Wednesday, August 18, 2010

Is Symlin Phony?

During my really bad endo appointment a couple days ago I ran into something I wasn't expecting.  Before I go on I would like to mention that I got referred to this clinic through a private medical clinic.  They are supposed to be the best in the area.  I won't disclose the clinic information because that's not right.  I have nothing but good things to say about my CDE that I see there.  As my last post stated, through all my hard work and efforts my A1C has gone up, my cholesterol level has gone up, I've gained weight and I'm now suddenly in the very high risk category for heart disease.  There was that number on my test result that was bolded** with double asterisks.  You KNOW what I mean!  Now because I'm connected with the D-OC that comes with news and information from fellow diabetes patients.  It comes with fellow diabetic stories first-hand and a lot of credible information from credible sources.  Again, no names or blogs mentioned but I'm sure you get what I'm talking about.


I asked my CDE a month ago about her thoughts on Symlin and if it might help me. (Symlin is an injectable medication to help prevent post meal spikes and regulate blood sugar when combined with insulin treatment}.  What is the first thing she said? "What is Symlin?"  I tried to explain to her what I've learned about it through the Symlin website and the ADA website.  I know Symlin is a brand name.  She quickly changed the topic.  I didn't pester because she's a CDE, I thought I'll ask my endo when I see him next month. 


So I brought it up with my endo two days ago and got the very same response.  "What is Symlin?"  Again, I explained it.  As soon as I mentioned its another hormone that helps reduce post meal spikes he knew I was talking about Amylin as Symlin is a brand name.  I said I had been researching it on the net.  I mentioned how I knew a lot of people using symlin through my connection with other diabetes bloggers.  What did he say to me? 

"You can't believe everything you read on the Internet or from other bloggers."

Okay fine, you got me there maybe if it was 10 years ago.  Wake up and smell the bandaids dude!  Think about WHERE I'm getting this information from!  The internet has become an intense trusted resource for medical information. 


I mentioned the people I know are mostly Americans and maybe that has something to do with it.  He responds by telling me he is a member of the ADA and he's never read anything about Symlin as a treatment for Type 1 diabetics.  He continued on for a bit but I stopped listening because I was irate.  Does it have something to do with Canada?  I don't know but he sure made me feel like an idiot.  I am composing an email to him with links to the ADA Symlin page as well as the Symlin Website.  I know reputable bloggers like Amy at Diabetes Mine has written about it too.  What would everybody out there on Symlin say if I said "You're all fooling yourselves there's no such treatment."  I mean really, come on.  The D-OC isn't just a bunch of random folks posting ideas and imaginary treatments.  We are REAL people with a REAL disease living REAL lives with REAL medications.


Why are doctors so quick to pass off information from patients as phony? They are so high and mighty sitting on top of their hefty degrees.  They are reluctant to learn anything from a patient.  I think us patients who live the disease 24-fucking-7 might know a thing or two about what's available.  I'm not full of shit, it's not like Symlin is a magic cure fluff I read about on the Internet.  I'm not stupid, but my endo is a mighty know-it-all apparently. 

Also, how odd I write this post in the morning ready to post it in the afternoon only minutes after seeing Kerri's post about Symlin.  Wow, strange worlds. 

12 comments:

  1. Symlin is indeed quite real, and there's a lot of medical literature to back it up, too. Visit the Symlin User's Forum on TuDiabetes at http://www.tudiabetes.org/group/symlin. For some scientific papers behind Symlin, visit http://tinyurl.com/symlinforum

    Wishing you the best of luck!

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  2. Strange indeed! I've seen the name dotted around the blogs, as you say, but am not aware of anyone her in the UK who is using it. It sucks when doctors think that their book-learning somehow always overrides the day-to-day experiences of intelligent people who have just as much research capability as them, and can relay their findings in an accessible and trustworthy way.

    It strikes me this doctor will never learn this valuable lesson, because he clearly considers only his knowledge to be of value - even when he lacks knowledge, as in this case!

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  3. I know you said you have nothing against your doctor, and the clinic you go to is "supposed to be the best," but I think you should consider changing endos and CDEs. It's either that or you will have to continue educating them and telling them what treatments might be beneficial. Doctor/patient relationships like that are becoming more and more common.
    I think your CDE changed the subject because it her ignorance was showing.
    I think your endo dismissed what you were saying because she is totally unaware of her own ignorance. She isn't even conscious of the possibility that you could know something she doesn't, which is truly profound ignorance.
    Being an endocrinologist unaware of Symlin in 2010 goes a little beyond missing some obscure study. Think of what else there might be that a good doctor would know that yours doesn't. There might be something in that gap that could help you.

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  4. Did they actually say whether Symlin is available in Canada? (I'm in Australia) I asked my endo why he hadn't considered it for me and I discovered it is not currently availabel here, for love or money! I really think it would be beneficial as I have extreme post meal spikes and am frequently hungry but short of going to visit some D-bloggers in NY and snaffling myself a few vials of it, it is not even an option for me.

    PS, hang in there, yesterday's post was full of a lot of emotion, I've had D for 10 years and certainly have days like that too. So just know we've been there too.

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  5. I am considering asking my endo about symlin on friday at my appointment. I will let you know what she says about it! I know there are a ton of people here on the DOC who are on it, and you are right, they ARE real people using a REAL treatment!!!

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  6. Yes I'm sure it has something to do with it not being available in Canada but I am still surprised that none of the doctors in that office have even heard of it, this is their specialty, you'd think they'd know something about it at least. And they are so quick to pass off information from patients as fluff.

    Thanks for the comments guys, it helps to understand the situation more.

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  7. I got a similar look from a pump rep when I mentioned some of my concerns about adding CGM (he is actually on both!) - that look that tells you they think everything on the internet is a bogus scam and that you're stupid for even considering it in the multitude of sources of information you are gathering. The pro's need to get a clue that the DOC is a vital part of our self-care and a good source of ideas to explore.

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  8. I think a lot of docs are Mighty Know It Alls. I like my endo well enough but I get way more valuable information when I see the Physican's Assistant. He's awesome at the practical stuff (like the exercise thing) and fully supports my web research. The endo is more into reading test results and then telling me to talk to the PA for management stuff. Ugh.

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  9. "Wake up and smell the bandaids, dude."

    That totally cracked me up.

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  10. Ooh! I hate it when doctors do the "high-and-mighty" routine! Makes me mad!

    I always remember something one of my professors at college told me: "You never stop learning. Once you stop wanting to learn, you're past it." I think maybe your docs need to be reminded of that.

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  11. you know Kaitake I thought the same thing. In my line of work I continue to learn and self-educate because its my CAREER. I assumed anybody doing what they love would stay up-to-date on what's out there. It's in their and their patients best interests.
    very frustrating

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  12. Still not available in Canada. I don't bring it up with clients because it is not available here in Canada. This is not an example of something off the wall, but working with people I am always concerned about about their hopes and dreams and the vulnerabilty to misinformation or information misinterpreted that go along with hopes and dreams. This is not a put down, it is just something we can all be vulnerable to.

    When I come across something new I gather all the reliable infomaton I can about it (good and bad) and try to insure my patients always have full information to make free and informed choices. If I am aware of risks of a particular treatment I try to insure the risks are monitored so things do not go badly - same for any treatment really.

    If my clients lives close to the US border I might encourage a little careful cross boarder shopping.

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