New medication for my type 1 diabetes

[Mercysmom]

I have had type 1 diabetes for almost 20 years. I am having a devil of a time trying to get my blood sugar to stabilize - I wore a continuous glucose monitoring system for three days and the data chart looked more like the Himalaya Mountains. My A1Cs have yet to be near 7.0...I have been around a 9 for years.

The doctor has been playing with the settings on my pump but them my body does some odd stuff...I can eat an English muffin with the measured amount of butter and jam, take the correct amount of insulin to cover that and my current blood sugar and can get readings of 97 to 300 and I have not eaten anything else...

Actually had arguments with two former doctors who told me I was a "nut job" and "I was doing something wrong - the pump should give me good numbers."

We are trying a new injectable along with the pump - Simlyn in a pen. It seems to be leveling things out and a plus - it makes me feel full so I am hoping to drop a few pounds in the process. Doc said they are finding out that when the pancreas goes, insulin is not the only hormone that goes that is needed... "amlyn" is another one (not sure I spelled it right) and this hormone keeps you from digesting food too fast (doc thinks that might be part of my problem - quick and total digestion means dumping sugar into the bloodstream = high numbers. I'll try her theory out - it is better than being called a "nut job" by a doctor who was too busy to see me and always sent his med students in... my current endocrinologist is fantastic and wants to try all that she can to get me to a stable place.

Anyone else out there had any experience with this medication? Just wondering what you thought of it. I am two weeks on it - can live with the minor nausea for the chance to stabilize my sugars and lose some weight...

Denise

 

[Jill]

Denise --

Is it similar to Byetta? I'm thinking it is.

I used Byetta for 10mos or so (along with Lantus & Humalog) and it did work to lower my numbers. But I just couldn't stand the side effects. If I ate much of anything for breakfast or lunch (and I mean not a lot), I would be miserable a lot of days to the point of not wanting dinner. I felt bloated / yucky all day but I don't think it effects most people that way (not after at first, anyway), and it did what I wanted for my numbers.

Now, I'm just using more insulin but feeling better and keeping the numbers good as well.

Good luck!

Jill

 

[Jill]

Denise --

Another HUGE problem I was having I can't believe I didn't mention at first b/c if the two meds are similar (really think they are), you want to be on guard in case it happens to you.

When I would eat dinner (nearly never following breakfast-lunch (usually eat 2x a day only)), 1-2 hours post meal, several times a week, I could be down to like 40. Sometime when I'd only be down to 70 (still too low for me that soon after eating), if I would just wait vs. correcting, then check hourly, about 4 hours later, the numbers would rise and sometimes too high. Conversely, if I corrected for a 40 (and obviously you pretty much have to), then a few hours later, I could be at 300 or so. It just made it so hard to adjust the insulin amount because the byetta delays digestion along with mimicking those hormones... I think what was happening is that the insulin was attaining it's full function too soon before the food really was done digesting.

Again, good luck... I've not dealt with it as long as you have, but long enough to know how frustrating it can be and to know that the least amount of emotional stress can throw a person out of whack in the numbers department.

Jill

 

[barnbum]

Denise--I don't know anything about the disease--but jeepers, you don't need to lose weight!!

I hope you can get things smoothed out--what a pain for anyone with this disease to have to deal with.

 

[Candleliteranch]

OK, I've got you beat! I've been a type I (juvinile) diabetic for over 40 years and am very lucky to be alive to say that. I've had bearly all the complications to go with it including transplant. My transplanted pancreas failed and I've not been able to regain control since. I'm seriously considering the pump but am so afraid I'll not be able to do it. The thought of a tubing going in my stomach and staying there freaks me out! How bad is it? I can't even find a picture of what it looks like. Would you mind sharing any info with me. I'd be grateful! You can email me at [email protected]

 

[Mercysmom]

OK, I've got you beat! I've been a type I (juvinile) diabetic for over 40 years and am very lucky to be alive to say that. I've had bearly all the complications to go with it including transplant. My transplanted pancreas failed and I've not been able to regain control since. I'm seriously considering the pump but am so afraid I'll not be able to do it. The thought of a tubing going in my stomach and staying there freaks me out! How bad is it? I can't even find a picture of what it looks like. Would you mind sharing any info with me. I'd be grateful! You can email me at [email protected]

The nice thing about the pump is I forget it is there. I use the bent needle, which the non-diabetic nurse practitioner thought would hurt but it is a much better option for me than the cannulas - I would crimp mine through daily activities and the insulin would not flow and poof - I would be in the 200s. The tubing is very thin and I usually stick my pump on my bra. It has a connector that I can detach for showering or swimming so the needle stays in place and the pump does not get ruined. It is water resistant put not waterproof. Mine is a Medtronic MiniMed pump - you can Google it and it should come up. The pump is not much bigger than a cellphone and I had a captain reach for it on my belt when I was sailing and he was shocked when he saw it was not a phone at all...he was afraid it would get wet in the rough water we were about to go into....

I change mine every few days - the needle sits in fat tissue (trust me Karla, I have pudge!

) and it is secured with a Polyfin "skin." I am on Humalog insulin (very fast acting) and now the Simlyn. The doctor will set the pump for your sensitivity to insulin, you will have different basal (baseline) rates that keep you covered and boluses that cover your meals...they can even set the insulin to carb ratio... and my pump is old. The new ones have glucose sensors and can send you a warning if something is awry - I am hoping they will put me on this pump soon.

Feel free to PM me with pump questions...I could not handle NPH and regular insulin - the PHN would react at weird times and I would black out.

I have to test after I eat to make sure I am still running normal...so far, so good. They warned me about the potential lows with the Simlyn.

Denise

 

[susanne]

I haven't used Symlin, but your post sent me off to read up on it.

While both of Symlin and Byetta help to keep blood sugar levels from skyrocketing, Symlin works with injected insulin, so can be used by both type I and type II diabetics, whereas Byetta controls how much insulin your pancreas produces, so is only effective for type II (since the pancreas no longer produces insulin with type I).

Jill, I remember you saying that your doctors thought you might have adult onset type I (which is what I have)...Could that might explain why you had such trouble with Byetta?

I, too, really need to see about getting an insulin pump. I don't know I'm just not able to feel low blood sugar like I used to (I could always predict fairly accurately what my readings would be), but I've had some horrific low blood sugars this past year -- to the point where I could not speak, could barely sit up...If Keith had not been there, I'd have been toast. My doctor (yay, Kaiser Permanente!!) insisted that things would balance out (this is the same moron who asked, "Oh, are you a type I diabetic?...grrr...like I trust her!)

 

[Mercysmom]

I haven't used Symlin, but your post sent me off to read up on it.
While both of Symlin and Byetta help to keep blood sugar levels from skyrocketing, Symlin works with injected insulin, so can be used by both type I and type II diabetics, whereas Byetta controls how much insulin your pancreas produces, so is only effective for type II (since the pancreas no longer produces insulin with type I).

Jill, I remember you saying that your doctors thought you might have adult onset type I (which is what I have)...Could that might explain why you had such trouble with Byetta?

I, too, really need to see about getting an insulin pump. I don't know I'm just not able to feel low blood sugar like I used to (I could always predict fairly accurately what my readings would be), but I've had some horrific low blood sugars this past year -- to the point where I could not speak, could barely sit up...If Keith had not been there, I'd have been toast. My doctor (yay, Kaiser Permanente!!) insisted that things would balance out (this is the same moron who asked, "Oh, are you a type I diabetic?...grrr...like I trust her!)

Susanne, I hear you on the lows you cannot feel - years ago, I left the barn where my horses were boarded just to end up in an ambulance because I blacked out on a road I had no idea about since it was not near my house or the barn. Luckily my hubby had picked up my kids - they were little at the time - or they would have crashed with me. Ambulance and fire department thought I broke my neck and secured me tightly so I did not move...three sets of x-rays later they determined I was OK. It was the ambulance crew that Mercy and I did their Open House for a number of years that took care of me.

They put me on the pump shortly after that awful incident...thank God I did not hit anyone or God forbid, kill or hurt anyone. I have nightmares about it to this day. It took 3 shots of Glucagon to get me to 50, when I started waking up from zero. Luckily, now I work at a public school and am across from the nurse's office and my coworkers know when I go gray in skin color, it is time to take action. Only one time was I totally out of it and an administrator and the nurse dragged me to the nurse's office for treatment... to those not familiar with low blood sugar, people can get argumentative, nasty and stubborn. My coworkers know that is not me...

Even Mercy has picked up on my low sugars...I was waiting for her to foal back in 1997 and did not wake up when the AM alarm went off - I slept in her 14 x 14 box stall at the time. She took the sleeping bag off on me, bit me on the leg and then started pawing at my head. I woke up, realized I was low, tested and was 45. I had damp bite marks all up and down my clothing. Not that Mercy did anything heroic... she just knew that I wasn't getting up to feed her and that was a BIG problem in her world.

I have learned to have a big mouth and advocate for myself - had two endocrinologists who swore I was doing stuff wrong but am finding out, they did not delve deep enough to see what my body was actually doing. My current endocrinologist listens and will take what I have for data and works with me rather than trying to type me into what I should be according to their research or practice or whatever.

With all the surgeries I have had and am scheduled to have (two impending elbow tendon fixes and still an impending ACL repair - I still have 253 kids to get to graduation and through Awards Night), the docs like to get me home as quick as possible as they admit they cannot work with my sugars as I can. They have their set chart of insulin to give for what reading but I never fit the mold. The only time they tried to work with me was in 2007 with the infection in my knee that just about killed me...they told me that after the fact...My docs tease me because I never go the textbook route. Already I am practicing driving one handed but hubby would bring me to work as I need to be there.

Thanks for the clarification on Symlin and Byetta...I had heard of Byetta but knew it was not for the issues I have going on. I just hope that as research continues and I post my findings and experiences, I can help someone else. There are worse diseases out there than diabetes but so many people have it these days and the more we understand about it, the better our quality of life can be.

Denise

 

[Jill]

Susanne,

That could be. I see an endocrinologist now as well as my "regular" doctor. Sometimes I feel like what one of them says contradicts what the other of them said

Right now, I have some odd inflammatory indicator (c-reactive protein which should be around 3 has been 19 and 15) and I was hoping the byetta had caused it (and I know it made me feel bad), but I may be the only one who thinks it could have caused the inflammatory indicator to be so elevated. I had more blood drawn last week (after being off it a month) but haven't heard back. Probably to see how worrying about it over a long holiday weekend effects my numbers

I swear... some days I feel like a walking science project. But for whatever reason, I am doing much better / much more predictable on "just" insulin

Jill

 

[Mercysmom]

I swear... some days I feel like a walking science project. But for whatever reason, I am doing much better / much more predictable on "just" insulin

Jill

I hear you about being a walking science project... right now my numbers seem to have stabilized in the normal end - 65-88! I am hoping I can get my A1C down low enough by my next bloodwork in a month....

Denise