Erratic BG Levels! Advice please

IZ THE LEG END

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@IZ THE LEG END - LADA is essentially late onset Type 1 diabetes. It is caused by an Autoimmune response. Giving a LADA any kind of insulinogenic drug will speed the destruction of the beta cells due to the way in which the autoimmune system latches on to insulin production to attack them.

You are far better off either going very low carb to reduce insulin production and therefore reduce the autoimmune response or to start taking insulin, which will alleviate your body having to produce insulin, and again protect beta cells. You should only need very small amounts if caught early enough, but you should be given both basal (Levemir) and Bolus (quick acting insulin as described above) to properly protect you.

You should also get yourself to a diabetic clinic with a proper Diabetic Consultant rather than a GP, as a Diabetic Specialist GP is not going to understand how to properly treat LADA.

@tim2000 thanks for the reply, I'm actually very lucky with respect to my GP as he is one of hulls best diabetic specialists, I've been avoiding the insulin but only for the purpose of not telling work I'm due away on the 28/29th for 1 month then I am going to let them know when I get back.

Since finding out my diagnosis I've cut down on carbs etc but the festive period approaching there's going to be a few temptations around I'm sure.

I will bring up the bolus on my return to the uk in January with the nurse it's not something she discussed as far as I was aware insulin was insulin hahaha... Every day's a school day at the minute.
 
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tim2000s

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Dear Tim,

I have other autoimmune issues and wonder if Type 2s ought get retested for LADA if they have other autoimmune issues. I have noticed some of the erratic issues on blood sugars after going off Byetta and wonder if this means anything. My waking bloodsugars are 25-60 points higher on the American scale

WHAT is an insulinogenic drug like you talk about in your first paragraph? I also don't know what you mean by consultants versus diabetic specialists? Here in Washington DC we have endocrinologists and diabetic nuitritionists, the latter of which are not oriented toward low carb high fat.
Hi Galja, in the UK, our GPs typically have a Diabetic Specialist who is responsible of managing the targets for Diabetic patients. They are not necessarily a diabetic expert. This is what I meant by a Diabetic Specialist GP. The Diabetic Consultants may be Endocrinologists - that's probably the best parallel to draw between the two systems. Very few health care p[rofessionals are oriented towards a Low Carb Higher Fat diet as there is not yet enough of a body of evidence to challenge the entrenched view. This is starting to turn around.

Insulinogenic drugs are those which encourage insulin production, specifically Secretagogues (sulfonylureas and Glinides) and Incretin based treatments (DPP-4 inhibitors and GLP-1 Analogues, like Byetta).

If you are concerned that you may have been misdiagnosed, you should look to have GAD test and a C-Peptide test. The two together should give you more direction.
 
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Mep

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I have noticed some of the erratic issues on blood sugars after going off Byetta and wonder if this means anything. My waking bloodsugars are 25-60 points higher on the American scale.

I'm type 2 myself and I have beta cell damage which means I have insufficient insulin being produced. Maybe you have the same? Have you asked for the GAD and C-peptide tests to be redone? The c-peptide in particular will show if you're producing sufficient insulin or not. The type 2 oral meds and injectables such as byetta wouldn't help you if that is the case. I'm on full time insulin therapy now, but I'm definitely still type 2 because I don't produce antibodies. :)
 
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cz_dave

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@IZ THE LEG END - LADA is essentially late onset Type 1 diabetes. It is caused by an Autoimmune response. Giving a LADA any kind of insulinogenic drug will speed the destruction of the beta cells due to the way in which the autoimmune system latches on to insulin production to attack them.

You are far better off either going very low carb to reduce insulin production and therefore reduce the autoimmune response or to start taking insulin, which will alleviate your body having to produce insulin, and again protect beta cells. You should only need very small amounts if caught early enough, but you should be given both basal (Levemir) and Bolus (quick acting insulin as described above) to properly protect you.

You should also get yourself to a diabetic clinic with a proper Diabetic Consultant rather than a GP, as a Diabetic Specialist GP is not going to understand how to properly treat LADA.
So true. I can only say how lucky I was to be started on insulin quite early. In fact on the day of my diagnosis as T1 (LADA), my endo told me I have to start taking insulin the next day.

I kind of hesitated as I did not feel bad at all and my A1c was 40, so still in the norm. Plus I was just about to go for a business trip to Japan. I asked whether I could wait until I am back. He said no way, you must start tomorrow.
 
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IZ THE LEG END

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My bloods don't seem to be coming back down last night my bloods reached 28.9...

I felt like an aching feeling in the tops of my thighs and with my bloods being as bad as they have I checked my levels to my horror... I just kept on checking washing my hands and checking but I didn't feel unwell or anything what symptoms am I expecting with high BG? I spent most of the night running back and forth to the toilet and was very thirsty so tried topping up my fluids with water... Woke this morning to 15... I've doubled my gliclazide again to max dose 320mg daily and booked an appointment at the docs...

The insulin I was given should I be using this when my sugars are this high (Levemir)

Also what are the symptoms of high BG? I understand how I feel for low BG Just not sure how I should feel for HI.

What should my bloods be maximum 2 hours after eating even a high carb meal? Is it 9 mmol?

Thanks in advance
 

azure

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@IZ THE LEG END 28.9 is high. You did the right thing retesting to check it was a correct reading.

When I was diagnosed with Type 1 my level was approximately 25. I felt 'weird' in my head and like I had a cold coming or something. I was very, very thirsty and constantly going to the toilet. I also felt weak and 'droopy'. When the Dr said I had to go to hospital immediately I was quite shocked as I didn't feel that ill, but he'd found ketones.

At least your blood sugar has come down to 15, but you do need to see or speak to someone as soon as you can - especially with. Christmas coming up.

When is your appointment?
 
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IZ THE LEG END

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@azure my appointment is in 30mins so should be good. I have LADA so my BG levels may be due to my actual "condition" (not sure that's the right word to use hahaha)

My concern is that I am away to Saudi on the 29th for 1 month so I need to have a handle on this before I head off
 
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azure

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Oh, yes - you definitely want it sorted before you go! you don't want to be worrying all the time there.

I have an insulin pump, so don't use long acting insulin now, but it could well be your insulin needs adjusting, or some kind of change or addition is needed. There's no magic right answer for everyone - just what helps you personally keep your blood sugar levels within range.

I hope it's quickly sorted. Do update us if you can.

All the best,

Azure
 
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IZ THE LEG END

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I haven't actually started on insulin yet I was given it last week as a precaution for me travelling and advised to increase my gliclazide to 320mg from 160mg daily I think I may need insulin a pump is not an option for me as I cannot use this on offshore installations due to explosion hazard areas.

The insulin I was prescribed was basal insulin not sure whether I would require both basal and bolus so we will see what the doctor says today he must be getting fed up of seeing me recently haha...

Thanks again for the advice and support its much appreciated
 
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azure

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Ah, ok. Yes, check with the doctor, but it's sensible to have a supply if you're going away so that you have options :) Better to have it and not have to use it, than not have it and need it.
 
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Mep

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Goodness going as high as 28 and dropping to 15... you're not anywhere near normal range at those levels. I hope your doc puts you on full time insulin therapy (the basal & bolus insulins) before you leave for Saudi. It would be too much for you to be away for a month without being able to manage your sugar levels. Being that high would give you quite a few symptoms and will probably affect your ability to do your work as well. Also make sure you have a well stocked hypo kit with you as I found when I first started insulin I was getting more hypos. Your doc may say it's a good idea to carry a glycogen pen also. Mine didn't, but I think they only do that when you aren't managing your hypos too well. I wish you the best.
 
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cz_dave

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@azure my appointment is in 30mins so should be good. I have LADA so my BG levels may be due to my actual "condition" (not sure that's the right word to use hahaha)

My concern is that I am away to Saudi on the 29th for 1 month so I need to have a handle on this before I head off
Make sure you also get a fast-acting insulin such as NovoRapid. Good luck!
 
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IZ THE LEG END

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@Mep @cz_dave good advice thank you, the doctor has prescribed me glucogen to carry I've also put a case of lucozade in the car as a precaution so we shall see how things go but thanks again for the advice

The doctor started me on my basal insulin at 6 units am and 6 units pm I was mega surprised how much it brought my levels down they still weren't in range am so increased to 8 and 8 units... He has kept me on gliclazide as he believes this will give me my bolus insulin required I'm still seeing a few spikes during the day so I will book an appointment on Monday to discuss these and hopefully he will give me bolus so I can take this away before I head to Saudi but yea I didn't think I would be relieved to use insulin but I am more than anything...

Thanks for the help guys been a great help and that goes for those not mentioned either thank you hope you all had a good Christmas and hope you all have a great new year thank you
 
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Mep

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@Mep @cz_dave good advice thank you, the doctor has prescribed me glucogen to carry I've also put a case of lucozade in the car as a precaution so we shall see how things go but thanks again for the advice

The doctor started me on my basal insulin at 6 units am and 6 units pm I was mega surprised how much it brought my levels down they still weren't in range am so increased to 8 and 8 units... He has kept me on gliclazide as he believes this will give me my bolus insulin required I'm still seeing a few spikes during the day so I will book an appointment on Monday to discuss these and hopefully he will give me bolus so I can take this away before I head to Saudi but yea I didn't think I would be relieved to use insulin but I am more than anything...

Thanks for the help guys been a great help and that goes for those not mentioned either thank you hope you all had a good Christmas and hope you all have a great new year thank you

You're welcome :) Has your doc done the GAD & c-peptide tests as yet? It would be a worry that he has you on gliclazide if you don't have your own insulin or insufficient insulin production. This drug is designed to stress your pancreas to produce more insulin. I guess if you have your own insulin it would be ok. But hopefully you get the results of the tests and you get put on the correct treatment. It sounds like your treatment isn't right still. Yes, good idea to increase basal to help, although it will be hard to control your sugar peaks from meals with that. Hopefully you get the bolus insulin before you go away. Yeh I've learnt to have quick acting carbs everywhere I need it... at work, in the car, by my bed side, etc. Also make sure you have long acting carbs handy too like muesli bars, etc... they're needed after the quick acting ones if you're not near a meal time.
 

LucySW

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Good luck hopefully all works well for you...

Since this my BG has rocketed my fasting BG IS AROUND 14-15 and anywhere upto 26. I went back to the docs and they have doubled my gliclazide to 160mg daily and I have the option to double again to 320mg daily but they also given me insulin now to carry as a precaution due to my work taking me around the world at short notice.

I have been on the 160mg daily for a week tomorrow still with high BG so if still high by Wednesday I will double to 320mg daily as my GP recommended hopefully don't need to use the insulin... Interesting times
Honestly, these levels won't do. Have you examined what it is you fear in using insulin? (I was very reluctant to use it early in my LADA diagnosis, because I associated it with hypoglycaemic coma, getting fat and generally losing control in my life, which I crave. It turned out insulin didn't cause any of those things, in fact it gave me back control. In my case, all were unreal fears.)

Insulin is the only thing that will get your levels down. If it scares you, limit your doses, which you can do if you keep your carb intake low. Also exercise, which will increase your insulin sensitivity, so keep your needs lower.

Insulin saved me. Thanks to it, I generally (not this Christmas) keep my BG levels between 4 and 6. As a result, I feel well and am getting even weller. When I let my levels creep up, I feel awful. I intend to remain well all my life.

Also, as a LADA, it is really, really worthwhile working hard to extend your honeymoon. If you do, you may avoid developing full-blown Type 1. Why that is terrific is because then you may never get the ghastly erratic up-and-down BG and hypo worries that so many have to live with. They are horrible. I have every intention of working as hard as I can to keep my honeymoon going. It means I sleep at night without fear of hypos and I know that my body will cope. You'll lose that if you knacker your pancreas now, which is what insulin-stimulating drugs do. You have a great deal to lose.

Please read the Dr Bernstein book, which may change your future life. Current clinical orthodoxy is out of date and not properly informed. It harms people.

I agree with @tim2000s, who said somewhere that doctors who encourage their LADA patients to wipe out their beta cells are morally guilty of negligence.

Also, head on over to the LADA forum, where you'll find many stories relevant to you.
 
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LucySW

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Have now read up to date. Basal isn't enough. It will be post-meal spikes that are driving your BGs up. You need Novorapid or similar, and to inject it 30 mins before eating. DON'T LISTEN when they tell you 15 mins is enough. Those of us who have used a Libre tend to find it takes 30-35 mins to start to take effect.

Here, for what it's worth, is my story in similar circs.

http://www.diabetes.co.uk/forum/threads/ladas-preserving-their-beta-cells.62177/

See esp post # 50, which sums up what happened to me.

Also: http://www.diabetes.co.uk/forum/threads/an-older-and-wiser-new-lada.70099/
 
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IZ THE LEG END

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Have now read up to date. Basal isn't enough. It will be post-meal spikes that are driving your BGs up. You need Novorapid or similar, and to inject it 30 mins before eating. DON'T LISTEN when they tell you 15 mins is enough. Those of us who have used a Libre tend to find it takes 30-35 mins to start to take effect.

Here, for what it's worth, is my story in similar circs.

http://www.diabetes.co.uk/forum/threads/ladas-preserving-their-beta-cells.62177/

See esp post # 50, which sums up what happened to me.

Also: http://www.diabetes.co.uk/forum/threads/an-older-and-wiser-new-lada.70099/

@LucySW WOW, you have been on a journey! And thanks for sharing it.

Firstly apologies as I haven't replied for a couple of days I've now headed offshore to Saudi for work for a month.

In your first post you mentioned what I feared, for me the biggest fear is my work and not being able to carry out my job that I not only love but in times we have today need. Secondly it's a control thing, I have never been ill, never relied on someone/something, never needed medical assistance and always been a healthy lad.

You mentioned it in your thread WRT how a diabetic goes through the motions from being diagnosed to being under control and the emotions and stages we go through and I related to 99% of the points you mentioned.

I wasn't happy when I first was diagnosed, I didn't want to believe it and I thought if I ate well and got back training that I would kick its butt so to speak!

Obviously disillusioned I found that the tablets were my next stage of the coming to terms, I tried metformin inc. SR They didn't agree. Then came sitagliptin and gliclazide I seemed to be good for around 2 months again I made the mistake of believing I could beat it with tablets and diet.

Last 2 weeks have been a roller coaster funny thing is other than needing the toilet during the night and being sleepy o never noticed my blood sugars rising until I tested, the final straw was 23rd and on 3 attempts of washing my hands my meter read HI...

And I hate to admit it but since starting the insulin I feel a million dollars to what I did a week ago yea my levels are not great still but I see great progress both visually on the meter and physically/mentally in myself

I'm increasing my basal 2 units every 2 days as instructed currently on 8 am and 8 pm. I should up these tonight to 10 but I noticed a drop this morning and I don't want to overshoot!

I'm still taking the oral meds my bloods are now not been any higher than 15 during the day +2hrs after eating. Not great but worlds apart from a week ago. I'm making small adjustments with my diet too.

I am not home from Saudi until 26th Jan but when I'm home I'm going to ask to be moved to bolus and come away from the oral meds. Not ideal but I cannot do anything about this until my return

I wouldn't say I'm comfortable with the idea but I am coming around to the idea hopefully this way I can control the spikes as do you...

But you guys are right I don't know what I was so worried about thanks again for everyone's help and support and Lucy thank you for sharing your info and posts amazing hopefully I can achieve your levels.

Thanks again everyone

Izzy
 

cz_dave

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448
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Type 1
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Insulin
Thanks for providing a follow-up, it's great your BG heads in the right direction. All the best in Saudi.
 

LucySW

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1,945
Type of diabetes
LADA
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Insulin
Yes, take care. I would pace increasing your basal, as it often takes three days for it to have an effect.

Keep drinking lots of water. You probably aren't at risk of getting DKA, but if I were you I'd look it up and familiarise yourself with it, so you knew what to do if it happened (which is probably unlikely).

Good luck in Saudi. All the best, Lucy
 
Messages
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Type of diabetes
LADA
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Hi. I have finally been diagnosed as a LADA as oral meds were wearing off in terms of their impact on bs's. I am now taking insulin and the relief to finally eat more flexibly and literally replace what my body can't make with an injection is immense..
I was v happy to take back my meds and inject.
Not looking back!
 
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