Any advice welcome x

[lcarter]

Hi all, long story short, was a type 1 for 11 years then they said I'm a type 2 as producing lots of my own insulin. They also say I'm insulin resistant, and took me off all my insulin in December leaving me on jardiance and metformin.

Then I did keto, and ended up in a&e with high ketones and high blood pressure.

They put me on trulicity along with metformin, I was off work for three weeks with severe side effects, and I didn't eat for 16 days.

Now I'm back on jardiance and metformin, and my levels are through the roof no matter what I eat. Whether it be low carb or high carb, 20 is my number. (Mml)

I'm just aware my case is a strange one, and wondered if anyone had been in this situation before or could advise at all?

Theyve told me not to do keto on jardiance, but even when I did it my levels were high.

Trulicity only thing that has worked so far.

Thank you x

 

[Brunneria]

Have they done some genetic tests to rule out all the different forms of MODY?
Apparently there are 6 types so far identified, and treatment is specific to each.
https://www.diabetes.co.uk/diabetes_mody.html
https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody

I'm very sorry you are having to go through this.

 

[Member496333]

On the face of it, it seems like you're probably massively insulin resistant. Have you considered investigating the possible avenue of extended fasting? Could be a tricky tightrope to walk if you still found yourself with high glucose while your liver is making ketone bodies. No matter, it sounds to me like your HCPs have made the correct decision in taking away your insulin, as more just makes things worse if you really are already making too much of your own.

One way or another you need to burn off some of that stored glucose whilst ideally putting none at all in. I know this sounds extreme and unreasonable, but if you are seeing those numbers constantly, and you are making plenty of your own insulin, then only extreme measures are going to get the job done.

 

[MollieB]

What brought them to the conclusion that you are type 2?

 

[ert]

I'm really sorry you're having a tough time. Can they leave you on basal insulin until things get more stabilized?

 

[Member496333]

One way or another you need to burn off some of that stored glucose whilst ideally putting none at all in. I know this sounds extreme and unreasonable, but if you are seeing those numbers constantly, and you are making plenty of your own insulin, then only extreme measures are going to get the job done.

I just want to redress this statement by making it absolutely clear that this strategy would sooner or later result in your liver producing ketones, and as you are already aware, you need to be extremely careful with this given your current medication.

 

[Crocodile]

@lcarter Some things don't add up from what you're describing. Firstly, you say that you're producing lots of your own insulin and are insulin resistant. The question is why is Trulicity the only medication working. Trulicity acts by stimulating the islet cells to produce more insulin. I've linked some data to read about this drug.
https://www.diabetes.co.uk/diabetes-medication/trulicity.html
If you are resistant and already producing, why stimulate more production and secondly, why is it working ( ignoring side effects ). I think you need to go back to your GP and put him / her on the spot and get them to explain in great detail what they are doing and why. Don't leave without an answer and don't accept obfuscation. It's quite possible that you may have misinterpreted something which is pretty common given the attitude of many doctors to be less forthcoming with information than they should be.

 

[lcarter]

Have they done some genetic tests to rule out all the different forms of MODY?
Apparently there are 6 types so far identified, and treatment is specific to each.
https://www.diabetes.co.uk/diabetes_mody.html
https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody

I'm very sorry you are having to go through this.

Yes they have, so I know it's none of those. So fed up Thanks for responding x

 

[lcarter]

On the face of it, it seems like you're probably massively insulin resistant. Have you considered investigating the possible avenue of extended fasting? Could be a tricky tightrope to walk if you still found yourself with high glucose while your liver is making ketone bodies. No matter, it sounds to me like your HCPs have made the correct decision in taking away your insulin, as more just makes things worse if you really are already making too much of your own.

One way or another you need to burn off some of that stored glucose whilst ideally putting none at all in. I know this sounds extreme and unreasonable, but if you are seeing those numbers constantly, and you are making plenty of your own insulin, then only extreme measures are going to get the job done.

I agree.

 

[lcarter]

What brought them to the conclusion that you are type 2?

Long story, but I've had countless tests over a year to confirm it. I've had it confirmed after blood tests, urine tests, c peptide tests, 25 hour urine tests, genetic tests, you name it. I was on 100 units of insulin a day and they took me off it and there was no change at all to my readings.

 

[lcarter]

I'm really sorry you're having a tough time. Can they leave you on basal insulin until things get more stabilized?

The latest they have said it I'm to increase my jardiance to 25g a day. (Or mg?!) Then they say if that doesnt work then back onto basal insulin.

 

[lcarter]

@lcarter Some things don't add up from what you're describing. Firstly, you say that you're producing lots of your own insulin and are insulin resistant. The question is why is Trulicity the only medication working. Trulicity acts by stimulating the islet cells to produce more insulin. I've linked some data to read about this drug.
https://www.diabetes.co.uk/diabetes-medication/trulicity.html
If you are resistant and already producing, why stimulate more production and secondly, why is it working ( ignoring side effects ). I think you need to go back to your GP and put him / her on the spot and get them to explain in great detail what they are doing and why. Don't leave without an answer and don't accept obfuscation. It's quite possible that you may have misinterpreted something which is pretty common given the attitude of many doctors to be less forthcoming with information than they should be.

I have to be honest, I've gone back to the diabetic teams who made these decisions, and they have told me they are baffled. The consultants have no idea why trulicity is the only thing that manages to bring my levels down, but they did point out that it could be to do with the fact it stopped me eating for 16 days, which I suppose makes sense. No food=good readings for me.

I've tried so many things I feel at a loss of what to do next. Jardiance is my last hope before the suggest insulin again.

Even on keto my levels were high.

I just don't understand it, and I'm exhausted with trying to.

Thanks for your response

 

[Crocodile]

I have to be honest, I've gone back to the diabetic teams who made these decisions, and they have told me they are baffled. The consultants have no idea why trulicity is the only thing that manages to bring my levels down, but they did point out that it could be to do with the fact it stopped me eating for 16 days, which I suppose makes sense. No food=good readings for me.

I've tried so many things I feel at a loss of what to do next. Jardiance is my last hope before the suggest insulin again.

Even on keto my levels were high.

I just don't understand it, and I'm exhausted with trying to.

Thanks for your response

I really feel for you but please hang in there. Persistence pays off eventually. I agree about not eating for 16 days giving false hope with Trulicity. It does seem baffling that giving insulin when resistant might work. Jardiance by the way causes us to simply pee the sugar out via the kidneys. Perhaps you have a similar problem to me or perhaps not but worth a look. I also produce insulin but apparently it is of such poor quality that my body can't use it. I'm fortunate that I'm able to control my BG by being vigilant with my diet. May I ask how many gms of carbs you have each meal. I restrict mine to a max of 20. This is high for some people and low for others but this is where my sweet spot is. We're all different.
Good luck and don't despair just yet,
Glenn

 

[MollieB]

I have to be honest, I've gone back to the diabetic teams who made these decisions, and they have told me they are baffled.

Have they ruled out Cushing's? It is highly unlikely, but "highly unlikely" does not mean "impossible". Even if you don't have other symptoms, I would think that the degree of insulin resistance you seem to have would warrant an evaluation to make sure they aren't missing something.

Some people can also just be SEVERELY insulin resistant for reasons unknown. In severe insulin resistance I have known people to be on 300 units twice a day. (Usually U500 works best for people on that many units).
Syndromes of Severe Insulin Resistance
The Journal of Clinical Endocrinology & Metabolism, Volume 83, Issue 9, 1 September 1998, Pages 3025–3030, https://doi.org/10.1210/jcem.83.9.5143
gives you a list of other rare conditions that you could research too. The article itself seems to focus on a couple specific but Table 1 gives a list of different things to explore. A lot of these are extremely rare but, as I sort of said above....."rare" does not equal "impossible".

 

[lcarter]

I really feel for you but please hang in there. Persistence pays off eventually. I agree about not eating for 16 days giving false hope with Trulicity. It does seem baffling that giving insulin when resistant might work. Jardiance by the way causes us to simply pee the sugar out via the kidneys. Perhaps you have a similar problem to me or perhaps not but worth a look. I also produce insulin but apparently it is of such poor quality that my body can't use it. I'm fortunate that I'm able to control my BG by being vigilant with my diet. May I ask how many gms of carbs you have each meal. I restrict mine to a max of 20. This is high for some people and low for others but this is where my sweet spot is. We're all different.
Good luck and don't despair just yet,
Glenn

I eat a high carb diet I think this is where I need to address it. Yet the drs tell me not to do jardiance and low carb xx

 

[lcarter]

Have they ruled out Cushing's? It is highly unlikely, but "highly unlikely" does not mean "impossible". Even if you don't have other symptoms, I would think that the degree of insulin resistance you seem to have would warrant an evaluation to make sure they aren't missing something.

Some people can also just be SEVERELY insulin resistant for reasons unknown. In severe insulin resistance I have known people to be on 300 units twice a day. (Usually U500 works best for people on that many units).
Syndromes of Severe Insulin Resistance
The Journal of Clinical Endocrinology & Metabolism, Volume 83, Issue 9, 1 September 1998, Pages 3025–3030, https://doi.org/10.1210/jcem.83.9.5143
gives you a list of other rare conditions that you could research too. The article itself seems to focus on a couple specific but Table 1 gives a list of different things to explore. A lot of these are extremely rare but, as I sort of said above....."rare" does not equal "impossible".

Yes they tested for Cushings.

300 units a day of insulin?

Wow!

 

[Mike d]

I eat a high carb diet I think this is where I need to address it. Yet the drs tell me not to do jardiance and low carb xx

Poor advice IMO

 

[DCUKMod]

I eat a high carb diet I think this is where I need to address it. Yet the drs tell me not to do jardiance and low carb xx

Whilst the Jardiance class of drugs carries a risk of DKA at normal blood sugars, it is a low chance of that happening. Of course, that it is a low chance doesn't make it any less serious if you become that one in howevermany to develop DKA?

My feeling is that at the moment, you are a long way away from normoglycaemia. Perhaps it could be helpful to reduce the carbs a bit; say by 50% (a figure straight from the top of my head, with no scientific grounding), to see if you can start brining those numbers towards a healthier place.

It would be imperative to continue testing and to have the means to test blood ketones too. As you would be unlikely to be in nutritional ketosis, there could be very few, if any ketones for the time being.

This must be frying your brain!