Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 As I promised I am sharing my results of taking LDN. After 4 weeks of LDN for Sjogrens/Hashimotos Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN 907 Energy levels have slowly reduced again after i felt I was getting better, therefore I can say fatigue is reappearing. Sleep Disturbances reappearing more often=less sleep. I guess all one can say is damn shame, nice try ! I had expected that the hasimoto antibodies to have decreased..very surprised to see an almost 2x increase ! My understanding of LDN was that it would decrease the unwanted antibodies while boosting the immune system..it appears perhaps to be boosting the antibodies at least in me...at the moment. For the record I aim to give it another month to 2 months trial..unless health contradicts. Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Good luck - - - you are in my prayers.Jeff [low dose naltrexone] Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results As I promised I am sharing my results of taking LDN. After 4 weeks of LDN for Sjogrens/Hashimotos Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN 907 Energy levels have slowly reduced again after i felt I was getting better, therefore I can say fatigue is reappearing. Sleep Disturbances reappearing more often=less sleep. I guess all one can say is damn shame, nice try ! I had expected that the hasimoto antibodies to have decreased..very surprised to see an almost 2x increase ! My understanding of LDN was that it would decrease the unwanted antibodies while boosting the immune system..it appears perhaps to be boosting the antibodies at least in me...at the moment. For the record I aim to give it another month to 2 months trial..unless health contradicts. Cheers Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 > > As I promised I am sharing my results of taking LDN. > > After 4 weeks of LDN for Sjogrens/Hashimotos > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN 907 > > Energy levels have slowly reduced again after i felt I was getting > better, therefore I can say fatigue is reappearing. > Sleep Disturbances reappearing more often=less sleep. > > I guess all one can say is damn shame, nice try ! > > I had expected that the hasimoto antibodies to have decreased..very > surprised to see an almost 2x increase ! > My understanding of LDN was that it would decrease the unwanted > antibodies while boosting the immune system..it appears perhaps to be > boosting the antibodies at least in me...at the moment. > > For the record I aim to give it another month to 2 months > trial..unless health contradicts. > > Cheers > ================ Have you ever had a live blood analysis done with a darkfield microscope or via IGeneX Labs to check for lyme disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 > > > > As I promised I am sharing my results of taking LDN. > > > > After 4 weeks of LDN for Sjogrens/Hashimotos > > > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN > 907 > > > > Energy levels have slowly reduced again after i felt I was getting > > better, therefore I can say fatigue is reappearing. > > Sleep Disturbances reappearing more often=less sleep. > > > > I guess all one can say is damn shame, nice try ! > > > > I had expected that the hasimoto antibodies to have decreased..very > > surprised to see an almost 2x increase ! > > My understanding of LDN was that it would decrease the unwanted > > antibodies while boosting the immune system..it appears perhaps to be > > boosting the antibodies at least in me...at the moment. > > > > For the record I aim to give it another month to 2 months > > trial..unless health contradicts. > > > > Cheers > > > ================ > > Have you ever had a live blood analysis done with a darkfield > microscope or via IGeneX Labs to check for lyme disease? > > > Hi Well no I have not and will mention to my Doc next time..Lyme is rare in Australia but not unknown...Ive got a few autoimmune markers which is enough to make me think...that autoimmune is the right area reflecting the symptoms I have. Thx for your post Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Just wanted to add that I am taking 4.5mg avicel filler, and also taking probiotics daily. Not taking any contra drugs.. Of course Im hoping to ride this out and..perhaps it will get worse before it gets better. Will report back in 2+ weeks > > As I promised I am sharing my results of taking LDN. > > After 4 weeks of LDN for Sjogrens/Hashimotos > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN 907 > > Energy levels have slowly reduced again after i felt I was getting > better, therefore I can say fatigue is reappearing. > Sleep Disturbances reappearing more often=less sleep. > > I guess all one can say is damn shame, nice try ! > > I had expected that the hasimoto antibodies to have decreased..very > surprised to see an almost 2x increase ! > My understanding of LDN was that it would decrease the unwanted > antibodies while boosting the immune system..it appears perhaps to be > boosting the antibodies at least in me...at the moment. > > For the record I aim to give it another month to 2 months > trial..unless health contradicts. > > Cheers > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 > > > > > > As I promised I am sharing my results of taking LDN. > > > > > > After 4 weeks of LDN for Sjogrens/Hashimotos > > > > > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > > > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN > > 907 > > > > > > Energy levels have slowly reduced again after i felt I was getting > > > better, therefore I can say fatigue is reappearing. > > > Sleep Disturbances reappearing more often=less sleep. > > > > > > I guess all one can say is damn shame, nice try ! > > > > > > I had expected that the hasimoto antibodies to have decreased..very > > > surprised to see an almost 2x increase ! > > > My understanding of LDN was that it would decrease the unwanted > > > antibodies while boosting the immune system..it appears perhaps to be > > > boosting the antibodies at least in me...at the moment. > > > > > > For the record I aim to give it another month to 2 months > > > trial..unless health contradicts. > > > > > > Cheers > > > > > ================ > > > > Have you ever had a live blood analysis done with a darkfield > > microscope or via IGeneX Labs to check for lyme disease? > > > > > > > > Hi > > Well no I have not and will mention to my Doc next time..Lyme is rare > in Australia but not unknown...Ive got a few autoimmune markers which > is enough to make me think...that autoimmune is the right area > reflecting the symptoms I have. > > Thx for your post > ========== If you can find a physician with a Bradford Variable Projection Microscope to test for lyme, that'd be great and you can get your candida yeast load checked with this microscope. You are aware that LDN can cause a temporary increase in symptoms in the early stages of the treatment? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 > > > > > > > > As I promised I am sharing my results of taking LDN. > > > > > > > > After 4 weeks of LDN for Sjogrens/Hashimotos > > > > > > > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > > > > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks > LDN > > > 907 > > > > > > > > Energy levels have slowly reduced again after i felt I was > getting > > > > better, therefore I can say fatigue is reappearing. > > > > Sleep Disturbances reappearing more often=less sleep. > > > > > > > > I guess all one can say is damn shame, nice try ! > > > > > > > > I had expected that the hasimoto antibodies to have > decreased..very > > > > surprised to see an almost 2x increase ! > > > > My understanding of LDN was that it would decrease the unwanted > > > > antibodies while boosting the immune system..it appears perhaps > to be > > > > boosting the antibodies at least in me...at the moment. > > > > > > > > For the record I aim to give it another month to 2 months > > > > trial..unless health contradicts. > > > > > > > > Cheers > > > > > > > ================ > > > > > > Have you ever had a live blood analysis done with a darkfield > > > microscope or via IGeneX Labs to check for lyme disease? > > > > > > > > > > > > > Hi > > > > Well no I have not and will mention to my Doc next time..Lyme is rare > > in Australia but not unknown...Ive got a few autoimmune markers which > > is enough to make me think...that autoimmune is the right area > > reflecting the symptoms I have. > > > > Thx for your post > > > ========== > > If you can find a physician with a Bradford Variable Projection > Microscope to test for lyme, that'd be great and you can get your > candida yeast load checked with this microscope. > > You are aware that LDN can cause a temporary increase in symptoms in > the early stages of the treatment? > > > Hello Yes I am aware that LDN can cause an increase in symptoms early on..I still have hope..as I said I will continue with it unless my health contradicts further. I will look into the Bradford Variable Projection when i get a moment from this fatigue. Cheers Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Hi, I'm sorry to hear you've had a worsening of symptoms, especially since some of us who were hypothyroid have experienced prompt improvement. By Hashi's antibodies I assume you mean the TPO antibodies. If they behave like the TSH receptor antibodies involved in Graves' disease (of which I had a hypothyroid phase), we are told they can stay in the bloodstream for as long as 3 1/2 months, which suggests you may need to wait longer to get an accurate count. Best wishes, B., hypothyroid for 2 1/2 years after taking antithyroid meds for Graves'. > > As I promised I am sharing my results of taking LDN. > > After 4 weeks of LDN for Sjogrens/Hashimotos > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN 907 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Just remember that antibodies live and die on a 90 day cycle. In other words, the ABs (which ones? TPOab?) you see now on tests are those created in Oct / Nov. You won't see a reflection of LDN affected ABs until March. Since ABs are slow moving I don't even test mine more than annually. If I do an LDN trial I'll give it at least four months (an extra month for clarity) unless there's an adverse reaction. Have you had your thyroid levels (T4, Free and T3, Free) tested? That may give you a picture of what's going on now. Hope this helps. a in NYC Graves Disease > > As I promised I am sharing my results of taking LDN. > > After 4 weeks of LDN for Sjogrens/Hashimotos > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN 907 > > Energy levels have slowly reduced again after i felt I was getting > better, therefore I can say fatigue is reappearing. > Sleep Disturbances reappearing more often=less sleep. > > I guess all one can say is damn shame, nice try ! > > I had expected that the hasimoto antibodies to have decreased..very > surprised to see an almost 2x increase ! > My understanding of LDN was that it would decrease the unwanted > antibodies while boosting the immune system..it appears perhaps to be > boosting the antibodies at least in me...at the moment. > > For the record I aim to give it another month to 2 months > trial..unless health contradicts. > > Cheers > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 a, I'm a lurker here, but I have Hashi's (not on meds yet) so I found this post quite interesting. I had no idea those antibodies lasted 90 days. Which makes it difficult to know if any therapy, whether medicinal or natural, is having a positive effect on them. I hate to think I have to stick with something for a long time that might not even be working, yet be unable to get an accurate lab test done to at least have some idea if it's worth continuing. > > Just remember that antibodies live and die on a 90 day cycle. In other words, the ABs > (which ones? TPOab?) you see now on tests are those created in Oct / Nov. You won't > see a reflection of LDN affected ABs until March. > > Since ABs are slow moving I don't even test mine more than annually. If I do an LDN trial > I'll give it at least four months (an extra month for clarity) unless there's an adverse > reaction. > > Have you had your thyroid levels (T4, Free and T3, Free) tested? That may give you a > picture of what's going on now. > > Hope this helps. > > a in NYC > Graves Disease > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Hi , For those of us who are hypothyroid due to blocking antibodies rather than thyroid destruction, results can also be seen in a return to normal thyroid levels, which will send you hyper if you are also taking thyroid replacement. Since you are not, you would notice a decrease in hypothyroid symptoms (dry hair and skin, aches, slow digestion, depression, muscle cramps, weight gain, perhaps high cholesterol and blood pressure). Testing thyroid levels (FT4 and FT3) should show the changes more quickly, but remember that TSH will lag and also would need to be tested later rather than immediately. I also had improvement in eczema and vicious arthritis symptoms (suggesting that I have some rheumatoid arthritis). Best wishes, B. ________________________________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of b53cjf Sent: Friday, January 11, 2008 2:59 PM low dose naltrexone Subject: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results a, I'm a lurker here, but I have Hashi's (not on meds yet) so I found this post quite interesting. I had no idea those antibodies lasted 90 days. Which makes it difficult to know if any therapy, whether medicinal or natural, is having a positive effect on them. I hate to think I have to stick with something for a long time that might not even be working, yet be unable to get an accurate lab test done to at least have some idea if it's worth continuing. > > Just remember that antibodies live and die on a 90 day cycle. In other words, the ABs > (which ones? TPOab?) you see now on tests are those created in Oct / Nov. You won't > see a reflection of LDN affected ABs until March. > > Since ABs are slow moving I don't even test mine more than annually. If I do an LDN trial > I'll give it at least four months (an extra month for clarity) unless there's an adverse > reaction. > > Have you had your thyroid levels (T4, Free and T3, Free) tested? That may give you a > picture of what's going on now. > > Hope this helps. > > a in NYC > Graves Disease > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Hi ! Thanks for mentioning this group, by the way. Can you explain your statement below? I'm not understanding what exactly " will send you hyper if you are also taking thyroid meds " . Is it due to the blocking antibodies not allowing the hormone to attack to receptors, thereby allowing it to build up to too high levels in the blood? Can hashi's also have blocking antibodies? That is wonderful that LDN seems to be working for those antibodies. > > Hi , > > For those of us who are hypothyroid due to blocking antibodies rather than > thyroid destruction, results can also be seen in a return to normal thyroid > levels, which will send you hyper if you are also taking thyroid > replacement. Since you are not, you would notice a decrease in hypothyroid > symptoms (dry hair and skin, aches, slow digestion, depression, muscle > cramps, weight gain, perhaps high cholesterol and blood pressure). Testing > thyroid levels (FT4 and FT3) should show the changes more quickly, but > remember that TSH will lag and also would need to be tested later rather > than immediately. > > I also had improvement in eczema and vicious arthritis symptoms (suggesting > that I have some rheumatoid arthritis). > > Best wishes, > B. > > _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Hi , Elaine has an article about the TSH receptor antibodies on suite101.com that said, if I recall correctly, that 1/3 of people who are hypothyroid have them. They block the TSH receptors and keep people from getting adequate thyroid hormone by disrupting the feedback loop that should keep thyroid levels correct. Since you have some TSI, I would bet you have some of these as well. People who are taking thyroid replacement because they are hypothyroid and who then regain natural thyroid function will end up with too much thyroid hormone in their system, because their body is now making what it needs plus they are still taking more. That seems to have happened to me and a couple of other people. I'm confident that this is what happened to me because I was taking a medium-sized dose of thyroid replacement, had an increase in my pulse after two weeks on LDN (often an indicator that a person is hyperthyroid), and then had a return to normal heart rate after stopping the thyroid replacement. And where I felt hyper during the period of elevated pulse, I feel euthyroid now. I'd been taking T4 and T3 since stopping PTU in 2005; I stopped them 8 days ago and am still feeling great and euthyroid. Of course, FT4 and FT3 testing would tell the true story, but my pulse is usually a good indicator for me (60 is hypo, 80 is hyper, 68 is euthyroid). I also have baseline antibody tests (TSI, TBII, TPO) and will recheck in 3-4 month--but I can " feel " they're decreasing. And yes, I'm so pleased that we're investigating another autoimmune disease that LDN may help. So many of us who are hypothyroid have to beg and plead with our doctors to keep our thyroid levels above the extreme bottom of the range. And if it will help Graves' and thyroid eye disease, that will be amazing. Best wishes, B. ________________________________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of b53cjf Sent: Friday, January 11, 2008 3:26 PM low dose naltrexone Subject: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results Hi ! Thanks for mentioning this group, by the way. Can you explain your statement below? I'm not understanding what exactly " will send you hyper if you are also taking thyroid meds " . Is it due to the blocking antibodies not allowing the hormone to attack to receptors, thereby allowing it to build up to too high levels in the blood? Can hashi's also have blocking antibodies? That is wonderful that LDN seems to be working for those antibodies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 , Thanks for the explanation, now I get it. You really seem to know your body well, knowing which pulse rate indicates which condition of the thyroid. I hope I get to that point, but I have a long way to go. I have an appt with a U of Chicago thyroid doc to get a full evaluation of my thyroid and nodules and to see if I have other autoimmune conditions going on. I'm going to ask her about LDN and see if she's familiar with it. Thanks for the info, > > Hi , > > Elaine has an article about the TSH receptor antibodies on > suite101.com that said, if I recall correctly, that 1/3 of people who are > hypothyroid have them. They block the TSH receptors and keep people from > getting adequate thyroid hormone by disrupting the feedback loop that should > keep thyroid levels correct. Since you have some TSI, I would bet you have > some of these as well. > > People who are taking thyroid replacement because they are hypothyroid and > who then regain natural thyroid function will end up with too much thyroid > hormone in their system, because their body is now making what it needs plus > they are still taking more. That seems to have happened to me and a couple > of other people. I'm confident that this is what happened to me because I > was taking a medium-sized dose of thyroid replacement, had an increase in my > pulse after two weeks on LDN (often an indicator that a person is > hyperthyroid), and then had a return to normal heart rate after stopping the > thyroid replacement. And where I felt hyper during the period of elevated > pulse, I feel euthyroid now. > > I'd been taking T4 and T3 since stopping PTU in 2005; I stopped them 8 days > ago and am still feeling great and euthyroid. Of course, FT4 and FT3 testing > would tell the true story, but my pulse is usually a good indicator for me > (60 is hypo, 80 is hyper, 68 is euthyroid). I also have baseline antibody > tests (TSI, TBII, TPO) and will recheck in 3-4 month--but I can " feel " > they're decreasing. > > And yes, I'm so pleased that we're investigating another autoimmune disease > that LDN may help. So many of us who are hypothyroid have to beg and plead > with our doctors to keep our thyroid levels above the extreme bottom of the > range. And if it will help Graves' and thyroid eye disease, that will be > amazing. > > Best wishes, > B. > ________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 > > > > As I promised I am sharing my results of taking LDN. > > > > After 4 weeks of LDN for Sjogrens/Hashimotos > > > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened > > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks LDN > 907 > > > Hi Please dont be sorry for me ..Ive been searching about antibody lifecycle but not much luck have you a link..quite interested in learning more. The hashimotos is one thing, personally for me the Sjogrens is the one I really hoped would ease..but as I say I will give it a bit longer. Thanks for posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi , Having nodules complicates matters, though if your thyroid levels are too low they will grow, and probably should shrink if you get your levels up to your set point in the range. Since my Graves' dx 5 1/2 years ago I've learned a lot about " my body on thyroid hormone, " but the biggest lesson I've learned is that lab work is the only reliable way to know for sure. I now gain weight when I'm hyper rather than lose it, as a case in point. Good luck with your thyroid doc. Keep in mind that some ANA markers will be positive in thyroid disease and don't necessarily mean other conditions. Hopefully if you bring some info on LDN she will learn about if even if she's not already knowledgeable. best wishes, B. __________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of b53cjf Sent: Saturday, January 12, 2008 12:19 AM low dose naltrexone Subject: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results , Thanks for the explanation, now I get it. You really seem to know your body well, knowing which pulse rate indicates which condition of the thyroid. I hope I get to that point, but I have a long way to go. I have an appt with a U of Chicago thyroid doc to get a full evaluation of my thyroid and nodules and to see if I have other autoimmune conditions going on. I'm going to ask her about LDN and see if she's familiar with it. Thanks for the info, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 As far as ranges of TSH. You might refer your doctors to the current American Association of clinical Endocrinologists TSH to be between .3-3.0 That was changed two years ago, but they have not informed everyone. The average american without thyroid disease has a TSH of 1.5 , so we should shoot for that. -------------- Original message -------------- From: "b53cjf" <b53cjf@...> ,Thanks for the explanation, now I get it.You really seem to know your body well, knowing which pulse rateindicates which condition of the thyroid. I hope I get to that point,but I have a long way to go.I have an appt with a U of Chicago thyroid doc to get a fullevaluation of my thyroid and nodules and to see if I have otherautoimmune conditions going on. I'm going to ask her about LDN andsee if she's familiar with it.Thanks for the info,>> Hi ,> > Elaine has an article about the TSH receptor antibodies on> suite101.com that said, if I recall correctly, that 1/3 of peoplewho are> hypothyroid have them. They block the TSH receptors and keep people from> getting adequate thyroid hormone by disrupting the feedback loopthat should> keep thyroid levels correct. Since you have some TSI, I would betyou have> some of these as well.> > People who are taking thyroid replacement because they arehypothyroid and> who then regain natural thyroid function will end up with too muchthyroid> hormone in their system, because their body is now making what itneeds plus> they are still taking more. That seems to have happened to me and acouple> of other people. I'm confident that this is what happened to mebecause I> was taking a medium-sized dose of thyroid replacement, had anincrease in my> pulse after two weeks on LDN (often an indicator that a person is> hyperthyroid), and then had a return to normal heart rate afterstopping the> thyroid replacement. And where I felt hyper during the period ofelevated> pulse, I feel euthyroid now.> > ; I'd been taking T4 and T3 since stopping PTU in 2005; I stopped them8 days> ago and am still feeling great and euthyroid. Of course, FT4 and FT3testing> would tell the true story, but my pulse is usually a good indicatorfor me> (60 is hypo, 80 is hyper, 68 is euthyroid). I also have baselineantibody> tests (TSI, TBII, TPO) and will recheck in 3-4 month--but I can "feel"> they're decreasing.> > And yes, I'm so pleased that we're investigating another autoimmunedisease> that LDN may help. So many of us who are hypothyroid have to beg andplead> with our doctors to keep our thyroid levels above the extreme bottomof the> range. And if it will help Graves' and thyroid eye disease, that will be> amazing.> > Best wishes,> B.> ________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 there have been several studies that selenium can reduce antibodies also. You would take about 200 mcg per day.. You could google thyroid antibodies and selenium. -------------- Original message -------------- From: "croma_clear1" <jlcandrb@...> > > > >> > > > As I promised I am sharing my results of taking LDN.> > > > > > > > After 4 weeks of LDN for Sjogrens/Hashimotos> > > > > > > > Sjogrens Dryness - Skin/Eyes/Mouth has noticeably worsened BR>> > > > Hashimotos Antibodies increasing - before LDN 640 after 4 weeks > LDN > > > 907> > > > > > > > Energy levels have slowly reduced again after i felt I was > getting> > > > better, therefore I can say fatigue is reappearing.> > > > Sleep Disturbances reappearing more often=less sleep.> > > > > > > > I guess all one can say is damn shame, nice try !> > > > > > > > I had expected that the hasimoto antibodies to have > decreased..very> > > > surprised to see an almost 2x increase !> > > > My understanding of LDN was that it would decrease the unwanted> > > > antibodies while boosting the immune system..it appears perhaps > to be> > > > boosting the antibodies at least in me...at the moment.> > > > > > > > ; For the record I aim to give it another month to 2 months> > > > trial..unless health contradicts.> > > > > > > > Cheers> > > >> > > ================> > > > > > Have you ever had a live blood analysis done with a darkfield > > > microscope or via IGeneX Labs to check for lyme disease?> > > > > > > > >> > > > Hi > > > > Well no I have not and will mention to my Doc next time..Lyme is rare> > in Australia but not unknown...Ive got a few autoimmune markers which> > is enough to make me think...that autoimmune is the right area> > reflecting the symptoms I have.> > > > Thx for your post> >> ==========> > If you can find a physician with a Bradford Variable Projection > Microscope to test f or lyme, that'd be great and you can get your > candida yeast load checked with this microscope.> > You are aware that LDN can cause a temporary increase in symptoms in > the early stages of the treatment?> > >Hello Yes I am aware that LDN can cause an increase in symptoms early on..Istill have hope..as I said I will continue with it unless my healthcontradicts further.I will look into the Bradford Variable Projection when i get a momentfrom this fatigue.CheersCheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 An additional problem with TSH is that those of us with TSH receptor antibodies (Graves' and some Hashimotos) will have an artificially low TSH, meaning that only the FT3 and FT4 truly indicated our thyroid levels. And yes, doctors are still telling folks with a TSH of 4.5 that they're just fine and any symptoms stemming from this metabolic slowdown are " not from their thyroid. " Best wishes, B. ________________________________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of paulbatt@... Sent: Monday, January 14, 2008 12:45 AM low dose naltrexone Subject: Re: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results As far as ranges of TSH. You might refer your doctors to the current American Association of clinical Endocrinologists TSH to be between .3-3.0 That was changed two years ago, but they have not informed everyone. The average american without thyroid disease has a TSH of 1.5 , so we should shoot for that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 I'm new to this list and have Hashimoto's. I am medicated and my TSH is usually very low but my FT3 and FT4 hover around the bottom end of the range - and upping meds just makes me very symptomatic. Any small change in meds or homones (especially estrogen hormone levels) really affects me and I get hyper. My TPO antibodies are normal but my TPG are very elevated.I'd like to try ldn but am concerned it may throw me into hyper heaven. What test would indicated TSH receptor antibodies are affected? And is there a protocol for using ldn with Hashi's with sensitive responders?AB Re: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results As far as ranges of TSH. You might refer your doctors to the current American Association of clinical Endocrinologists TSH to be between .3-3.0 That was changed two years ago, but they have not informed everyone. The average american without thyroid disease has a TSH of 1.5 , so we should shoot for that. Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hi AB, I'm just another amateur here, so I'll share my experience and then hope more knowledgeable folks will jump in. On the Graves' boards we learn that each person has a set point in the normal range of FT4 and FT3 where they feel best, and obviously you're found yours. Mine is in the middle for both; some folks feel best near the top. My experience was that I quickly stopped needing to take thyroid replacement (a moderate amount, 60 mcg T4 and 10 mcg T3) and dropped it altogether. Since then I've returned to a normal heart rate and feel euthyroid ( " just right " ). The end result is that rather than making me hyper, LDN seems to have healed my autoimmunity. I'll get FT4 and FT3 in labs in 4-5 weeks, to make sure I'm getting accurate results re my new status, and will get antibody labs in 3-4 months. (I have no TPG, moderate TPO of 350, and moderate TSH receptor antibodies, TBII of 25). bets wishes, B. ________________________________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of adelesbells Sent: Monday, January 14, 2008 9:12 AM low dose naltrexone Subject: Re: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results I'm new to this list and have Hashimoto's. I am medicated and my TSH is usually very low but my FT3 and FT4 hover around the bottom end of the range - and upping meds just makes me very symptomatic. Any small change in meds or homones (especially estrogen hormone levels) really affects me and I get hyper. My TPO antibodies are normal but my TPG are very elevated. I'd like to try ldn but am concerned it may throw me into hyper heaven. What test would indicated TSH receptor antibodies are affected? And is there a protocol for using ldn with Hashi's with sensitive responders? AB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 I don't feel bad in the low end but not great either (fatigue) - any attempt to raise medication bottomed out my TSH (.01) and had very little affect on my ft3 or 4 - but I did feel hyper!How did you know when to stop meds? Do you stop the day you start ldn? I'm currently taking 75 mg Armour and 25 mg Synthroid.Sounds like I should get a TBII done as a baseline.Thanks - anyone know of docs trying this in Toronto?AB Re: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results I'm new to this list and have Hashimoto's. I am medicated and my TSH is usually very low but my FT3 and FT4 hover around the bottom end of the range - and upping meds just makes me very symptomatic. Any small change in meds or homones (especially estrogen hormone levels) really affects me and I get hyper. My TPO antibodies are normal but my TPG are very elevated. I'd like to try ldn but am concerned it may throw me into hyper heaven. What test would indicated TSH receptor antibodies are affected? And is there a protocol for using ldn with Hashi's with sensitive responders? AB Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hi AB, Few doctors realize they have to ignore our low TSH and focus on the FTs, even though TSH is not even a thyroid hormone but only part of a feedback loop. It's also possible that the hyper symptoms you felt were only transitory and would have disappeared after a few days. Since Armour has a large amount of T3, it's often taken in split doses throughout the day to avoid revving up your heart rate. I stopped my thyroid meds after about 2 weeks on 1.5 mg LDN because I did go hyper. My pulse went up to 80, which is usually an accurate indication that my thyroid levels are too high. I didn't expect such a quick reaction, but some other hypothyroid folks had the same experience. (I also had improvement in my thyroid eye disease and my eczema.) Now, 10 days later, I feel euthyroid and I'm still taking 1.5 mg LDN. You could get a baseline TBII (Thyrotropin Binding Inhibitory Immunoglobulin) done if you can get one in Canada. Quest Labs does it here in the US. I'm told Armour can also suppress TSH because the T3 in it is fast-acting, so it might be helpful to know what's due to your antibody level and what's due to the Armour. True Hashimoto's involves thyroid cell destruction, in which case you wouldn't have the same effect from the LDN. Best wishes, B. ________________________________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of adelesbells Sent: Monday, January 14, 2008 9:38 AM low dose naltrexone Subject: Re: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results I don't feel bad in the low end but not great either (fatigue) - any attempt to raise medication bottomed out my TSH (.01) and had very little affect on my ft3 or 4 - but I did feel hyper! How did you know when to stop meds? Do you stop the day you start ldn? I'm currently taking 75 mg Armour and 25 mg Synthroid. Sounds like I should get a TBII done as a baseline. Thanks - anyone know of docs trying this in Toronto? AB RE: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results Hi AB, I'm just another amateur here, so I'll share my experience and then hope more knowledgeable folks will jump in. On the Graves' boards we learn that each person has a set point in the normal range of FT4 and FT3 where they feel best, and obviously you're found yours. Mine is in the middle for both; some folks feel best near the top. My experience was that I quickly stopped needing to take thyroid replacement (a moderate amount, 60 mcg T4 and 10 mcg T3) and dropped it altogether. Since then I've returned to a normal heart rate and feel euthyroid ( " just right " ). The end result is that rather than making me hyper, LDN seems to have healed my autoimmunity. I'll get FT4 and FT3 in labs in 4-5 weeks, to make sure I'm getting accurate results re my new status, and will get antibody labs in 3-4 months. (I have no TPG, moderate TPO of 350, and moderate TSH receptor antibodies, TBII of 25). bets wishes, B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Thanks - this makes sense.The last time I went off meds my TSH went to 11 (range .03-5) from .3 very quickly. You're right, I wouldn't have the same effect on thyroid with ldn if the destruction is done...so that's okay. Relief for the immune problems, hives, ibs, muscle pain would be a bonus.Thanks for sharing.AB RE: [low dose naltrexone] Re: Sjogrens/hashimotos - taken LDN Therapy for 4 weeks -- Results Hi AB, I'm just another amateur here, so I'll share my experience and then hope more knowledgeable folks will jump in. On the Graves' boards we learn that each person has a set point in the normal range of FT4 and FT3 where they feel best, and obviously you're found yours. Mine is in the middle for both; some folks feel best near the top. My experience was that I quickly stopped needing to take thyroid replacement (a moderate amount, 60 mcg T4 and 10 mcg T3) and dropped it altogether. Since then I've returned to a normal heart rate and feel euthyroid ("just right"). The end result is that rather than making me hyper, LDN seems to have healed my autoimmunity. I'll get FT4 and FT3 in labs in 4-5 weeks, to make sure I'm getting accurate results re my new status, and will get antibody labs in 3-4 months. (I have no TPG, moderate TPO of 350, and moderate TSH receptor antibodies, TBII of 25). bets wishes, B. Ask a question on any topic and get answers from real people. Go to Answers. Quote Link to comment Share on other sites More sharing options...
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