Monday, January 30, 2012

Do You Know More Than Your Doctor?

Welcome to another edition of the Question of the Week.

As I am getting ready to start Hepatitis C (HCV) treatment, I've been running across some pretty interesting pieces of information that I think will make my treatment experience more successful. This information has come to me courtesy of the websites, Facebook groups, listserves and folks on Twitter I subscribe to or follow who review and report on medical research and medical news.   And I find myself feeling awfully grateful towards them for bringing these things to my attention.

With So Much Information, Can Your Doctor Keep Up? 

That said, I can't help but feel some disappointment that my doctors aren't the ones sharing this information with me.  But I guess their busy schedules don't leave them with enough time to keep up with their medical journal reading.  Or maybe it is the fact that, with communication advances like the Internet, there is just so much more information being shared from all over the world that my doctors just can't keep up.  Either way, it sort of leaves me in the awkward position of knowing more about new research findings than my doctors.

So today I want to:
  • share a recent discovery, 
  • talk about where to go to find illness and treatment-related information and 
  • ask if you too know more than your doctor.

My Discovery About Vitamin D and HCV

Several years ago, I was diagnosed with a low Vitamin D level by my endocrinologist. Since then, I have been taking a Vitamin D supplement which has helped me get my Vitamin D level back into the normal range.  Along the way, I have found that I am getting sick from colds, flus and other bugs a lot less and, when I do get sick, the symptoms of those illnesses are much less intense.

Today I was alerted by a HCV group I belong to on Facebook about a research study on HCV and vitamin D.  About 84% of the HCV+ subjects in this study had a vitamin D deficiency.  The researchers gave vitamin D supplements to these patient who were all undergoing HCV treatment.  They found that boosting vitamin D levels back into the normal range (32 ng/mL) improved a patient's chances of getting a sustained virological response (SVR) to treatment from 42% to 86%.  In addition, only 8% of patients taking vitamin D supplements relapsed after treatment compared to 36% of patients with low vitamin D levels who were not taking a vitamin D supplement.

That sounds pretty impressive to me. So I'm taking a copy of this research article to my next appointment and discussing it with my hepatologist.  If he agrees with the findings, I am going to request that he monitor my Vitamin D level closely during treatment.

Finding the Information That is Out There

I know this kind of information is out there for other illnesses and conditions too.

In fact, I just read a book about cancer treatment (that I will be reviewing later in the week) that talks about using medications and supplements to synergistically enhanced the effectiveness of conventional cancer treatments.  According to the author, this "cocktail approach" to treatment has produced some pretty amazing results.

If you live with fibromyalgia, myalgic encepholopathy, chronic fatigue syndrome or multiple chemical sensitivities, a group called Co-Cure compiles this kind of information for you from a wide variety of reputable sources.  Visit their website and check out the research updates and reading room pages.  You can also subscribe to updates via email by going to the list operations page.

Besides books and trusted medical websites, another place to search is Pub Med.  Pub Med is the U.S. National Library of Medicine MEDLINE service that contains more that 21 million citations for biomedical literature.  Check out their Quick Start guide for video tutorials, FAQs and links to learn more about searching for information on Pub Med.

Sharing the Information with Your Doctor

Once you have the information, it's time to talk with your healthcare provider. You'll need their help and medical expertise to discern if these new medications and treatment approaches are right for you and your specific situation.  Be sure to take a copy of the article with you to share with your doctor.

I think it is a real litmus test of your working relationship with your doctor when you share information with them.  So don't let fear stop you.  You'll gain valuable information about your doctor's commitment to your good health and well being by sharing information with them.

When I have received a less than supportive response, I've taken it as a sign that it was time to find a better doctor.

So do you know more than your doctor?  What trusted resources do you use to keep on top of new medical information? Do you feel comfortable sharing information with your doctor?  Do you have any advice for others about sharing information with health care providers?

Please share your response on the Oh My Aches and Pains! Facebook page or below in the comments section.

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Mo said...

Selena, Sometimes I do know more than my doctors. Luckily, my Internist is very happy with any info or suggestions I bring to him. He is open-minded, and once called me to ask my opinion on an adrenal disease question he had. One time I was in the hospital due to an Addison Crisis, and I had two different doctors come in my room and ask me all about Addison's Disease. I was flabergasted! They were both young doctors (maybe even students I don't remember) and wanted to know more about the condition from a patient instead of a book. I was very impressed by these young doctors. Another time I was in my Neurologist's office and he had students observing his patients during their visits. My doctor leaned back in his chair, crossed his arms and asked the three students what they knew about Addison's. All they knew was that it involved the adrenals. He looked at me and asked me to explain it to them. What happened then was a long conversation about Addison's, with many questions. The doctor then told the students that just because the were studying neurology shouldn't stop them from learning all they can from their patients. It was quite a doctor's visit. BUT, on the other hand I have had doctors look at me and say...you don't have Addison's disease (This happened at Mayo to me) and they had tests in front of them that proved it. I once changed endocrinologists just to be closer to the doctor's office. He sat down, looked at me and said I couldn't have Addison's disease because I had low potasium, and if I did have it I would have high potassium. I "gently" explained the difference between primary and secondary adrenal disease, and never went back to him. Sheesh. I have recently read about a problem with low vitamin B and the problems it can cause me. I intend to bring it up at my next visit with my endo, and see if she agrees with me. Just like you with the Vit D...sometimes we just need to tell the doctors what we need/want. Wow, sorry this has gone on so long. Great post just got me thinking!


Iris said...

Hi Selena
I'm amazed by just how much I've read about Vitamin D lately. When my rheumatologist first told me to take it, and let me know he was watching my levels in my regular blood tests, I just thought it was because I avoid the sun (because I get a bumpy rash - lupus). More recently, I read that drugs like the steroids I take can also cause Vitamin D deficiency.
I'd never known it was important, until my blood tests showed I didn't have enough!

Cheyenne said...

Hi Selena, Thanks for the great post. I have fibromayalgia & Hashimoto Disease and have learned 90% of what I know about these from doing my own research. My doctor diagnosed me but he rarely spends more than 4 minutes (I timed it) with me at an appointment so I am not getting the quality time that I sometimes need. At my last appointment (annual physical) I got a total of about 8 minutes with the doctor in which he went down a list of questions, one of which was: "And you're taking your vitamin D supplements?"
I was surprised because I didn't know I should be taking vitamin D. (I was diagnosed about a year ago) He said a lot of people with fibromayalgia find some relief from increasing their vitamin D levels. I said, "Good to know. Should I take them then?" I got a yes from the doc and that's all. I had to read up on it online to figure out how to take it and if it would interfere with other meds.
I am considering finding a new doctor as this rushed "service" with him is typical.
How much time does your doctor spend with you during appointments? This question is open for everyone. I'd love the feedback as I'm very frustrated now and wondering what to do next.