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New diagnosis type2 but meds just dont work.

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Hellybell80

Hellybell80

Active Member
Relationship to Diabetes
Type 2
OK i apologise for a long post. But I could do with a little help.
So about 4 weeks ago I tested my urine, as I used to get alot of kidney infections. I test weekly at home so I don't bug the Dr each time. They have glucose on them as well. I was glucose intolerant many years ago. But it really was a low amount.

I've never had any glucose in my urine at all in all the time I had tested. Until I started to feel unwell about 4 weeks ago. Weeing loads started to loose weight. Felt awful.
It was a high amount in my urine. Had tested a week before nothing.
So because I have family members who are type 2 diabetic. (None over weight) I tested on a blood glucose monitor. It was 17. A little shocked to say the least.
Did a fasting blood sugar and it was 14. 12 hrs after eating.
Since I first measure its never been below 13 and thats on a fasting. Going up to 29.

I was diagnosed within the first week with a hba1c of 77. My average sugar is 18.1 over the last 4 weeks.
They put me on gliclazide 80mg a day it did nothing. Then 160mg then 320mg. Didnt move my sugar levels. Nurse was surprised.
So yesterday they put me on lantus just 10 units to start off. First day not much improvement but I'm aware it will take time.
I've lost 8lb in a week. I'm overweight by about 10lbs. So not a massive deal.
Anybody else type 2 thats had it develop so fast. And the meds not work. And yes I lowered my carbs.
 
Has your GP considered Type 1? A lot of people, including doctors, think you can only develop this as a child, but in fact more adults are diagnosed with it than children. I would ask the question, ask for tests to confirm (gAD antibody and c-peptide are the names of the common ones) and if your GP looks blank, ask for a referral to a hospital consultant.
Oh, and welcome to the forum, and don’t apologise for the long post, it always helps if there’s a full story for us to go on.
 
A
Robin said:
Has your GP considered Type 1? A lot of people, including doctors, think you can only develop this as a child, but in fact more adults are diagnosed with it than children. I would ask the question, ask for tests to confirm (gAD antibody and c-peptide are the names of the common ones) and if your GP looks blank, ask for a referral to a hospital consultant.
Oh, and welcome to the forum, and don’t apologise for the long post, it always helps if there’s a full story for us to go on.
Click to expand...
I was thinking this too, but you posted before I could.
 
Thank you so much for a reply.
I mentioned the GAD and c-peptide test, but the nurse said I have to be in hospital to do it. And the hospital consultant refuses in most cases.
All my life I've had experience with type 2. Mother grandad, 12 great uncles! Brother also. All had it. I've never seen it respond in this way over such a short time.
 
I agree with @Robin that Type 1 needs ruling out. Contrary to popular belief (including some healthcare professionals) you can get Type 1 at any age and it’s just as common in adults as in children.

The fact you have family members with Type 2 doesn’t rule out the fact you could be Type 1.
 
I agree T1 needs ruling out.

T2 ordinarily does not come on quickly. I know in the past you were dx as glucose intolerant, now called pre diabetes , but their is T1.5 LADA (latent auto immune diabetes in adults) it’s like a slow onset T1 , in the beginning it often responds to meds for T2 which can eventually stop working.
Instead of speaking to your nurse about testing for T1 , have a chat with your dr .
 
I haven't even seen a GP so far. My result came by text message and was told to contact a nurse. I've been dealing with her by phone. She's actually all right. Yesterday was the first time I actually had a face to face due to teaching me about injecting insulin. (It was a Different nurse) She took my weight, didn't want to see my logged blood sugars. Told her my average was 18. Gave me a booklet and that was that.
 
They’re assuming you’re Type 2. Too many adult-onset Type 1s are misdiagnosed as Type 2. I’d be pushing for an explanation of why they’re assuming you’re Type 2.

While GP diabetes nurses might be lovely, I found mine lacking in knowledge compared to a proper DSN, particularly about Type 1.
 
The thing with Gp diabetes nurses is, most have only had a little more training in T2 diabetes, they are not the real experts, and to be honest an awful lot of GPs aren’t either .

Nor do we have all the answers either. It’s just that sometimes we notice something that , how can I put it, that rings a few bells and mine is ringing with you. But I may well be wrong.

Whatever type of diabetes we have, once we are on the right medication if needed and have the right info , diabetes is mostly managed by ourselves . With occasional health checks and reviews but we also need to have contact details for when we need help between theses times.
 
Another vote here to push harder for Type 1 testing or a referral to a consultant/specialist clinic.
Have they given you a means of testing for ketones? If not ask for this as you should be testing when your levels are consistently mid teens and above. Even if it is just Ketostix to test your urine. If you can't get them from the nurse, they can be bought over the counter at a pharmacy for about £5. If you start to have abdominal pain or respiratory problems or your breath starts to smell funny or you get significant ketone readings, get yourself to A&E pronto.
 
I think a cPeptide result would be very helpful - possibly even moreso than GAD antibodies (though both would be best of all).

Checks to confirm T1 in adults are shrouded in a cloud of slight uncertainty, so they aren’t routinely used. But weight loss, very high Bgs in the absence of carbs, and the complete ineffectiveness of meds that are supposed to get you to release more insulin are pretty solid indicators that your insulin production may be impaired in my (completely unqualified and un-medically-trained) opinion.

Hope you can get a referral to the hospital and get some definitive answers. If you are LADA or T1 you’ll be needing mealtime rapid insulin alongside the Lantus pretty sharpish I would think.
 
I had a phone call yesterday again with the nurse. She has upped my lantus to 14 units. Which I have took this morning. It was really high yesterday. Well to me 27 is high. She said my sugar levels will get high untill they get the lantus right and I have to make small adjustments at a time. I've another call on Monday morning. She said I won't need insulin to adjust my mealtime sugars.. that the lantus on its own will fix it.
My fasting will not go below 13. 12 hours between eating. Even though my sugar levels came down to around 16 before bed. (I had 16g of carbs for my dinner) it was 14 when I woke up at 6am. I'm feeling so ill through the day where I'm feeling so bad. I'm struggling to do much while my sugars are so high through the day.

Did mention the tests again she said it wasn't necessary. I can't get a GP appointment for 4 weeks.
 
27 is very, very high! You’re quite right to be anxious about this. Lantus is a slow-acting background insulin which is made to keep your blood sugar down in the absence of food! It’s not made to deal with meals. Even if the nurse is right and you are Type 2, the Type 2s on insulin I know from my local surgery are on both slow and fast (meal-time) insulin or insulin that’s a mix of the two types.

I wouldn’t be happy with this personally. Could you ask to speak to the Practice Manager? Not to complain but to state your concerns and ask if you can speak to a GP sooner.
 
I'd go to A&E, I wouldn't put up with it, diabolical. :(
 
Hellybell80 said:
I had a phone call yesterday again with the nurse. She has upped my lantus to 14 units. Which I have took this morning. It was really high yesterday. Well to me 27 is high. She said my sugar levels will get high untill they get the lantus right and I have to make small adjustments at a time. I've another call on Monday morning. She said I won't need insulin to adjust my mealtime sugars.. that the lantus on its own will fix it.
My fasting will not go below 13. 12 hours between eating. Even though my sugar levels came down to around 16 before bed. (I had 16g of carbs for my dinner) it was 14 when I woke up at 6am. I'm feeling so ill through the day where I'm feeling so bad. I'm struggling to do much while my sugars are so high through the day.

Did mention the tests again she said it wasn't necessary. I can't get a GP appointment for 4 weeks.
Click to expand...

Your nurse is quire correct IF you are T2, and if your pancreas is still producing lots of insulin... but several things you have said seem to question that. I wonder why the Gliclazide was so ineffective, even at very high doses?

Perhaps would be wise to contact NHS111? Or visit A&E? You might also consider nipping to a chemist and getting some Ketone urine strips (£5 for a pot of 50) which will show if your body is producing ketones, which could be worrying if you are producing insufficient insulin.
 
I was in A&E at the start. I was being quite sick with upper abdominal pain. Still am. They suspected gall bladder stones. As it was tied to eating. This was one day after testing my sugar levels and realising they were high, I was in. They measured my sugars off of an IV as they tested for a few things. My levels was 19. I asked the Dr about it and he said that it wasn't high enough to treat at the hospital. And if the sugar levels bothered me to see my GP if I was that concerned about it.
My gall bladder scans came back normal. But tests did reveal I had issues as my white cell count wasn't normal. It suggested an issue with either pancreas or gall bladder. But no other investigation is needed.

I do have keytone sticks only had low amounts a couple of times.
 
Hellybell80 said:
I was in A&E at the start. I was being quite sick with upper abdominal pain. Still am. They suspected gall bladder stones...

I do have keytone sticks only had low amounts a couple of times.
Click to expand...

Glad you have been able to check for ketones, and that you are only seeing trace ketones - otherwise those abdominal pains might have been an indication of DKA, which can be very serious!
 
When I spoke to my gp about controlling my diabetes without meds, he told me that if my levels got to 20 or above, to go straight to A&E. 27 is scary high. I hope you get sorted soon.
 
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