Hello - newbie here :)

[stephknits]

I had an interesting conversation at Guy's last week with the diabeted research team there. They said they do not differentiate Type 1s now and don't diagnose LADA, you would be Type 1 and treated as such. They say there are so many variables in how quickly or not you destroy your beta cells, that these labels aren't helpful. Most adults they found tend to take time to destroy all their cells, hence the trial I was on for adults diagnosed up to 4 years ago which was looking at stopping you destroying any more cells. After 2 years I certainly still had some insulin production.
I would certainly want to look to do on insulin myself, thereby giving any remaining cells a break and the best chance of hanging around.

 

[Lauren95]

Hi and welcome to the club that no-one wants to join.

Just thought I'd mention that it's a fallacy that T2s have brought it on themselves, despite what the media say. I'm a T2, diagnosed last December at 43, not-overweight, exercise regularly (currently training for a 10k) and have always eaten healthily (never stepped foot in a McDonalds in my life). It's much more common to be a healthy T2 than is often stated.

Hi Bob! I absolutely didn't mean to imply that you've brought it upon yourself, so I'm terribly sorry! I know there are many type 2s that are of health weight and lifestyle, and also genetic types of type 2 like MODYs. I just meant that these are the standard "risk factors" Drs check for, and that, whilst possible to get type 2 and fit none of them, it may increase the risk of developing it /developing it sooner! 🙂

 

[Lauren95]

I had an interesting conversation at Guy's last week with the diabeted research team there. They said they do not differentiate Type 1s now and don't diagnose LADA, you would be Type 1 and treated as such. They say there are so many variables in how quickly or not you destroy your beta cells, that these labels aren't helpful. Most adults they found tend to take time to destroy all their cells, hence the trial I was on for adults diagnosed up to 4 years ago which was looking at stopping you destroying any more cells. After 2 years I certainly still had some insulin production.
I would certainly want to look to do on insulin myself, thereby giving any remaining cells a break and the best chance of hanging around.

Hello Steph 🙂
I've actually read about that trial, and emailed them to find out more - if I could save my remaining beta cells that would be awesome, so I'm waiting for their response. Did ypu participate in the trial? If so how have you found it? Also that does make quite a lot of sense as I suppose eventually I'll end up exactly the same as every other type 1, I'm just a bit slower for now 😛 I was in for yet another (sigh, I feel like a pin cushion) blood test this afternoon as one of my liver test levels have been consistently just slightly high so they want to investigate, anyway, I asked the gp about gliclazide v insulin and she said there are differing opinions about this, and it's more personal preference for now as there's no solid evidence that overproduction of insulin by my remaining beta cells increases rate of their degeneration. So I guess it's gliclazide for me for now anyway. However yesterday when I took it, it was actually in the afternoon ish and they want me to wait a day today and start tomorrow morning, even though I've reached a new personal record and got blood glucose of 27.5, which is making me feel aweful and headachey, extremely thirsty to the point that I've gone through three water bottles in the last hour and a half, and generally feel as if someone has drop kicked me off a tall building into busy traffic. Gp gave me codeine and ibuprofen for the headache and general malaise, but it hasn't really helped yet. Maybe hasn't kicked in or something, but does anyone have any advice on how to ease symptoms? My ketones are still only 0.1 so no real danger. But I feel like c**p and am having trouble revising and exams are on Monday, so any suggestions would be great

Ps sorry I turned my reply into a general rant Steph 😛

 

[stephknits]

If it were me, I would get myself an appointment quickly and get on insulin with numbers like that. I was on Gliclizide for 3 weeks and for me it didn't work, I can't tell you how much better I felt on insulin. I would also see about being referred to the diabetes specialists at your local hospital maybe? I would also keep an eye on those ketones.

The study was the Multipeptide one at guys and Thomas's. It was really worthwhile being involved as the care I received during the trial was amazing, even if I find out I was not actually on the drug (won't know til the end of the trial). I know that they have been busy with enquiries after the trial went on tele, but it is worth going on if you fit the bill.

 

[HOBIE]

Welcome Lauren95 🙂

 

[Northerner]

I agree with steph, Lauren - that is way too high and indicates a significant lack of insulin coming from your pancreas. Injecting insulin is a bit of a crude form of insulin delivery compared to a fully-functioning pancreas, but it's a lot more flexible than gliclizide from what I have read of other people's experiences. How are you measuring ketones, do you have a blood ketone meter?

 

[TheClockworkDodo]

If it were me, I would get myself an appointment quickly and get on insulin with numbers like that. I was on Gliclizide for 3 weeks and for me it didn't work, I can't tell you how much better I felt on insulin. I would also see about being referred to the diabetes specialists at your local hospital maybe?

I third that! I'd definitely be trying to see a diabetes specialist at a hospital with a reading like that, and asking them for insulin.

In the short term, Anadin Extra might be better for the headaches, if codeine doesn't work for you (it does nothing at all for me - I might as well eat smarties) - something about the combination of caffeine with aspirin and paracetamol is good for migraine-type headaches, apparently. But obviously you'd have to wait until the other painkillers are out of your system before trying that. And keep drinking the water, that will lower your sugar level.

 

[Helen Sanders]

Hi I'm newly diagnosed with type 2 bordering on type 1 and not having a good time of it at the moment. Please tell me there are others in my situation?? xx

 

[Northerner]

Hi I'm newly diagnosed with type 2 bordering on type 1 and not having a good time of it at the moment. Please tell me there are others in my situation?? xx

Hi Helen, welcome to the forum 🙂 Not quite sure I understand that - how has your diagnosis come about? Is it that they have provisionally diagnosed you as Type 2 but suspect you might really be Type 1?

 

[Lauren95]

I agree with steph, Lauren - that is way too high and indicates a significant lack of insulin coming from your pancreas. Injecting insulin is a bit of a crude form of insulin delivery compared to a fully-functioning pancreas, but it's a lot more flexible than gliclizide from what I have read of other people's experiences. How are you measuring ketones, do you have a blood ketone meter?

Hi again, with regards to ketones, they gave me a meter that can measure both - blue strips for glucose, purple for ketones. Anytime my glucose goes above 15 I check my ketones but so far never above 0.1, which is nice if not slightly confusing when I see how high I'm getting on glucose. The gliclazide did actually work really well yesterday, as I got down to 5.3 today right before I had lunch (I know skipping breakfast is bad but I was busy :/ ) maybe it's just the fact that my levels are jumping around so much that's making me feel ill? I do appear to still be making insulin though, as I just had dinner and my predinner levels were 12 which is a tad higher than I think I'd want, but as far as I can tell not too bad. I can't tell if that was actually me making enough insulin or if it was due to me downing what I'd estimate to be my own body weight in water and peeing every 15 minutes for a few hours 😛 remember I'm not on gliclizide today as they wanted me to wait a day and restart tomorrow so I can take them in the mornings from now on. Also it hasn't been 2 hours since I had dinner yet so I haven't measured to see if they'll spike again this time.

As for the diabetes nurse, I saw one when I was in the hospital on Wednesday to get my results (from the antibodies test) and I phoned her this morning on advice from my gp and that was when she said to wait today and start gliclazide again tomorrow and then we scheduled a phone appointment to see how it's working on Tuesday. Though that phone call was before I had lunch so maybe she didn't anticipate my spiking so much today? The gp I saw today said I should consider going to a&e if my glucose goes that high again - regardless of if my ketones are still low, as they can decide better or give me different doses of things I guess? I've never actually been to an a&e so that'll be a new experience.

Sorry for the long and rambley answer, I'm a bit spacey today, can't tell if it's from the sugar or codeine or exam stress! And I jist want to say too thank you all for answering all my concerns and queries, I'm really really grateful!! 🙂

P.s. Does anyone know what the maximum safe level of water is to drink? I don't want to accidentally push myself to the other end of the spectrum and over water myself, I don't even know if that is a thing, but I think these past few days I've drunk more than I have in my entire life!

 

[Cowboy Bob]

Hi Bob! I absolutely didn't mean to imply that you've brought it upon yourself, so I'm terribly sorry! I know there are many type 2s that are of health weight and lifestyle, and also genetic types of type 2 like MODYs. I just meant that these are the standard "risk factors" Drs check for, and that, whilst possible to get type 2 and fit none of them, it may increase the risk of developing it /developing it sooner! 🙂

Sorry, didn't mean to imply you were Just a bit oversensitive, because when you tell people you're type 2 (which I've been doing a lot in the past few months) they instantly assume it's because you've had a bad diet/sedentary lifestyle, as that's what the media tells them.

 

[Northerner]

It can be dangerous to drink too much water as it can deplete your body of sodium, although I do think it needs to be an awful lot of water in a short amount of time:

http://www.webmd.boots.com/healthy-eating/features/drink-too-much-water

It does sound like the gliclizide works for you - such a tricky time! Hope it all gets resolved for you soon, really not a good time to have to deal with all this. Wildly swinging levels will certainly make you feel pretty bad

 

[Helen Sanders]

Hi Helen, welcome to the forum 🙂 Not quite sure I understand that - how has your diagnosis come about? Is it that they have provisionally diagnosed you as Type 2 but suspect you might really be Type 1?

They have diagnosed me as type two but say im extremely close to being diagnosed as type 1. im having a really rotten time at the moment with medication etc and dont seem to be getting any help, explanations or even a sympathetic ear to bend as this is all come out of the blue for me xx

 

[Helen Sanders]

see above sorry i posted it in the wrong bit ooopppsie xx

 

[Northerner]

They have diagnosed me as type two but say im extremely close to being diagnosed as type 1. im having a really rotten time at the moment with medication etc and dont seem to be getting any help, explanations or even a sympathetic ear to bend as this is all come out of the blue for me xx

It does sound like they mean you are likely to be a slow-onset Type 1, which can be mistaken for Type 2 in the early stages. What medication are you on?

 

[Martin Canty]

Hi Lauren, welcome to the group....

Being a humble T2 (well not so humble) I don't have any experience of LADA, however, I do have some on use of sulfonylureas & diet....

While on glyburide I used to suffer constant hypos.... One memorable event was (by chance) happening upon a diabetes awareness walk while going into the most severe hypo I ever measured (2.2), talk about irony.... The problems were so severe that I was almost afraid to do any activity that would take me away from the support of my home, office or car (I'm an avid hiker & at that point I was spending 2 months in Missouri for work). Looking for a solution I found the LCHF (Low Carb High Fat) way of eating; within days of starting LCHF I quit the Glyburide. IMHO I was prescribed this medication way too early in my life as a newly minted diabetic.

Now to the diet part, I have never been one to eat on a regular schedule, the first 9 months after diagnosis just about killed me trying to balance reducing carbs and eating 4-5 times a day!!! Embracing LCHF allows me to eat on my schedule, typically a snack at lunchtime (perhaps some deli meat & cheese) & a main meal in the evening. Carb intake is about 20g per day, sometimes much lower. The key is that one eats as much as they want while still maintaining a ratio of carbs/protein/fat for the day. For meal ideas & general information about LCHF there are some great resources on the web, one in particular is http://www.ruled.me/
I have noticed that people are getting concerned about Ketones in their blood..... Nutritional Ketosis is a normal condition & should not be confused with DKA (bad juju)