Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi Vic, I will try to answer your questions: First of all, how bad are your numbers? Many people will say get on ATDs and when your numbers are normal, if you want to switch to natural stuff, then go ahead and do that. If your numbers are really bad, then I would probably recommend that as well. If they are not so bad and you are not feeling too horrible, then maybe you can give the natural thing a go right off. The thing is that the natural stuff takes longer than the traditional ATDs do... or, maybe not, now that I think of it... It took me about 2 months to get my numbers to start coming down and for me to start feeling consistently better. They say with ATDs that it can take 4-8 weeks as well. So, same thing. I don't know how long it takes for ATDs to get your numbers in the normal range... my numbers still aren't in the normal range. As you probably already know, the alternative stuff will go a long way toward healing the whole body, not just treating the symptoms like traditional medicine does. That is why just ATDs without any lifestyle changes makes it much harder to reach remission and get off the ATDs. We need all the other stuff to heal all of our bodies, not just our thyroid or our immune system. And sometimes healing the whole body takes time. Hyperthyroid can cause damage to your heart, to your muscles and to your bones. A beta blocker will help protect your heart and magnesium, calcium and vitamin D will help protect your muscles and bones, and heart too. A beta blocker would be an excellent thing for you to get on with your heart rate. I'm surprised your doc didn't already prescribe one. In fact, if I were you, I would call her tomorrow and insist on a scrip. That is probably why she is rushing you into an endo. But you know, good for her for rushing you in to an endo, especially if she doesn't know how to treat you. I had a hell of a time getting referred to an endo and getting treatment, and that is why I went the natural road rather than ATDs... I'm glad now but at the time it was really frustrating. The beta blocker will calm you down and make it easier to sleep. At least it did for me. The muscle damage is happening because your metabolism is so fast that you are literally starving. Your food is being flushed right though, not staying long enough to provide food for the body, the body is pulling from all it's fat reserves and when those are gone, it starts on your muscles and bones. You need to eat more for now if that is happening and take calcium and magnesium. I have gotten most of my muscle back, though it is not as fit as it used to be.. I may be skinny, but I'm certainly not fit - flabby skinny, is that an oxymoron? LOL. Watch out for the magnesium - as in start it slowly - or you will be in the bathroom all day long, if you know what I mean. Hope this helps, and also, I know there are lots of horror stories about horrible endos, but not all of them are bad, and maybe you will get lucky right off with a good one. Pam B. My story: http://www.webmosaics.com/thyroid/ Open Letter to the newly diagnosed: http://www.webmosaics.com/thyroid/letter.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi Vic, I will try to answer your questions: First of all, how bad are your numbers? Many people will say get on ATDs and when your numbers are normal, if you want to switch to natural stuff, then go ahead and do that. If your numbers are really bad, then I would probably recommend that as well. If they are not so bad and you are not feeling too horrible, then maybe you can give the natural thing a go right off. The thing is that the natural stuff takes longer than the traditional ATDs do... or, maybe not, now that I think of it... It took me about 2 months to get my numbers to start coming down and for me to start feeling consistently better. They say with ATDs that it can take 4-8 weeks as well. So, same thing. I don't know how long it takes for ATDs to get your numbers in the normal range... my numbers still aren't in the normal range. As you probably already know, the alternative stuff will go a long way toward healing the whole body, not just treating the symptoms like traditional medicine does. That is why just ATDs without any lifestyle changes makes it much harder to reach remission and get off the ATDs. We need all the other stuff to heal all of our bodies, not just our thyroid or our immune system. And sometimes healing the whole body takes time. Hyperthyroid can cause damage to your heart, to your muscles and to your bones. A beta blocker will help protect your heart and magnesium, calcium and vitamin D will help protect your muscles and bones, and heart too. A beta blocker would be an excellent thing for you to get on with your heart rate. I'm surprised your doc didn't already prescribe one. In fact, if I were you, I would call her tomorrow and insist on a scrip. That is probably why she is rushing you into an endo. But you know, good for her for rushing you in to an endo, especially if she doesn't know how to treat you. I had a hell of a time getting referred to an endo and getting treatment, and that is why I went the natural road rather than ATDs... I'm glad now but at the time it was really frustrating. The beta blocker will calm you down and make it easier to sleep. At least it did for me. The muscle damage is happening because your metabolism is so fast that you are literally starving. Your food is being flushed right though, not staying long enough to provide food for the body, the body is pulling from all it's fat reserves and when those are gone, it starts on your muscles and bones. You need to eat more for now if that is happening and take calcium and magnesium. I have gotten most of my muscle back, though it is not as fit as it used to be.. I may be skinny, but I'm certainly not fit - flabby skinny, is that an oxymoron? LOL. Watch out for the magnesium - as in start it slowly - or you will be in the bathroom all day long, if you know what I mean. Hope this helps, and also, I know there are lots of horror stories about horrible endos, but not all of them are bad, and maybe you will get lucky right off with a good one. Pam B. My story: http://www.webmosaics.com/thyroid/ Open Letter to the newly diagnosed: http://www.webmosaics.com/thyroid/letter.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi Vic, How long can you wait, after first being diagnosed, to see if an alternative approach is working for you? * In the best circumstances, treatment should start as soon as humanly possible. I know this is a difficult question because who can predict the future, but is there any way of telling whether I can afford to go on a trial with an alternative method for a few months? * That will depend on how serious your hyper is. The labs tests will be your best final decision maker. And certainly the extent of your current symptoms We all want to avoid drugs and such, but sometimes this is just not a very wise thing with a serious disease like graves' / hyper. It may turn out, you will need to start on anti thyroid drugs to kick start this whole process. You can still be smart about the whole healing process and work on nutrition and supplements to speed things along. Once you become stable for awhile, and have had time to educate yourself, THEN you may choose to integrate natural means into your treatment plan. What are the possible consequences of delaying traditional treatment? * If you already have a high heart rate, trouble sleeping, muscle weakness.. ..damage has already started. The biggest problems with untreated or under treated hyper is long term heart damage and bone loss. I have given my blood test results to my naturopath. She said it would take her a couple of days to research everything. * Sounds like she is smart. I had several NP that refused to treat me early on. They were smart enough to know I had to have faster results to prevent more damage than had already occurred. And they knew I was very hyper and not controlled on the drugs yet. Natural methods would have been too slow for ME, at that point. It will all depend on your symptoms and lab results. I When are drugs prescribed * During your endo visit, he will probably give you a scrip. Be very sure before you take these drugs, that he does blood test to give you a baseline reading on your liver function and white blood count. These can both already be off...and since the drugs can also affect these..you need to be able to tell the difference. and when is it necessary to have RAI? * NEVER ! My doctor said it was urgent that I see the endo. Is his urgency based on heart rate? * Possibly heart rate, but most likely a combination of heart rate, test results, and other symptoms. If the treatment is to take a beta blocker to slow the heart down, does that, in itself, let you get the sleep that you so desperately need? * It should help immediately. It will help cover up many symptoms, but has NO affect on the hyper. Depending on how hyper you are now, the beta blockers may or may not help with sleep. I was VERY hyper and it took just over 3 weeks after diagnosis, to ever get any sleep at all, and I was on beta blockers. If one treats the symptoms, what can be done about the affect the disease has on the metabolism? * Only treatment for the hyper itself will help the metabolism. Is muscle damage always going on? Do muscles come back when the disease is treated, either alternatively or traditionally? * Yes...in time the damage will stop, once you get your thyroid to stop over producing. THEN you will be able to build your muscles back up. My neighbor s brother just climbed Mt. Hood yesterday. Seems he does it all the time now, post Graves'. We all know you have a million questions right now, so no need to apologize for asking too much. We all did ! -Pam L - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 > > Reply-To: graves_support > Date: Wed, 28 Aug 2002 04:24:48 -0000 > To: graves_support > Subject: Traditional versus Alternative > > How long can you wait, after first being diagnosed, to see if an > alternative approach is working for you? I know this is a difficult > question because who can predict the future, but is there any way of > telling whether I can afford to go on a trial with an alternative > method for a few months? What are the possible consequences of > delaying traditional treatment? I have read a lot of information. > None of it really clearly states at what point damage occurs because > of the hyperthyroid. I consulted an endo, and then refused to take any meds for about the first year, trusting to my alternative--which was Chinese herbal medicine. It worked for a while, my numbers got steadily better, but then we went on vacation, I couldn't brew my herbs, and the powdered ones didn't work as well since the main herb that was helping was not available in powder form. So when I came back, I was a wreck and acquiesced to starting the Tapazole. I still do take Chinese herbs along with it (the powders), and I'm sure that my symptoms have been much less than many other peoples, because I take my herbs. That said, it does depend on how bad shape you're in to start with! > > I have given my blood test results to my naturopath. She said it > would take her a couple of days to research everything. I will > probably see the endo within the next few days. I hope you an find an endo who will work with the naturopath! > > If it is cancer causing the hyperthyroidism, then I will have no > choice, but to have surgery. Cancer as a cause is rare, so I will > say that that is probably not the cause. When are drugs prescribed > and when is it necessary to have RAI? My doctor said it was urgent > that I see the endo. Is his urgency based on heart rate? What is your heart rate when resting? > > If the treatment is to take a beta blocker to slow the heart down, > does that, in itself, let you get the sleep that you so desperately > need? If one treats the symptoms, what can be done about the affect > the disease has on the metabolism? Is muscle damage always going > on? Do muscles come back when the disease is treated, either > alternatively or traditionally? Beta blockers slow the heart temporarily while the ATD is kicking in; unless you have other issues like high BP, it is a temporary measure. It does not treat the GD, just the heart rate. When you start taking ATD's and controlling the hyperthyroidism, your metabolism evens out, and muscle tone will return, with careful exercise. Personally, I exercise a lot--Tai chi every morning, most days a half-hour or so vigorous walk in a hilly park with my dog, and 4-5 nights a week, I also do an hour of PT exercises I started doing after a car accident, to strengthen and tone my various parts. > > I have a lot of questions. I will stop there. It's great to ask specific questions like this, gives us something helpful to do, answering them! Hope my answers help, Terry > > Vic > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 > > Reply-To: graves_support > Date: Wed, 28 Aug 2002 04:24:48 -0000 > To: graves_support > Subject: Traditional versus Alternative > > How long can you wait, after first being diagnosed, to see if an > alternative approach is working for you? I know this is a difficult > question because who can predict the future, but is there any way of > telling whether I can afford to go on a trial with an alternative > method for a few months? What are the possible consequences of > delaying traditional treatment? I have read a lot of information. > None of it really clearly states at what point damage occurs because > of the hyperthyroid. I consulted an endo, and then refused to take any meds for about the first year, trusting to my alternative--which was Chinese herbal medicine. It worked for a while, my numbers got steadily better, but then we went on vacation, I couldn't brew my herbs, and the powdered ones didn't work as well since the main herb that was helping was not available in powder form. So when I came back, I was a wreck and acquiesced to starting the Tapazole. I still do take Chinese herbs along with it (the powders), and I'm sure that my symptoms have been much less than many other peoples, because I take my herbs. That said, it does depend on how bad shape you're in to start with! > > I have given my blood test results to my naturopath. She said it > would take her a couple of days to research everything. I will > probably see the endo within the next few days. I hope you an find an endo who will work with the naturopath! > > If it is cancer causing the hyperthyroidism, then I will have no > choice, but to have surgery. Cancer as a cause is rare, so I will > say that that is probably not the cause. When are drugs prescribed > and when is it necessary to have RAI? My doctor said it was urgent > that I see the endo. Is his urgency based on heart rate? What is your heart rate when resting? > > If the treatment is to take a beta blocker to slow the heart down, > does that, in itself, let you get the sleep that you so desperately > need? If one treats the symptoms, what can be done about the affect > the disease has on the metabolism? Is muscle damage always going > on? Do muscles come back when the disease is treated, either > alternatively or traditionally? Beta blockers slow the heart temporarily while the ATD is kicking in; unless you have other issues like high BP, it is a temporary measure. It does not treat the GD, just the heart rate. When you start taking ATD's and controlling the hyperthyroidism, your metabolism evens out, and muscle tone will return, with careful exercise. Personally, I exercise a lot--Tai chi every morning, most days a half-hour or so vigorous walk in a hilly park with my dog, and 4-5 nights a week, I also do an hour of PT exercises I started doing after a car accident, to strengthen and tone my various parts. > > I have a lot of questions. I will stop there. It's great to ask specific questions like this, gives us something helpful to do, answering them! Hope my answers help, Terry > > Vic > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 vscottbo wrote: > > None of it really clearly states at what point damage occurs because > of the hyperthyroid. Okay as others have said damage is ongoing, to muscles, to bones, to other tissues being overworked. The main reasons for death from hyperthyroidism are heart attack and stroke. Most people who (are known to) die from hyperthyroidism, die soon after diagnosis, either because treatment was too late. Most texts recommend prescribing betablockers or antithyroid drugs if an endo appointment can't be arranged promptly. > When are drugs prescribed and when is it necessary to have RAI? I was prescribed a Methimazole based antithyroid drug (Carbimazole), and a small dose of betablockers, the day my blood test results came back hyper from the lab. I was a real mess with resting pulse >120, muscle weakness, and weight loss. Methimazole based drugs are one of the wonders of modern medicine, and I think eschewing them would be ill advised for any but the most mild forms of hyperthyroidism. You can use alternative treatments alongside Methimazole based drugs, but I think turning down Methimazole in favour of alternative approaches would be like turning down aspirin so you can try willow bark. RAI ablation is only strictly necessary if a thyroid cancer has spread away from the thyroid area, or when a thyroid must be reduced in size, and the drugs don't work and thyroid surgery is not possible for some reason. Use of RAI isn't restricted only to cases where it is necessary, some here think that is a cavalier use of RAI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hi Vic - I agree with everyone so far. It really depends on how severe your hyperT is now. What do your lab values indicate? If the labs are pretty high, it would be better to get on ATDs first and get the numbers down, and then try some alternatives. If you're still mild, then you can probably give them a try for a couple months. If you do, just make sure that you are unde the supervision of a doctor to monitor you. I would suggest labs every 2 months if your doc will go for that. I started off on alternatives very early in the disease and had labs every 3 months. I can tell you 3 months was just a little too long, 2 would have been better. I started using supplements in mid August and by October, my FT3 and FT4 were already back down to normal range. Beta blocker is a good idea if your heart rate is fairly high. Mine was only 90-100 resting, and the beta made me feel worse, so I just used Magnesium with much better success. As for muscle wasting, the damage will stop once you get the thyroid levels back to normal. But as for the muscles " coming back " , exercise is necessary to get them back to their " normal " state. Mine aren't as weak as they once were, but the certainly aren't as strong as they used to be. I need to build mine own back up as well! Good luck. It can be done. Traditional versus Alternative > How long can you wait, after first being diagnosed, to see if an > alternative approach is working for you? I know this is a difficult > question because who can predict the future, but is there any way of > telling whether I can afford to go on a trial with an alternative > method for a few months? What are the possible consequences of > delaying traditional treatment? I have read a lot of information. > None of it really clearly states at what point damage occurs because > of the hyperthyroid. > > I have given my blood test results to my naturopath. She said it > would take her a couple of days to research everything. I will > probably see the endo within the next few days. > > If it is cancer causing the hyperthyroidism, then I will have no > choice, but to have surgery. Cancer as a cause is rare, so I will > say that that is probably not the cause. When are drugs prescribed > and when is it necessary to have RAI? My doctor said it was urgent > that I see the endo. Is his urgency based on heart rate? > > If the treatment is to take a beta blocker to slow the heart down, > does that, in itself, let you get the sleep that you so desperately > need? If one treats the symptoms, what can be done about the affect > the disease has on the metabolism? Is muscle damage always going > on? Do muscles come back when the disease is treated, either > alternatively or traditionally? > > I have a lot of questions. I will stop there. > > Vic > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hi Vic, >>>How long can you wait, after first being diagnosed, to see if an >>>alternative approach is working for you? I know this is a difficult >>>question because who can predict the future, but is there any way of >>>telling whether I can afford to go on a trial with an alternative method >>>for a few months? What are the possible consequences of delaying >>>traditional treatment? I have read a lot of information. None of it >>>really clearly states at what point damage occurs because of the >>>hyperthyroid.<<< Damage to your heart is the main concern I would have right now. The heart is a muscle and when hyper it goes into overdrive working very hard and as with any muscle, it can enlarge because of this. This was the main concern my doctor had when I came out of thyroid storm. He said enlargement to the heart and heart damage caused by graves is irreversible. Beta Blocker <Inderal, Propananol, Atenol> will help to slow down your metabolism and slow your heart rate which will give you some relief. >>>I have given my blood test results to my naturopath. She said it would >>>take her a couple of days to research everything. I will probably see >>>the endo within the next few days.<<< If your naturopath has no history in treating graves, I would tread cautiously. I think it is wonderful that she is open to doing research for you on this, but if she has no knowledge, then any treatment she offers at this time is going to be trial and error. Personally I feel this could be dangerous for you, at least while you are so hyper and have so much excess hormone in your body. >>>If it is cancer causing the hyperthyroidism, then I will have no choice, >>>but to have surgery. Cancer as a cause is rare, so I will say that that >>>is probably not the cause. When are drugs prescribed and when is it >>>necessary to have RAI? My doctor said it was urgent that I see the endo. >>> Is his urgency based on heart rate?<<< Cancer IS rare so that is a good thing. Beta Blocker and one of the ATD's <MMI, Tapazole, PTU> would be prescribed, these will block your thyroid from making more hormone and allow your body to use up the excess. When the excess is used up you will see a huge difference in how you feel and atd's will be reduced until you are on a small maintenence dose while your antibodies come down and hopefully you will attain remission. The Beta Blocker I explained above, the one thing about Beta's is you MUST WEAN off of them slowly. *I* don't believe RAI is EVER necessary, when cancer is not involved. Then it could be a different story. If you would not be able to take the ATD's, natural approach doesn't work, you always have surgery as an option. I know many who have doen surgery and have no regrets. It is the option I would now choose if I were faced with making a permanent decision and know what I know now. >>>If the treatment is to take a beta blocker to slow the heart down, does that, in itself, let you get the sleep that you so desperately need? If one treats the symptoms, what can be done about the affect the disease has on the metabolism? Is muscle damage always going on? Do muscles come back when the disease is treated, either alternatively or traditionally?<<< Beta Blockers may help you to get a bit more sleep, but you will not be sleeping well until all of the excess hormone is used up in your system. Muscle damage occurs when we are hyper and it can become very debilitating...the muscles will come back with exercise when you are no longer hyper. You should NOT be exercising AT ALL right now, not until your levels show you to be euthryoid <normal> again. Something to talk about with your doctors. >>>I have a lot of questions.<<< Keep asking!!! It is how we learn ;-) Graves Disease is a disease of our immune systems, it is NOT a diseased thyroid. The only treatment offered currently, in the tradiational sense of treatment that will address this issue is the use of one of the antithyroid drugs to bring down your autoantibody levels, TSI, TPO, TRAb are 3 of them. You can read more on antibodies here; http://www.suite101.com/article.cfm/graves_disease/54459 I really do suggest you get and read 2 books, Graves Disease; A Practical Guide by Elaine which will go into all treatments, including alternatives, really helps us understand our labs, shares several peoples journey's in their treatment of choice, including alternatives...the other book is The Thyroid Solution by Dr. Ridha Arem, a wonderful overall thyroid book that will give you some answers on the working of the thyroid in general, why it is so essential and what can go wrong with it. As for starting out on alternatives, what I am about to say is strictly *MY* opinion...I would want a naturopath who already has history in treating graves this way, it would depend on how serious your graves is, how close to storm you may be before persuing this treatment option. The alternatives appear to take more time to kick in, <by watching Pam B.'s journey in this> and untreated graves can be deadly. Maybe something to consider would be starting on ATD's to bring your levels into a more normal range, then begin the alternative treatments in, once you are not so at risk for some serious side effects. I say this because, , from another board I am involved in was using alternatives only, went into storm, and was hospitalized for a few days...she is not using PTU to bring her levels more normal then will go back to her alternatives once she is stable. It was a very scary time for her and for all of us who watched her continue to get worse in the hyperthyroid. As I said, this is my own opinion. I am not big on risk taking, though watching Pam B.'s journey is fascinating to me, she is very diligent in her approach, is monitored by a naturopath and by doctors at the Bastry Institute. She is monitored very closely, has learned to read the signals her body gives her and doesn't hesitate to call any of her doctors when she needs to. She has a link at the end of all her posts so we can follow her journey in alternatives, and her accomplishments...it is a slow process but she is getting better <though I still worry about her high pulse>. Education is the key, no matter what treatment you choose, lifestyle changes, diet changes, reducing stress all play a part. When you see the endo, do not be surprised if he pushes RAI. If you have already decided not to do it, just tell him right up front that is not a treatment option you are going to discuss, period! Know if you do the atd's, proper dosing and monitoring are essential. Labs every 4 weeks will help. I also suggest you go to the home page for this group, click on the files section and print up the numerous files there, the symptoms list, 20 reasons not to do rai and so many more. You will be well armed when you see the endo. Take care, and keep asking questions. Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
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