• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Might be T1 not T2. Scared.

cazza54

Well-Known Member
Messages
136
Location
UK
Type of diabetes
LADA
Treatment type
Insulin
Dislikes
Turnips and Tuna fish!
I was diagnosed with T2 diabetes on the 20th May 2014. I was put onto Metformin straight away,
and later changed to the SR version due to tummy troubles. I started a Low Carb diet after reading posts on this forum, and continue to stick to around 40g a day.

My HbAiC in March 2015 was up to 11.3% and the doctor put me on Victoza injections. My next A1C in July had dropped to 7.49% which they were delighted with. However, since then each time it has increased and is currently back to 10.1%. My metformin was increased to 2000mg a day. The last A1C bloods also highlighted a problem with my liver, and I have to have them redone in a couple of months.

I had my latest meeting with Diabetic Nurse last week and she is concerned that I am needing Imodium most days to control the “runs” due to the metformin. None of my BG readings are below 8 any more. In fact last month I had readings of 17 and 28.8 (before a meal)!

The nurse has now booked an appointment with the Diabetes Doctor for tomorrow morning. She said she was wondering if I actually have T1 or LADA, not T2. She is thinking I may need to go on Insulin to sort out my readings. She has asked for an appointment at the hospital where I can have pancreas and genetic testing (whatever that is!).

Now injections don’t bother me, I cope with the Victoza with no issues doing the one injection a day. However, Insulin appears to be much more complex.
My maths skills are not brilliant and the thoughts of having to work out numbers and calculate doses doesn’t fill me with glee. Nor that this might cause issues with driving, as I live in a tiny village in the country miles from the nearest town and shops.

Is Insulin inevitable if they change my diagnosis from T2?

I am feeling scared, irritable and emotional at present.

Regards,

Carol
 
hi Cazza - hopefully they run those diagnostic tests for you again (GAD & c-peptide) to work out what is going on. You could be type 1.5 as your nurse mentioned. Also you could be type 1 or even type 2 with insufficient insulin. Type 2 progresses.

I noticed you mentioned they found a problem with your liver function. That in itself could be an issue for you as metformin works on the liver. If the liver isn't working properly, maybe the metformin isn't absorbing properly either. Also in my experience on metformin alone it didn't significantly decrease my BGLs. It could just be that you need to be on another type of drug or even insulin to get good control.

Whatever the outcome, I wish you the best.
 
Carol I was diagnosed a T2 in Dec 2014 and like you i started on metformin and then on to a LCHF diet. this started to bring my BG figures down just like yourself. But just over a month ago my they were concered that my figures were on the rise they had creeped back into the range of figures you have just quoted. 3 weeks ago the consultant at my local diabetic clinic confirmed i was T1 and started me on insulin with in a couple of days. In answer to your question if you are confirmed as T1 which i suspect you will be, yes insulin is inevitable.
I know the feelings you are going through as i was the same. But hopefully your diabetes support team will help you re-adjust and set you on the route to getting your BG levels down. You will feel the benefit from them reducing.
And most of all you will also get the support from the group here.

All the best for what ever the diagnosis is and take care.

Del
 
What a story Cazza. I remember you arriving on the forum, and your interstellar weight loss. Have you managed to stay trim with all this going on?

More to my point though; if you are currently managing to self inject, then, in your shoes, I might be less concerned about heading for insulin. I might be more concerned about the impact of the increased bloods on my body, as time moves on. If insulin brings the numbers down, it is likely you will feel better and back onto the more positive footing I remember from before.

I think, although I do hope I never have to prove it to myself, that becoming insulin dependent (ID) requires a new mindset and a new way of living, but you've already made BIG changes, so it'll seem like tweaking to you. The driving thing is part of that management, but you'll get there (pun intended).

As I recall, some people go onto mixed insulin, which provided they can eat around the same amount of carb each day, allows them to only do a couple of injections a day, rather than more. Personally, I would probably prefer the flexibility of being able to vary my diet a bit more, but we're all different in our approach, and starting on one regime doesn't mean you have to stay that way forever.

I really hope you can get to the bottom of all this and sort those numbers out. It must have been so disheartening.
 
Thank you for the replies, guys.

Mep, I wish the nurse had elaborated about the “liver problem” but she wouldn’t. She just said “sometimes these things sort themselves out, we will test again though to make sure”. I wasn’t aware that Metformin works on the liver. I wasn’t even sure if the issue was connected to Diabetes in any way.

Del, your history does sound familiar to my own. My immediate issue with the high readings is that it is leaving my head “befuddled” and making it difficult to concentrate at work. I work from home, thank goodness, as I am finding myself falling asleep over the computer. It is a “really can’t keep my eyes open” type of sleep, and when I wake up I am surprised that I had dropped off. I am also having trouble with the seeing the screen at times, it goes a bit blurry.

AndBreathe, nice to hear from you again. Yes, I managed to keep the weight off, and in fact it has been dropping again recently without me doing anything different. I have lost almost 8 stone altogether now.

Two injections a day sounds manageable. My breakfast is usually the same each day, as is lunch, dinner varies but I only have potatoes on a Sunday and the rest of the week the meals are low carb. For example last night I had a salmon steak with sautéed mushrooms and courgettes. This was at 6.30pm. I didn’t eat again until breakfast today and woke up with a fasting glucose of 13.1.

As you say, it is disheartening. It seems I only have to look at food for it to rise. The only thing that brings it down is walking. Yesterday, I dd a half hour walk with the dogs and it brought it down from 14.1 to 8.2. The same walk today though, only brought it down 2 points.

Big sigh.
 

Cazza - With all that high-sugar-befuddlement going on and the sleepiness, you might find you very quickly feel better again if you go onto insulin.

I'm trying my best to stay meds-free and all that, but I know if my body starts to let me down a bit, and running to its own agenda, then I might have to accept some medical support. Starting insulin isn't any kind of failure (except of your body producing sufficient insulin and your body using it as it should), and may be the thing that gets you back to being "right on song".

And well done on staying trim. Your ongoing weightloss, without any current effort may be another pointer to your diabetes being in a different place.

Really good luck.
 
I can only put forward my own experience, and it could be irrelevant to your situation, but last year I was running with high bgl. My HbA1c was 99, and I was seeing fingerpricks in the 28-33 mmol/L range. My lowest bgls were coming out in the 10-15 mmol My GP wanted me on insulin, but we compromised on a change to gliclazide and increased self monitoring support.
I started by adjusting the timings and dosage of my orals, and cut out the major carb foods, This reduced me down to an HbA1c of 53, with a daily average of 8. Then I found LCHF and found I had to reduce my Gliclazide dose in half. I am currently running daily average of 6.7 amd my next HbA1c is next month.

So in my case I showed that I do not need insulin (yet), but had similar readings to you, so you could still be T2. You do say you are Low Carbing already, so this does seem to weigh in on T1 or T1.5 still if your readings are not coming down.

But I found Gliclazide to work quite well for me. I throw this into the melting pot, and wish you well.
 

Hi @cazza54 - Sorry to hear you're feeling like this - but I just want to share a bit of my experience.
I was feeling the same way for a long time - couldn't keep my eyes open at work, and would often fall asleep just after lunch. I felt awful!
I was diagnosed Type 2, when it was actually Type 1 (Late Onset).
As soon as I started taking insulin (and I mean RIGHT AWAY), I felt much better! I still do. I don't enjoy injecting or testing, but if given the choice between how I feel now, and how I felt before Christmas - I'll take this any day!

Good luck and I hope you feel better.
 
Thank you SRO, that gives me hope!

I dozed off again after eating my lunchtime salad today.

Oldvatr, good to know there might be an alternative to insulin. Do you still have to alert the DVLA on Gliclazide?
 
I also agree with the others... I definitely felt better when I started insulin. I probably should've been on insulin a lot sooner than I was but my docs were insisting on trying all the oral meds first. For me it felt like a lot of time and money wasted as I didn't see the results they claimed I should've had..... no **** wonder as the drugs were stimulating my pancreas which only works if the pancreas is fully able to be producing the insulin it should be. I've been on insulin now for 6 years (prior to that it was 7 years diet control, then 5 years on various oral meds)
 

You may be prescribed Insulin, but you would still be type 2. See how the tests go, to determine a proper diagnosis, one way or the other, take care.
Best wishes RRB ps forgot to add, fingers crossed for you.
 

  • Sorry to hear you are feeling this way, @cazza54. If you have been misdiagnosed as a Type 2, a change to a Type 1 or Lada diagnosis will mean you get on track to feeling much better.
  • Insulin will allow you to get your blood sugar under better control and it's quite likely the high blood sugar that is making you feel under the weather and sleepy in the daytime.
  • Don't think that being on insulin would necessarily lead to losing your driving license!
  • You've done well on your low carb diet - that will continue to help if you start to use insulin.
  • Calculating doses can seem daunting, but you would get lots of help with that until you are used to it, plus blood sugar meters do a lot of the work for you.
Let us know how it goes at your appointment. Thinking of you.
 
Thank you Robin (and Dizzy and Dora) and lizdeluz.

I will certainly report back after tomorrow morning's appointment.

I dream of having more energy!

Regards,

Carol
 
I have been to the doctors this morning. I do have to go on insulin injections. She is making me an appointment to see the Specialist. She is also referring me to a dietician and a podiatrist.
 
cazza54 said:
I have been to the doctors this morning. I do have to go on insulin injections. She is making me an appointment to see the Specialist. She is also referring me to a dietician and a podiatrist.
Click to expand...

It sounds like your doc is helping which is great. I'm sure you'll feel much better on insulin.
 
Good Luck, and seems you are getting the support you need. This means you should get test strips on scrip now which will help in a small way.
 
Thank you. Yes, the doctor said I will have to do lots of testing. I do already, but hey....
 
Good news, Carol! It's good that you're going to get support from a range of specialists. I expect the insulin will help you to feel better quite quickly, and that then you won't feel so exhausted at the thought of it all! I know from experience exactly what that is like!
 
Don't be put off Carol. If you really are T1 (or T 1.5/LADA), then you have no alternative but insulin, but it isn't awful at all. I felt the same as you when they changed my Dx from T 2 to T1 - I would have done anything to avoid insulin - but it was all just fears.

As it turned out, because I low carb, doses were low and have stayed low, my BG levels were stable, and insulin turned out to be easy.

Honestly - insulin, if you need it, is okay. It's not hard, and the very extended LADA honeymoon means you can keep doses much lower than full T 1s.
 
I started using insulin in November, had previously been using Victoza for a few years but it stopped working. I use a pre-mixed pen, delivered just like the Victoza, one injection with breakfast and one with dinner, starting with a small dose and increasing it over many weeks to find a suitable regular dose without havung hypos (none so far!). Yes, you have to tell the DVLA, but they don't actually take your licence away, though they might choose to review your case every few years. Insulin isn't the overnight miracle I expected it to be, we're in for the long haul!
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…