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  • WWWI2
      Post count: 137

      This may or may not be a sore subject since it seems to be somewhat contraversial across the internet. I also believe no formal studies have been done with regards to Graves’ and LDN. However, I would be very curious to know what you know or what your take is on this. There do seem to be studies with regards to Chrones, MS and other AI diseases that appear to indicate that LDN has some merit.

      Anyone?

      Momof5
        Post count: 118

        I have read about it and have read a few other thyroid message boards that have a few people taking it for Hashi or Graves. Have not found anyone that has gone into remission with it. I did some reading up on it, and heard good things in regards to MS and Crohn’s I think, but don’t know much about it otherwise. There is a Yahoo group for it, but not specific to GD.

        Kimberly
        Online Facilitator
          Post count: 4291

          Hello – A question about LDN came up during an “Ask the Doc” session at our San Diego conference last year, and the physician panelists were *not* in favor of this approach, since the risks have not been fully studied.

          snelsen
            Post count: 1909

            Well, I can’t see a heck of a lot of reason to take it, unless a person is dependent on opoids, which are narcotics, or has alcohol dependence, i.e., an alcoholic.
            Here is a valid site for it. From the FDA, listed under drugs.com
            It has some liver implications, as well as some definite contraindications.

            http://www.drugs.com/pro/naltrexone.html
            Shirley

            Momof5
              Post count: 118

              Shirley, I’m not advocating this drug in any way. I had just stumbled across it while doing research for GD. I’d be nervous about it too, but the dose they refer to on the drugs.com site is for the higher (50 mg) dose for addicts. The Low Dose is only UP TO 5 mg.

              The National MS society has info on it in uses for MS – improving quality of life for some MS sufferers – on their website.

              http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/complementary–alternative-medicine/low-dose-naltrexone/index.aspx

              Kimberly
              Online Facilitator
                Post count: 4291

                This is just not something that the Foundation will recommend, until there are well-designed studies that are *specific* to Graves’ disease — and can prove both safety and effectiveness.

                The potential liver issues would certainly be a concern for those already taking anti-thyroid drugs. So far (knock on wood), I’ve had good luck with not having liver issues on methimazole, but I’d rather not tempt fate!

                WWWI2
                  Post count: 137

                  when someone mentioned it to me initially I too thought how bizarre to think that an opioid antagonist would have anything to do with AI disease, let alone provide any positive impact. However, on further reading, there are legitimate studies being conducted on just that.

                  There is currently a pilot study to evaluate the safety and tolerability of low-dose Naltrexone therapy in children with moderate to severe Crohn’s disease was conducted at the Penn State College of Medicine.

                  And while these are preliminary studies, there has also been research on the use of LDN in treating fibromyalgia, hiv and autism.

                  I’m not suggesting it’s a cure, because I certainly don’t know. But I was just putting it out there because, for myself, I would rather consider something and reject it (or accept it) than not know about it in the first place.

                  Kimberly
                  Online Facilitator
                    Post count: 4291

                    But again, there has been no credible research specifically related to Graves’.

                    There is a reason that this forum has restrictions on the discussion of alternative therapies…and there are plenty of other forums out there that allow open discussion of all potential therapies, whether proven or not.

                    Could the GDATF potentially be “late to the party” on a new therapy because we waited for credible research? Absolutely. But we do *not* want any of our members to be harmed because they tried something they read about on our web site before the risks were fully understood.

                    snelsen
                      Post count: 1909

                      To momof5, WWW12,
                      I tend to get “over-worried” about others misunderstanding, or not reading carefully, some topics. Both of you have been very thoughtful about this topic.

                      To digress a bit, and just wander thoughtfully,…..

                      I just have a high index of suspicion about unproven hypotheses. Or even proven ones. In the recent past, I had Herceptin for a very advanced ER+ PR+breast cancer. It probably did save my life, but when I had it, there were not studies, and not much of a protocol of when to stop it. I had this drug for around 10 years. Now it is known that is much too long, and I am one of the small per cent of women who ended up with a compromised heart because of one of my chemos, or Herceptin. We really don’t know which one. I am a big fan of longitudinal studies. But sometimes, a drug is developed with a lot of evidence in all the trials, that it is safe to use. But like all things in life, sometimes you don’t know the real outcome for years and years. And sometimes you never know it!! (:

                      I do hope it has some advantages and help for Crohn’s and/or MS.
                      And Graves’, if it is appropriate, and there are safe evidenced based studies.

                      On another, but kind of related topic, I was chatting with a nurse I worked with in the 1950’s, at a large academic, well-respected hospital. We were giving several drugs which were catastrophic for people, especially thalidomide, which was distributed to most pregnant women for nausea in the first 2-3 months of pregnancy. There were many babies born with dysmelia (missing or deformed limbs) and they finally figured out this drug did cross the placental barrier.
                      There were a couple more drugs we gave, and one caused blindness, the other leukemia. I have forgotten now what they are. Scary to think about, but at the time, it was believed they were safe and helpful.
                      Shirley

                      Momof5
                        Post count: 118

                        I hear you, Shirley. I am actually struggling with whether or not to have my kids get the gardasil vaccine. So many conflicting things to read….just like GD.

                        snelsen
                          Post count: 1909

                          Carrie, my kids decided to have all their kids have gardisil. They are all between 10-20. Kids agreed.
                          CDC has some good information.
                          Shirley

                          WWWI2
                            Post count: 137

                            snelsen,

                            I really do hear what you are saying and am so sorry that you are suffereing the consequenses that you are. We are so often told things are safe when they are not and only after the fact learn the price we have to pay. It’s horrible what you are having to deal with.

                            Although not as dire, I was on an anticonvulsant (for a misdiagnosis) that has been implicated as a causitive agent for another AI disease that I have acquired. So when you talk about being hesitant about drugs, even those that are tested thoroughly and have been used for years, I’m exceedingly hesitant.

                            Currently my hair is falling out at an excellerated pace. My Endo said it could not be thyroid related (I am not convinced however). So he has offered me a drug Spironolactone that is supposed to help. He says there are NO side effects (all drugs have s/x).

                            I don’t want to end up with no hair and yet, everyday I stare at that bottle terribly afraid of it not taking the drug and watching my hair progressively thin out.

                            So I’m right there with you about drugs. And yet, the hope that there would be something that could, in theory, allow me not to have to kill my thyroid, does stir my interest.

                            WWWI

                            snelsen
                              Post count: 1909

                              Hi WWW12,
                              From reading the forum, there have been quite a few posters who have mentioned hair loss associated with Graves’. I don’t recall right now if it is more prevalent with hyPO, that may be the case.

                              ***I planned to tell you to use the Search box, to read some of them. BUT I CAN’T FIND THE SEARCH BOX! I’ll write to Kimberly about his.

                              I also would have reservations about spironolactone. It is a drug with some fairly serious implications. I regard it as a very big gun, and I would want to be carefully watched, with lots of labs, if it were prescribed for me for one of the conditions listed in the reference below. From what I have read, people who are on this drug, should be very carefully monitored with labs.

                              http://www.drugs.com/pro/spironolactone.html

                              Hair loss is also age related and genetic. But all of this does not make it less of a problem for you. I questions what your endo said, because of the numerous posts on the forum. Kimberly can probably provide some better information about this.
                              Shirley

                              Momof5
                                Post count: 118

                                Shirley, thanks for telling me about your kids and gardasil. I probably would have said yes before being diagnosed with GD, but now am hesitant, for fear of activating thyroid problems in my kids. :/ mine are still young (oldest is 11), so I will wait a little longer, but it scares me

                                WWWI2
                                  Post count: 137

                                  snelsen,

                                  Thank you for the link. And even tho I have Graves, once on the methimazol I went hypo and got stuck there for a few months, which is why I’m on endo #2. With Graves’ my hair texture changed, it was when I went hypo that it started falling out. But yes there are other causes. It just seem awfully coincidental that as my Endo’s nurse suggested, I acquired a sudden case of female pattern baldness.

                                  And while I think he’s not a bad endo, and pretty smart I’ve come to believe not everything he has said is gold. For example, he said, if I don’t have TED by now, it won’t happen. He also said, the extreme muscle pain I have everytime my meds are adjusted has nothing to do with my thyroid or the meds and then the hair thing.

                                  On the flip side he’s willing to do block and replace with the addition of T3 which has allowed me for the first time since before my diagnosis, to feel almost human. So he’s willing to work with me. I have begun to lose faith that there are Endos who actually know anything about Graves’ specifically so I am hesitant to look for another and end up in the same place.

                                  Thanks for taking the time to check my med out and to respond :)

                                  WWWI

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