Be Careful With Blood Thinning Supplements

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 6, 2003.

  1. Mikie

    Mikie Moderator

    There has been a lot of info here lately on hypercoagulation as a problem for many of us. I believe this is an important facet of our illnesses, but I also believe that this particular symptom should be handled by a doc.

    I do not believe it is safe to assume one has hypercoagulation and start taking blood-thinning supplements on one's own.

    I suffer from chronic mycoplasma infection and would be a perfect candidate for hypercoagulation as the two often go hand in hand. I recently hemmoraged post surgery despite the fact that I had eliminated all blood thinning supplements and meds, except the Guai which is supposed to only have mild blood thinning properties. Either I have almost eliminated the mycoplasmas or the Guai thins the blood more than expected. Another possibility is that I am a bleeder, but I have not experienced this when cut. I do have the ability to clot. Thank God I was high on Vicodin when my daughter took me back to the surgical unit because the doc had to cauterize the bleeders in my neck while I was awake after opening two of the incisions back up. It was not a pleasant experience.

    Jelly has done us a great service by sharing her research on hypercoagulation and it would be good to share this with one's doc, but I do not believe this is an area for us to be on our own. In an accident or emergency, it could be deadly. I've seen segments on TV news shows where people died or almost died becasue they were taking certain supplements without their docs' knowledge. They all had to have surgery, some elective and some emergency.

    Love, Mikie
  2. Shirl

    Shirl New Member

    Shalom, Shirl
  3. Plantscaper

    Plantscaper New Member

    A sufficient, enough test to rule in/out Hypercoagulation?

    I cannot, at this time, afford the ISAC Panel, without insurance..
  4. Mikie

    Mikie Moderator

    Jelly is the authority on this. Perhaps if you address you question to her, it will speed up an answer.

    Love, Mikie
  5. sujay

    sujay New Member

    Excessive bleeding CAN be a complication of hypercoagulation. I posted this note elsewhere, but not sure if you had a chance to see it.

    People who are hospitalized with severe sepsis sometimes get into trouble with a condition called Disseminated Intravascular Coagulation. Just like the name says, it's caused by too much coagulation, but the clotting is so widespread that basically all the clotting factors are tied up in knots and not enough are available to get to the site of trauma (which may be microscopic), leading to excessive bleeding which may threaten life or limb. This is also called a consumptive coagulopathy, and guess what. All the tests included in the ISAC Panel (which Jellybelly has explained so succinctly elsewhere on this site) turn out to be positive with this condition, too, and in fact are being used internationally to monitor the severity of this condition. From the testing I've done on my own patients I would say that the percentage of FM/CFS patients who test positive for this problem is probably much higher than 70%, but it could just be how I'm selecting people out for the test. If you want more information you may go to the Hemex site, or let me know if you want any further information.

    I absolutely agree with you that all blood thinning agents must be discussed thoroughly with your physician before starting. It's important that doctors be kept updated on all supplements and over-the-counter medications. I'm a physician myself, but would not try to treat my own problem (mycoplasma, like you, with clear evidence of hypercoagulation complicating the picture) without guidance from another knowledgeable health-care provider.

    Sounds like you're continuing to get better. Hope you feel well! Thanks for your devotion to this site.

    Sujay
  6. sujay

    sujay New Member

    I'm afraid the PT/PTT is not able to pick up the subtle changes that I believe are responsible for the bulk of symptoms in people who have CFS complicated by hypercoagulation (which I think may be the vast majority of us). I'm not going to argue causation, but I think it needs to be very carefully investigated. Let me know if you have any further questions.

    Sujay
  7. Mikie

    Mikie Moderator

    Another physician--Yeah! I'm sorry I didn't realize that you are a physician. Thank you so much for this info. Boy, just goes to show that logic often has nothing to do with our problems. It never occured that one could bleed easily and still have hypercoagulation. I will discuss this with my doc.

    The incisions under my chin and behind my ears still have thick ropy scabs on them. The doc says everything looks fine and is healing just right. My right ear will start bleeding every once in a while, though, but it clots with a little pressure from a sterile pad. It just seems to me that it's a lot of blood from such a small area.

    Yes, I am getting better with a few setbacks here and there along the way. I just finished doing a Pilates tape after a morning walk. The more things we are able to address successfully, the faster the healing seems to go. I suspect that some of our treatments work synergistically to provide greater healing than one would expect from any one treatment. Also, as we heal, I think our bodies, minds, and spirits start to remember what it feels like to be well. As they remember, the healing progresses even more. It seems to be a positive spiral.


    Thanks for the info.

    Love, Mikie
  8. AC77

    AC77 New Member

    Listen to Mikie, she is right. Unless you have a cholestrol problem that is diagnosed or at risk otherwise, this is one area you HAVE to have blood work done to assure to assure the viscosity of your blood. I think many areas of health should be patient initiated, this is one is one in which you need some physician input because it can be deadly. I have high cholestrol in my family. One of the highest recorded ever. My dad had bypass surgery at 23!!!!!!! Doctors think I am lying; I can assure you I wouldnt joke about this. You would assume mine would be high too and I should be on blood thinning meds! Wrong!!! My cholesterol is only 170 and my PTT and INR are elevated, meaning even taking asprin would be not a wise decision on my part and could be deadly if my PTT and INR go higher, which they are.

    You cant tell on the surface if you need to thin your blood. Please see someone before inititiating any therapy. Too thin blood can lead too internal bleeding, and if severe bleeding into the brain and increased cranial pressure and many others. A baby asprin 81mgs a day is a safe method to use, with health care provider approval.
  9. goingslowlycrazy

    goingslowlycrazy New Member

    Should we also be cautious with Ginkgo Biloba, which is supposed to increase the bloodflow to the brain?
    Could this be potentially dangerous too?
    I take 400 mg each morning.
    Advice welcomed...
    hugs
    Mary x
  10. sujay

    sujay New Member

    Darned right Ginkgo Biloba is potentially dangerous, GSC. Good thinking. Just another reason why we need to have clear lines of communication with our physicians.

    Ace, you know how incredibly complicated the coagulation cascade is, and how important it is; it allows us to perfuse all our vital organs and still not bleed to death. It's a very complex and delicate balance, and it's shifting all the time in response to various stimuli. Those shifts might affect circulation and delivery of nutrients to our cells, ultimately causing a variety of symptoms with which we have become all too familiar. I realize your own condition is complicated, but you might want to investigate the possibillity that immune system activation of coagulation is playing a role. Check out the Hemex website, and let me know if you have any questions for me.

    Mikie, glad to hear you've got such a positive attitude. We all need to learn from your example. I'm on this site as a patient, but I'm happy to help clarify issues when I can. Being a physician wouldn't have helped me much unless I had learned a lot from my own patients before I became ill myself. I would have closed my practice in order to conserve my energy to care for my 12 year old, who's already lost his father to cancer. Life's just not fair sometimes, but I admire all you warriors out there. Hang in there and keep up the good fight!
  11. Mikie

    Mikie Moderator

    Was one of the supplements which almost caused a woman to bleed to death following surgery. She didn't tell her doc she was taking it. There was a whole segment of a news feature magazine show devoted to this.

    Love, Mikie
  12. goingslowlycrazy

    goingslowlycrazy New Member

    ...maybe I should rethink taking it then?
    It does help with the dizziness. I had to stop taking it for a week prior to balance testing and I was all over the place.
    I have told both of our family doctors and one specialist that I take it. The two family docs didn't know what it was and I had to explain it to them and the specialist said 'if it's helping, keep taking it...'
    Having said that, he is the same specialist that put me on Prochlorperazine (stemetil)and told me to take it every morning for the bad nausea I have and gave me a years worth of repeat prescriptions for it. I researched it on the net, and stopped taking it after I discovered that it should NOT be taken long term as it can cause possibly irreversible Parkinsonian symptoms.
    Guess I should give up the Ginkgo but the dizziness makes everthing even worse...including the nausea....
    *sigh*
    hugs
    Mary x
  13. Mikie

    Mikie Moderator

    A couple of things I want to clear up.

    One, I don't think people should automatically assume they suffer from hypercoagulation without a doc doing tests. I also don't think people should try to use blood thinning products on their own, assuming they do have it.

    Two, there are a lot of supplements which are giving people relief for their symptoms but also have some blood thinning properties as a side effect. Ginkgo and Guai both have these properties. Now, if one is having elective surgery, it's usually not a problem, as it can be discontinued two weeks prior to the surgery. Where one gets into trouble is from injuries and emergency surgery. It might not be a bad idea, in addition to letting your doc know about the Ginkgo, to wear a medic bracelet alerting anyone to the fact that you are on Ginkgo which is a blood thinner. I wouldn't stop it if it helps you.

    I do not know whether it was the Guai which caused me to hemorrage or not. It is not supposed to have that much blood thinning effect. Evidently the bleeders had clotted during the surgery and didn't start to bleed until after the incision was closed, so I don't really think it was the Guai. By the time I add other vitamins, though, it might be enough that I should wear a bracelet. I had discontinued everything except the Guai for two weeks prior to the surgery.

    Love, Mikie
  14. klutzo

    klutzo New Member

    How about a compromise? That is an awful lot of Gingko you are taking....much higher than any maximum dose I've ever heard of. Can you take less and have it still work for you? I was taught the safe dose was 120 mgs. daily or less.
    Klutzo