[lilituc]

So my GP just told me he won't give me Lantus because he thinks there is a dangerous risk of hypoglycemia. That's right, he thinks even half a unit of Lantus is too dangerous. Currently I'm running 115-130 fasting. I thought there was very little risk of hypoglycemia when you're still making insulin (my last c-peptide was 1.0) as long as you don't take more than you need total. Supposedly your pancreas will just decrease the amount of insulin it's making, right?

The problem, though, is that I won't accept those numbers (because I actually get ill when I run higher than 130). Some of the things I'm doing: (1) take insulin and work out before bed so I'm 65-70 before going to bed. Then I wake up at 100-105. (2) eat every 2-3 hours and cover basal with Novolog. (3) eat fewer carbs (70-90 a day). I've been doing this for two weeks now, but I can't keep up this pace anymore. I haven't had any lows under 65 in weeks, either. My housemate has suggested I go buy some R without a prescription, but I'm not sure how that will help.

So what I am curious about - when did you start on a long-acting insulin? How high were your fastings? What was your starting dose? Did anyone start off under 10 units? Did you have any problems with 24 hour hypoglycemia?

[Keezheekoni]

I started on Lantus when it came out. I was on NPH before then... I noticed that you're in Seattle, you don't go to the UWDCC do you? I refuse to go there anymore!

I did have to adjust my Lantus dosages over the course of a couple of years. I did start out taking only 8 units a day. Because of being really ill right now, I'm taking 35 units twice a day. I can't wait until I get my pump... LOL

[lilituc]

Originally Posted by Rikki

I started on Lantus when it came out. I was on NPH before then... I noticed that you're in Seattle, you don't go to the UWDCC do you? I refuse to go there anymore!

No...I sent my paperwork off to them two months ago but didn't hear back. I have an appointment scheduled with a new endo (we just moved here) in a month. They couldn't get me in sooner. It sounds more and more like I wouldn't like the UWDCC now. Have you ever been to the Joslin center?

Originally Posted by Rikki

I did have to adjust my Lantus dosages over the course of a couple of years. I did start out taking only 8 units a day. Because of being really ill right now, I'm taking 35 units twice a day. I can't wait until I get my pump... LOL

I am totally expecting to have to adjust and I feel pretty informed. That's why this is so frustrating that I can't get the Lantus. I just tested at 124. Three weeks ago I would have been 82-85 right now (I eat the same breakfast every day).

I want to get a pump, also! I just got my c-peptide back yesterday so it sounds like my insurance will pay for it now! But I can't apply until January.

[spike]

First of all I've never used Lantus; just Lente, Ultra Lente.

Next, I'm not a T1.5...
BUT...

to answer some questions: I started off on 8U TDD (including Regular). Then i went through the honeymoon phase (no insulin), then I went back on insulin for the rest of my life, in 1979. I can't see why you can't take a small amount of Lantus to slightly reduce your fastings, Lili.

Mary is a 1.5 and she gets insulin 24/7--just not a whole heck of a lot! Her daily basal is around 8U, which is even more units of basal than what I started on in 78.

Bottom line: if you can't get an Rx from the doc, try another doc.

[lilituc]

Originally Posted by spike

First of all I've never used Lantus; just Lente, Ultra Lente.

Next, I'm not a T1.5...
BUT...

to answer some questions: I started off on 8U TDD (including Regular). Then i went through the honeymoon phase (no insulin), then I went back on insulin for the rest of my life, in 1979. I can't see why you can't take a small amount of Lantus to slightly reduce your fastings, Lili.

Thanks, spike. I totally agree with you, but I guess the GP doesn't. Frankly, I think it's probably because he's a GP and not a specialist.

Originally Posted by spike

Mary is a 1.5 and she gets insulin 24/7--just not a whole heck of a lot! Her daily basal is around 8U, which is even more units of basal than what I started on in 78.

That is very encouraging.

Originally Posted by spike

Bottom line: if you can't get an Rx from the doc, try another doc.

I agree with that also, but I'm not sure I will be able to get another one before I see the endo in one month. Also, I think there is a better chance of the endo agreeing with me than another GP.

Anyway, I've decided to give up trying to account for basal through other methods. Maybe a week of much higher numbers will change the GP's mind. One can hope it's worth it.

[Keezheekoni]

Originally Posted by lilituc

No...I sent my paperwork off to them two months ago but didn't hear back. I have an appointment scheduled with a new endo (we just moved here) in a month. They couldn't get me in sooner. It sounds more and more like I wouldn't like the UWDCC now. Have you ever been to the Joslin center?

I've not been to the Joslin center, but have heard good things. I'm on the south end, so I'm going to see a new endo on Monday who's associated with St. Francis Hospital. I hate driving into Seattle, so I avoid it like the plague! LOL I highly *don't* recommend the UWDCC. They've changed their policies and theories in the past year and have become militant about treating their patients like 2 year-olds.

Originally Posted by lilituc

I am totally expecting to have to adjust and I feel pretty informed. That's why this is so frustrating that I can't get the Lantus. I just tested at 124. Three weeks ago I would have been 82-85 right now (I eat the same breakfast every day).

Could the stress of just moving to Seattle be why you are having higher numbers? Maybe once you're into a routine everything will improve? Do you happen to have the weird flu bug that's going around up here? I'm sick now so my numbers are consistently higher than normal and that drives me crazy!!!

Originally Posted by lilituc

I want to get a pump, also! I just got my c-peptide back yesterday so it sounds like my insurance will pay for it now! But I can't apply until January.

You can't apply til January? That sucks! If I had to wait until January, I'd have to pay an extra $500 deductible for my pump. Glad I don't have to do that now! If you need names of any pump friendly endos up there, let me know. Dewey actually referred me to one, but he wasn't available til December... The one I'm now going to was referred to me by one of the pharmacy techs at the pharmacy I go to...she's been on a pump for over 6 years. Anyhow, PM me if you want Dewey's suggested endo.

[blue eyes]

I'm confused, I thought lantus had a low risk of hypoglycaemia? (just b/c it has no peak effect)

I'm still in the honeymoon stage / early stages of type 1, so I take a small dose of lantus (only 3 units). I’ve felt low occasionally, but never had a true low i.e < 4 / 3.5mmol/l (72 - 63) – (I usually feel low under 5-6mmol/l)

My fasting numbers are much lower than your fasting numbers, 4 - 6 mmol/l (72-108), sometimes a bit over 6, except the last few days I've been 9.1, 9.1 (163) and 10.6 (190). I started off at 2 units, when my Dad mentioned the dose hardly seems worth it to the diabetes educator she said some of her patient take 1 unit!
I've been on lantus since 21/10.

[lilituc]

Originally Posted by Rikki

I highly *don't* recommend the UWDCC. They've changed their policies and theories in the past year and have become militant about treating their patients like 2 year-olds.

Ick, no, that doesn't sound like something I'd enjoy.

Originally Posted by Rikki

Could the stress of just moving to Seattle be why you are having higher numbers? Maybe once you're into a routine everything will improve? Do you happen to have the weird flu bug that's going around up here? I'm sick now so my numbers are consistently higher than normal and that drives me crazy!!!

Well, we moved here in September, and this basal thing started two weeks ago, so I don't think it's that. I wasn't stressed out until I got this news from my GP today, LOL! I haven't been sick either. Hope you're feeling better soon.

Originally Posted by Rikki

You can't apply til January? That sucks! If I had to wait until January, I'd have to pay an extra $500 deductible for my pump. Glad I don't have to do that now! If you need names of any pump friendly endos up there, let me know. Dewey actually referred me to one, but he wasn't available til December... The one I'm now going to was referred to me by one of the pharmacy techs at the pharmacy I go to...she's been on a pump for over 6 years. Anyhow, PM me if you want Dewey's suggested endo.

I got referred to one by my GP - he really isn't a bad doctor, he's just not a specialist. I talked to the pump rep about it and she said this endo is really great. Thanks for the offer, though!

[grace girl]

When I started lantus the first time they started me out at 10u, but my bs was really high. But I've read of children taking 1/2u of lantus a day, and from my experience with it I can't see why you couldn't take it.
Now it does have a slight peak, and that peak appears to be stronger in some people than others. (I am one of them) I had to take it differently to avoid hypos....but I personally can't imagine a person going hypo on 1 unit!
I'll repeat the mantra that you've already heard...it's what I heard when I first came to the forum and I personally think it saved my life: You need a new doc!!!!!
Considering what I've been through personally, and some of other people's stories that I've read here, it really amazes me that they give some of these quacks the legal right to write scripts!

[lgvincent]

I was started on NPH from the very beginning of my diagnosis. It was only later that I was given Regular, but I don't remember how much later.

[Funnygrl]

You need basal insulin. Those fasting readings are getting to be too high. I strongly disagree with your doctor here, and would recommend finding a specialist that is more willing to be agressive.

I went on insulin in February, just bolus, and added Lantus in April. The only reason I wasn't on Lantus before was that I wasn't seeing an endo at the time.

I'm beginning to think I am plain old type 1 who had a nice honeymoon, and not 1.5 at all.

[grace girl]

Originally Posted by Funnygrl

I'm beginning to think I am plain old type 1 who had a nice honeymoon, and not 1.5 at all.

You know, the first doc dx'ed me as type 1 four years ago, and it wasn't until this summer that the previous endo that I was seeing announced that it was really type 1.5. The only explanation he could give me for this was my age at onset. (32) I'm starting to strongly dislike this whole 1.5 issue because it's too cloudy and not very clear.
I'm going to see my new endo again next week, and I'm going to ask her about all of this. Maybe it really doesn't matter, but I find the whole thing irritating!

[Funnygrl]

Originally Posted by grace girl

You know, the first doc dx'ed me as type 1 four years ago, and it wasn't until this summer that the previous endo that I was seeing announced that it was really type 1.5. The only explanation he could give me for this was my age at onset. (32) I'm starting to strongly dislike this whole 1.5 issue because it's too cloudy and not very clear.
I'm going to see my new endo again next week, and I'm going to ask her about all of this. Maybe it really doesn't matter, but I find the whole thing irritating!

I was 19 when i was diagnosed, on insulin pretty much right away, and have seen my insulin needs take a steap climb in this past year since diagnosis.

[lilituc]

Originally Posted by blue eyes

I'm confused, I thought lantus had a low risk of hypoglycaemia? (just b/c it has no peak effect)

It has more risk with those who aren't making insulin anymore - I think because it becomes easier to exceed your total basal needs. If you're still making insulin you can take a smaller dose and your pancreas will make up the rest.

Originally Posted by blue eyes

I'm still in the honeymoon stage / early stages of type 1, so I take a small dose of lantus (only 3 units). I’ve felt low occasionally, but never had a true low i.e < 4 / 3.5mmol/l (72 - 63) – (I usually feel low under 5-6mmol/l)

Thanks, this is really encouraging.

[lilituc]

Well, I only made it until about 10 before I broke down and took more insulin. But by then it was too late for today. I feel really awful. I have this thing where if my bg goes above 130, I get physically ill. Fatigue and aching, mainly, and bad. Back before I was on insulin, people with CFIDS (Chronic Fatigue) were telling me that I definitely had it. This went on for years. When I started insulin and got under control, the fatigue and aches went away. So this is why I had been doing all those crazy things to keep my bg down. Today I spent most of the day at or above 130 and it all came right back. I guess once I got out the other end of that horrible tunnel, I have a hard time going back in. Anyway, I learned that I can't stick out a week or 3.5 weeks pretending I don't need basal insulin to satisfy this doctor.

I'm going to take another pass at him tomorrow. I remembered that my old endo was going to put me on Lantus in June but I said I didn't think it was necessary yet. It didn't stick in my mind because I didn't know this would even be a problem! Aargh, why do some insulins have to require a prescription?!