsteins diabetic solution, which basically means trying to keep fasting levels down to 4.8 and two hours after eating at 5.8.

If you low carb at around 15g per meal you might be able to not take insulin for a time. I did it for nearly 3 years, but now on around 5 units morning and evening of novo rapid. Exercise also makes a difference, I found an hour cycle or two hour walk lowered my BG levels by 10 to 20%. If I do that now I normally don't need insulin for 12 hours or so. I do go to the gym, but this doesn't seem to affect my BG levels at all.

Low carb gives me a lot of energy (I eat lots of fat), I can easily go from 7am breakfast to 7pm dinner with no food in between, and still go to the gym or walk 2 hours. I do have eggs and bacon every morning, plus a bullet proof coffee (60g butter and coconut oil in coffee).

 

[Billy_Pilgrim]

Thanks Ian, I've just noticed your reply. I've yet to meet a medical professional who knows what they're talking about re: LADA or nutrition, and am still working on getting a referral to a specialist (yours sounds fantastic btw - NHS?).

While I think I have the discipline for LCHF-ing and the science of it seems sound enough, I'm happy to keep injecting my basal if it allows me to eat the way I'm eating now. I'm keeping my BG within range and managing to eat 3 meals a day (up to 30/40g of non-starchy carbs with 0-10g carb snacks in between) - I've given the 6 meal thing a try, and it's just not practicable in my line of work. And occasionally if I'm about to do anything intensely physical, or running/cycling around, I can up the carbs slightly - so far with impunity, but it's very early days.

I will admit I'm green with envy you can manage 12hrs without food - I would have keeled over pre-diabetes, so I regard that as something of a superpower.

 

[Streety]

Hi Billy,

I had a silly nutritionist argue with me about rice. I told her I'd cut it out. She said "you can still have brown rice" I said yes, but it still spikes me, just not as bad so I have well cooked cauliflower instead. "but you can still have brown rice".... she kept saying.

Why bother if it was not good for me and I had an alternative that was high in fibre and other nutrients?

My point in telling you this is, as others have said, eat to your meter. Get to know your reactions. Sweet potato doesn't make me spike but rice and pasta does. Everyone is just that little bit different. I've also found I prefer a big, cooked breakfast, no lunch and a decent evening meal. Protein is my friend and yours too. Without carbs, your body will break down protein to fulfill this need although a bit extreme, and 'some' carbs are needed for brain function according to experts, it's nice to know you wont harm yourself on low carbs.
well done in managing your low.