Old T2 New LADA diagnosis patient here

[RG73]

Hello all, thanks for hosting this excellent forum full of very enlightening information. I have visited many times over the last few years, but this week was compelled to sign up.

Sorry for the ramble and I hope it makes sense as I am very, very tired this week. Just thought I would put a little introduction together. I ended up editing half of it, it went on a bit. So if you think this is long, think yourselves lucky! ;-)

I am a nearly 48 year old male, who has been diagnosed with LADA T1.5 this week. I have been working with my GP for about the last 6-7 years who had me diagnosed as T2, which is of course the standard approach when blood sugars start to rise in your early 40s.

I was being dosed up to the max on Metformin 3000mg per day, Januvia and Jardiance. My stomach was starting to be ripped apart by the Metformin over the last few months, wow, thank goodness I was working from home!!

My BMI was less than 20 and I was a very active cyclist until about a month ago, 150+ kms per week.

<!-- Edited out a load of waffle -->

Work has been stressful since April and have been doing less exercise as a result and also had the COVID vaccine nearly 2 weeks ago. Last week, something happened, (won't bore you) but blood sugars shot up to over 20 MMOL. Checked it with another meter and the same. It kept rising too, so my wife rang the hook off the local diabetic clinic (she had a name of someone) and we got a call that evening to come in the very next morning.

She looked at me and suspected LADA straight away but took some bloods and did a urine test. Less than 2 hours later she called back to say my Ketones were very high and I should come in and she will start me on Insulin straight away.

I went back to the clinic yesterday where they had a c-peptide result which also suggested LADA - 266 MMOL I think.

I am SUPER tired this past week, even though I am signed off work, with my wife just looking at a dazed kind of bloke who will at will, go AWOL in a corner of the house and sleep for a few hours. I say sleep, it almost like I am being knocked out I am that tired.

After a week now, of what was initially a low dose of Insulin, but has now been doubled to 16 Tresiba and 10 NovoRapid (3x per day), still not much difference in MMOL, between 15 and 25. Hoping it starts to kick in soon.

Good news is I have put on weight (3KG over the past week since starting Insulin).

 

[Inka]

Welcome @RG73 🙂 No problem with a long post - it’s good to hear people’s stories and helpful for casual browsers too.

It does take a while to get the initial insulin doses right because they start conservatively. Also, if you’ve been high, as you have, it’s better for the body to bring your blood sugar down gradually.

You’re not alone with your misdiagnosis. So many adults are assumed to be Type 2 but are actually Type 1/LADA. You’ll gradually feel a lot better as your blood sugar comes down.

 

[trophywench]

Hear hear - you ARE being literally knocked out - only difference is high BG plus ketones have an iron fist in a velvet glove. They'll get the dose right and don't be at all surprised if your eyesight goes all out of focus meanwhile - so if you can't work while it's doing that- stay 'on the sick' until it settles down. Could be anything up to c. 6 - 8 weeks.

 

[RG73]

Well @trophywench you hit upon a good point there. I forgot to say that my Ketones did drop right down to virtually nothing after the 2nd day of Insulin (I didn't measure the first day).

Also, my 'knock outs' were probably more severe in the months before my diagnosis. I wouldn't sleep for anywhere near as long as I am this week (15 mins on average before, now over an hour easily) but my head would go light and pressure on your temples that worked its way backwards (mad, mad stuff) and then a minute later you would be asleep.

Another thing I deleted from my first post that might be helpful to some, is that the biggest sign to me that I had LADA was weight loss. I was cycling a lot and people put it down to that, but I was eating more too. I also have a bad back and put it out again last October and this kept me from cycling for a few months. This really bought it home, as with very little exercise but with the same amount of calories going in (if not more probably out of boredom) my weight still stayed the same. So something to watch out for.

I gradually got more and more symptoms though over the last 5-6 weeks, i.e.:
- extreme thirst
- urinating a lot
- tiredness bouts as mentioned above
- rising blood sugars and not being brought down by exercise or medication

 

[Ljc]

Hi @RG73 , welcome to the forum . I have often wondered how many folks dx with T2 actually have LADA instead .

In time you will start to feel much much better, it’s going to take them a little time to bring your BGs down , as has already been said it’s best not to do this quickly , they also don’t know yet what insulin ratios you need, as we are all different in this respect .

One morning in the not too distant future , you will wake up and realise that you feel human again 🙂 , you’ll have more energy and won’t be sleeping for England🙂🙂🙂

In these early stages It’s vital that you keep in close contact with your DSN, as their will need to be much tweaking of your insulin units plus you have loads to learn .
In time you will become the expert in your diabetes and be adjusting your own insulin’s but this as I said does take time.

What insulin’s are you on.

 

[RG73]

Hi @Ljc thanks for the advice and to @Inka and @trophywench as well of course.

I am on 16 x Tresiba per day and 10 x NovoRapid before meals.

I already do feel a little stronger, this may account for by the slight weight gain. Still have plenty of the other symptoms which is not surprising since my BG is still at ~18 MMOL this morning. I can wait.

 

[Ljc]

It’s giod to hear that you are starting to improve .

Do you have the means to check your Ketones , imo non medical opinion atm you need to be keeping an eye on them.
When are you due to check in with your DSN

 

[RG73]

I went to the GP on Monday and he did a urine test for Ketones and said it was negative. I also have a meter and a few strips. How often should I test do you think?

I have a call with the DSN on Tuesday and a visit on Thursday.

I reckon I have had Ketones for nearly two years though on and off. During this period I have been cycling a lot, doing really long distance events and this was thought to be the reason for the weight loss, but I always thought it was too much weight to lose for such events as no one else I were doing them with was losing the same amount. I know everyone is different and eats differently, but still.

 

[SB2015]

Welcome to the forum @RG73

I hope that you are already feeling a lot better than you were.

I was also diagnosed as an adult and lost 1 1/2 st in one week. I did put some of that back on once my insulin levels were sorted. This took time so be patient and give yourself time to recover and get used to things before returning to work. It is common to start on fixed doses and then adjust these.

When you are ready it is worth starting to count carbs that you are eating, as this will become the basis of your management and learning to adjust your doses to match what you want to eat, and to enable you to continue your activity levels. There are courses about this which are worth doin, as it not only teaches you how to do your own management, but you also get the chance to meet others with T1. Ask your DSN what is available in your area.

Keep in touch and fire away with any questions that you have.

 

[trophywench]

Ketones - normally my BG meter tells me to test them when my BG is 13 and above.

 

[RG73]

Thanks, I checked keytones and all is well, BG still ~20 MMOL but feeling a bit perkier.

 

[everydayupsanddowns]

Welcome to the forum, and congratulations on delurking 🙂

Sorry to hear that your BGs are still so elevated - hopefully as your doses continue to be tweaked these will come down in time.

Have you been advised on an amount of carbohydrate to aim for to match the doses you are taking?