Back from Endo - Glad/Sad/Mad/Confused

Type 2
1

Background - T2 for 15 years, most of which spent in denial. Somewhat controlled on metformin, then met + glyburide. 6/08 - moved across country, high stress, problems, then new doc which also meant all new meds (Actos, Januvia, Glipizide), I go seriously downhill fast.

In December, I begin educating myself and finally take control of my diabetes. I spent a month on nothing but metformin and practically no carbs so I could document my numbers. I discover a trend of ok pp #s and poor fasting #s (whether overnight or day time between means).

In January, I finally switch to an Endo (1st time ever) - she seems to agree with most of my conclusions and prescribes Lantus to get my fasting #s under control, along with Amaryl. I start the Lantus - never touch the Amaryl - and continue very low carb. After a few adjustments (Lantus in am, not pm) and despite the fact that Lantus is not always stable, things are fairly good.

So, in 3 months, it was time for blood work, including C-peptide, which I’d never had. Here’s what
happened in my visit to review the results:

Glad #1 - My A1c went from a whopping 8.9% to 6.1% - what a triumph and I have to say a big THANK YOU to Jenny Ruhl and her book. With all the horrible “medical establishment” advice out there, how wonderful to find something that really works and flies in the face of all the nonsense.

Glad #2 - My cholesterol!!! AND - this is without those awful statins - overall went from 228 to 169, triglycerides from 169 to 65!!!, HDL went unchanged at 49, LDL from 145 to 107. Thank you eggs, meat, veggies.

Sad #1 - I had a C-peptide test for the first time (after I mentioned it to the Endo, she never suggested it). The result was low - 0.5 - and she announced to me that I am now a T1 diabetic. This kind of hit me hard. Is this true? If so, I guess I’ll never know if it was just the normal progression of my T2 or the result of all the horrible meds I was given from the new doc when I moved here - did that burn up my remaining beta cells? OR, was I never a T2 and was really some other type - considering I had gestational diabetes, near normal weight, hypothyroid, and both autoimmune diseases (diabetes & thyroid) run all through my family? Should I insist on a GAD antibodies test? Does it matter at this point?

Sad #2 - I asked her if my C-peptide could change for the better and she said no. Really took the wind out of my sails - it this true? Is it really not possible for it to improve?

By the way, she said, “You can stop taking the Amaryl because you’re T1 now.” I said, that’s ok, I never took it. I felt like saying, wonder how many beta cells have been burned out by that horrible class of drugs! She also told me to continue Metformin, but didn’t explain why and I didn’t ask (was still stunned) - probably about weight. I’m near normal but have struggled with 15 lbs or so since hysterectomy despite low carb and exercise.

Mad - I asked to be switched from Lantus to Levemir and she refused. Why, she said? Weight? Well, I said, that’s a consideration but it’s more about tighter control as the Lantus isn’t always consistent. Then she says, Why would you want to take 2 shots a day when you only need 1 now? I said, that doesn’t matter to me, I want more stability. She said I was doing well and shouldn’t “switch things around.” I’m thinking, IS SHE GETTING A KICK-BACK OR SOMETHING? I should have insisted and am considering contacting her again to insist - what do you think?

Confused #1 - BUN/Creatinine Ratio. It was very high (42) and the range is 8-27. Endo didn’t even mention it - I saw it on my copy of the tests (I now always ask for a copy). She said not to worry, I just needed to drink more water the morning of the blood test. Is this true? I drank a 16 oz bottle on my way to the lab cuz I thought I’d have a urine test. I know dehydration can cause this, but so can high protein diet, or kidney issues. Should I be concerned? Should I insist on further tests? I asked why no urine test and they said it was only needed once a year.

Confused #2 - Rarely is my pp # high - about the only time it gets high is if my overnight fast or daytime fasting # (3 to 4 hours without eating) is high. But she prescribed Novolog for me to take before meals on days when I’m running high OR if I “go to a wedding” and want to eat more carbs. 1 Unit per 15 carbs. Is it me, or is this crazy?? Isn’t this (a) ignoring the fact that stable fasting #s are a bigger problem for me than pp, and (b) encouraging me to eat more carbs? And how do I use it when I’m doing low carb? If the ratio she mentioned is correct - I’d need 1 U per meal. And what about times when my fasting is too high before I eat?

That’s it. Thanks for reading through this - and thanks in advance for any comments / advice.

2

I am not totally sure that the pancreas cannot recover a bit under proper insulin treatment. Why did they let your a1c go to the moon. Same here in Canada they like to see your pancreas dead before insulin treatment. Is switching from type 2 to type 1 like becoming a born again christian?

If you are not insulin resistant 1unit for 15 carbs is a reasonable ratio.

If you A1c is skyhigh then your cholesterol, triglycerides will also be sky high and this is much more likely to occur in a diabetic when eating carbs then when eating fat even bad fat like cheese.

Good idea to take a little bit of insulin before meals. If you fasting is too high before a meal take a little bit more insulin. If weight gain is not an issue then this is fine. It is possibly best to max out your lantus to see if that can control premeal sugars but you can only do so much as you could then possibly go low. which is not a big deal.

3

Cheri,
Maybe you always were a type 1 or type 1 1/2 ?? ; the Lantus seemed to have helped you .Complex diseae , correct ?
Definitely have to know carb counting .15 carbs for 1 u of NovoRapid seems to be the magic number perscribed …finger poking 1/1/2 - 2 hours later will tell if OK for you …I am a pumper and have 4 carb ratios in the 24 hours . , neither of them are 15 …all higher ie breakfast 1 u for 27 carbs .
And you may require a correction bolus if your fasting number is too high …probably should discuss with Endo ; again there is a formula , the Doc will use.
hang in there :slight_smile:

4

You and I may have always been type 1.

5

Congrats on the A1C and cholesterol tests.

Sorry about the C-Peptide, but welcome to the 1.5 Club - many of us were first diagnosed as T2 and later became T1. I understand the sadness, but the mourning will be done soon and you’ll adjust.

Mad - good. Stay mad and stick to your guns. Bring the data to the doctor that shows the lack of stability with Lantus and try to engage her in a reasoned discussion. Focus on bg control, ignore irrelevant issues like weight control.

BUN/Creatinine - huh?

Novolog - This may have been the doctor simply following protocol - “IF T1, THEN prescribe Novolog.” The ratio of 1:15 is that standard starting ratio, typically adjusted up or down as treatment continues. She should also have given you a ‘correction factor’ which is the dosage to give in order to bring a high # down. The usual starting ‘correction factor’ is 1:50, one unit of Novolog per 50 points above desired range. If you have reasonable control without it, don’t use it. If you DO use it - keep close track of your #s starting an hour or two after eating, especially if you have pretty tight control without it. You may be entering the world of low bgs soon. However, taking it before a meal in a small dose MAY also help keep your fasting #'s down. As always, only careful and detailed record keeping will tell.

If you haven’t yet read it, try getting a copy of ‘Think Like A Pancreas’ for some more detailed explanations of insulin dosing, carb counting, carb/insulin ratios and correction factors.

Terry

6

I get really confused about this. In a lot of reports, I have read that after 10+ years of type 2, it is a natural progression to develop a low c-peptide due to beta cell exhaustion. Because of this, they say even if you are insulin dependent, you are still not a type 1.

I have also heard a lot of people talk about having type 2 for 15+ years, now with a low c-peptide being declared a type 1. Wouldn’t that make all type 2s who become insulin dependent a type 1? Does it matter?

I know this is a very complex disease, but I would ask the doctor for antibody tests, just to confirm.

7

You wonder if all type 2 are really type 1 but in the beggining to a lesser degree of pancreas damage. There should not be stereotyping. You should be diagnosed based on how much insulin you are making and how insulin resistant you are. the stereotyping causes many really bad diagnosis and inadequate or useless treatment but is less work for the doctors.

8

Congratulations and thanks for the very kind words!

Some comments on your post:

You may well have had LADA all along with the history of normal weight and other autoimmune issues. LADA is the very slow form of Type 1 and it is often misdiagnosed as Type 2. The good news for you is that with the low C-peptide you can qualify for a pump if you decide you want one. They wont’ give them to people unless C-peptide is very low.

If anything would burn out beta cells it would be high blood sugars rather than the drugs. I haven’t seen any evidence that sulfs burn out cells. It’s the high blood sugars people get while taking those drugs that cause the burn out.

Stick with the metformin as it really does help massively with weight. I went off it even though it wasn’t doing much for my blood sugars and suddenly I was gaining weight with good control and not eating all that much. It also helps lipids.

The BUN/Creatinine ratio can be high if you are low carbing and a bit dehydrated. In the absence of other indicators it isn’t something to stress over. Also, Dr. Bernstein insists low carbing will reverse even significant kidney damage, so keep at it.

If you have low C-peptide, using novolog at meals will improve your fasting blood sugars. Lantus is too slow to do the job and the stress of covering even a low carb meal when you aren’t making much insulin will push up your fasting blood sugar. She’s given you a type 1 insulin/carb ratio. I use 1-2 units per meal myself with a similar ratio. When I low carb without insulin my fasting bg climbs after a few months and I do better with slightly more carbs and insulin. I try to keep my daily insulin use to 3 or 4 units tops.

Dr. Bernstein discusses using insulin with a low carb diet at great length and is worth reading, even if you don’t feel the need (as I don’t) to shoot for his extremely tight targets.

With the exception of the Lantus issue, which is odd, your doctor sounds decent. At least she didn’t scream at you for the LC diet which puts her ahead of quite a few of them.

9

Way to go on the positives of your report! It shows you’ve been really diligent on following your program. I don’t use the drugs you’re talking about so I can’t comment on those, sorry. I can comment on the fact that I’ve gained 6lbs in about 2 weeks since going off Metformin HCL. I was on Glipizide, but stopped that because I am ravenous all the time. Might consider trying Met. again. My boss is on insulin (type 2) and loves it, in fact he prefers it to the pills. Is the Lantus insulin? I know it’s hard but try and focus on the positives, like your hard work paid off with great a1c, etc. Hope you find a protocol you’re comfortable with :slight_smile:

10

Thanks for the reply, Jenny, I really appreciate it.

Haven’t really thought about a pump - probably because I work at home.

I understand about the sulfs - I should have been more clear…they can definitely cause wide swings - at least they did in my case esp. when it perceived a “low” - and the gnawing hunger was horrible.

If you had to choose - metformin or Symlin?

Thanks for reassurance on the kidney thing.

I will try the novolog and will definitely get Berstein’s book - been meaning to; so far I’ve just got his Diet book and a couple other recipe books you recommended.

Cheri

11

Hi Nel -

Yes, I think possibly LADA. Complex - yes! - and ever-changing.

Thanks for the info - I didn’t know about the correction dose until Gerri mentioned it to me - I need to go back to the doc and find out more.

12

Hi Anthony -

Thanks for your posts. I think you are right.

Cheri

13

Hi Terry -

Thanks much for your very thoughtful response.

I am definitely going back to the doc regarding the Levemir vs Lantus, and I will try your suggestions with the Novolog and keep good records to see what happens. I will also proceed with a good deal of caution! I need to talk to her about a correction dose. However, usually my pp only goes high if my fasting was too high - but as you said, maybe the Novolog before meals will help with that.

The BUN/Creatinine ratio test involves the kidneys.

I’ve heard many people mention Think Like a Pancreas - time for me to get it.

Regards,
Cheri

14

Good questions, Mandy and I don’t claim to have the answers.

However, for me, the reason I believe I was always LADA is because of my personal and genetic history, coupled with the fact that I’m now insulin-dependent. It just fits.

15

Hi Irene! Thanks for the “way to go”!!

Yes, Lantus is insulin - long-acting (not taken for meals, taking to ensure good fasting #s). I agree with your boss - would rather take insulin than pills (except for metformin).

Cheri

16

I second pills give you little control and still make you even fatter quicker than insulin.

17

Congratulations on the A1C improvement!!! It shows how diligent you were at following your treatment plan. I work at home, and use a pump and a CGMS :slight_smile:

I prefer the pump over MDI :slight_smile:

18

That’s interesting, Cynthia. Can you tell me a bit about yourself and why you made the pump choice? And how does that work with a CGMS? Are they all one unit?

19

I use a MM 722 with the CGMS

I have hypo-unawareness, and when I am home, no one is here but a few animals. The CGMS has helped in many ways with helping me feel safer when alone. In addition to hypo-unawareness, I am expecting as well. So it helps with the growing of my little ones :slight_smile: Lantus for me only lasted approximately 4 - 6 hours, so I was constantly correcting.

20

I had not heard of “hypo-unawareness” before but I can certainly see why it could be dangerous. Congratulations on expecting - when are you due?

Glad to hear someone else say that Lantus lasted way short of it’s claims - I could feel it leaving my body after about 8.