Uncontrollable numbers

[Badgerabroad]

My last few hba1c tests have been above 12, I follow a healthy diet and excersise regularly, I'm currently not in the UK because of my work and the doctor here in Singapore is suggesting that I start to inject insulin, I'm due back in the UK in April and not sure if I should wait to speak to my GP or just take the doctor here advice. I am finding that of I am less stressed my morning numbers can be as low as 12 but if I'm stressed with work ect my numbers can be as high as 18 or more. Just wondering if I should take the local doctor here advice and start injecting insulin straight away or wait. I've been on 2000mg of metformin daily for the past 5 years.

 

[Resurgam]

What type of diabetes do you have?

 

[EllieM]

I'm assuming you've been T2 for the last 5 years. If not T2, please ignore the rest of this post.

Doctors in the UK normally try a few drugs before progressing to insulin (gliclazide etc) but maybe the available range is less in Singapore? (Or maybe the doctor is suggesting insulin because your levels are so high). Metformin is actually quite a mild drug as regards controlling T2.

An hba1c of 12% (or 108 in the units now used in the UK) corresponds to an average blood sugar of 16.5, so I personally wouldn't want to stay at those levels for another couple of months. And I'm really puzzled as to why your GP hasn't changed your treatment already if you've been running these levels for the last few tests.

I follow a healthy diet and excersise regularly,

The exercise is excellent but the biggest factor for a T2 is diet, and different people have very different definitions of what is healthy. If your definition is low fat, and healthy carbs (eg wholemeal bread and brown rice) then you won't have been doing your body any favours, as T2s are carbohydrate intolerant and have to produce more and more insulin to process the carbs they eat. Eventually their bodies cannot produce enough insulin and their blood sugar levels go up. Unfortunately a side effect of high insulin levels and high blood sugar tends to be weight gain (though there are thin T2s) which can lead to a vicious circle of weight gain leading to increased insulin resistance and blood sugars and increasing weight gain...

As a T2, you have various options
1) medication route, as dictated by the doctors who will tell you that T2 is a progressive disease ending in insulin injections. This isn't necessarily bad, and it allows you to keep carbs in your diet, but be aware that insulin has its own issues (frequent blood tests, carbs counting, the need to avoid hypos/lows).
2) Diet. Reduce the carbs so that your body can cope. Here's a really useful link to @JoKalsbeek 's blog about T2 and diet

JoKalsbeek's blog | Diabetes Forum • The Global Diabetes Community

And there is one other (unlikely) option which I should mention because you are quite young to have to move to insulin. If you are a misdiagnosed T2 and are in fact a slow onset T1 (lots of doctors just assume that older and/or fatter people are T2 and don't do the tests to check for T1) then insulin is inevitable.

If you describe a typical day's diet then the folk on here will be able to say how much carbs you are currently consuming, and hence how much scope you've got to reduce them.

Good luck, whatever you decide to do, but be aware that your current levels are dangerous to your health.

ps edited to add, Welcome to the forums.

 

[Badgerabroad]

Thanks so much for detailed reply, I should note that up until November I was taking Gliclazide 40mg daily and linagliptin 5mg daily, this had zero effect on reducing my hba1c. I have honestly lost faith in some of the medicine and tried various other methods. I went to see a dietician who is knowledgeable about type 2 and he said concentrate on weight training. I used to be 120kg when I was first diagnosed but now I'm about 79kg and look quite thin, Compared to how I used to be, certainly not overweight, I seem to lose more weight when blood sugar is high. Which is quite often, I will be seeing the local doctor here in Sunday to get an updated hba1c but from my own daily results I'm sure it will be just as high as it's always been.

 

[techdiabetic]

Thanks so much for detailed reply, I should note that up until November I was taking Gliclazide 40mg daily and linagliptin 5mg daily, this had zero effect on reducing my hba1c. I have honestly lost faith in some of the medicine and tried various other methods. I went to see a dietician who is knowledgeable about type 2 and he said concentrate on weight training. I used to be 120kg when I was first diagnosed but now I'm about 79kg and look quite thin, Compared to how I used to be, certainly not overweight, I seem to lose more weight when blood sugar is high. Which is quite often, I will be seeing the local doctor here in Sunday to get an updated hba1c but from my own daily results I'm sure it will be just as high as it's always been.

I would take the Doctor's advice and not wait any longer to get your levels under control, I myself have recently swapped to Insulin, Yes it took a few attempts to find the correct one for me but now my levels are well under control, you may find they keep you on a tablet form (Cana for me) also and this would be to stop you gaining any weight as above insulin can cause you to gain weight.

#dontdelaygethelptoday

 

[NicoleC1971]

Hi and well done on your efforts to lose a lot of weight, get fitter and control your blood sugars. It must be frustrating that despite the weight loss and exercise things are still not improving so I hope you'll take what I say as someone who wants to give you a steer and not to be critical of your approach.
I can only echo what Ellie M advised above re the benefits of a low carb diet. If you have high blood sugars you will be pee ing out the glucose from the carbs that you are eating which isn't a healthy way to lose weight!
If you were to go onto insulin you would likely observe some weight gain as your blood sugars came down to illustrate this point. Unfortunately putting even more insulin into your already insulin resistant body simply means you will need increasing doses of insulin if nothing else changes. Remember that apart from feeling well the point of better control is to prevent kidney , heart disease and other problems associated with arterial disease and merely lowering your blood sugars won't protect you from this.
Weight training is great as getting more muscular will make you more sensitive to your own insulin but if you have consistently high sugars unfortunately your body will struggle to respond to that training.
In short you've got to look at the 'healthy' diet because it doesn't seem to be working for you as an insulin resistant person! The goal of your diet should be to reduce your insulin levels and thus your insulin resistance.
The main ways of doing this are 1) Very low cal diets though this approach may be less suitable if you've had type 2 for a while 2) low carb diets like the programme offered here on this site or on Diet Doctor (lots of tips, videos and recipes) 3) Intermittent fasting e.g. 5:2 diet or restricted feeding windows e.g. eating from 12-6 pm only so as to lower insulin levels for the remaining 18 hours.
Drugs wise you've not found the gliclazide helpful but there's a class of drugs called sglt2 inhibitors (emphageflozin etc.) you could discuss with your doctor. These help you expel the glucose via your kidneys and like all drugs are only partially effective in reducing the symptom of high blood sugar without reducing the cause of it (insulin resistance) but have a better track record in terms of helping diabetics avoid the complications I mentioned above. Your doctor will be anxious to get you onto insulin because the focus is on reducing blood sugars ONLY as this is the thing that is easy to measure but I'd do some research before going down this route and I am suggesting some titles below in addition to the sites mentioned above:
Dr Jason Fung discusses these options in his book The Diabetes Code (also on Audible) and I also liked Dr Ben Bikman's Why We Get Sick which goes into more detail on insulin resistance. You can see plenty of their videos on YouTube to get an idea of their message.

 

[TashT1]

Loosing weight with high bg’s is a sign of type 1. Late onset presents with characteristics of both type 2 & type 1. If you find the meds don’t work & insulin is now required I would request a c-peptide test to find out how much insulin your body is producing. Without that info you can not be 100% sure which type of diabetes you have.

If your sure it’s type 2 I would question the ‘dietician that knows about type 2’ quite often they still steer you in the direction of high carb diets. If you can give an idea of the average amount of carbs you eat in a day this may also indicate why the meds are not working.

When you hit a crossroads like now it’s helpful to look at all possible causes & effect.

 

[EllieM]

I went to see a dietician who is knowledgeable about type 2 and he said concentrate on weight training. I used to be 120kg when I was first diagnosed but now I'm about 79kg and look quite thin, Compared to how I used to be, certainly not overweight, I seem to lose more weight when blood sugar is high. Which is quite often, I will be seeing the local doctor here in Sunday to get an updated hba1c but from my own daily results I'm sure it will be just as high as it's always been.

Actually, though weight loss is a symptom of both T1 and T2 the fact that the other T2 drugs have failed for you makes slow onset T1 a bit more likely. Do you know if you have ever been tested for it (c-peptide and/or GAD antibody tests)? It might be worth getting some ketone urine testing strips as if your bgs and ketones are high then you are at risk of diabetic ketoacidosis, which is fatal without insulin. Ask the local doctor to check for ketones when you see him/her. Far too many people get a T1 diagnosis via a hospital admission for DKA.

 

[Andydragon]

Loosing weight with high bg’s is a sign of type 1. Late onset presents with characteristics of both type 2 & type 1. If you find the meds don’t work & insulin is now required I would request a c-peptide test to find out how much insulin your body is producing. Without that info you can not be 100% sure which type of diabetes you have.

If your sure it’s type 2 I would question the ‘dietician that knows about type 2’ quite often they still steer you in the direction of high carb diets. If you can give an idea of the average amount of carbs you eat in a day this may also indicate why the meds are not working.

When you hit a crossroads like now it’s helpful to look at all possible causes & effect.

T2 can lose weight via high bloods too.
But I agree that there are symptoms being described here that would make me get that discussion going. LADA, or type 1 or other such tests seems very sensible.

Diabetic meds making no differences, especially glic and others makes me wonder too as Metformin is not likely to make much difference if those don't. That's backwards prescription order compared to nhs

 

[bulkbiker]

My last few hba1c tests have been above 12, I follow a healthy diet and excersise regularly, I'm currently not in the UK because of my work and the doctor here in Singapore is suggesting that I start to inject insulin, I'm due back in the UK in April and not sure if I should wait to speak to my GP or just take the doctor here advice. I am finding that of I am less stressed my morning numbers can be as low as 12 but if I'm stressed with work ect my numbers can be as high as 18 or more. Just wondering if I should take the local doctor here advice and start injecting insulin straight away or wait. I've been on 2000mg of metformin daily for the past 5 years.

How were you diagnosed T2?
Have you ever had a c-peptide or fasting insulin test to see what you endogenous insulin production is like?
As you are working in Singapore I guess you have full health insurance so these tests should be available to you.
Would definitely be worth getting them and looking at your diagnosis. You may well be one of the T1 variants rather than T2.

 

[Badgerabroad]

Thanks so much for all the info given here, I'm seeing my doctor on Sunday morning for the latest hba1c tests so I'll discuss the other tests with him and report back here, as far as my current diet goes its been a bit varied over the last few months as I've been trying new things. Today I've had 1 wholewheat toast and egg for breakfast and a Greek salad for lunch, dinner will be chicken with cream spinach sauce. If still hungry I snack on almonds or seaweed which are both low in carbs. Although a couple of months ago I was eating a small amount of muesli in the mornings and small amount of rice with lunch and my numbers seemed better. Then all of a sudden it's constantly high in the morning even with ultra low carb diet plans. I'm just heading to the gym and trying to concentrate on weights rather than cardio as I don't want to lose any more weight. I think the c peptide test will be good so I will request that on Sunday. Thanks again for all of your help.

 

[Resurgam]

Something made me suspect that you are not a boring type two like me, and the amount of carbohydrate in your diet is not excessive.
You might very well need insulin - and that is something to get sorted out at the double, as it can get very urgent very quickly for some - for others it is a long slow process but it seems that it isn't predictable.
Better safe than sorry.

 

[LittleGreyCat]

I used to be 120kg when I was first diagnosed but now I'm about 79kg and look quite thin,

How tall are you?
I have been down a similar route (although not nearly as heavy) and discovered that "looking quite thin" compared to my original size did not mean that I was quite thin, nor that I couldn't do with losing a few more pounds/kilos.

BMI isn't an accurate measure of ideal weight because we are all different, and weights tend to put on a bit of extra muscle as well.
However your BMI can at least be taken as a broad hint.

 

[MrsA2]

Be careful of low carbing when on Gliclazade. The combination can cause hypos or dka
https://www.nhs.uk/medicines/gliclazide/

 

[EllieM]

You might very well need insulin - and that is something to get sorted out at the double, as it can get very urgent very quickly for some - for others it is a long slow process but it seems that it isn't predictable.

Yes, @Badgerabroad I strongly urge you to test for ketones asap, (you can buy urine testing strips from the chemist) as waiting for the results of a cpeptide test may be too late. High ketones plus high bgs can lead to DKA very quickly, and that leads to coma and death unless you get to the hospital on time and get put on an insulin drip, probably in intensive care. Here's some info from the NHS website

Diabetic ketoacidosis - NHS - NHS (www.nhs.uk)

Good luck.

 

[KK123]

My last few hba1c tests have been above 12, I follow a healthy diet and excersise regularly, I'm currently not in the UK because of my work and the doctor here in Singapore is suggesting that I start to inject insulin, I'm due back in the UK in April and not sure if I should wait to speak to my GP or just take the doctor here advice. I am finding that of I am less stressed my morning numbers can be as low as 12 but if I'm stressed with work ect my numbers can be as high as 18 or more. Just wondering if I should take the local doctor here advice and start injecting insulin straight away or wait. I've been on 2000mg of metformin daily for the past 5 years.

Personally I'd take the Drs advice and get some insulin so at least you have access to it to use as required by testing & testing & testing. Better to have it and not need it than the other way round. Then, in April you can assess how its all gone, if you turn out still to be type 2 after further tests you can always stop it (under medical guidance). I would not want to stay at those levels for 2 more months and although I understand it's certainly not straightforward in your case, if you are a type 2 I don't think you will have done yourself much harm by taking (possible very small) amounts for 2 months. On the other hand your numbers are likely to remain high without it (I see you're already low carbing) and you must check for ketones. x

 

[Badgerabroad]

Personally I'd take the Drs advice and get some insulin so at least you have access to it to use as required by testing & testing & testing. Better to have it and not need it than the other way round. Then, in April you can assess how its all gone, if you turn out still to be type 2 after further tests you can always stop it (under medical guidance). I would not want to stay at those levels for 2 more months and although I understand it's certainly not straightforward in your case, if you are a type 2 I don't think you will have done yourself much harm by taking (possible very small) amounts for 2 months. On the other hand your numbers are likely to remain high without it (I see you're already low carbing) and you must check for ketones. x

Finally had my HbA1c test and it was at 11.1 % my fasting blood glucose was 19.2! Ive started 8 units of insulin glargine, Lantus every night at 10PM, also Janumet tablets which is 50mg stigaliptin and 1000mg metformin combined every morning and night. I'm super happy to report that after just 2 days my fasting blood glucose from my own test has dropped down to 13.1 which is obviously still not great but moving in the right direction. I'm hoping after a week or so my numbers will be normal. Out of curiosity and my doc here will update me but is there a minimum lantus course to take, I mean if i get my numbers in check would I reduce dosage or reduce frequency of dosage or just carry on as is? Thanks for all the help its been great, wish I had came on here sooner!

 

[EllieM]

Out of curiosity and my doc here will update me but is there a minimum lantus course to take, I mean if i get my numbers in check would I reduce dosage or reduce frequency of dosage or just carry on as is?

You really need the c-peptide and GAD tests to see if you are in fact a slow onset T1 (LADA), as seems possible from a lot of your symptoms. If you are LADA then your insulin production gradually goes down and eventually you need to inject it, even if you are on a keto diet. (Some people slow down the move to insulin by reducing their carbs, but I suspect you have already gone past that point.) So, various options here

1) You are LADA. Insulin will bring your levels down to normal, though you'll probably need to add in a short acting insulin soon to balance the carbs you have with your meals. Insulin will become a permanent part of your life, but on the plus side you'll have the freedom to inject to compensate for a high carb meal or snack. You'll probably be able to drop all the drugs other than the insulin, but you'll be injecting multiple times a day. (I've been T1 for 51 years, it's a pain but not a death sentence).

2) You are T2. In which case a low carb diet may be able to reduce or eliminate you need for insulin. Lantus is a 24hour drug, so you need to keep taking it every day, though if your levels come down you'll be able to reduce the dose. Hopefully the doctor warned you about hypos? (If not, ask on here, because you need to know about them. Make sure you carry sugar or equivalent with you at all times)

3) You have some other much more obscure form of diabetes (eg MODY) and you'd need a specialist endocrinologist to diagnose and treat.

But it's excellent that the insulin is bringing your levels down. Good luck.

 

[Badgerabroad]

You really need the c-peptide and GAD tests to see if you are in fact a slow onset T1 (LADA), as seems possible from a lot of your symptoms. If you are LADA then your insulin production gradually goes down and eventually you need to inject it, even if you are on a keto diet. (Some people slow down the move to insulin by reducing their carbs, but I suspect you have already gone past that point.) So, various options here

1) You are LADA. Insulin will bring your levels down to normal, though you'll probably need to add in a short acting insulin soon to balance the carbs you have with your meals. Insulin will become a permanent part of your life, but on the plus side you'll have the freedom to inject to compensate for a high carb meal or snack. You'll probably be able to drop all the drugs other than the insulin, but you'll be injecting multiple times a day. (I've been T1 for 51 years, it's a pain but not a death sentence).

2) You are T2. In which case a low carb diet may be able to reduce or eliminate you need for insulin. Lantus is a 24hour drug, so you need to keep taking it every day, though if your levels come down you'll be able to reduce the dose. Hopefully the doctor warned you about hypos? (If not, ask on here, because you need to know about them. Make sure you carry sugar or equivalent with you at all times)

3) You have some other much more obscure form of diabetes (eg MODY) and you'd need a specialist endocrinologist to diagnose and treat.

But it's excellent that the insulin is bringing your levels down. Good luck.

Thanks Ellie, I was hoping to get back home in April and speak to my own surgery as I seem to be passed around different docs here and it seems everyone has a different opinion. Do you think its a matter of urgency to get the c-peptide tests or it could wait until I get back home?

Thanks

 

[EllieM]

Do you think its a matter of urgency to get the c-peptide tests or it could wait until I get back home?

Well, remember that we're not doctors on here and cannot diagnose, but...

Healthwise, you've done the most important thing, which is to get those damaging levels down. (Hopefully you're going to get some follow up to modify the lantus dose as necessary?) You have insulin which should remove the risk of diabetic ketoacidosis unless your figures go high again and you don't adjust your insulin appropriately. (Do you have some way to test ketones?)

On the other hand, it's going to take a while to get those tests done once you are in the UK. (In your position, once home I'd be pushing for a referral to an endocrinologist to get the correct diagnosis, though a GP should be able to order the test, but may not want to. Some GPs are clued up about variants of diabetes other than vanilla T1 and T2, others aren't.) But if you can get the doctors in Singapore to order the two tests you'll have the results available when you get back to the UK and its very covid-stretched NHS. Newly insulin dependant people, whether T1 or T2, need follow up to adjust their insulin doses correctly. I'm going to tag a few LADA folk to see if they have an opinion on getting the test done now. (Anyone know if he's more likely to have GAD antibodies if tested now rather than in 3 months time???) @Daibell , @Antje77