Blood sugar staying high

[RN25]

Hi, I'm newly diagnosed type 2 diabetic but I am trying to get checked for LADA. This has all come on within a year - Hba1c was 42 last March, then 50 in June. 45 in July after low carb fasting, 43 in November. Then in Feb I got tested again after losing weight, feeling funny after eating, thirsty etc. It was 80!

I have now been on metformin for a week and a half. It was doing nothing so added Gliclazide for last 5 days. Bloods still high - 12- 18 mmol. They only come down below 10 after a 1-2 hrs walk. As soon as I eat they go up again. They were up to 18 at bedtime last night, 12 this morning. I had boiled eggs and asparagus for breakfast and they rose to 15. I feel woozy all the time, eye sight has rapidly deteriorated, irritable, thirsty...

I have an appointment for a ct scan of my pancreas in 2 weeks and have been referred to the diabetes team but I don't know how long that will take. They took bloods to check for antibodies and c-peptide last week but these were rejected by the lab. I don't know why.

I'm worried about ketones so have dropped a urine sample at the GPs this morning and spoke to receptionist. She just looked at me like I was daft for asking about the rejected blood tests and stating my blood sugars are too high. She made a appointment with the Dr but this Dr is new and not very easy to talk to so I'm not hopeful he'll do much today. A more helpful Dr is already due to ring me in 4 days for a follow up. Is it normal to just live with this level of blood sugar for weeks with little urgency? I know if I have ketones in my urine I'll be sent to the hospital, but until then do I just continue as I am until the referral comes through?

Luckily I'm not working at the moment but am due to start a new job soon, and I don't think I would be able to do it.

Does this sound like LADA rather than type 2? Oh and I am normal weight and no diabetes in my family. I was about a stone overweight last year but have since lost 2 stone. I had an ultrasound for something unrelated last year and they could see no fat on my liver. I'm also worried about type 3c but have no pain and young for Pancreatic cancer (45). Cancer is my big fear at the moment.

Is it common for those drugs to make no difference at lower doses? Wondering if they will increase them or if next step is insulin? Would those drugs work for LADA?

Thanks, and sorry for the brain dump. It's all a bit much to deal with.

 

[Grant_Vicat]

Hi @RN25 Welcome to the Forum. I'm sorry that you have not yet received a response to your post and I must point out that as an ex Type1 I am not ideally positioned to answer.There is a lot to deal with here, and I would say ketones is highest on the list. Personally I would at least phone 111 and mention high readings, ketones and blurred vision, which are almost certainly interconnected. If you are still having to wait, I would get yourself to A & E, who always take these symptoms seriously. I hope you are sorted out quickly and in time for the new job. Let us know how things go. Good luck!

 

[Antje77]

have been referred to the diabetes team but I don't know how long that will take. They took bloods to check for antibodies and c-peptide last week but these were rejected by the lab. I don't know why.

Hi RN25, welcome to the forum.

With how quickly your numbers increased, I'd definitely push for a retest of the rejected labwork.

Is it common for those drugs to make no difference at lower doses? Wondering if they will increase them or if next step is insulin? Would those drugs work for LADA?

If it turns out to be T1 (LADA), those drugs may do a little for a while while you stil produce some of your own insulin. However, an insulin deficiency is treated with insulin.

I know if I have ketones in my urine I'll be sent to the hospital, but until then do I just continue as I am until the referral comes through?

The breakfast you mentioned is close to no carbs. If your other meals are similar, you are on a ketogenetic diet anyway and you'll likely produce ketones regardless. You can always buy a tub of Ketostix yourself if you feel it may help.

With your numbers being in the teens, I'd keep pestering the GP unless you develop symptoms of DKA, diabetic ketoacidosis. If in doubt, call 111, if you develop typical DKA symptoms, take action.
DKA usually happens with higher numbers, you're still dropping to the lower teens, but it's not something to take risks with.

 

[Melgar]

Hi and welcome to the forum RN25. Your story is similar to a number of members here. The difficulty lies with the similar trajectory between T2 and LADA. So it can be hard to distinguish between them in the early stages.
My brother was diagnosed T2 and was able to keep his blood sugars at Prediabetic levels with Metformin and being relatively active for a number of years. Then he started losing weight. He felt quite sick. He is a cancer survivor and thought the cancer had come back. He went to the Dr who sent him for a C-Peptide test and then an antibody test and was confirmed LADA. His HbA1c went from 6.2% ish to something like 48%. So a dramatic rise. My understanding of LADA is that the speed at which the pancreas loses beta cell mass due to autoimmune attack varies significantly between individuals.
Non diabetics can produce autoantibodies as well and never develop diabetes. Antibodies can be transient too, especially after COVID.
Blood sugars can be held in check for a while with LADA, but eventually it cannot be sustained and blood sugars will go up as insulin goes down.
Without those C-Peptide and antibody tests it is difficult to say whether it sounds like an autoimmune issue. The fast rise in blood sugars is a red flag, in my opinion. Did your blood samples get contaminated? Here in Canada they will not do autoantibody tests without a very low C-Peptide test plus a diagnosis of diabetes. If I was going through what you are going through I would be pushing for a C-Peptide test. If they refuse, maybe check out a lab for a private C-Peptide test. Low C-Peptide results with high blood sugars is a red flag for LADA. It seems the UK is hit and miss on diabetes and depends on the health region. My view about paying for private lab tests , and I know one shouldn’t have to pay, but if it is stressing you out it may be worth the outlay for peace of mind. A few members here have gone down that root. Just the C-Peptide test will give you an idea, along with a HbA1c test.

If T2 you are very likely over producing insulin, so you would see a high / normal to high C-Peptides. A LADA risk, you would see normal to very low C-Peptides.

I test my urine for ketones, but as @Antje77 says, if you are on a keto diet you will see ketones in your pee due to nutritional ketosis not because of diabetic ketosis and high blood acidity, which is down to lack of insulin.

 

[RN25]

Thanks for all the replies, it's really helpful. I went back to the Dr yesterday. They've increased my Gliclazide and said to go to Dr or urgent care for ketone test if my sugars go over 15. So staying low carb and doing long walks to stay under.Briefly went to 16 yesterday evening but a walk brought it down within 15-30 mins and I stayed around 12 all night. Dr said he thinks the blood tests were rejected because they prefer them to come from the diabetes specialist team who I am waiting to see. I'm hoping that will be soon otherwise I'll look at a private c-peptide test. If i end up at urgent care for ketones maybe they would test too?

 

[MarthaD]

Hi. Recently diagnosed with LADA. I too had numbers that kept increasing and was put on metformin and dapagliflozin. The dapagliflozin made me really dizzy, and so then switched to gliclazide, but I kept getting higher numbers. I honestly think the gliclazide sped up my decline. I was only on them a month. I had a cpeptide test and a decision was made to put me on insulin. Started just yesterday. I've never tested positive for antibodies, although it is three years since (type 2) diagnosis and GAD tests. Endocrinologist has decided I've LADA because of cpeptide (don't know if this is normal practice). In any case, you should know relatively quickly if the gliclazide is working. I may as well have been on smarties.

 

[RN25]

Good luck with the insulin

 

[NoMoreBeerAnymore]

Hi, I'm newly diagnosed type 2 diabetic but I am trying to get checked for LADA. This has all come on within a year - Hba1c was 42 last March, then 50 in June. 45 in July after low carb fasting, 43 in November. Then in Feb I got tested again after losing weight, feeling funny after eating, thirsty etc. It was 80!

I have now been on metformin for a week and a half. It was doing nothing so added Gliclazide for last 5 days. Bloods still high - 12- 18 mmol. They only come down below 10 after a 1-2 hrs walk. As soon as I eat they go up again. They were up to 18 at bedtime last night, 12 this morning. I had boiled eggs and asparagus for breakfast and they rose to 15. I feel woozy all the time, eye sight has rapidly deteriorated, irritable, thirsty...

I have an appointment for a ct scan of my pancreas in 2 weeks and have been referred to the diabetes team but I don't know how long that will take. They took bloods to check for antibodies and c-peptide last week but these were rejected by the lab. I don't know why.

I'm worried about ketones so have dropped a urine sample at the GPs this morning and spoke to receptionist. She just looked at me like I was daft for asking about the rejected blood tests and stating my blood sugars are too high. She made a appointment with the Dr but this Dr is new and not very easy to talk to so I'm not hopeful he'll do much today. A more helpful Dr is already due to ring me in 4 days for a follow up. Is it normal to just live with this level of blood sugar for weeks with little urgency? I know if I have ketones in my urine I'll be sent to the hospital, but until then do I just continue as I am until the referral comes through?

Luckily I'm not working at the moment but am due to start a new job soon, and I don't think I would be able to do it.

Does this sound like LADA rather than type 2? Oh and I am normal weight and no diabetes in my family. I was about a stone overweight last year but have since lost 2 stone. I had an ultrasound for something unrelated last year and they could see no fat on my liver. I'm also worried about type 3c but have no pain and young for Pancreatic cancer (45). Cancer is my big fear at the moment.

Is it common for those drugs to make no difference at lower doses? Wondering if they will increase them or if next step is insulin? Would those drugs work for LADA?

Thanks, and sorry for the brain dump. It's all a bit much to deal with.

Hi, My HBA1c was 120 and now I am back to 56 with Metformin and a bit of careful food choices. What you need to remember is that the way forward is for you to become expert in your diabetes, and to own it. Don't be afraid to challenge the HCP.

 

[RN25]

I saw the specialist today and he has confirmed I'm type 1 and will be starting insulin tomorrow.

 

[becca59]

Not surprised RN25 having just read through this thread. All the red flags were there and I feel your Gp has been very remiss in not taking this more seriously. Hopefully the insulin will make you feel better and you can move forwards and enjoy your new job.

 

[NoMoreBeerAnymore]

I saw the specialist today and he has confirmed I'm type 1 and will be starting insulin tomorrow.

You will get rid of those high blood sugars and get life back on track. Your high sugars were really high, I surprised it took so long.

 

[Polska_Gurom]

Hi @RN25 Welcome to the Forum. I'm sorry that you have not yet received a response to your post and I must point out that as an ex Type1 I am not ideally positioned to answer.There is a lot to deal with here, and I would say ketones is highest on the list. Personally I would at least phone 111 and mention high readings, ketones and blurred vision, which are almost certainly interconnected. If you are still having to wait, I would get yourself to A & E, who always take these symptoms seriously. I hope you are sorted out quickly and in time for the new job. Let us know how things go. Good luck!

What do you mean ex type 1?

 

[Jaylee]

What do you mean ex type 1?

In extreme cases of impending total renal falier. A transplant can be given to major organs? (If a sutable donor is available?)
Whilst they are “at it” the pancreas is also transplanted from the doner, too.. hence “ex.”

My wife came back from a hairdresser a number of years back buzzing about the hairdresser’s T1 husband having such a transplant a little like @Grant_Vicat ?

But alas. It’s not a cure for everybody..
I also believe the procedure has its own challenges?

 

[Polska_Gurom]

In extreme cases of impending total renal falier. A transplant can be given to major organs? (If a sutable donor is available?)
Whilst they are “at it” the pancreas is also transplanted from the doner, too.. hence “ex.”

My wife came back from a hairdresser a number of years back buzzing about the hairdresser’s T1 husband having such a transplant a little like @Grant_Vicat ?

But alas. It’s not a cure for everybody..
I also believe the procedure has its own challenges?

Ah yeah, I know about transplants. Just didn't come to mind because they're so rare.

 

[Jaylee]

Ah yeah, I know about transplants. Just didn't come to mind because they're so rare.

I’ll respectfully let @Grant_Vicat fill you in on his own experience..

All I know is I had to inform my wife of my circumstances when she came home after a styling & bouncing off her hairdresser’s news.
Why they were discussing diabetes is beyond me.
We usually discuss work & music when I get a cut…

 

[Grant_Vicat]

What do you mean ex type 1?

Thank you for the tag @Jaylee . @Polska_Gurom Jaylee is spot on. I was Type one from July 1959 (11 months old) until 13th August 2013. My kidneys were failing and I wasa put on the transplant list in 2012. A few months later I was offered a pancreas transplant to be done at the same time. They advised me that this is not classed as a cure. They were correct. In October 2013 I suddenly had extreme pain in my right foot and not so bad in my left. After 10 months of plastered legs and many scans and X-rays, they decided it is Charcot foot, which can be a diabetic complication. However, in my case the damage is barely visible which is why it took so long to diagnose. I have worn orthotic shoes ever since and I havve to avoid strain on the feet. Therefore no athletics, jumping or dancing. Immunosuppressants can unlesh a number of side effects and Tacrolimus, which I was taking from 2013 till December 2024, caused progressive tremors in my hands, which is not helpful since I am an organist and a pianist. So they tried an alternative with my agreement. It was disasterous. amongst 8 side effects I lost 8kg in 10days. A lot of my musculature had shrunk and I was dehydrating due to diarrhoea, loss of appetite and disturbed metabolism. So I am back on Tacrolimus and accept that I have to work with it. Pancreas transplants are highly risky, since it is a notoriously difficult organ to deal with and is very delicate. Therefore it is not offered as an escape route. Diabetes had done enough damage to my otherwise healthy body that the hospital saw no point in "renewing" my kidneys (with a single one) without "renewing" the organ which had caused the damage. It might amuse you to know that I actually have 3 kidneys and 2 pancreases! Transplants are not as rare as you might think. They perform more than 300 transplants a year at Addenbrooke's Hospital in Cambridge each year. There are 8 centres in the UK which together performed 180 panreas transplants last year. Addenbrooke's is the largest centre.

 

[Jaylee]

Thank you for the tag @Jaylee . @Polska_Gurom Jaylee is spot on. I was Type one from July 1959 (11 months old) until 13th August 2013. My kidneys were failing and I wasa put on the transplant list in 2012. A few months later I was offered a pancreas transplant to be done at the same time. They advised me that this is not classed as a cure. They were correct. In October 2013 I suddenly had extreme pain in my right foot and not so bad in my left. After 10 months of plastered legs and many scans and X-rays, they decided it is Charcot foot, which can be a diabetic complication. However, in my case the damage is barely visible which is why it took so long to diagnose. I have worn orthotic shoes ever since and I havve to avoid strain on the feet. Therefore no athletics, jumping or dancing. Immunosuppressants can unlesh a number of side effects and Tacrolimus, which I was taking from 2013 till December 2024, caused progressive tremors in my hands, which is not helpful since I am an organist and a pianist. So they tried an alternative with my agreement. It was disasterous. amongst 8 side effects I lost 8kg in 10days. A lot of my musculature had shrunk and I was dehydrating due to diarrhoea, loss of appetite and disturbed metabolism. So I am back on Tacrolimus and accept that I have to work with it. Pancreas transplants are highly risky, since it is a notoriously difficult organ to deal with and is very delicate. Therefore it is not offered as an escape route. Diabetes had done enough damage to my otherwise healthy body that the hospital saw no point in "renewing" my kidneys (with a single one) without "renewing" the organ which had caused the damage. It might amuse you to know that I actually have 3 kidneys and 2 pancreases! Transplants are not as rare as you might think. They perform more than 300 transplants a year at Addenbrooke's Hospital in Cambridge each year. There are 8 centres in the UK which together performed 180 panreas transplants last year. Addenbrooke's is the largest centre.

Blimey Grant,

Now I’m gaining further understanding & empathy regarding your personal journey..
There seems no emoji to click on with your response.
I felt it more appropriate to comment?

 

[Polska_Gurom]

Thank you for the tag @Jaylee . @Polska_Gurom Jaylee is spot on. I was Type one from July 1959 (11 months old) until 13th August 2013. My kidneys were failing and I wasa put on the transplant list in 2012. A few months later I was offered a pancreas transplant to be done at the same time. They advised me that this is not classed as a cure. They were correct. In October 2013 I suddenly had extreme pain in my right foot and not so bad in my left. After 10 months of plastered legs and many scans and X-rays, they decided it is Charcot foot, which can be a diabetic complication. However, in my case the damage is barely visible which is why it took so long to diagnose. I have worn orthotic shoes ever since and I havve to avoid strain on the feet. Therefore no athletics, jumping or dancing. Immunosuppressants can unlesh a number of side effects and Tacrolimus, which I was taking from 2013 till December 2024, caused progressive tremors in my hands, which is not helpful since I am an organist and a pianist. So they tried an alternative with my agreement. It was disasterous. amongst 8 side effects I lost 8kg in 10days. A lot of my musculature had shrunk and I was dehydrating due to diarrhoea, loss of appetite and disturbed metabolism. So I am back on Tacrolimus and accept that I have to work with it. Pancreas transplants are highly risky, since it is a notoriously difficult organ to deal with and is very delicate. Therefore it is not offered as an escape route. Diabetes had done enough damage to my otherwise healthy body that the hospital saw no point in "renewing" my kidneys (with a single one) without "renewing" the organ which had caused the damage. It might amuse you to know that I actually have 3 kidneys and 2 pancreases! Transplants are not as rare as you might think. They perform more than 300 transplants a year at Addenbrooke's Hospital in Cambridge each year. There are 8 centres in the UK which together performed 180 panreas transplants last year. Addenbrooke's is the largest centre.

Yeah, in comparison to people who have type 1 it's pretty rare. I learned about a transplant in biology class (before I was diagnosed) and me and all my friends thought it was just a get out of jail free card tbh, obviously that's not the case. Thank you for clearing everything up, and I hope in the future technology advances at a fast enough rate for us both to have a cure, just think a little over 100 years ago diabetes was a fatal disease. All the best.
P.S how do you have 3 kidneys and 2 pancreases? Did they leave them in?

 

[Grant_Vicat]

Blimey Grant,

Now I’m gaining further understanding & empathy regarding your personal journey..
There seems no emoji to click on with your response.
I felt it more appropriate to comment?

You're a good man - thank you!

 

[Grant_Vicat]

Yeah, in comparison to people who have type 1 it's pretty rare. I learned about a transplant in biology class (before I was diagnosed) and me and all my friends thought it was just a get out of jail free card tbh, obviously that's not the case. Thank you for clearing everything up, and I hope in the future technology advances at a fast enough rate for us both to have a cure, just think a little over 100 years ago diabetes was a fatal disease. All the best.
P.S how do you have 3 kidneys and 2 pancreases? Did they leave them in?

It is a sobering thought! I have seen enormous changes since the days when I would boil a glass syringe in a Victorian lidded saucepan and then still exist to write this now. I have had many amusing conversations in the transplant clinic including "Do you realise that between us we have 4 pancreases and six kidneys!" The reason is that they aim to do as little surgery as possible, although the scar belies this! So the kidney was plumbed into my left femoral artery (I can actually feel it just below the belt) and the pancreas is plumbed into the right femoral artery at the same latitude. The old organs haven't disintegrated (apart from the islets many years ago), and the kidneys probably still do something in semi-retirement. Thank you for your kind wishes, which are reciprocated. I hope your journey is smoother than mine,although I must say that the NHS made mine as good as it is posssible to be under the circumstances. Good luck!