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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Monday, November 12, 2007

Byetta and Type 1 Diabetes?

I'm just not sure what to think.

When that happens (being not sure what to think) I often turn to you (the blogosphere).

I had my quarterly endo appointment recently. After arriving ten minutes early, I got into the exam room quickly, had a nice twenty minute nap, then saw the doc for a little less than five minutes.

My A1C is exactly the same as last time, which I take as a good sign because I was expecting it to be higher than last time.

I expressed an interest in starting Symlin, which he pretty quickly dismissed. He said we can talk more about it next appointment (in three months). "What's wrong with this appointment?" I thought to myself...

I was taken back by his quick dismissal, and am not too sure what to think about it.

Since I am not interested in starting it until it is available in pen form, I didn't press this too much. I'll make another call and appointment (and co-pay) once the pen is launched.

He then started talking up Byetta. I thought Byetta was more commonly used to treat type 2 diabetes, and was not used with type 1 diabetes.

Is that true?

Are there any of you out there that are type 1 and are using Byetta? What have your experiences been?

When I left the office I wondered if the Byetta rep is better looking than the Symlin rep. But then I realized that both drugs are from the same company and would then probably have the same sales rep. Where the heck are this doc's motivations coming from then?

Looking back on Amy Tenderich's post on Byetta back in June of 2006, two of the three actions caused appear to be pretty dang close to those of Amylin (slow gastric emptying and reducing appetite), and the third would not affect me (stimulating beta cells to make more insulin).

If that is the case, what's up with all of the stuff I see on the web about Byetta not being used for those using insulin? Is it dangerous to use with insulin? What's the difference between the two (Byetta and Symlin)? And why the heck does the doc feel so strongly about Byetta?

Color me confused. Again.


Blogger Allison said...

Although I'm not sure the scientific reasons for why Byetta shouldn't be used for type 1 diabetics, I do know that my uncle said that Byetta should not be used for type 1 diabetics. Maybe this is just because it hasn't been tested on type 1 diabetics, but I do remember him saying pretty strongly that Byetta is not for type 1 diabetics.

But I'll ask. :-)

1:20 PM  
Blogger Scott said...

You should start by telling your doctor that Byetta is NOT FDA-approved for treating type 1 diabetes and he would be recommending something, off-label, which has little benefit to you. Why do these people continue to forget that we don't all have type 2?!

3:27 PM  
Anonymous Sara said...

I watch far too much TV so the extent of my knowledge comes from that.

The Byetta commerical says that it is not supposed to be used with insulin so... off-label at best.

4:27 PM  
Blogger Albert said...

from now on any prescriptions you get should be posted here and properly screened by scott strumello for YOUR safety, haha.

4:47 PM  
Blogger Anne said...

You should ask your doctor why he would recommend byetta. One of its functions is to increase insulin production in the beta cells of the pancreas which is why it is not recommended for type 1's. Here's a quote from a Baylor Medicine study (

"Exenatide's action is due to its structural similarity to GLP-1. The glucoregulatory activities include enhancing glucose-dependent insulin synthesis from pancreatic beta cells, decreasing glucagon production, and slowing gastric emptying time. GLP-1 is a naturally occurring hormone that is released from the gastrointestinal tract and enhances the glucose-dependent insulin response. Trials using native GLP-1 showed no clinical benefit due to its very short half-life (<1 min). Exenatide is the synthetic version of exendin-4, an incretin hormone originally found in the saliva of the Gila monster Heloderma suspectum. It has a greater potency and a longer duration of action than the native GLP-1 when administered subcutaneously."

Obviously it wouldn't boost your insulin production but perhaps the other functions would work (decrease glucagon production and slow gastric emptying). It sounds like your doctor may be making you the guinea pig!

Later in the article: "Exenatide is not a substitute for insulin in insulin-requiring patients. Exenatide should not be used in patients with type 1 diabetes or for the treatment of diabetic ketoacidosis."

I can understand if you used it instead of insulin but I don't know what would happen if you used both!

FYI this study also shows that byetta reduced fetal growth in pregnant mice...(not that that would be an issue for you, obviously!)

7:00 PM  
Anonymous jessica said...

I am a type 1.5 diabetic. I am totally insulin dependant but require more insulin than a typical type 1. Also, I have had a lot of problem losing any weight, despite vigilant monitoring, portion control and exercise. I was already on Symlin when I convinced my endo to let me try Byetta too. He allowed it because he knew that I would monitor it carefully and because I see him and get labs done monthly. I use them both now and find that my insulin usage is reduced by approximately 20%. HOWEVER, there were a lot of lows again when I started Byetta (I experienced that when I started with Symlin too) and I still get naseous at times from it. The benefits have been the reduction of insulin required and an 8 lb weight loss-not much but better than I had achieved on my own. Just thought another point of view might be interesting.

7:03 PM  
Blogger Drea said...

I don't agree when Dr's say they will discuss something at the next appointment. I agree with you - why not discuss it right then!!!

Byetta and Symlin are not available in Canada as of yet - but I have been reading about both. I was in the mind set that Byetta was for type-2.....strange your Dr would recommend.....I would be interested to hear more....I'm off to research in to this, as I am sure you have been doing!

8:18 PM  
Blogger AmyT said...

I don't think Byetta is recommended for people taking insulin.

Time to find a new endo?

9:44 PM  
Blogger Mandy said...

This comment has been removed by the author.

10:13 PM  
Blogger Mandy said...

I would have to wonder if supressing glucagon production would be counter indicative for type 1s. Glucagon response from what I understand becomes blunted as the disease progresses. Typically, we want to keep as much of that response as we can if we are having a low. Type 2's because they still produce insulin, don't usually lose that response like type 1s.

So between it being useless for insulin secretion, and maybe even harmful with decreasing glucagon in a person who uses insulin, those would be my guesses.

10:14 PM  
Blogger kath said...

I think you should just assume your doctor is behind on his reading and hasn't read enough about either drug to give an accurate assessment. Hopefully he'll know by next visit.

As to Byetta, my endo won't let me try it because I'm on insulin and it contradicted for that combination. However, I am on Symlin, and I know I'll like it 100% better when the pens are available. Right now, I have a love hate relationship. Love the blood sugar control, hate the vial, syringes, etc.

11:37 PM  
Blogger Minnesota Nice said... you think he had someone else's chart? (Yes, that happened to me everythings on a screen, but it still could be the wrong person).
Oh man am I riled up. I do not get along well with doctors and this isn't helping the situation.
"Next appointment"????? I'd step on his head. Your insurance co is probably paying a tidy sum for the appointment and YOU HAVE A RIGHT TO HAVE YOUR QUESTIONS ANSWERED. Completely.
However, I do think that docs are not at all used to patients being proactive and maybe you startled him.
(I need to go cool off).
Glad you got some good technical info on the comments.

6:48 PM  
Blogger travis said...

A similar thing happened to me at my last endo appointment. I brought up Symlin since I tend to be able to eat forever and never feel full, but he was reluctant. He said in the doses I'd be using it wouldn't induce much feeling of satiety, and suggested instead increasing my ratio to control post-meal spikes, and to ask again next time if I was still interested in trying it. He also brought up Byetta - he wasn't recommending it to me per se, but said that some type 1s have been using it. Maybe it has some advantages over Symlin?

1:09 AM  
Anonymous Sue said...

Scientists at the University of Virginia Health System have identified an enzyme believed to be an important instigator of the inner-body conflict that causes Type 1 diabetes.

4:17 AM  
Blogger Chrissie in Belgium said...

You have received excellent info in the previous comments, so you really don't need more repetition on that front, but let me ask a question. Why must we spend so much of our time FIGHTING for answers, for help..... Why is everything such a battle? And then you think, "OK time to switch endos!" Is it worth the bother when nothing changes?!

3:07 AM  
Blogger Juice said...

Amazing. As you know Scott, I've taken my first shot of Byetta today. This is the first time in my diabetic life that I have taken an injection via pen.

Anyway, in all of the lit that I've read, even on Wiki, Byetta is most commonly connected to Type 2.

On another note, you can take Byetta while taking Insulin as well. I take 20 units of Lantis at Bedtime.

Just to quickly change the subject Scott. At the time you and I met, I weighed 375. By the time my wedding came around, I worked hard and met my Bride at the alter at a nice 318....since the marriage, I ballooned to of last week, I'm "down" to 386. I started doing what I was doing to drop those pounds previously. It's motivation to live better, longer and without meds. I'm shooting for 25 pounds less than my college playing weight of 275.

Even at 386, I'm still fast as you already know!

9:09 AM  
Blogger Scott K. Johnson said...

No doubt KJ, no doubt!

Keep me posted on how the Byetta works for you.

12:03 PM  
Blogger Bernard said...


First of all, go read what Rob says "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7."

Then use similar words next time you see your endo. It sounds like he's not reading the blogosphere. And that he forgets who's the real expert on your diabetes.

Byetta is targetted at and intended for people with Type 2, Symlin is intended for folks with Type 1.

Neither is appropriate for everyone.

What was your guy smoking?

6:21 PM  
Blogger Cara said...

I tagged you. Check out my blog. :)

7:28 AM  
Blogger Bernard said...

Darn Cara beat you.

I also marked you as tagged

10:36 AM  
Blogger Heidi said...

Hi Scott, I just tagged you - if you haven't been already - for the 7 random facts

2:50 PM  
Blogger Khurt Williams said...


8:38 PM  
Blogger MileMasterSarah said...

I can't speak for the byetta, but I can say this...I am pretty close (frighteningly so) to someone who has a fridgeful (bottom right corner of fridge-full) of unused uponed symlin that this certain someone or another will never use. If you DO ever start symlin, get in touch with me.

10:26 PM  
Anonymous JasonJayhawk said...

You are correct about the drug rep. Byetta has been having more marketing campaigns, whereas Symlin has been sort of a sleeper. The doctor probably had not been educated about Symlin yet by the drug rep's monthly lunch, whereas Byetta has a much larger (20 times more) audience.

An insider told me that some drug reps went out with the wrong training, and were told to market Byetta for all diabetics (Type 1's and Type 2's). I'm going to guess that your doctor was trained by one of those reps. Oddly, though, this was about one year ago when the improper training went out -- so I'm a bit perplexed as to why your doctor would think Byetta was for you.

Amylin should have corrected the mistraining of reps regarding the use of Symlin and Byetta. Symlin just doesn't get the attention it deserves because it pretty much sells itself to Type 1's (less than a million potential patients in the USA) as opposed to the huge numbers of Byetta-eligible patients.

2:27 PM  
Anonymous Anonymous said...

My doctor recently prescribed byetta for me. I'm a type 1. I asked about Symlin, and she did the same thing to me at my last appointment: dismissed it and said we'd talk about it in 3 months. Today was 3 months. I didn't argue because I thought I'd give it a shot, but I know Byetta is for type 2. The thing she did mention is that Byetta is easier to take (less shots), and it's easier to get the dosage right on it without hypoglycemia. Did you ever start taking it? If you did, I'd like to hear how it went for you ( I think Byetta might be a little cheaper too.

3:13 PM  
Anonymous Anonymous said...

I just saw my endo 3 days ago and spoke with her regarding Symlin and Byetta I have been a diabetic for 34 years (I was 5 when I was diagnosed) My endo gave me info on both medications and told me to go home read and watch the dvd's and then we could decide together what would be the best for me. I have been on an insulin pump for 9 years now and I thought that it was the best thing that I could do to manage my diabetes. I have gained 100 lbs since I was put on the pump and have tried all weight
loss programs and have not been able to lose any weight. My endo also prescribed Apirda insulin to help with weight control. After reading all of the info that she gave me I really think that Byetta is the medication that I will end up with.

7:28 AM  
Blogger Scott K. Johnson said...

I hope that you'll keep us informed on how that goes for you?

11:24 PM  
Anonymous Anonymous said...

I believe the reason why Byetta is not recommended for Type 1 diabetics is because they are not insulin resistant. Lizzie or Gilly helps those who are. I have seen many posts though out there from people who are using both insulin (short acting) and Byetta. But I know my father-in-law just went to my endo who said he could get off insulin and try Byetta (he's a Type 2).

8:36 PM  
Anonymous Anonymous said...

I am type 1 diabetic. I wear an insulin pump. I get 1.75 units an hour plus boluses and bg corrections. I have struggled with highs for a long time now...even with the pump. I only have good control for a few weeks at a time. My BG's are all over the place. I am a little over weight and have had trouble with trying to lose weight. 3 wks ago, I started Byetta. It has helped me a great deal. I experience some lows but for the most part, my BG's have been awesome. I was used to running somewhere between 250-600. Since the Byetta, my highest has been 175. I also have lost 9 pds. I really don't understand why this is working for me since Byetta is meant for type2. I hope this helps. I have been type 1 for 6 years. I think they need to research more on Byetta for type 1. Because it is working for me. if you have any more questions email me.

12:55 PM  
Anonymous Anonymous said...

Scott --
Just cruising around the web looking and found your blog... been a type 1 for 40 years (this week). I am 43. Been traditionally "managed" by doctors all my life until I hooked up with a fantastic doctor/researcher who has not only given me hope about my disease, but has turned the 'management' paradigm upside down. For someone like me - i am very active, ok control, usual complications over the years -- finding this md was as if he dropped out of heaven.
He put me on Byetta over a year ago, along with my Humulog and Lantus regimen to snap me into control. And it worked.
I take all three twice a day. And although I've never been too heavy, I've gone up and down in the same range and have had an appetite that would astound people.
After Byetta, I am a very modest eater -- my uncontrollable and insataible stomach was put to rest... I am a steady 117 lbs (I'm 5'4") and can leave food on my plate -- which i have never done in my lifetime.
Downside is that it sometimes make me feel bad, sometimes sick as a dog (esp. if I don't eat right away). But mostly, the upsides outweigh the down. [blogs on Byetta provide great tips to help w nausea, etc.]
My BS have been better, and have stabilized, which again, was never the case.
I cannot recommend Byetta more for Type 1, but think people need to find the right kind of doctor to help support these new actions, or you may find yourself all alone.
I called my doctor daily during the first weeks, as new insulin is a freightening proposition for a diabetic -- especially if you are stuck in your ways, like me.
My md said he has a lot more ideas similar to Byetta up his sleeve for me and will roll them out one by one... Will keep everyone posted on the progress. He has made me excited for the future and given me hope. I think that is more than half the game for us type 1s.

11:01 PM  
Blogger Scott K. Johnson said...

Thank you for such a great comment Anonymous, and I'm thrilled that it has worked so well for you!

And another "thank you" for sharing your story with us, as it will continue to help others that stumble onto this information.

11:04 PM  
Blogger Mike Hussey said...

Diabetic retinopathy could be associated with poorer memory and diminished brain power in people with Type 2 diabetes, according to a new research.

6:08 AM  
Anonymous Mia said...

Hi Scott,

My father-in-law in Type 1 diabetic and has been recently given Byetta to try. I would like to get in touch with this anonymous person that posted a comment on your blog ( I think he is the last one, he said that he is 43 years Type 1 diabetic ). Is there any chance I could get in touch with him? Or if you could email me about your experience with Byetta. Thank you very much in advance. My email is

9:52 AM  
Blogger Scott K. Johnson said...

Hi Mia,

Thanks for stopping by.

Unfortunately I don't have any contact information for the latest "Anonymous" commenter that you are trying to contact.

The only hope is if he/she reads this post again and sees your request.

4:52 PM  
Anonymous Sandy the Podiatrist (Brisbane) said...

Thanks for the info. I wasn't aware there was a potential conflict between the two.

7:36 AM  
Blogger Gabby Stone said...

Suffering from a long term disease and can't find a real solution for the disease by using pills or medicines just try some Home Remedies for that disease. Home remedies are the best way to get rid of any disease. Becausue home remedies have no side effects and you can take them regularly and treat the disease permanently.

2:39 AM  

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