Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 Hi Mona, Pam, Elaine, , et. al. Thanks so much for everyone's help on this! You guys are all GREAT! Here is my eye " development " , so to speak. Around March or April of last year, before my Graves' diagnosis, but after I had had several thyroid storms, and didn't realize what was going on, I went for my regular eye exam and was declared " eye healthy " , so I guess I have had a baseline exam, so to speak. I got new glasses, same prescription. Approximately a month later, I was diagnosed with Graves'. I was hyper at this point, put onto 300 mg. of PTU per day, tested in a month, and then kind of dropped by my general practitioner, as most of you knew. She had told me to come back in 6 months for another testing. Since I had not really been to the doctor's in ages in ages, I did not know how to deal with the medical system, and this is when I went majorly hypo, around September or so, and had to beg for a blood test. This was also when I insisted that I see an endocrinologist. During this period of time, I had very very bad thyroiditis. I had no idea what was bringing this on, nor did I have any idea of what it felt like to be so hypo. But I was beginning to get my " sea legs " for this disease, and figure out what it felt like to to both hyper and then hypo. Well, when I went to the endo, he told me straight out that I got this because I was on too much PTU and that too much time had gone by between exams. When I went into the general practitioner for my women's exam, I questioned her, and she told me the thyroiditis was brought on by being on too high a dose of PTU. Damn, took me three months to really get this straightened out. By December, I was in the " normal " ranges again for free T4 and TSH. However, I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath also, during this whole time, though my doctors do not work with the naturopath). Both my GP and my endo felt that I could completely go off the PTU in December; however, when I tried going off both the PTU and the bugleweed, I had lots of hyper symptoms and got really afraid of thyroid storms, which I had several of in the past. So, for this past month, while still having palpitations, I continued on both the low dose of PTU and bugleweed. Now I am beginning to feel that once again, I might be a teeny bit hypo and this might be causing these eye problems. Three days ago, I went off both the bugleweed tincture and the PTU and so far, so good...I am having palpitations, but this is the only hyper symptom, so far. My eyes seem OK, so far... My symptoms were the ones which Mona described: dry eyes, pain behind the eyeballs, but also pain when I moved them from side to side. Also, extreme tiredness. Mona also mentioned being hypo. Since I am kind of goofy, and can have hyper symptoms when I am hypo, and hypo symptoms when I am hyper, I suspect that maybe I was just a wee bit hypo but it didn't register in my basal body temperature, which I take just about every day now. I will definitely check out your site on the eye diseases of Graves, Elaine. Both sites you sent. And I thank you, Mona, for your continued support, and the help of everyone on this forum! Hope this is not too long-winded, but I think the more information out there to everyone who is new, and people who are advanced beginners, like myself, is so helpful. Hope this helps someone else... In peace, Arlene TED > Hi Arlene, > As one who has been through several years of very bad eye disease, my suggestion is to > get you labs done now. If you are too hyper this will make your eyes worse. Waiting 6 wk. > for app. then a week for results, then a few weeks for med. change to take affect is a > long time if your eyes are starting up. Better part of two months. > > Elaine has very good information on her site concerning eye disease. > > In my opinion PTU is the best choice for the eyes. After much time, mine are very close > to back to normal. I am a fellow PTU gal. > > The standard advise is to go to an ophthalmologist and get a base line reading. But > apparently you need to find one that is familiar with thyroid eye disease, as not all of > them are. I never found one. I am sure I am the only one that never went to an > ophthalmologist. They say you have to. > > My endo measured my eyes every office visit and I read a lot on the possibilities , but > due to lack of funds and not finding a eye doctor that wouldn't be a total waste of my > money, I kept having my endo check them and at each visit, we would discuss if I was in an > emergency situation with the eyes. He reassured me at each visit that we were doing as > much as we could. > He did have me on very heavy steroids for the eyes for 6 or 8 mo. This worked, but as > soon as I went off them my eyes got worse again. Then he said in my case radiation would > be the next thing. I refused. He kept suggesting it. Then the new info came out, that > radiation is not proven to help. > So you see, if I had done it, I would have been counted as a success story, because my > eyes did get better. But all on their own ! I just had to wait. > > They were very bad as long as my thyroid levels kept going up and down. Which was for > the first few years. I did not have a computer or any good information. Then I was kept > hypo for awhile. Eyes still bad. But once I got closer to my normal thyroid levels , and > stayed there...it then took about one year for my eyes to start going back in my head. And > they seem to still be improving as we speak. > > I am not encouraging you to do nothing at all. I was in a unique position, in that my > endo was the most qualified person I could find. Though I suppose if I had a bunch of > extra money I could have spent it. > > -Pam- who is so happy to be one of the ones with a wonderful endo :-) > > P.S. Never use eye drops that say 'get the red out', and use sunglasses at the least hit > of brightness. > I also think protecting my eyes the way I did helped, not only with the pain, but > perhaps in the outcome. Never will know for sure. > > Please get your labs done. I do not want you to go through what I have if there is any > possibility of preventing it. > > It is just not pain and disfigurement, it is serious vision loss, while you have eye > disease, and there in not exact way to know if you will be one that gets better. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 Hi Arlene, You may be one of the lucky folks where you don't have bulging or eyelid retraction. I know people with thyroid disease but absolutely no eye involvement. It depends on each person. I'm glad I stayed away from RAI though, I'm sure it would have made my eyes worse! Take care, Mona TED > > > > Hi Arlene, > > As one who has been through several years of very bad eye disease, my > suggestion is to > > get you labs done now. If you are too hyper this will make your eyes > worse. Waiting 6 wk. > > for app. then a week for results, then a few weeks for med. change to take > affect is a > > long time if your eyes are starting up. Better part of two months. > > > > Elaine has very good information on her site concerning eye disease. > > > > In my opinion PTU is the best choice for the eyes. After much time, mine > are very close > > to back to normal. I am a fellow PTU gal. > > > > The standard advise is to go to an ophthalmologist and get a base line > reading. But > > apparently you need to find one that is familiar with thyroid eye disease, > as not all of > > them are. I never found one. I am sure I am the only one that never went > to an > > ophthalmologist. They say you have to. > > > > My endo measured my eyes every office visit and I read a lot on the > possibilities , but > > due to lack of funds and not finding a eye doctor that wouldn't be a total > waste of my > > money, I kept having my endo check them and at each visit, we would > discuss if I was in an > > emergency situation with the eyes. He reassured me at each visit that we > were doing as > > much as we could. > > He did have me on very heavy steroids for the eyes for 6 or 8 mo. This > worked, but as > > soon as I went off them my eyes got worse again. Then he said in my case > radiation would > > be the next thing. I refused. He kept suggesting it. Then the new info > came out, that > > radiation is not proven to help. > > So you see, if I had done it, I would have been counted as a success > story, because my > > eyes did get better. But all on their own ! I just had to wait. > > > > They were very bad as long as my thyroid levels kept going up and down. > Which was for > > the first few years. I did not have a computer or any good information. > Then I was kept > > hypo for awhile. Eyes still bad. But once I got closer to my normal > thyroid levels , and > > stayed there...it then took about one year for my eyes to start going back > in my head. And > > they seem to still be improving as we speak. > > > > I am not encouraging you to do nothing at all. I was in a unique > position, in that my > > endo was the most qualified person I could find. Though I suppose if I had > a bunch of > > extra money I could have spent it. > > > > -Pam- who is so happy to be one of the ones with a wonderful endo :-) > > > > P.S. Never use eye drops that say 'get the red out', and use sunglasses > at the least hit > > of brightness. > > I also think protecting my eyes the way I did helped, not only with the > pain, but > > perhaps in the outcome. Never will know for sure. > > > > Please get your labs done. I do not want you to go through what I have if > there is any > > possibility of preventing it. > > > > It is just not pain and disfigurement, it is serious vision loss, while > you have eye > > disease, and there in not exact way to know if you will be one that gets > better. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2002 Report Share Posted January 6, 2002 Thanks, Mona, Yes, RAI actually made my niece's eyes much worse. She did not have the bulging eyes before she had it done (still don't know why she did this except she said she tried PTU and it didn't work). I'll keep you guys informed. Will get educated on Elaine's articles and then see my eye doctor again, and get in touch with my doctors if I need to. ARlene TED > > > > > > > Hi Arlene, > > > As one who has been through several years of very bad eye disease, my > > suggestion is to > > > get you labs done now. If you are too hyper this will make your eyes > > worse. Waiting 6 wk. > > > for app. then a week for results, then a few weeks for med. change to > take > > affect is a > > > long time if your eyes are starting up. Better part of two months. > > > > > > Elaine has very good information on her site concerning eye disease. > > > > > > In my opinion PTU is the best choice for the eyes. After much time, > mine > > are very close > > > to back to normal. I am a fellow PTU gal. > > > > > > The standard advise is to go to an ophthalmologist and get a base line > > reading. But > > > apparently you need to find one that is familiar with thyroid eye > disease, > > as not all of > > > them are. I never found one. I am sure I am the only one that never went > > to an > > > ophthalmologist. They say you have to. > > > > > > My endo measured my eyes every office visit and I read a lot on the > > possibilities , but > > > due to lack of funds and not finding a eye doctor that wouldn't be a > total > > waste of my > > > money, I kept having my endo check them and at each visit, we would > > discuss if I was in an > > > emergency situation with the eyes. He reassured me at each visit that we > > were doing as > > > much as we could. > > > He did have me on very heavy steroids for the eyes for 6 or 8 mo. This > > worked, but as > > > soon as I went off them my eyes got worse again. Then he said in my case > > radiation would > > > be the next thing. I refused. He kept suggesting it. Then the new info > > came out, that > > > radiation is not proven to help. > > > So you see, if I had done it, I would have been counted as a success > > story, because my > > > eyes did get better. But all on their own ! I just had to wait. > > > > > > They were very bad as long as my thyroid levels kept going up and > down. > > Which was for > > > the first few years. I did not have a computer or any good information. > > Then I was kept > > > hypo for awhile. Eyes still bad. But once I got closer to my normal > > thyroid levels , and > > > stayed there...it then took about one year for my eyes to start going > back > > in my head. And > > > they seem to still be improving as we speak. > > > > > > I am not encouraging you to do nothing at all. I was in a unique > > position, in that my > > > endo was the most qualified person I could find. Though I suppose if I > had > > a bunch of > > > extra money I could have spent it. > > > > > > -Pam- who is so happy to be one of the ones with a wonderful endo :-) > > > > > > P.S. Never use eye drops that say 'get the red out', and use sunglasses > > at the least hit > > > of brightness. > > > I also think protecting my eyes the way I did helped, not only with > the > > pain, but > > > perhaps in the outcome. Never will know for sure. > > > > > > Please get your labs done. I do not want you to go through what I have > if > > there is any > > > possibility of preventing it. > > > > > > It is just not pain and disfigurement, it is serious vision loss, while > > you have eye > > > disease, and there in not exact way to know if you will be one that gets > > better. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 Hello Arlene I'd forgotten you were on bugleweed. I haven't managed to get any of that yet. I have got lemon balm now and have a mug of that a day, although it doesn't seem to have helped my sleeping patterns at all as I still wake up several times a night and the bags under my eyes are now down to my knees. I did get hold of some motherwort and had a mug of that for two days running and on the third day my heart was leaping about all over the place. May have been coincidence but I haven't used the motherwort again... Anyone else using the herbals?? Happy New Year! Re: TED > Hi Mona, Pam, Elaine, , et. al. > > Thanks so much for everyone's help on this! You guys are all GREAT! Here > is my eye " development " , so to speak. > > Around March or April of last year, before my Graves' diagnosis, but after I > had had several thyroid storms, and didn't realize what was going on, I went > for my regular eye exam and was declared " eye healthy " , so I guess I have > had a baseline exam, so to speak. I got new glasses, same prescription. > Approximately a month later, I was diagnosed with Graves'. I was hyper at > this point, put onto 300 mg. of PTU per day, tested in a month, and then > kind of dropped by my general practitioner, as most of you knew. > > She had told me to come back in 6 months for another testing. Since I had > not really been to the doctor's in ages in ages, I did not know how to deal > with the medical system, and this is when I went majorly hypo, around > September or so, and had to beg for a blood test. This was also when I > insisted that I see an endocrinologist. > > During this period of time, I had very very bad thyroiditis. I had no idea > what was bringing this on, nor did I have any idea of what it felt like to > be so hypo. But I was beginning to get my " sea legs " for this disease, and > figure out what it felt like to to both hyper and then hypo. Well, when I > went to the endo, he told me straight out that I got this because I was on > too much PTU and that too much time had gone by between exams. When I went > into the general practitioner for my women's exam, I questioned her, and she > told me the thyroiditis was brought on by being on too high a dose of PTU. > Damn, took me three months to really get this straightened out. By > December, I was in the " normal " ranges again for free T4 and TSH. However, > I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath also, > during this whole time, though my doctors do not work with the naturopath). > > Both my GP and my endo felt that I could completely go off the PTU in > December; however, when I tried going off both the PTU and the bugleweed, I > had lots of hyper symptoms and got really afraid of thyroid storms, which I > had several of in the past. So, for this past month, while still having > palpitations, I continued on both the low dose of PTU and bugleweed. Now I > am beginning to feel that once again, I might be a teeny bit hypo and this > might be causing these eye problems. Three days ago, I went off both the > bugleweed tincture and the PTU and so far, so good...I am having > palpitations, but this is the only hyper symptom, so far. My eyes seem OK, > so far... > > My symptoms were the ones which Mona described: dry eyes, pain behind the > eyeballs, but also pain when I moved them from side to side. Also, extreme > tiredness. Mona also mentioned being hypo. Since I am kind of goofy, and > can have hyper symptoms when I am hypo, and hypo symptoms when I am hyper, I > suspect that maybe I was just a wee bit hypo but it didn't register in my > basal body temperature, which I take just about every day now. > > I will definitely check out your site on the eye diseases of Graves, Elaine. > Both sites you sent. And I thank you, Mona, for your continued support, and > the help of everyone on this forum! Hope this is not too long-winded, but I > think the more information out there to everyone who is new, and people who > are advanced beginners, like myself, is so helpful. Hope this helps someone > else... > > In peace, > Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 , I actually went off the herbals now, along with the PTU, and seem to be doing better, actually...I don't know which of the two was making me have symptoms, but I have tons of sensitivities, which you might also. I was given a tincture from the naturopath for when I stabilized, which included motherwort, oregon grape root, black cohosh, Siberian ginseng, gotu kola, lemon balm, prickly ash and poke root. But I had problems with this, too. By the way, I am now not only on the natural estrogen (estradiol), but the natural progesterone too (Prometrium) Good luck with the hypo stuff, cause I know exactly what that feels like! Arlene Re: TED > > > > Hi Mona, Pam, Elaine, , et. al. > > > > Thanks so much for everyone's help on this! You guys are all GREAT! Here > > is my eye " development " , so to speak. > > > > Around March or April of last year, before my Graves' diagnosis, but after > I > > had had several thyroid storms, and didn't realize what was going on, I > went > > for my regular eye exam and was declared " eye healthy " , so I guess I have > > had a baseline exam, so to speak. I got new glasses, same prescription. > > Approximately a month later, I was diagnosed with Graves'. I was hyper at > > this point, put onto 300 mg. of PTU per day, tested in a month, and then > > kind of dropped by my general practitioner, as most of you knew. > > > > She had told me to come back in 6 months for another testing. Since I had > > not really been to the doctor's in ages in ages, I did not know how to > deal > > with the medical system, and this is when I went majorly hypo, around > > September or so, and had to beg for a blood test. This was also when I > > insisted that I see an endocrinologist. > > > > During this period of time, I had very very bad thyroiditis. I had no > idea > > what was bringing this on, nor did I have any idea of what it felt like to > > be so hypo. But I was beginning to get my " sea legs " for this disease, > and > > figure out what it felt like to to both hyper and then hypo. Well, when I > > went to the endo, he told me straight out that I got this because I was on > > too much PTU and that too much time had gone by between exams. When I > went > > into the general practitioner for my women's exam, I questioned her, and > she > > told me the thyroiditis was brought on by being on too high a dose of PTU. > > Damn, took me three months to really get this straightened out. By > > December, I was in the " normal " ranges again for free T4 and TSH. > However, > > I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath > also, > > during this whole time, though my doctors do not work with the > naturopath). > > > > Both my GP and my endo felt that I could completely go off the PTU in > > December; however, when I tried going off both the PTU and the bugleweed, > I > > had lots of hyper symptoms and got really afraid of thyroid storms, which > I > > had several of in the past. So, for this past month, while still having > > palpitations, I continued on both the low dose of PTU and bugleweed. Now > I > > am beginning to feel that once again, I might be a teeny bit hypo and this > > might be causing these eye problems. Three days ago, I went off both the > > bugleweed tincture and the PTU and so far, so good...I am having > > palpitations, but this is the only hyper symptom, so far. My eyes seem > OK, > > so far... > > > > My symptoms were the ones which Mona described: dry eyes, pain behind the > > eyeballs, but also pain when I moved them from side to side. Also, > extreme > > tiredness. Mona also mentioned being hypo. Since I am kind of goofy, and > > can have hyper symptoms when I am hypo, and hypo symptoms when I am hyper, > I > > suspect that maybe I was just a wee bit hypo but it didn't register in my > > basal body temperature, which I take just about every day now. > > > > I will definitely check out your site on the eye diseases of Graves, > Elaine. > > Both sites you sent. And I thank you, Mona, for your continued support, > and > > the help of everyone on this forum! Hope this is not too long-winded, but > I > > think the more information out there to everyone who is new, and people > who > > are advanced beginners, like myself, is so helpful. Hope this helps > someone > > else... > > > > In peace, > > Arlene > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Criminy - you've got the whole herb larder in there - so much stuff it would have been difficult to sort out which didn't suit you, I'd have thought. Do you mean you suffer with other allergies too? Are you on the natural versions of oestrogen and progesterone through your conventional doctor or through an alternative practitioner? I tried to get natural stuff from my doctor 4.5 years ago when I had a total hysterectomy but she wouldn't go for it and I just gave up at the time. I know she wants me on HRT but I just can't decide what to do about it - especially with all this other messing about. You take care now, Re: TED > > > > > > > Hi Mona, Pam, Elaine, , et. al. > > > > > > Thanks so much for everyone's help on this! You guys are all GREAT! > Here > > > is my eye " development " , so to speak. > > > > > > Around March or April of last year, before my Graves' diagnosis, but > after > > I > > > had had several thyroid storms, and didn't realize what was going on, I > > went > > > for my regular eye exam and was declared " eye healthy " , so I guess I > have > > > had a baseline exam, so to speak. I got new glasses, same prescription. > > > Approximately a month later, I was diagnosed with Graves'. I was hyper > at > > > this point, put onto 300 mg. of PTU per day, tested in a month, and then > > > kind of dropped by my general practitioner, as most of you knew. > > > > > > She had told me to come back in 6 months for another testing. Since I > had > > > not really been to the doctor's in ages in ages, I did not know how to > > deal > > > with the medical system, and this is when I went majorly hypo, around > > > September or so, and had to beg for a blood test. This was also when I > > > insisted that I see an endocrinologist. > > > > > > During this period of time, I had very very bad thyroiditis. I had no > > idea > > > what was bringing this on, nor did I have any idea of what it felt like > to > > > be so hypo. But I was beginning to get my " sea legs " for this disease, > > and > > > figure out what it felt like to to both hyper and then hypo. Well, when > I > > > went to the endo, he told me straight out that I got this because I was > on > > > too much PTU and that too much time had gone by between exams. When I > > went > > > into the general practitioner for my women's exam, I questioned her, and > > she > > > told me the thyroiditis was brought on by being on too high a dose of > PTU. > > > Damn, took me three months to really get this straightened out. By > > > December, I was in the " normal " ranges again for free T4 and TSH. > > However, > > > I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath > > also, > > > during this whole time, though my doctors do not work with the > > naturopath). > > > > > > Both my GP and my endo felt that I could completely go off the PTU in > > > December; however, when I tried going off both the PTU and the > bugleweed, > > I > > > had lots of hyper symptoms and got really afraid of thyroid storms, > which > > I > > > had several of in the past. So, for this past month, while still having > > > palpitations, I continued on both the low dose of PTU and bugleweed. > Now > > I > > > am beginning to feel that once again, I might be a teeny bit hypo and > this > > > might be causing these eye problems. Three days ago, I went off both > the > > > bugleweed tincture and the PTU and so far, so good...I am having > > > palpitations, but this is the only hyper symptom, so far. My eyes seem > > OK, > > > so far... > > > > > > My symptoms were the ones which Mona described: dry eyes, pain behind > the > > > eyeballs, but also pain when I moved them from side to side. Also, > > extreme > > > tiredness. Mona also mentioned being hypo. Since I am kind of goofy, > and > > > can have hyper symptoms when I am hypo, and hypo symptoms when I am > hyper, > > I > > > suspect that maybe I was just a wee bit hypo but it didn't register in > my > > > basal body temperature, which I take just about every day now. > > > > > > I will definitely check out your site on the eye diseases of Graves, > > Elaine. > > > Both sites you sent. And I thank you, Mona, for your continued support, > > and > > > the help of everyone on this forum! Hope this is not too long-winded, > but > > I > > > think the more information out there to everyone who is new, and people > > who > > > are advanced beginners, like myself, is so helpful. Hope this helps > > someone > > > else... > > > > > > In peace, > > > Arlene > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi , Yes, I have tons and tons of food " sensitivities " - I get headaches, stiff necks, sick in stomach, achey joints, etc., when I eat things I am " allergic " to. I don't have the traditional symptoms, such as hives. Yes, my general practitioner prescribed natural estrogen for me, and I couldn't believe it. Things are definitely changing, but I am here in Northern California, where alternative medicine is very big. She had to prescribe the regular synthetic progesterone for two months, and then told me how to go around the health system. After two months, I phoned her and told her the synthetic was not " working " , and she then prescribed this natural progesterone. My co-pay is higher for this ($15 instead of $5 per month). I have actually been doing much much better since I was on HRT. I fought and fought this. I went entirely through menopause without it, using only progesterone cream (ProGest) suggested by Dr. Lee. However, even my naturopath thought I was really deficient in estrogen. I have sensitivities to soy protein, so was not able to get phytoestrogens from this. When I had my women's exam, the doctor confirmed what I knew - my vaginal walls were paper thin, and this was affecting my relationship with my husband. So, reluctantly, I agreed to go onto HRT about two and a half months ago. Side effects for me: I am sleeping better at night, sex life is much better, my hair is better, and I don't have to pee so much during the night or day. No breakthrough bleeding, no swelling of breasts, no nausea. I am still not sure about this and probably am not going to take it forever and ever, but am going to look into an estrogen cream which is somewhat like the progesterone cream, and maybe use both of them together, though I suppose it wouldn't be any different than using the pills, though I am not sure about this. Arlene Re: TED > > > > > > > > > > Hi Mona, Pam, Elaine, , et. al. > > > > > > > > Thanks so much for everyone's help on this! You guys are all GREAT! > > Here > > > > is my eye " development " , so to speak. > > > > > > > > Around March or April of last year, before my Graves' diagnosis, but > > after > > > I > > > > had had several thyroid storms, and didn't realize what was going on, > I > > > went > > > > for my regular eye exam and was declared " eye healthy " , so I guess I > > have > > > > had a baseline exam, so to speak. I got new glasses, same > prescription. > > > > Approximately a month later, I was diagnosed with Graves'. I was > hyper > > at > > > > this point, put onto 300 mg. of PTU per day, tested in a month, and > then > > > > kind of dropped by my general practitioner, as most of you knew. > > > > > > > > She had told me to come back in 6 months for another testing. Since I > > had > > > > not really been to the doctor's in ages in ages, I did not know how to > > > deal > > > > with the medical system, and this is when I went majorly hypo, around > > > > September or so, and had to beg for a blood test. This was also when > I > > > > insisted that I see an endocrinologist. > > > > > > > > During this period of time, I had very very bad thyroiditis. I had no > > > idea > > > > what was bringing this on, nor did I have any idea of what it felt > like > > to > > > > be so hypo. But I was beginning to get my " sea legs " for this > disease, > > > and > > > > figure out what it felt like to to both hyper and then hypo. Well, > when > > I > > > > went to the endo, he told me straight out that I got this because I > was > > on > > > > too much PTU and that too much time had gone by between exams. When I > > > went > > > > into the general practitioner for my women's exam, I questioned her, > and > > > she > > > > told me the thyroiditis was brought on by being on too high a dose of > > PTU. > > > > Damn, took me three months to really get this straightened out. By > > > > December, I was in the " normal " ranges again for free T4 and TSH. > > > However, > > > > I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath > > > also, > > > > during this whole time, though my doctors do not work with the > > > naturopath). > > > > > > > > Both my GP and my endo felt that I could completely go off the PTU in > > > > December; however, when I tried going off both the PTU and the > > bugleweed, > > > I > > > > had lots of hyper symptoms and got really afraid of thyroid storms, > > which > > > I > > > > had several of in the past. So, for this past month, while still > having > > > > palpitations, I continued on both the low dose of PTU and bugleweed. > > Now > > > I > > > > am beginning to feel that once again, I might be a teeny bit hypo and > > this > > > > might be causing these eye problems. Three days ago, I went off both > > the > > > > bugleweed tincture and the PTU and so far, so good...I am having > > > > palpitations, but this is the only hyper symptom, so far. My eyes > seem > > > OK, > > > > so far... > > > > > > > > My symptoms were the ones which Mona described: dry eyes, pain behind > > the > > > > eyeballs, but also pain when I moved them from side to side. Also, > > > extreme > > > > tiredness. Mona also mentioned being hypo. Since I am kind of goofy, > > and > > > > can have hyper symptoms when I am hypo, and hypo symptoms when I am > > hyper, > > > I > > > > suspect that maybe I was just a wee bit hypo but it didn't register in > > my > > > > basal body temperature, which I take just about every day now. > > > > > > > > I will definitely check out your site on the eye diseases of Graves, > > > Elaine. > > > > Both sites you sent. And I thank you, Mona, for your continued > support, > > > and > > > > the help of everyone on this forum! Hope this is not too long-winded, > > but > > > I > > > > think the more information out there to everyone who is new, and > people > > > who > > > > are advanced beginners, like myself, is so helpful. Hope this helps > > > someone > > > > else... > > > > > > > > In peace, > > > > Arlene > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 Hi Arlene, I take bugleweed as a tincture, as well as another tincture containing rosemary, motherwort and something else. I take the herbs together with a very low dose of carbimazole, which together seem to be keeping my thyroid in its place! (I'm due for another blood test, so will know a little better then - although I've found that how I feel is sometimes a better indication than the blood test). I've just started on a complete nutritional supplement - it's probably too soon to know for sure whether it's making a difference, but so far I'm feeling really good. From what I've read I think that poor nutrition is probably a major contributing factor to thyroid problems. Magnesium certainly made a difference for me when I was having problems with a racing heart, but it is so important to make sure you get the balance right, as taking one mineral on it's own can upset the balance of others. Good luck. >From: " Alison " <moocher@...> >Reply-hyperthyroidism ><hyperthyroidism > >Subject: Re: TED >Date: Thu, 10 Jan 2002 11:31:12 -0000 > >Hello Arlene > >I'd forgotten you were on bugleweed. I haven't managed to get any of that >yet. I have got lemon balm now and have a mug of that a day, although it >doesn't seem to have helped my sleeping patterns at all as I still wake up >several times a night and the bags under my eyes are now down to my knees. > >I did get hold of some motherwort and had a mug of that for two days >running >and on the third day my heart was leaping about all over the place. May >have been coincidence but I haven't used the motherwort again... > >Anyone else using the herbals?? > >Happy New Year! > > > Re: TED > > > > Hi Mona, Pam, Elaine, , et. al. > > > > Thanks so much for everyone's help on this! You guys are all GREAT! >Here > > is my eye " development " , so to speak. > > > > Around March or April of last year, before my Graves' diagnosis, but >after >I > > had had several thyroid storms, and didn't realize what was going on, I >went > > for my regular eye exam and was declared " eye healthy " , so I guess I >have > > had a baseline exam, so to speak. I got new glasses, same prescription. > > Approximately a month later, I was diagnosed with Graves'. I was hyper >at > > this point, put onto 300 mg. of PTU per day, tested in a month, and then > > kind of dropped by my general practitioner, as most of you knew. > > > > She had told me to come back in 6 months for another testing. Since I >had > > not really been to the doctor's in ages in ages, I did not know how to >deal > > with the medical system, and this is when I went majorly hypo, around > > September or so, and had to beg for a blood test. This was also when I > > insisted that I see an endocrinologist. > > > > During this period of time, I had very very bad thyroiditis. I had no >idea > > what was bringing this on, nor did I have any idea of what it felt like >to > > be so hypo. But I was beginning to get my " sea legs " for this disease, >and > > figure out what it felt like to to both hyper and then hypo. Well, when >I > > went to the endo, he told me straight out that I got this because I was >on > > too much PTU and that too much time had gone by between exams. When I >went > > into the general practitioner for my women's exam, I questioned her, and >she > > told me the thyroiditis was brought on by being on too high a dose of >PTU. > > Damn, took me three months to really get this straightened out. By > > December, I was in the " normal " ranges again for free T4 and TSH. >However, > > I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath >also, > > during this whole time, though my doctors do not work with the >naturopath). > > > > Both my GP and my endo felt that I could completely go off the PTU in > > December; however, when I tried going off both the PTU and the >bugleweed, >I > > had lots of hyper symptoms and got really afraid of thyroid storms, >which >I > > had several of in the past. So, for this past month, while still having > > palpitations, I continued on both the low dose of PTU and bugleweed. >Now >I > > am beginning to feel that once again, I might be a teeny bit hypo and >this > > might be causing these eye problems. Three days ago, I went off both >the > > bugleweed tincture and the PTU and so far, so good...I am having > > palpitations, but this is the only hyper symptom, so far. My eyes seem >OK, > > so far... > > > > My symptoms were the ones which Mona described: dry eyes, pain behind >the > > eyeballs, but also pain when I moved them from side to side. Also, >extreme > > tiredness. Mona also mentioned being hypo. Since I am kind of goofy, >and > > can have hyper symptoms when I am hypo, and hypo symptoms when I am >hyper, >I > > suspect that maybe I was just a wee bit hypo but it didn't register in >my > > basal body temperature, which I take just about every day now. > > > > I will definitely check out your site on the eye diseases of Graves, >Elaine. > > Both sites you sent. And I thank you, Mona, for your continued support, >and > > the help of everyone on this forum! Hope this is not too long-winded, >but >I > > think the more information out there to everyone who is new, and people >who > > are advanced beginners, like myself, is so helpful. Hope this helps >someone > > else... > > > > In peace, > > Arlene > > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Hi , Glad to " meet " you. It seems like you have taken the same course I have: using western medicine together with the herbals. In addition, I also take lots of vitamins, though I have problems with a combination B vitamin. I am also highly allergic to brewer's yeast, so cannot get my Bs from there. However, I try to get my Bs in foods like cereals (grape nut types) and bean sprouts, etc. I agree about the magnesium-calcium balance. I believe I had seen somewhere (perhaps on 's site) that the recommendation is 1:1 - but other places, for " normal " people it is 2:1 (2 calcium to 1 magnesium). I have had extremely bad problems with constipation since I have been hyper (opposite from most of you), so I am wondering if perhaps I should go 1:1? I have now been off PTU (another ATD) for 9 days, and had very bad tremors of my right hand yesterday, and some palpitations. I think and hope it was due to being hypoglycemic, but as a precaution, I took a dose of my bugleweed tincture as well as some food, and feel fine this morning. I have also been off the bugleweed for 9 days. I am not due for another blood test for 5 more weeks and am feeling a little squirrely about this, since I feel like I might have been a little up and down with my thyroid this whole last month. Good to see you here on this forum! Thanks for sharing. Arlene in California Re: TED > > > > > > > Hi Mona, Pam, Elaine, , et. al. > > > > > > Thanks so much for everyone's help on this! You guys are all GREAT! > >Here > > > is my eye " development " , so to speak. > > > > > > Around March or April of last year, before my Graves' diagnosis, but > >after > >I > > > had had several thyroid storms, and didn't realize what was going on, I > >went > > > for my regular eye exam and was declared " eye healthy " , so I guess I > >have > > > had a baseline exam, so to speak. I got new glasses, same prescription. > > > Approximately a month later, I was diagnosed with Graves'. I was hyper > >at > > > this point, put onto 300 mg. of PTU per day, tested in a month, and then > > > kind of dropped by my general practitioner, as most of you knew. > > > > > > She had told me to come back in 6 months for another testing. Since I > >had > > > not really been to the doctor's in ages in ages, I did not know how to > >deal > > > with the medical system, and this is when I went majorly hypo, around > > > September or so, and had to beg for a blood test. This was also when I > > > insisted that I see an endocrinologist. > > > > > > During this period of time, I had very very bad thyroiditis. I had no > >idea > > > what was bringing this on, nor did I have any idea of what it felt like > >to > > > be so hypo. But I was beginning to get my " sea legs " for this disease, > >and > > > figure out what it felt like to to both hyper and then hypo. Well, when > >I > > > went to the endo, he told me straight out that I got this because I was > >on > > > too much PTU and that too much time had gone by between exams. When I > >went > > > into the general practitioner for my women's exam, I questioned her, and > >she > > > told me the thyroiditis was brought on by being on too high a dose of > >PTU. > > > Damn, took me three months to really get this straightened out. By > > > December, I was in the " normal " ranges again for free T4 and TSH. > >However, > > > I was still taking 25 mg. PTU and bugleweed (I have seen a naturopath > >also, > > > during this whole time, though my doctors do not work with the > >naturopath). > > > > > > Both my GP and my endo felt that I could completely go off the PTU in > > > December; however, when I tried going off both the PTU and the > >bugleweed, > >I > > > had lots of hyper symptoms and got really afraid of thyroid storms, > >which > >I > > > had several of in the past. So, for this past month, while still having > > > palpitations, I continued on both the low dose of PTU and bugleweed. > >Now > >I > > > am beginning to feel that once again, I might be a teeny bit hypo and > >this > > > might be causing these eye problems. Three days ago, I went off both > >the > > > bugleweed tincture and the PTU and so far, so good...I am having > > > palpitations, but this is the only hyper symptom, so far. My eyes seem > >OK, > > > so far... > > > > > > My symptoms were the ones which Mona described: dry eyes, pain behind > >the > > > eyeballs, but also pain when I moved them from side to side. Also, > >extreme > > > tiredness. Mona also mentioned being hypo. Since I am kind of goofy, > >and > > > can have hyper symptoms when I am hypo, and hypo symptoms when I am > >hyper, > >I > > > suspect that maybe I was just a wee bit hypo but it didn't register in > >my > > > basal body temperature, which I take just about every day now. > > > > > > I will definitely check out your site on the eye diseases of Graves, > >Elaine. > > > Both sites you sent. And I thank you, Mona, for your continued support, > >and > > > the help of everyone on this forum! Hope this is not too long-winded, > >but > >I > > > think the more information out there to everyone who is new, and people > >who > > > are advanced beginners, like myself, is so helpful. Hope this helps > >someone > > > else... > > > > > > In peace, > > > Arlene > > > > > > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 It is with great sadness that I am announcing that Ted from District 8 and the Dal-Worth chapter passed away this morning. He leaves his wife , and his two children and Grace. Funeral services are pending. Sinceerely, Lois Lamb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 It has been my experience that keeping thyroid levels in the mid-range helps in controlling TED. Take care, Joyce. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2003 Report Share Posted April 27, 2003 Thanks. It is always good to know more. Pam Quote Link to comment Share on other sites More sharing options...
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