So here's a heart attack for all the good LADAs....

Ian DP

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Keep us up to date with your progress Elaine..... Just trying to help, with difficult upcoming decisions.
 
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Spiker

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Elaine there are also theories of direct toxicity of high BG as well as the theory of a "proportional" immune response as you say. You are also right to say the evidence is not strong.

However if you set aside the discussion of beta cell burnout there are still good reasons for going on insulin. I think you are saying you will see the consultant and do as he or she advises? I'm not going to query that. Best of luck.
 
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smidge

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Hi Elaine!

Glad you've got an appointment with the consultant relatively quickly.

It's certainly true that you will get a few hypos if you go onto basal/bolus - I'm afraid it's inevitable. Hypos are not pleasant but they are manageable - as long as you eat and jab sensibly, you can keep them to occasional occurences. I don't get very many hypos because I eat low-carb and jab small doses - that really helps. The ones I do get are very mild and very easily-treated - I use one individual chocolate to treat them. In fact, I keep a big tub of Celebrations or Heroes in the house - it makes hypos almost a pleasure LOL. I've had a couple of scary night time hypos, but they were still very mild - just scary because it was at night I guess. When I raised my fears of sleeping through hypos with my consultant last time I saw him, he said not to be scared of them - I won't come to any harm from them because my body will correct them. He even put this in a letter to my GP and copied me in - I have to say that I'm not completely reassured by that, but I am somewhat reassured. I haven't seen any stats of people dying from hypos, so maybe the fear is worse than the reality - not sure about that.

If you're lucky, you might get away with just a basal for a while and hypos are really rare on that regime.

Anyway, I'm sure you'll sort it out.

Good luck.

Smidge
 
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elaine77

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Lol I guess u haven't heard of the "dead in bed" syndrome then Smidge hehehe! Now that scares me!

Pretty sure it won't be basal/bolus thingy as he said he thinks I will only need one or two jabs a day maximum. My levels never go above 20mmol no matter what I eat and so I'm obviously still producing something or I would have went into dka by now probably! I accept I will most likely need to go onto insulin but I'm not ready for basal/bonus where I have to inject 5 times a day or something... Now that does frighten the life outta me!
 

paul-1976

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Lol I guess u haven't heard of the "dead in bed" syndrome then Smidge hehehe! Now that scares me!

Pretty sure it won't be basal/bolus thingy as he said he thinks I will only need one or two jabs a day maximum. My levels never go above 20mmol no matter what I eat and so I'm obviously still producing something or I would have went into dka by now probably! I accept I will most likely need to go onto insulin but I'm not ready for basal/bonus where I have to inject 5 times a day or something... Now that does frighten the life outta me!

All the more reason to go onto Basal insulin now and cut the carbs right down-Basal insulin+LCHF diet=1 injection (2 tops) for me and and some others I know.
High carb NHS/DUK diet+leaving insulin therapy to the last minute=MDI most likely (5+ injections a day)
 

smidge

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Lol I guess u haven't heard of the "dead in bed" syndrome then Smidge hehehe! Now that scares me!

Pretty sure it won't be basal/bolus thingy as he said he thinks I will only need one or two jabs a day maximum. My levels never go above 20mmol no matter what I eat and so I'm obviously still producing something or I would have went into dka by now probably! I accept I will most likely need to go onto insulin but I'm not ready for basal/bonus where I have to inject 5 times a day or something... Now that does frighten the life outta me!

LOL. Yes, I spoke to my consultant at length about 'dead in bed' sydrome, because I was starting to really stress about it because my BG can be really unpredictable overnight. He said that it was extremely unlikely to get into difficulties with the small amounts of insulin I use. He then said that there are a very small number of Type 1s whose bodies do not correct low BGs properly but that these are almost always full Type 1s who have had the condition for many years - not LADAs who are still producing insulin. He went on to say something about research and alpha cells, but TBH I wasn't really paying attention by then as I felt he was talking about possible theories rather than facts by that stage. I should note here that I was trying to get a loan CGM for a week to see what my BG was doing overnight and he was making the case for it not being necessary! In any case, I now try to focus on the positives of hypos i.e. the tin of Heroes, rather than the negatives i.e. the risk of death!

Seriously, I don't have the stats to do any kind of meaningful risk assessment on it - I wish I did. I seem to remember Phoenix finding and posting some stats a while ago to a similar question, but they weren't recent stats and would have probably involved older insulins and limited access to testing facillities.

It does feel scary sometimes, but high BGs causes certain serious damage while insulin is only a potential and unquantifiable (by me) risk. So I go with the risk rather than the certainty.

Maybe you should discuss your fears with your consultant when you see him/her and see what their view is. I think you'll be very safe on basal-only though.

Smidge
 
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LucySW

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LOL. Yes, I spoke to my consultant at length about 'dead in bed' sydrome, because I was starting to really stress about it because my BG can be really unpredictable overnight. He said that it was extremely unlikely to get into difficulties with the small amounts of insulin I use. He then said that there are a very small number of Type 1s whose bodies do not correct low BGs properly but that these are almost always full Type 1s who have had the condition for many years - not LADAs who are still producing insulin. He went on to say something about research and alpha cells, but TBH I wasn't really paying attention by then as I felt he was talking about possible theories rather than facts by that stage. I should note here that I was trying to get a loan CGM for a week to see what my BG was doing overnight and he was making the case for it not being necessary! In any case, I now try to focus on the positives of hypos i.e. the tin of Heroes, rather than the negatives i.e. the risk of death!

Seriously, I don't have the stats to do any kind of meaningful risk assessment on it - I wish I did. I seem to remember Phoenix finding and posting some stats a while ago to a similar question, but they weren't recent stats and would have probably involved older insulins and limited access to testing facillities.

It does feel scary sometimes, but high BGs causes certain serious damage while insulin is only a potential and unquantifiable (by me) risk. So I go with the risk rather than the certainty.

Maybe you should discuss your fears with your consultant when you see him/her and see what their view is. I think you'll be very safe on basal-only though.

Smidge

Thanks Smidge. That's a very useful explanation, speaking as another early LADA.
 
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elaine77

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Well I have been to see my consultant and, as expected, the insulin has arrived. 18 units of mixed insulin (humulin?) 9 in morning and 9 in evening.... Just concocting my complaint to the DVLA now regarding sulfonylurea users to try and establish some equality up in here!

PS.- I haven't actually got the courage up to inject it yet..... But I'm working on it....
 
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-Artemis-

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Well I have been to see my consultant and, as expected, the insulin has arrived. 18 units of mixed insulin (humulin?) 9 in morning and 9 in evening.... Just concocting my complaint to the DVLA now regarding sulfonylurea users to try and establish some equality up in here!

PS.- I haven't actually got the courage up to inject it yet..... But I'm working on it....

... Did they just give it to you to take home...? Didn't they get you to do your first injection with them...? That's what happened to me, so I assumed everyone...

Anyway - more importantly - have you taken it yet? :)


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elaine77

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I've taken it, it's not making much of a diff to my levels tho at all so I think they will increase it. They gave me the pen and showed me how to use it but I had to wait for a prescription from my local surgery to get the cartridges and needles, they didn't get me to inject myself whilst there, they got me to inject into this little foam panda thingy and it wasn't insulin it was just a water cartridge for examples...
 
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-Artemis-

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.... it can take a while for your levels to settle down - did with me... well done for getting past the first hurdle x
 

elaine77

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Insulin has been increased from 9units twice a day to 13 units twice a day and levels are still not really coming down...didn't realise how bad it was, can't believe the DSN left me on Metformin for so long when I'm still sitting at 15mmol even though I'm taking over 20units of insulin a day!
 

Ian DP

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Hi Elaine
Are you still low carbing? Or have you increase your carbs?.... Could this be why your insulin is higher that expected?... Just wondering.

Good to hear you seem to be settling into the insulin routine.
 

elaine77

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I was never low carbing as such, just low GI carbing really so no different to what I was doing before I started the insulin..
 
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colsan

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Hi Elaine, I've just recently been diagnosed as LADA after going into DKA. Was previously diagnosed T2/MODY...my levels had been rising for a while, increased metformin to 2 x twice daily. However, made no difference to HBA1C which was retested few days before admission to hospital. Like yourself I was started on low doses of insulin basal and bolus but still having BG of up to 27mmol. Therefore was started back on metformin and basal increased to 30 units daily and bolus at a ratio of 2.5 to 10 grams of carbs....my levels have came right down. I know this sounds like a massive dose but it's keeping me alive and from going into DKA again. Maybe your doses need to be increased. I don't want to frighten you, but it's less than 4 weeks ago that it happened to me, previous to that I hadn't even heard of DKA. I didn't test my blood or ketones as I was supposedly T2/Mody. I guess what I'm saying is, take what is needed, your BG doesn't even need to be massively high to go into DKA....the second time it happened to me (2 hospital admissions in one week) my BG was just over 13 mmol! Good luck with it - it really isn't as bad as going into DKA and being told that your life was seriously at risk.
 
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elaine77

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I'm on a mixed insulin regime, not basal/bolus, and it has been increased once already and she is calling me today so may increase it again. I have ketostix so I check for ketones every so often it's just frustrating that it seems like a lot of insulin with no change but maybe 26 units a day really isn't a lot compared to people on the basal/bolus regime..
 

Alanp35

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Hi Elaine
My meter only advises that ketones need to be checked when BGs are 17 or above. It flashes on the screen. So far I have been fine for ketones.
I have 50 units of humalogmix25 at breakfast and 22 units at evening meal. It took many months to get to this level which is currently working very well for me. We are all different though, and for each one of us our diabetes is different. LCHF helped me enormously.
 

elaine77

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It's now been increased to 17 before breakfast and 17 before evening meal... Let's see if this brings it down. Saw my lowest level in months today at 7.2 mmol but it was only achieved because I didn't have time for lunch so it wouldn't have been that low had I ate anything :-(
 
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