symlin

While reaching type 1 diabetes, pumps, cgms and exercise, I came across several studies on type 1 diabetics using symlin to help control their bloodsugars with great success. Symlim is a synthetic form of amylin which is made by the beta cells in the pancreas. So type 1 diabetics do not have amylin in their bodies. Amylin is another hormone but it is not a replacement for insulin. Rather it helps decrease the amounted of insulin needed and slow down meal absorption so that you don't have postprandial blood sugar spikes. I'm going to talk to my endo about it on monday. has anyone else tried it or looked into it?

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

Mike is close to the top of a wait list for trials at Yale for an artificial pancreas. One of the other trials taking place is a symlin trial for type 1s and the project coordinator and I chatted about what's going on in that area and possibly having Mike enlist in that trial. I asked my endo about putting mike on symlin and she dismissed it completely saying it's only for type2s and he should see the team nutritionist. Mike takes his lunch fresh from home every day, eats a healthy breakfast, rarely eats fast food, exercises 4x per week plus gym every other day, plays drums, sports, etc., but just puts on weight and can't take it off. His A1C is 7.5 and his pdm shows his blood sugars are all trending beautifully. It's so depressing for him to be overweight when he does everything right, and cutting calories just seems cruel when he's growing and hungry. The nutritionist has never been able to help us solve this problem.

I'd love to hear what your endo says.

Kathy, Mom of Mike, 16 yr old T1 since Aug 2007

Mallory tried Symlin for about 3 months because her doctor thought she was insulin resistant. When she went to the Joslin Clinic this past summer, the doctor took her off of it because he felt like it was not helpful to patients he had seen. It made her sick every day that she took it. Sugar levels were better but she was not eating well because she was so tired of getting sick every time she ate She finally gave up and counted carbs more carefully. Mallory met a girl at college this fall who had a similar experience with Symlin. Mallory also struggles with her weight.
Mike is doing great with a 7.5 A1C; I'd love for my two children to have that A1C!

Our endocrinologist agreed with the doctor at Joslin that Symlin was making Mallory too sick so she was happy for Mallory to discontinue it.

Glucophage/metformin is one of the most common meds for type 2 diabetics. It decreases insulin resistance and help supress glucagon from being released. I'm on the highest dose and I still have terrible insulin resistance problems. I'm nauseous a lot from some of my other medical issues so maybe symlin isnt a realistic option but nothing seems to decrease my insulin resistance so I'd like to try it. I'll let you know what I find out.

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

I'm going to my Endo on Friday, I'm making myself a note to ask about the Symlin. However, no guarantees I'll remember to take the note out of my purse and ask (remember I'm old)....

Ann (diabetic since 1985-hypo-unaware since 2004)
& Lily (std poodle-owner trained DAD since July 2009)


"I may not be there yet, but I'm closer than I was yesterday"
~ Unknown

Thanks so much for all the very helpful insight into this issue. I trust the Joslin doctors to be cutting edge, so I'm relieved that Mike's doctor gave him good advice. I've had some reason for doubts in the past, and now I check and double check all the information I get. Doesn't it stink that on top of all this, some children have to struggle with their weight as well? Maybe this symlin trial will help figure out the problem and tweak the medicine so it doesn't make them so sick.

Kathy, Mom of Mike, 16 yr old T1 since Aug 2007

Ann-Did you learn anything about symlin at your apt?

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

Val-
I just now returned from my Endo appointment. My A1C dropped again, now is 5.8 wow....My doctor does not like dogs, but I did catch him "looking" at her in awe.

This is what he told me about the Symlin. It needs to be injected before each meal, cannot be mixed in with your shot if you are a shots person. He hasn't had too much interest in pump wearers adding extra shots either.

He mentioned he was having better luck with his "spikers" taking a Type 2 pill (gluophage.? not sure) to help the body's insulin sensitivity. He also has been having luck with pump wearers taking 1 shot of Lantus (lasts 24 hrs) per day as a baseline. Then you would alter your carb ratio and lower your basal just a tiny bit. He says the added benefit to the daily Lantus is that if, when your pump malfunctions, you don't climb to 500 in a couple of hours because the baseline is already there.

I'm interested in your doctor's opinions on Monday. Good luck with your A1C, fingers crossed...!!

Ann (diabetic since 1985-hypo-unaware since 2004)
& Lily (std poodle-owner trained DAD since July 2009)


"I may not be there yet, but I'm closer than I was yesterday"
~ Unknown



Edited 1 time(s). Last edit at 03/05/2010 02:00PM by minnesota.ann.

WOW 5.8?!?! I'm soooooooo impressed!! I hope mine is under 8.

I liked that symlin had a different method of action then insulin because i thought maybe that would make it more effective at preventing postprandial highs. I feel like since I have insulin resistance issues that used symlin would allow me to decrease my insulin usage while lowering my bloodsugars both of which should decrease my insulin resistance. But maybe symlin isn't as good as it sounds.

[www.childrenwithdiabetes.com] -I want a bloodsugar graph like this :/

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

My endo said symlin works very well in helping type 1 diabetics have more even bloodsugars. He said that symlin improves the action of insulin(i havent read anything about that in my research though). He said it is expensive and not all insurances like to pay for it. It also involves giving 3-4 shots a day not counting however many are needed for insulin. He wants me to meet with a diabetes educator to see if changes to my put are enough to help control my blood sugar spikes and if not he'd gladly start me on symlin.

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

Wow. I missed this topic, too. Not sure what's going on with my profile ?? This is very interesting. Did you ever start using symlin Val?

Bridget
Mother of Brady (16 yr old T1, diagnosed at 4)
Tammy (Amazing, Alerting 2 yr old GS) from Betheden Kennels

I started using Symlin and I absolutly LOVE it! I feel like I should preface this by saying that its definetly not a medicine for children, it has drawbacks and its quite a bit of work to figure out at first. That being said my bloodsugars shot up 200 points everytime I ate and wouldn't come down for hours and then i'd finally crash so giving symlin a try was worth it. I've finally worked out how to use it for breakfast and lunch so that my lunch rises by no more then 40. I'm still testing basal rates and figuring out some things to see if I can even out my dinner boluses. Symlin is keeping my bloodsugar under better control and allowing me to use less insulin so my basal rates are changing quite a bit. Hopefully once they stabilize I'll have even more consistent results.
Huge benefits-my bloodsugar averages are coming WAY down-150-180's with typically all but 1 bloodsugar below 85.
Drawbacks-increased risk of low bloodsugars(i'd say this is only the case for the first few weeks of starting symlin. after that you figure out how to prevent the low), I can't give symlin if I have active insulin on board because its speeds up the action of the insulin and I go from 250 to 50 in 30 mins and the symlin slows absorption of sugar to treat the low, unless treating a low I have to wait at least 4 hours from my last dose of symlin until i can eat again(i'm struggling to not eat a snack after dinner but ever time I do my bloodsugar skyrockets. I'm still trying to find a solution to this problem.)
I know the list of drawbacks is longer then the benefits but for me there's really no contest. It is sort of like becoming a diabetic again. At first figuring out the symlin seems overwhelming but its slowly becoming just another habit that makes my life soooooooo much better.

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

Wow - that does sound overwhelming. Hmmmm. Brady is becoming increasingly hard to figure out. Besides all the usual culprits (bad site/scar tissue, over bolus, under bolus, stress, exercise), there are some days that no matter what he does, he bounces around from 50 - 300. I never realized how much he fluctuated until we got Tammy. He used to test before meals and 2 hours after, bed time, and as needed throughout the day. Tammy has really shown us some strange patterns. He really goes sky high after eating. Tammy will start alerting him 30 minutes after he boluses a meal & he'll be 175. Then 30 minutes later, she'll alert again, and he'll be 300+ ??????

Bridget
Mother of Brady (16 yr old T1, diagnosed at 4)
Tammy (Amazing, Alerting 2 yr old GS) from Betheden Kennels



Edited 1 time(s). Last edit at 05/24/2010 07:19AM by Bridget.

Hi Val - I'm so happy that symlin is working for you! I'm still looking into this for Mike and your experience is great information and inspiration. I spoke to the docs at Yale while Mike was in the artificial pancreas study and they told me that they try symlin for their T1 patients when needed. One of the doctors involved in the study is a T1 and did try symlin, but couldn't tolerate it. It's all very interesting, since his current endo dismissed it outright as a treatment only for Type 2s. ....

Mike's blood sugars are very stable but his weight is a struggle. Do you find it causes weight loss and/or decreased appetite?

Kathy, Mom of Mike, 16 yr old T1 since Aug 2007

minnesota.ann Wrote:
-------------------------------------------------------
> He mentioned he was having better luck with his
> "spikers" taking a Type 2 pill (gluophage.? not
> sure) to help the body's insulin sensitivity. He
> also has been having luck with pump wearers taking
> 1 shot of Lantus (lasts 24 hrs) per day as a
> baseline. Then you would alter your carb ratio
> and lower your basal just a tiny bit. He says the
> added benefit to the daily Lantus is that if, when
> your pump malfunctions, you don't climb to 500 in
> a couple of hours because the baseline is already
> there.

I'm currently on an "untethered" trial.. after having 3 site failures in 12 hours and just generally being VERY frustrated with my pump, I though I'd give Lantus a try again - I'm wearing my pump for boluses and any higher basals I need, but relying on Lantus for 90% of my basal coverage. I've also been on Metformin since February and while the jury is still sort of "out" in terms of any benefits in terms of insulin resistance, I can say that my DP is greatly reduced, meal spikes really remain the same, but that has proved for me to be more of a bolus timing issue than a resistance issue.

So far Lantus + pumping has been working out fairly well for me.. I might just stay on this for a while. There hasn't been a week since I started pumping again last September that I haven't had at least one site go bad, resulting in #'s of 400+.

Symlin is used in conjuction with insulin shots/pump so its primarily targeted as a type 1 medicine. They are researching whether symlin can help type 2's lose weight and become more insulin sensitive though. The problem with lantus is that you'd have to take such a low dose that it really wouldn't make a huge difference in keeping you from being 500. Of course it might work better for some people but I have .5 per hr basals rates so to give a dose of lantus that would keep my basal rate at or below .5 would only add up to 2 units two hours after my site went bad. 2 Units of insulin would only bring me down about 50 mg/dl. I actually am taking Glucophage as well although I've cut the dosage in half since I started on symlin. I think i had my best day with symlin today. low-70 high-189 average-126, I tested 12 times. If anyone ends up trying symlin let me know or send a message I can answer more specific questions about how to use it if you want.

I'm a 22 years old and have been a type 1 diabetic since I was four.
My amazing dog came from Wildrose Kennels and her name is Lucy. She's been saving my life since January 2009

Interesting thread at this time, I've had a malfunctioning pump all week. Numbers 400+ (no delivery..no delivery...Arghhh). At one point I was tempted to throw the pump out a window (but I was at work and windows don't open LOL).

Sarah, I was thinking about raising my Lantus and using the pump for just my boluses. You say 90% of your basal rate; so I can take my total basal number and try 90% Lantus, then drop my basal rate super low just to keep the tubing flowing and not clog..? I'm gonna give it a try got the whole weekend to "test" it out. Lantus in the morning or before bed.?

I am really also considering going back to shots (with shots there is no equipment to be failing leaving me high and dry). When the pump fails we are never sure what is wrong.... could be the site, could be the set, could be the reservoir, could be the actual pump. When a failure happens I do not have ALL my supplies with me and have to resort to shots but then there is no long acting and then must give a shot every half hour. So frustrated and then you call the "help" line and most times end up educating the "help" line people. Additionally you lose an hour of your time that you'll never get back. OK, enough of my griping, where was I going with this rant.?

Oh, yeah glad to hear Symlin is indeed helping you and those are nice numbers Val.

Ann (diabetic since 1985-hypo-unaware since 2004)
& Lily (std poodle-owner trained DAD since July 2009)


"I may not be there yet, but I'm closer than I was yesterday"
~ Unknown