Type 1 misdiagnosed?

[lcarter]

Hi,

Been a type 1 for 10 years. Very insulin resistant and consultant today wondered why I never get ketones when I'm high. He checked when I was diagnosed in 2009 and apparently my blood was tested for autoimmunity and it was negative.

So they have done my bloods today, a c peptide test to see if my pancreas is stilll producing insulin.

I'm utterly confused.

My levels are sky high pretty much all of the time. I can go to bed with readings at 5mml and dawn phenomenon makes then rise to 18. I can't get them down all below 15.

Fed up and confused! They keep mentioning the pump but evidently my levels are too high for that. I've got the freestyle libre and they have mentioned trying some different insulin.. a higher concentrated one. Also possibly adding metformin into the mix.

Any one have any advice?

I was 26 at diagnosis. Thanks

 

[Bluetit1802]

Are you sure it is the dawn phenomenon causing that huge rise in the morning, and not insufficient insulin?

I don't know of anyone that has such a huge rise due solely to DP.

 

[lcarter]

No, they have decreased my background insulin as it was still happening even when they tried a much higher dose, all that happened then was hypos midway through the day I didn't have a big meal or anything it's really bizarre.

 

[lcarter]

X

 

[MeiChanski]

We can't diagnose you, however I too, find it quite strange. I'm still learning about the GAD test and c-peptide tests etc, because I didn't get those tests when I was diagnosed, experieced a serious case of DKA and I was put on insulin. So I won't be able to comment on that.

However I do know a few T1 diabetics who are to some degree insulin resistant and they too are on huge amounts of insulin, in some cases prescribed metformin. I was wondering about other factors that are making you high, somewhere on the lines of your hormones?
How many different insulin regimes have they suggested to you? I know certain insulins didn't work with my lifestyle and I was running high all the time.

 

[DCUKMod]

Now, I'm not a T1, so I have no experience of this, but my logic would say that surelya pump could help you, because it could be programmed to deliver differing rates thoroughout the night and day, helping (note I say, helping) to keep things from going quite so high.

My colleagues @Jaylee and @urbanracer are on line, but aren't pump users. I'll also tag in @Juicyj and @Mel dCP as they're definitely pumpers and would likely have a view on your situation.

Those numbers can't be helping you feel great.

 

[Jaylee]

Hi @lcarter ,

This is a tricky one. & I can't make a diagnosis.
I would personally start with what the basal insulin prescribed is doing? https://mysugr.com/basal-rate-testing/

Then look at insulin to carb ratios on the bolus. Are you sure you're not underestimating the carbs in the meal you bolus for?

 

[lcarter]

We can't diagnose you, however I too, find it quite strange. I'm still learning about the GAD test and c-peptide tests etc, because I didn't get those tests when I was diagnosed, experieced a serious case of DKA and I was put on insulin. So I won't be able to comment on that.

However I do know a few T1 diabetics who are to some degree insulin resistant and they too are on huge amounts of insulin, in some cases prescribed metformin. I was wondering about other factors that are making you high, somewhere on the lines of your hormones?
How many different insulin regimes have they suggested to you? I know certain insulins didn't work with my lifestyle and I was running high all the time.

Hi, thanks for your reply.

They've mentioned moving me onto Vispa (ignore my spellings!) And another basal which began with T but wasn't Tresiba?! Apparently you take it once a day.

 

[lcarter]

Now, I'm not a T1, so I have no experience of this, but my logic would say that surelya pump could help you, because it could be programmed to deliver differing rates thoroughout the night and day, helping (note I say, helping) to keep things from going quite so high.

My colleagues @Jaylee and @urbanracer are on line, but aren't pump users. I'll also tag in @Juicyj and @Mel dCP as they're definitely pumpers and would likely have a view on your situation.

Those numbers can't be helping you feel great.

Hi, thanks for your reply.

I think it's the criteria that's the problem, he said if my control is poor (which it is) then I'm a risk from DKA if I were to use a pump. I've no idea it totally confused me if I'm honest.

I'm constantly tired

 

[lcarter]

Hi @lcarter ,

This is a tricky one. & I can't make a diagnosis.
I would personally start with what the basal insulin prescribed is doing? https://mysugr.com/basal-rate-testing/

Then look at insulin to carb ratios on the bolus. Are you sure you're not underestimating the carbs in the meal you bolus for?

Hi, thanks for your reply.

I've done this so many times and it always turns out my basal is too high if anything. Thanks though, maybe worth another try.

 

[EllieM]

I've done this so many times and it always turns out my basal is too high if anything. Thanks though, maybe worth another try.

Just a (possibly crazy) thought, but if you're very insulin resistant could that middle of the night dip be the cause of your issue? ie your blood sugar starts to go low, your liver pumps out sugar, and you need extra insulin to cope with the sugar.... What's your insulin to carb ratio and does your blood sugar dip like that every night? Maybe your basal is still too high?

 

[Juicyj]

Hello @lcarter

First thing i’d do is set an alarm for 3am and do a meter test, the libre can be out so I would double check your not actually going low and then getting a liver dump.

Yes a pump would help though as you can change the basal setting at 3am to manage that but you need to confirm it first on a meter.

 

[Mad76]

When i was first diagnosed as type 1 when i left hospital i was put on insulin. However i could not get my readings out of the teens. My consultant then put me on metformin too. The results were immediate for me. Levels dropped straight away. Not sure about the reason for This, im a newbie, just adding my experience of metformin

 

[urbanracer]

Hi @lcarter

Firstly, I don't trust the Libre sensor much for readings above 10mmol. It will usually report higher levels than you actually have so do a finger prick to double check.

I do often get overnight highs but my levels only increase by around 4 to 5 mmol when it happens. Playing around with basal timing may help.

Some basal insulins don't actually work for 24 hrs (whatever the manufacturer claims.) I split my basal dose and take 2 injections per day to get round this. Can you tell us which insulins you are actually using right now? And at what time of day do you inject?

Have you tried a very low (or even zero) carb meal for your evening meal? I noticed that for me, an omelette or something similar often stops the overnight rise.

Was the other insulin beginning with 'T' , Tujeo?

 

[lcarter]

Hi @lcarter

Firstly, I don't trust the Libre sensor much for readings above 10mmol. It will usually report higher levels than you actually have so do a finger prick to double check.

I do often get overnight highs but my levels only increase by around 4 to 5 mmol when it happens. Playing around with basal timing may help.

Some basal insulins don't actually work for 24 hrs (whatever the manufacturer claims.) I split my basal dose and take 2 injections per day to get round this. Can you tell us which insulins you are actually using right now? And at what time of day do you inject?

Have you tried a very low (or even zero) carb meal for your evening meal? I noticed that for me, an omelette or something similar often stops the overnight rise.

Was the other insulin beginning with 'T' , Tujeo?

Yes I think that may be it. I'm currently on novarapid and carb counting, and on leveimer twice daily. I take it upon waking and at bedtime. I wake at 3am most nights naturally and I check on my metre and it's not far off. Thanks all, appreciate all the feedback.

 

[lcarter]

Just a (possibly crazy) thought, but if you're very insulin resistant could that middle of the night dip be the cause of your issue? ie your blood sugar starts to go low, your liver pumps out sugar, and you need extra insulin to cope with the sugar.... What's your insulin to carb ratio and does your blood sugar dip like that every night? Maybe your basal is still too high?

Hmm, interesting. I take 1.5:10g at breakfast, 1:10g at lunch, 2:10g dinner and my correction is ridiculous- its 1 unit to bring me down 1mml and that doesn't always work, sometimes I need 2 units to bring me down 1mml.

 

[KK123]

Hi, thanks for your reply.

I think it's the criteria that's the problem, he said if my control is poor (which it is) then I'm a risk from DKA if I were to use a pump. I've no idea it totally confused me if I'm honest.

I'm constantly tired

Hi there, it really annoys me when they use terms like 'poor' to describe how you are trying to manage your diabetes, to me the use of the word 'poor' implies you're just not trying hard enough! My Mum was a type 1 for over 40 years and no matter what was tried her levels were always all over the place, in the end they gave up and called her 'brittle'. If me or my sisters overheard anyone referring to 'poor control' we would come down on them like a ton of bricks. YOU are clearly doing your best and your numbers are not down to poor control at all but to an insulin/food regime that for a currently unknown reason, is not working. Please don't be despondent, you really are trying hard.

I know your circs are different to mine but when I was diagnosed I lowered my carbs to 10 carbs per meal and experimented as to how much insulin I needed for those carbs, then I worked up to including more carbs, ie 10, then 20, then 30 and so on. I know there are so many variables and I am sure you have been counting carbs for your 10 years but I wonder whether it is worth rebooting as it were? Sometimes our bodies just change as we go along, would you mind telling us your current ratios? x

Edited to add, sorry, just seen your ratios above. I am not an expert on ratios but do yours really denote insulin resistance??????