Talk to your health care providers about your supplements

Discussion in 'Fibromyalgia Main Forum' started by Lichu3, Mar 22, 2007.

  1. Lichu3

    Lichu3 New Member

    There are a couple posts today about supplement and prescription medicine interactions. As mentioned by several posters, supplements are not regulated by the FDA, something "natural" doesn't mean it is harmless, and the same supplement quality/ quantity can vary from one manufacturer to another.

    When I was practicing medicine, I often asked people about alternative medications/vitamins/etc. that they were taking.
    Polls show people are embarassed sometimes to tell their healthcare providers what they are taking but if their MDs,etc. are responsible they shouldn't make you feel bad for trying other things and should at least warn you about known interactions.

    In my own case, I give my primary MD (who is traditional but has other patients taking alt. meds in her clinic) and my Chinese medicine doctor lists of what I am taking and besides me looking things up, they also cross-check meds for me. I also bring this list to specialist visits regardless of what these MDs think.

    One other option would also be to talk to your pharmacist.
  2. springrose22

    springrose22 New Member

    My Dr. doesn't care what I take besides the almighty pharmaceuticals that she prescribes. I do all of my own research regarding interactions, and have on a number of occasions, had to tell her that I can't take certain medications because they would interact with others that I am already taking or which are just plain contraindicated for some reason. Most Drs. only know what is fed to them by the drug companies. You're better off with a pharmacist, and even then, check with the CPS. Marie
  3. 545

    545 New Member

    On a basic level, it's certainly necessary to be upfront with this sort of stuff. But at the same time, I've had similar baffeling experiences with some of my doctors. From my own experience, I *think* that my daily vitamin supplements are helping, and I know that eating extra salt and taking licorice root has really helped. In a sense, I stumbled across all of these methods, looking for something - anything - that would help...BUT when I ask doctors about it, they tend to shrug.

    In fact, I find this very odd, because for me these supplements don't just help me out, but I'd think they should be clues as to what's wrong & where to invesigate. When I pressed my doctor about this, he suggested that they might be having placebo effects, and I wonder if most doctors see such supplement/vitamin seeking behavior as such.

    Nonetheless, I recall reading a study saying that patients with CFS aren't more suspectible to placebo treatments; for my wallet's sake, I almost wish we were more susceptible to placebos, because for each of the few things that have worked, there were a dozen that didn't or made things worse.

    For me, this really seems to widen the gap between doctor & patient - it creates this attitude that, if you're not going to help me, who the heck is?

    Frustration aside, any thoughts?
  4. swedeboy

    swedeboy Member

    Yeah when I mentioned to my PCP at Stanford that I am taking 5-HTP and SAM-e he said that he is not familiar with them. Aside from St.Johns Wort, SAM-e and 5-HTP are probably the most recognized over-the-counter anti-depressants.

    I also told my PCP that I take other over-the-counter supplements and he didn't seem interested in knowing what they are. I understand that certain combinations are potentially harmful, however, I don't tell my doctor everything I am taking.

    I'm taking so many pills everyday day, most of which are just nutritional supports, like magnesium, multivitamin, vit c, vit e, turmeric, milk thistle, ginko biloba, chlorella, omega 3's, probiotics, selenium, molybdenum, l-theanine, gaba, CoQ10, Transfer Factors, DHEA, B12, Folate, Adrenal support (by enzymatic therapies), Mitochondria Ignite with NT Factor, Phospatidyl serine, undenatured whey, raw garlic, doxepin, and flexeril, I think that's all of them.

    The only ones my Doctor knows I take are CoQ10, 5-HTP, and SAM-e.

    I do agree that one has to be careful when combining meds.
    [This Message was Edited on 03/24/2007]
  5. shock me (us)....

    Back in September 05, after 3 months of i.v. treatments 3 times a week...average of *10-12* 'needle sticks' per week, due to a nurse practitioner, whom, I still love to death, but, just could not access my veins, EVER on her 2-3 tries, before calling a nurse from the surgical floor to do it, my veins were ruined.

    (i've always had previously, and still- for lab & surgery nurses) easily, not only viewable, some sometimes, they even stick UP a little, and some are even 'fat, juicy' ones (LOL sorry if that grosses anyone out, I've worked in medical, until I got sick, heard/said all kinds of expressions, but, I do* realize, that when it comes to needles, blood, IV's, etc- sometimes it can make some people a bit grossed out, or faint, etc.. so I apologize ahead..)

    Anyways* I've been off and on pain meds for yrs, just here there, after surgery, or a month or two flare, etc.. now regularly for yr & a half+ and, after my port-cath (under the skin, sewn to the muscles of the chest wall, iv access, for long term, or frequent iv treatments, for people with no veins left, chemo treatments, etc)

    I was given- I believe, 5mgs percocets for about a week post-surgery...about 3 days in, I was sitting at the comp, and once again, but, much more severely, I became nauseated, blurred vision, heart pounding, & severely short of breath.. so dizzy, I stood up to get to bed, and fell head first into the door-

    well, my surgeon who was absolutely AWESOME! told his secretary to call me back, and tell me to PROMISE to go to the ER a.s.a.p. as infrequently, but something that can and has* happened after this procedure, can be a PE (blood clot in the lung/pulmonary embolism..)

    So, with the seriousness and insistance of the secretary, I grudgingly went... I thought, well...this* time, I can actually say "Dr Le's office TOLD me to come here, asap, to be checked for a blood clot in the lungs, etc.." (you'd have THOUGHT that just my symptoms would've been ENOUGH, no d*** explanation NEEDED.

    Well... it just so happened to be so da** busy at (2:30 in the afternoon!) and also, apparently the *triage* nurse was asleep, or quit, etc.. because, in my SEVEN hours of waiting, (for several hrs, my roommate, a victim of a nasty 4 wheeling accident, who was only visiting, from Tenn...and *bleeding from the HEAD, knees, arm, etc) sat and watched a teenager with a sprained ankle be treated, tested, x-rayed, pain medicated, put on crutches,...etc A SPRAIN..not massive fracture that required immediate attention, surgery, treatment, etc..

    And the list goes on..I finally got REALLLl nasty when they FINALLY came in to do bloodwork- that I did just have done TWICE (month+ before procedure, and days before, or morning of...can't remember) not to mention, doing so, in BOTH arms* when I JUST HAD A PORT CATH PUT IN FOR IV ACCESS & BLOODWORK, as my arms were bruised worse than a junkies, with bad aim!

    I try to leave AMA, sent my sister home for MY pain meds, (which, MAY have been causing the problems FIRSTLY- though, my only previous 'reactions' were, no effect on pain, worsening headache, & nausea... THEN, you mention AMA.. & suddenly some snooty azz, "way to busy for you the past 5+ hrs to do ANYTHING" suddenly becomes alll knowing, all telling, chewing ME out, about the risk of leaving AMA, if I had a PE" I said.. uhh, if I DID have one, I'D ALREADY BE DEAD FROM IT!!!" "NO ONE HAS DONE A SINGLE D***ED THING IN THE PAST 5 HRS I'VE BEEN HERE, SO, IT'S OBVIOUSLY NOT* THAT IMPORTANT, "


    To my response of if i'd had one, i'd already be DEAD from it anyways- that azzhole doctor just said completely without concern, emotion, etc "not necessarily"..

    THEN within the next 2 hrs, I get a CT scan, bloodwork, I.v., X-ray...

    And told to 'increase my clonazepam' which- was NOT a good thing to say to me, since I'd heard that 2 times before him, that month- for WHATEVER complaint I had- 2mgs to 3.5mgs in like 2wks..

    THEN- of ALLLL the medications I'm on, that s.o.b has the nerve to finish his 'goodbye' with chewing me out BIG TIME about how 'dangerous" ST JOHN'S WORT IS! NOT MY MEDS, but, ST JOHN'S WORT...like he trusted it less than freakin' morphine, etc!

    I went OFF. I said something that may not quite be true, but, furious, I said, "wellll.. I've never known anyone to have DIED from ST JOHN'S WORT! Nor get an addiction, etc...as with oh, I don't know, 90% of the MEDS I'm ON!!

    I say, may not quite* be true, because, I have not actually looked at fatality w st john's wort...but, I DO know, they had to figure out SOMEHOW, that it IS NOT to be taken for at least TWO weeks, prior to surgery, as it can 'cause bleeding problems' or something like that..

    Still after 7 hrs, I was exhausted, furious, fed up, and to look at every single liver harming, addiction-potential-having, side effects out the wazoo causing, mind altering (fog, grogginess, depression?), stomach eating MEDS i was on...he wants to mutter crap to ME about ST JOHN's wort???? Uh-Uh!

    Also, I normally try to make it much easier on myself, my sister, the nurse, etc..by handing a typed list of meds, supps, etc especially when they're changing frequently, (trials, etc)...and I've seen them not even look at the list, put it in my records....only to have a doctor either come in & suggest trying something I'm already on...something I cannot take, etc---I just handed the nurse a list....which I WATCHED her put in my file-should be top page, right??? And to have that done??? ARGHH!!

    anyhow, good post, lol, thx for lettin' me ramble..

    Laura
  6. Adl123

    Adl123 New Member

    I agree.
    I've typed up a paper that has my illnesses,(All 17 of them), allergies(all 50 of them), phrmaceutical prescriptions and supplemtal prescriptions on it. I have things in different colors, and the allergies are catagorized from:"anaphalexis" down to "sensitivity reaction". Each in a different color.

    Most doctors don't even look at my list. Just as many don't think much of supplements. Neither does my pharmacist.
    I have't been able to find a pharmacist who knows beans about supplements, and/or their reactions with other meds.

    I did have one doctor who actually thanked me for the list. May acupuncturist did, also. But for the most part, doctors are mostly threatened. One specialist looked at me, and, with my colorful list in his hands, with 5 or 6 defferent levels of reactions described in various colors, from red to light orange, asked:"Do you have any real allergies"? I did not return. Like the emergency room nurse who did not know that one could be allergic to all antibiotics and laughed at me. I did't return there, either.

    Needless to say, I no longer expect much. I'm lucky that I have a Primary who is open minded enough to suggest I go to the health food store, when I need medicine and I'm allergic. I'm doubly lucky in that my health food store has a trained professional who knows both types of medications.And, I'm especially lucky that my Chinesse Herbalist is a true healer and thoroughly trained (In the US, India and Tibet).

    Other than that, I go to my primary for blood tests and chemical prescriptions, and for the rest I depend on my Chinese herbalist and my own common sense. If I die, well, I've done the best I can do.

    I will admit that I'm a bit frustrated with the Western Medical community (I guess you can tell). It's too bad that so many are so poorly educated, and have such large egos. The combination can be deadly for the patient. It is hard to maintain equanimity in the face of such unnecessary incompetence.

    Thanks for a chance to vent.
    Terry
  7. Fmandy

    Fmandy New Member

    My rheumatologist and PCP always ask and record my supplements. Well, the nurses do prior to the doc coming into the exam room.

    Lately I am embarrassed at taking so much time dictating all of my supplements...But the nurses never complain.

    In general, why do you see a Chinese medicine doctor, (if you don't mind me asking)? Are you a regular medical doctor? Sorry to be so nosy. I am only trying to educate myself, and I am slow (upstairs).

    Regards,

    Andy
  8. Lichu3

    Lichu3 New Member

    I'm trained in Western medicine but I am Chinese in background. My family has always used a combination of Chinese and Western medicine although we are careful about using Chinese meds for urgent/ infectious disease situations and mostly use it when there is no effective Western alternative.

    I do not recommend specific Chinese herbs to people since I don't have training in traditional Chinese medicine. My Chinese medicine doctor has done research with some well-known universities here in the U.S. and thus also has knowledge of Western meds. I think he tends to be conservative with Chinese meds but the risk of toxicity is very low. I'm not sure how much the Chinese meds have helped me so far but I am willing to try if there is low risk of side effects.



  9. Adl123

    Adl123 New Member

    Hi,
    If I might put my 2 cents in -
    I'm not a doctor. I did grow up in a medical family, though, with my father being a Chiro and my mom a nurse. I received lots of good medical help when I was young, from regular doctors.Now, because I have some illnesses that many doctors don't know about, I suppose, I've had a terrible time finding anyone to help me, especially up in the mountaiins, where I live.

    Now, the only one I really trust is my Chinese doctor, who is my acupuncturist and herbalist. He has put my fibro and RA pain into almost full remission, and has helped just about everything else that is wrong with me. He is a dedicated , spiritual, healer, and I don't worry that he is gettingn pressure from a medical group,or pharmaceutical company, as he has values that keep him independent and lead him to live a simple life.

    Most of all, he has always been honest with me, and he listens to me, without negating my symptoms. He is highly educated and continues his education constantly.

    I figure, there must be some reason that the Chinese people live so long. I'm glad I tried Chinese medicine.

    Thanks, again, for this post.
    Terry
  10. Fmandy

    Fmandy New Member

    Lichu3

    Thank you so much for taking time to reply. I was a bit more assertive (aggressive, lol) last night because I made a gallon of black tea, which I drink all of the time, and I added 6 green tea capsules. (opened the capsules first)

    The reason is that I know the green tea is so good for you, but I cannot take a capsule. It makes me extremely anxious and jittery.

    So I experimented last night and drank 4 or 5 glasses of my tea and stayed up until 5:30 this morning, lol...I recommend this for all to try, but just as an energy drink. I drink it over ice like anyone from the south.


    Kindest regards,

    Andy


    [This Message was Edited on 03/25/2007]
  11. Adl123

    Adl123 New Member

    I enjoyed what you wrote about green tea.

    I thought I would share two things that I've found out about it:
    1. It acts as a blood thinner, when taken in quantity.
    2. It needs to be taken immediately after brewing, because as it cools off, and sits around, the antioxidents lose their efficacy. It is some sort of reaction.

    Enjoy. I love green tea, too.
    Terry
  12. Andrew111

    Andrew111 Member

    Good idea. I remember years ago, before surgery, being given a list of things not to take for a week before surgery. One was green tea, and there where others that I don't remember now. So there are doctors who think this is important.
  13. Slayadragon

    Slayadragon New Member

    A couple of comments/questions:

    Have you heard of Chinese herbs (except ma huang, now banned) reacting with Western medications or supplements?

    I have just started going to a TCM doctor, and believe I am getting good results. (My husband's results have been spectacular, but I'm obviously a lot more difficult.)

    The good thing is that this doctor (7th generation TCM) went to regular medical school in China. I gave him a list of all of my medications and supplements at our first meeting, and he seemed familiar with most or all of them.

    I would hope he's not prescribing me anything that would have a negative reaction, therefore. It would be interesting to know how common such reactions are though.

    In general, I think this topic is really important. And having just had what I think was a negative reaction between SAMe and doxepin (SAMe seems only recently to have been reported as a potential contributor to mild serotonin syndrome), I'm especially interested in it.

    One problem with reporting the stuff that I'm on to doctors is that there's so much of it that they think I'm nuts. I do not take any more than a high percentage of CFS sufferers (or, at least, the ones who are actively trying to improve themselves), and I'm such a "classic" CFS responder that everything on my list should make perfect sense to anyone with a passing knowledge of the field (e.g. having skimmed Teitelbaum's book).

    One part of me would like to make a statement to doctors that says "People take more supplements than you think, and so you should start paying attention!" But the other part of me would like to keep from losing credibility so that I can have a little input into my treatment (since my body responds to a lot of stuff differently than most people).

    And the comment that most doctors don't have any interest in non-prescription treatments (and thus give no useful advice with regard to how it might interact with the things they're using to treat me) makes my personal motivation to share low.

    (If only all doctors were like you! But I wonder if your experience with Chinese medicine when growing up had an effect on you, just as my CFS doctor's experience having a grandparent who practiced Native American medicine had an effect--he says--on him.....)

    After a great deal of search, I found a local internist to complement my CFS doctor (in another state). He does know a lot about CFS and who understands perfectly why I'm using everything I am without my having to explain, even though he himself uses pretty much only conventional prescription drugs (which limits his ability to help since he's also not moved into the AV's yet). He undoubtedly would look for interactions if he prescribed something (he hasn't yet).

    I also have a really good psychopharmacologist who knows a good deal about supplements pertaining to mood. He knows all the supplements I customarily take and doesn't (at least overtly) disapprove. Upon reflection, he might well have told me about SAMe contributing to serotonin syndrome---that only recently was reported, but he's pretty up on such things. (Most doctors dispensing psychotropic drugs are not, of course.)

    There is an instance where checking with the doctor actually would have helped.....so there actually are some. (The reaction was taxing although not severe.) He is extremely busy though, and since I'm aware that he's frequently responding to emergencies due to the nature of his patient base (suicide/self-harm issues, reactions to the strong medications he prescribes, etc.), I'm a little disinclined to bother him.

    My CFS doctor knows a whole lot about pretty much everything related to CFS, and I give him updated typed lists of what I'm taking each time I see him. I've not had him point out a potential reaction, but perhaps he's not noted one since (with that SAMe exception.....I thought I knew that drug well since I'd studied it pretty thoroughly a couple of years ago) I'm pretty thorough checking interactions on my own.

    I've had a few other informed and/or interested doctors over the years. For the most part though, they seem to me to really want to follow a "don't ask/don't tell" policy. They don't condemn me (usually) for the use of supplements, but they certainly don't pursue it. I sometimes wonder if it has something to do with potential liability---that if they don't know what I'm taking, then I can't blame them for interactions if they occur. A bigger reason is likely that they are time-pressed and can't afford to put the thought into it.

    I wish there were a good answer to this question. I'm in a better position than most, since I have (after much effort and at considerable expense) found good doctors who understand something about the supplements that I take. Most people don't have that luxury, and (when dealing with other types of doctors as I occasionally must) I face the same issues that they do.

    Thanks for the post. And btw, it's really good to have physicians on the board. :)

    Best, Lisa

    [This Message was Edited on 03/31/2007]
  14. Forebearance

    Forebearance Member

    Thanks, Lichu!

    I do take a typed list of supplements to every doctor's appointment. The nurses seem to appreciate not having to write it all out by hand.

    My doctor takes it in stride. She doesn't know much about any of the supplements I take, but she doesn't criticize my taking them. I don't expect her to be an expert on supplements, because she's not.

    I tell her every single darn thing I take, every weird test I try, etc. I want one professional medical person to know exactly what I'm doing! Who knows, maybe she'll learn something from watching my experience.

    Forebearance
  15. Lichu3

    Lichu3 New Member

    One common interaction is between gingko, garlic, and ginseng and blood thinners. The "three g's" tend to cause bleeding and thus people who are taking aspirin or coumadin/warfarin need to be aware of this. Also, don't take the three g's for several days (at least a week) prior to surgeries because of increased risk of bleeding.

    I suscribe to a database which has common known interactions between supplements/herbs and presciption meds.

    My primary MD has lots of experience with HIV positive patients who often use alternative meds (in years before protease inhibitors or too many side effects from prescribed meds) so she keeps an alternative med guide in her office. My ID doctor is Eastern Indian, has some chronic illnesses, and some personal experience with Ayuravedic medicine so I think she's more open because of these factors. My personal opinion is that female and non-Caucasian docs tend to be more open to use of non-traditional medicine.