I need serious help/advice.

[Andy499]

Hi, this is hard for me to write, I’m not sure where to start but I need help, I feel so alone in this battle, and I gave up, and now I’m suffering the consequences of giving up.

I am T1D but LADA (Gliclazide 40mg morning 80mg evening).

I stopped monitoring my sugars properly and stopped caring so much about what I was eating during 2020 lockdown, and I never stopped. I obviously don’t eat like a normal person but I don’t carb count, I eat fries, white bread, basmati rice on a regular basis. My favourite meal to cook is a curry from madras paste with a full pack of microwave basmati rice (half a pack isn’t enough) and a naan (also bad I know but I stopped caring). It’s hard to eat like a diabetic because it’s depressing and unsatisfying..

I have recently finished therapy for needle phobia and I am able to have blood tests now and the results are not good.

I have high cholesterol and triglycerides (on meds for last 6 months) my cholesterol is now around 5.5 (down from 9) which I am happy with.

My main problem now is high blood pressure and hba1c of 87 (up from 52 last time). And my poor diet.

I do not like much veg, only peas and cauliflower. When I eat “well” for my evening meal like a good diabetic should, I feel hungry 2 hours later and end up ordering a take out or going to McDonald’s which is awful, but eating small low carb portions does not fulfil me at all. I’m so depressed regarding it and feel very alone, I’m scared that I’ll die young (currently 33) but I don’t know how to fix it.

Please someone help me

 

[Andy499]

I have just taken by blood sugar - I have not eaten any food today, only drank a little bit of milk to take my tablets with (i do this every day, I dont eat breakfast) and my blood sugar is 13.1 - I dont understand how it can be this high after taking meds 2 hours ago and EATING NOTHING.

Even when I EAT NOTHING by sugar is high - WHY?!

I hate this diesease, its going to kill me one way or another, and I dont understand it.

 

[Rokaab]

When you are LADA you will eventually need to start taking insulin as your pancreas will just not be able to provide enough insulin for the food you are eating, it may have got to this point, especially as you sound like you are eating quite a lot of carbs

Whilst some people with LADA manage to delay the onset of having to use insulin (some by quite a long time) it is often by eating low carb/keto, if you cannot do this (for whatever reason), and your sugars are going up and staying up chances are you may well need to start on insulin.

As for high sugars in the morning this may be the dawn phenomenon - ie where your liver (rather unhelpfully for diabetics) pumps a load of glucose into your bloodstream to get you ready for the day, or its just the fact that your levels were high when you went to bed and never dropped overnight.

Note that T1's often have more flexibility in what they can eat (than the more common T2) but insulin usage will be required.

Obviously I'm not a medical person and am only going on what I know and have read (not convinced I ever had a honeymoon period as I was very young when diagnosed).

I would suggest talking with your diabetic team, if your pancreas is now creating very little insulin I don't think the Gliclazide will do a great deal

 

[HSSS]

It sounds like you are taking on the advice for a type 2 rather than a type 1. Whilst low carbing can be effective for a type 1 I believe matching insulin to intake is the most crucial aspect whatever diet is chosen. Hopefully other type 1 will come along and offer more support soon. LADA do tend to increase their insulin needs as the disease progresses through its slow onset.

And as far as low carb is concerned there is no need for portions to be small. It is crucial they are satiating so that you don’t snack and head off for a maccas. Almost all of us doing it find out cholesterol ratios improve (total figures are pointless and tell us little). Triglycerides especially usually fall despite eating more naturally occurring fats. Eating an excessive amount of carbs and junk on the other raises all the levels we don’t want raised. These is a lot of controversy on the role of fats in cholesterol and even in just how predictive various aspects of cholesterol are on future health. Right now in your shoes I’d focus on getting the diabetes in hand as a definite risk to health in the nearer future and then see where you are cholesterol wise (as a possible risk, maybe, in the long term)

 

[Andy499]

It sounds like you are taking on the advice for a type 2 rather than a type 1. Whilst low carbing can be effective for a type 1 I believe matching insulin to intake is the most crucial aspect whatever diet is chosen. Hopefully other type 1 will come along and offer more support soon. LADA do tend to increase their insulin needs as the disease progresses through its slow onset.

And as far as low carb is concerned there is no need for portions to be small. It is crucial they are satiating so that you don’t snack and head off for a maccas. Almost all of us doing it find out cholesterol ratios improve (total figures are pointless and tell us little). Triglycerides especially usually fall despite eating more naturally occurring fats. Eating an excessive amount of carbs and junk on the other raises all the levels we don’t want raised. These is a lot of controversy on the role of fats in cholesterol and even in just how predictive various aspects of cholesterol are on future health. Right now in your shoes I’d focus on getting the diabetes in hand as a definite risk to health in the nearer future and then see where you are cholesterol wise (as a possible risk, maybe, in the long term)

This is where I dont understand - how can I increase portion sizes when I cant eat rice, or chips, or potato? Its literally just meat at this point for me.

I dont want to take insulin injections - I cant do that and never will, it has to be controlled by pills only.

 

[Andy499]

When you are LADA you will eventually need to start taking insulin as your pancreas will just not be able to provide enough insulin for the food you are eating, it may have got to this point, especially as you sound like you are eating quite a lot of carbs

Whilst some people with LADA manage to delay the onset of having to use insulin (some by quite a long time) it is often by eating low carb/keto, if you cannot do this (for whatever reason), and your sugars are going up and staying up chances are you may well need to start on insulin.

As for high sugars in the morning this may be the dawn phenomenon - ie where your liver (rather unhelpfully for diabetics) pumps a load of glucose into your bloodstream to get you ready for the day, or its just the fact that your levels were high when you went to bed and never dropped overnight.

Note that T1's often have more flexibility in what they can eat (than the more common T2) but insulin usage will be required.

Obviously I'm not a medical person and am only going on what I know and have read (not convinced I ever had a honeymoon period as I was very young when diagnosed).

I would suggest talking with your diabetic team, if your pancreas is now creating very little insulin I don't think the Gliclazide will do a great deal

Thanks for this information - however I wont go on to injecting myself every time i put food in my mouth - I cant do that. It will have to be tablet controlled.

Also talk with my "diabetic team"? Whos that? I was diagnosed in hospital after ketosis and told to be on my way the next day - ive never received any advice or help from any team or anything, never.

 

[Rokaab]

Thanks for this information - however I wont go on to injecting myself every time i put food in my mouth - I cant do that. It will have to be tablet controlled.

Unfortunately and I know you're not going to like this but when LADA/T1 when your pancreas does stop creating insulin you will have to, no other choices.
There are no tablets for T1's/LADA to replace/create insulin once your pancreas has stopped producing it

Also talk with my "diabetic team"? Whos that? I was diagnosed in hospital after ketosis and told to be on my way the next day - I've never received any advice or help from any team or anything, never.

You need to talk to your doctors then and as a T!/LADA you can get referred to your hospital diabetes clinic. They may be help with suggestions for you
How long ago were you diagnosed just out of curiosity?

 

[Andy499]

Unfortunately and I know you're not going to like this but when LADA/T1 when your pancreas does stop creating insulin you will have to, no other choices.
There are no tablets for T1's/LADA to replace/create insulin once your pancreas has stopped producing it


You need to talk to your doctors then and as a T!/LADA you can get referred to your hospital diabetes clinic. They may be help with suggestions for you
How long ago were you diagnosed just out of curiosity?

How many times a day will I need to stab myself to carry on living? I really dont think I can do that, its far too disruptive as well - what about when I am out for meals with work, or family? I cant just start injecting myself in front of people!

I was diagnosed January 2017 - very very traumatic after living with neuropathy in my head for 6 months, it created my fear of needles (only just been able to get blood tests done) and my results, as mentioned, are horrendus.

 

[Antje77]

I have just taken by blood sugar - I have not eaten any food today, only drank a little bit of milk to take my tablets with (i do this every day, I dont eat breakfast) and my blood sugar is 13.1 - I dont understand how it can be this high after taking meds 2 hours ago and EATING NOTHING.

Even when I EAT NOTHING by sugar is high - WHY?!

I hate this diesease, its going to kill me one way or another, and I dont understand it.

Why are you not on insulin?
Being T1, your immune system kills the cells that produce insulin, and there will be a tipping point where you don't produce enough yourself and stay healthy.
It can also lead to DKA, do you have a way to test for ketones?

How many times a day will I need to stab myself to carry on living? I really dont think I can do that, its far too disruptive as well - what about when I am out for meals with work, or family? I cant just start injecting myself in front of people!

For some people, like yourself, starting insulin can be an enormous emotional hurdle. I'm so sorry you feel it's too hard.
For others, starting insulin can be a big relief, for me it gave me a means of controlling my condition and stay healthy.
As for injecting when out and about, it's a normal thing to do and no-one really bats an eye. It can take some time to feel comfortable with it, and you can always resort to popping in the hallway or such for the couple of seconds it takes to inject.

Please ask for a referral to a hospital team urgently, you need their help!

Wish you all the best!

 

[Deleted member 527103]

I cant just start injecting myself in front of people!

I am sorry to read about your problems. Diabetes can be a horrible condition, especially when you pile things like needle phobia on top of it.
Is the needle phobia the reason why you cannot inject in front of people or is it a concern what they may think of you?
It sounds as if you are working on the needle phobia. I hope this continues to get easier for you.
As far as what other people thing, I learnt early on that is their problem. I need to inject to keep myself alive and there is nothing I have done to cause this. It took me some time to be comfortable sharing this with them but life has become easier since I did.
If other people have a problem with needles, they can look away. I have asked people beforehand if they have an issue and handled it accordingly if they say "yes" but that has been very rare.
If they chose to judge me for having an auto-immune condition, they are nasty, judgemental, ignorant people. This reflects much worse on them than it does on me. And, to be honest, over nearly 20 years of Type 1 diabetes, I realised my fear of these people has been completely unjustified - no one has judged me for having diabetes. At least not until I explain to them how we have to do the job of a major organ of my body. Then, their judgement becomes admiration for what we have to do to stay alive.

 

[Jaylee]

Hi, this is hard for me to write, I’m not sure where to start but I need help, I feel so alone in this battle, and I gave up, and now I’m suffering the consequences of giving up.

I am T1D but LADA (Gliclazide 40mg morning 80mg evening).

I stopped monitoring my sugars properly and stopped caring so much about what I was eating during 2020 lockdown, and I never stopped. I obviously don’t eat like a normal person but I don’t carb count, I eat fries, white bread, basmati rice on a regular basis. My favourite meal to cook is a curry from madras paste with a full pack of microwave basmati rice (half a pack isn’t enough) and a naan (also bad I know but I stopped caring). It’s hard to eat like a diabetic because it’s depressing and unsatisfying..

I have recently finished therapy for needle phobia and I am able to have blood tests now and the results are not good.

I have high cholesterol and triglycerides (on meds for last 6 months) my cholesterol is now around 5.5 (down from 9) which I am happy with.

My main problem now is high blood pressure and hba1c of 87 (up from 52 last time). And my poor diet.

I do not like much veg, only peas and cauliflower. When I eat “well” for my evening meal like a good diabetic should, I feel hungry 2 hours later and end up ordering a take out or going to McDonald’s which is awful, but eating small low carb portions does not fulfil me at all. I’m so depressed regarding it and feel very alone, I’m scared that I’ll die young (currently 33) but I don’t know how to fix it.

Please someone help me

Hi,

Firstly, don’t think in terms of what a “good diabetic” should do. Discover what works for you.

High BGs can trigger negative thought processes which feeds on whatever is there, be it a phobia or the feeling of alone..

Your hunger after a meal?
Insulin plays a part in utilising what is consumed for the bodies for fuel. Little or no insulin means this is not happening. Like a blockage in the fuel filter on a car engine? So it’s no wonder you might feel hungry after a meal.
Your body is crying out for a functioning metabolism regarding what’s in the blood stream as glucose.
Adequate insulin is the key..

Please seek further consultation with your healthcare team..

& let us know how you get on.

 

[HSSS]

This is where I dont understand - how can I increase portion sizes when I cant eat rice, or chips, or potato? Its literally just meat at this point for me.

I dont want to take insulin injections - I cant do that and never will, it has to be controlled by pills only.

By increasing meat (which is fine), other proteins like eggs, nuts, fish etc and naturally occurring fats including dairy (ie not the veg and seed oils that are terrible for everyone) and also veg other than potatoes. All of those will keep you fuller and demand less insulin than rice chips and potatoes will - as it would for anyone diabetic or not.

However as a type 1 it will not manage that situation, entirely or for long without insulin. It might help minimise the size of doses you require. Again you need other type 1’s or drs to advise you better. Get a hospital referral as your first step.

 

[Andy499]

Why are you not on insulin?
Being T1, your immune system kills the cells that produce insulin, and there will be a tipping point where you don't produce enough yourself and stay healthy.
It can also lead to DKA, do you have a way to test for ketones?


For some people, like yourself, starting insulin can be an enormous emotional hurdle. I'm so sorry you feel it's too hard.
For others, starting insulin can be a big relief, for me it gave me a means of controlling my condition and stay healthy.
As for injecting when out and about, it's a normal thing to do and no-one really bats an eye. It can take some time to feel comfortable with it, and you can always resort to popping in the hallway or such for the couple of seconds it takes to inject.

Please ask for a referral to a hospital team urgently, you need their help!

Wish you all the best!

Im not on insulin because when I was diagnosed they gave me a presciption for tablets and said on your way. These have increased recently becasue I called the GP complaining about higher blood sugar readings and they just prescibed me more tablets so I was on 40mg a day, now im on 120mg a day but nothing seems to have changed. I do have ketone strips yes, but I dont really know what this is, whenever I do them (rarely) it says 0.1 or 0.

I just physically cant inject myself - my brain will not allow me to do that, so its tablets/diet control for me, no insulin unless there is an oral insulin, and I doubt this will ever change. I cant stab myself with a needle multiple times a day - I can only just bare blood tests and I have to lie down and breathe deep and count when doing this. Imagine me doing this in public? Not going to happen im afraid.

Also everyone is saying about a "healthcare team" - I dont have this, who do I contact? My GP seems to know little to nothing about diabetes whenever I speak to them, there are no specialists in my small town and nowhere for me to go to.

 

[Rokaab]

Also everyone is saying about a "healthcare team" - I dont have this, who do I contact? My GP seems to know little to nothing about diabetes whenever I speak to them, there are no specialists in my small town and nowhere for me to go to.

You will need to get your doctor to refer you to the 'local' hospital's diabetes team (though obviously it may not be that local by the sounds of things)

As a T1/LADA there should be no issues with you being referred, and since your doctors don't seem to know much, it it important you get referred asap. Almost sounds like they've forgotten you're Type1!

I would try and get it as an urgent referral as possible, as you can see your sugar levels are rising and this does need dealing with asap and if your doctors do not have the expertise to deal with it then you need help from the hospital before you do end up in A&E

 

[Andy499]

You will need to get your doctor to refer you to the 'local' hospital's diabetes team (though obviously it may not be that local by the sounds of things)

As a T1/LADA there should be no issues with you being referred, and since your doctors don't seem to know much, it it important you get referred asap. Almost sounds like they've forgotten you're Type1!

I would try and get it as an urgent referral as possible, as you can see your sugar levels are rising and this does need dealing with asap and if your doctors do not have the expertise to deal with it then you need help from the hospital before you do end up in A&E

Im not quite sure what more they can do - the GP have upped my medication dose and told me to eat better. I mean I would like more support like maybe a dietician (but I cant afford that.. cant even afford to put my heating on..) so I dont know.

What would a hospitals diabetes team do differently?

 

[Rokaab]

Im not quite sure what more they can do - the GP have upped my medication dose and told me to eat better. I mean I would like more support like maybe a dietician (but I cant afford that.. cant even afford to put my heating on..) so I dont know.

That's not the advice to give a T1 not to put too fine a point on it, they have upped medication which at this point may well not be doing anything or very little.

It sounds like your doctors think you are a T2 or just don't know what a T1 needs - whilst they may sound very similar, T1 and T2 are actually very different conditions and you need a team that knows what your condition actually is and what options should be used and/or suggested

What would a hospitals diabetes team do differently?

A hospital team will make sure you're actually on the correct medication and may have suggestions to help with your needle phobia, they can also help with access to some of the better tech available (CGM's have been a complete game-changer for me)

 

[Antje77]

Im not on insulin because when I was diagnosed they gave me a presciption for tablets and said on your way. These have increased recently becasue I called the GP complaining about higher blood sugar readings and they just prescibed me more tablets so I was on 40mg a day, now im on 120mg a day but nothing seems to have changed.

Can it be your GP has missed the little detail of you having T1, and not T2?
Such things can get forgotten.
Type one is usually treated by a hospital team consisting of at least an endocrinologist and a diabetes specialist nurse, and often a dietician and a psychologist are part of the team as well.
Which sounds like something you could use very well. They have experience with newly diagnosed T1's with needlephobia too.

It's not usually treated by GP's, because treating T1 is not part of their education, they learn (at best) to recognise the signs of a possible T1 instead of a T2 and send them on to the specialist.
Having a GP treating T1 is like having your car fixed by the mailman, who happens to know a little about cars.

I do have ketone strips yes, but I dont really know what this is, whenever I do them (rarely) it says 0.1 or 0.

If you go over around 14 and don't drop again, or if you are ill, you can use them to see if you're producing ketones. The combination of high ketones and high blood glucose can cause your blood to go acidic (diabetic ketoacidosis or DKA), which is an acute emergency that needs hospital treatment.
So if you see ketones while having high BG, it's time to call 999 or go to A&E urgently. This is very important!

 

[Andy499]

Can it be your GP has missed the little detail of you having T1, and not T2?
Such things can get forgotten.
Type one is usually treated by a hospital team consisting of at least an endocrinologist and a diabetes specialist nurse, and often a dietician and a psychologist are part of the team as well.
Which sounds like something you could use very well. They have experience with newly diagnosed T1's with needlephobia too.

It's not usually treated by GP's, because treating T1 is not part of their education, they learn (at best) to recognise the signs of a possible T1 instead of a T2 and send them on to the specialist.
Having a GP treating T1 is like having your car fixed by the mailman, who happens to know a little about cars.

If you go over around 14 and don't drop again, or if you are ill, you can use them to see if you're producing ketones. The combination of high ketones and high blood glucose can cause your blood to go acidic (diabetic ketoacidosis or DKA), which is an acute emergency that needs hospital treatment.
So if you see ketones while having high BG, it's time to call 999 or go to A&E urgently. This is very important!

Hi yes, they know I am type one as they are the ones who told me I am. The GP are calling me in January to discuss some blood pressure thing I am doing and for further blood results (I have to go back next week because the lab messed up some of my sample...)

I know about DKA because it happened to me and its how I was diagnosed. I had severe neuropathy in my head for 6 months and was misdiagnosed with "tension headaches", before being rushed to hospital and almost dying.

 

[Rokaab]

Hi yes, they know I am type one as they are the ones who told me I am.

In which case they are giving you entirely the wrong advice at this point.

You need someone who knows about T1 - I really wouldn't want to wait til January at this point, if your pancreas has finally given up producing insulin (a distinct possibility 5 years after LADA diagnosis) you need this sorted out asap before you end up in A&E with DKA again

 

[Andy499]

In which case they are giving you entirely the wrong advice at this point.

You need someone who knows about T1 - I really wouldn't want to wait til January at this point, if your pancreas has finally given up producing insulin (a distinct possibility 5 years after LADA diagnosis) you need this sorted out asap before you end up in A&E with DKA again

I agree with you, but it hasnt stopped, also I cant get appointments at my GP for weeks, so the next appointment wouldnt be until Jan anyway. NHS is in an awful state right now, we all know why.

I have eaten some chicken and my blood sugar has gone down to 11 now from 13.1, so its still going down, so I must be producing something.

Ill be cooking and eating my tea in about an hour, the problem is I cant get it below like 10 before I have to eat again, I wont starve myself.

What should I do about this?