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  • sabinaa
    Participant
    Post count: 14

    US doctors will usually focus on eliminating the symptoms of Grave’s, not the healing of the actual disease. Grave’s is an auto immune disorder, and that’s what any treatment should address. Four out of the 5 doctors / specialists that I saw recommended that I take RAI and destroy my thyroid. In Europe, doctors will actually try to avoid this method, because, if you destroy your thyroid, you will be on meds for the rest of your life. Not to mention that your immune system may still attack your eyes and cause other health problems.

    Here is what I did, and I consider myself completely cured of Grave’s: I took very little PTU after trying all kinds of other alternatives that didn’t work. I also did take some beta blockers – they saved my life! The PTU did calm my over active thyroid and even though my then-doctor prescribed a very high dosage, I only took one a day and that was more than enough for me. Once my levels were somewhat normal (after about 7 months), I stopped the PTU all together – against the advise of my doctor. Then I switched doctors again, and finally found someone who explained that it is the immune system that needs attention. Most conventional doctors will not even consider the immune system, even though Grave’s is caused by an impaired immune system. In my case, I began with some herbal colon and liver detox remedies, stopped drinking coffee, learned to relax and avoid stress, added massages, avoid sugar, fatty foods and junk food. I also make a mental effort of "talking to" and feeling my body. I put my mind to telling my immune system to relax and to not attack my thyroid and eyes. It sounds silly, but I think it is important to be in touch with your body and learn to understand and listen to it.

    My eye problems continued for another year, but once my immune system became more balanced, my eyes started slowly to move back in position. It has been over 2 years since I had an over active thyroid and today my thyroid is completely healthy and normal, and even though my eyes are still slightly puffy in times, they look pretty much back to normal, too.

    I truly believe that some of these invasive treatments (RAI and surgery) will be part of the past one day – when medicine allows a better understanding of our complex human body. And I am just glad that I didn’t listen to the first 4 doctors! Had I followed the orders of the first 4 doctors, I would live with a destroyed thyroid, depend on medication for the rest of my life, and would still have bulging, irritating eyes. Instead, I still have a healthy working thyroid, my eyes look pretty much normal again, and my new doctor is confident that I will never have Grave’s again.

    Well, hope this will give you an alternative perspective.

    Good Luck to you!

    Ski
    Participant
    Post count: 1569

    Natural methods and diet improvements can help to minimize symptoms, but none can do anything to reduce your thyroid hormone levels. You must at least take ATDs in order to bring your levels down and attempt remission.

    Feel free to take advantage of any naturopathic treatments, but make sure you notify your "western" doctor of what you’re using. Just because it’s "natural" doesn’t mean it’s harmless, and certain doses or combinations can be counterproductive.

    TED will usually resolve within about three years, no matter what you do or do not do, and if you’re not a smoker, it’s more likely that the cycle will finish somewhere around one year to 18 months from onset. You may be able to hold symptoms down with natural methods, but that is not proven. For the most part, only about 15% of GD patients end up with really bad TED symptoms, and only about 5% of those have the VERY worst symptoms, so there’s only a tiny chance of having the worst symptoms anyway.

    MonikaOH
    Participant
    Post count: 12

    Hi,
    I was wondering if anyone has tried natural methods/diet to keep Graves in remission.
    I am on PTU catching every cold, and other viruses around. I am not happy with neither RAI nor surgery as my next option…
    My current endo recommends RAI since thyroid still converts hormons after.
    I had 9 mo old son that is very attached to me so week away from his seems like a torture.
    Also I am affraid of gain weight without thyroid. I don’t function well with extra pounds.

    DianneW
    Participant
    Post count: 292

    Sabinaa, I’m really glad you have had success so far with ATD treatment, and that you’ve seen improvement in your eyes. This is what one can hope for when choosing this treatment. According to recent statistics. (depending on whose) from 15-30% of patients who use ATDs will have a long-term or permanent remission.

    However, this isn’t quite the same as being "cured", because it’s possible that it can return, and if it doesn’t, frequently patients will become hypothyroid due partly to damage that has been done to the thyroid already, and partly due to another set of antibodies found commonly in Graves’ Disease patients: TPO antibodies, which also cause Hashimotos thyroiditis. They can develop at any time even if you don’t have them now. (I had an elevated titre at diagnosis.)

    As Ski said, there’s no evidence that any of your dietary modifications are the cause of the improvements in your eyes. I can vouch that Ski’s eyes improved over time as well, and she had RAI treatment and I don’t think she made the same dietary changes you did (correct me if I’m wrong, Ski). It’s nice to think you have control over this disease, but I’m not sure it’s scientifically valid.

    I’ve seen many patients who used ATD treatment who have not had the same success you have had. Two I can think of right off the top of my head had some of the worst cases of eye disease I’ve ever seen. So again, while ATD treatment is surely a good place to start for people who so choose, it’s not the magic cure-all you’d like to believe it is; at least, not for everyone. There’s no doubt though, that it can be very useful, especially considering that it acts as an immune modulator, helping to bring antibody levels back to normal for those patients fortunate enough to respond. (Recent evidence shows that both normalizing thyroid levels and direct effects of PTU or methimazole help to normalize antibody levels in responding patients.)

    Doctors in Europe have been using ATDs as a first-line treatment for many years, and success rates have been limited there as well, so RAI is being used quite frequently now. Efforts are ongoing to determine why some people respond to ATDs and others don’t. As Ski said, this is a complicated disease, and natural treatments alone simply don’t work.

    If natural methods don’t work alone, do they work at all? So far, there’s no hard evidence that they do. If they did, we’d ALL be in line to use them. Still, improving our diets can never hurt, as long as we’re sure the changes we’re making are really an improvement.

    The idea to heal the immune system rather than destroying the thyroid gland is a great one, and we all agree with that in theory. I agree with Ski that until the cause of this disease is understood, any attempt to do that is an illusion.

    Enjoy your remission, and I hope it lasts for you always, but I think considering it a "cure" is less than realistic, statistically speaking.

    sabinaa
    Participant
    Post count: 14

    Ski, Dianne – thank you for your responses – I do follow them with great interest. They are however, no different from what I have already heard over and over again from the many "western" doctors that I have seen. You add nothing new to the science of Grave’s. So please allow me to respectfully disagree with both of you on a few things.

    For one, Grave’s to this day is not fully understood, and I think we can all agree on that. So, how do you suppose doctors can successfully treat a Grave’s patient if the cause is unknown? Again, the treatment that doctors in the old days came up with only focused on treating the symptoms – not the disease. And those treatments are apparently still a preferable option for many doctors in the US today. Despite the fact that there are many cases out there where people have gotten Grave’s under control without destroying their thyroid. I am not a unique case! One lady even "sells" her cure online, even though it is founded on the same principles that I promote here for free. My principles are not based on diet and alternative treatments alone. They are founded on the idea that you can work on being in tune with your body, and restore your immune system by riding out the disease without destroying your thyroid.

    As German native, I have extensively researched treatment approaches in Europe and found that the use of RAI is a last resort only for patients with extreme cases of Grave’s. The most common treatment in Germany is in fact medication alone. And there are many cases where Germans chose to only take beta blockers and simple let the disease take its course until it goes into remission on its own – which seems to happen frequently for those people who learn to adjust to a healthier living.

    As to the eye problems, they may never go away, even if you do the RAI or surgery! The eye problems are a result of your auto immune disorder – not your thyroid! That is a fact. If the eye problems disappear after some years, it only shows that the disease took its course and now goes into remission. It means you didn’t have to destroy your thyroid to get there! In most cases, your immune system will eventually start to balance itself, if you provide your body with some loving caring attention. Be good to your self! So instead of running to destroy your thyroid, give yourself some time, use whatever minimal meds get you by, and work on healing yourself!

    You seem to somewhat believe that I promote an unproven alternative treatment plan that is statistically speaking ineffective. My cure of Grave’s isn’t due to a specific diet! What I am saying is that you should avoid destroying your thryroid at all costs possible! The more invasive your treatment, the more long term your imbalance of your immune system! That is what I am saying. And my current "western" physician will only attest to that. At last, I found a doctor who recognizes the importance of the mind going hand in hand with your body.

    I overcame Grave’s because of a combination of factors. For one, I never believed in taking meds for every little illness and bug to begin with. I have always been in tune with what goes on inside of me. I let my body fight the bugs and my body becomes stronger because of it. Unless I am faced with a real life threatening condition, I will not put myself through unnecessary treatments that will only weaken my body in the long run. And the many HIV infected people out there who live with the disease without an outbreak for many years will attest to the fact that your own body will be your biggest protector – if you treat it right!

    So, my cure in essence begins with an inner belief that I have to give my body the rest, sanctity, nutrients and time it needs. When I was diagnosed with Grave’s, I was horrified because I never thought I would have to face anything like that. But once I started to learn, research and come to terms with it all, I became determined to heal myself.

    True, herbal and natural remedies will not stop an overactive thyroid. And I did have to take beta blockers, or else I would have probably died. I took a minimal dose though, of 20 mg may be once or twice a day. Eventually, I decided to take some small amount of PTU because I started to literally waste away. Since I am sensitive, since I never took meds in my life, I wanted to get a "feel" for these pills first, so I started with one daily – even though I was supposed to take six!

    My point here is not what I specially did or didn’t do to cure myself, but rather that everyone has the ability to get a "feel" for their body and that will help you boost yourself back to normal. This will be different for everyone. Do whatever you have to do to minimally go though Grave’s, and I believe that over time (2-5 years), the disease will remiss, your eyes will normalize, and you can then start to rebuild a strong immune system by getting the medication toxins out of your body and begin a life style that will soothe you.

    As a woman in her 40s, I was diagnosed with Grave’s in 2004. Several docs told me I would have to deal with this for the rest of my life. But today, I enjoy a life without meds, and with a thryroid that is intakt. And that is a fact! I have nothing to gain from sharing my experience, and I don’t care whether people out here believe me or not. But the fact is that I am healed, my eyes are pretty much back to normal, and my doctor is absolutely certain that thyroid problems will not be part of my future. But what is even more important is that I myself feel and know that my thyroid will be fine. Why? Because I addressed my auto immune dysfunction. And not a single day goes by that I don’t do something nice now for my body. I avoid stress, I relax more, I eat right and I keep toxins out of my life as much as I can, all while appreciating every single day of my life.

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    Ski
    Participant
    Post count: 1569

    We will always applaud efforts to get our bodies more in tune, less frenetic, and it’s true, attaining a "Zen" state will always help autoimmune diseases, because in times of less stress, the immune system is less active, so the damaging antibodies do less damage. We’re not disagreeing with those particular methods, and in the end, I don’t think we’re disagreeing with you at all.

    One thing I need to point out is that Graves’ Disease, the thyroid disease, is recognized as a separate disease from Thyroid Eye Disease (TED), even though the two happen concurrently in many patients. They take a separate course, the antibodies are different, and one is not affected by treatment for the other. Nearly all TED patients end their disease curve and resolve symptoms in a time period between 12 and 36 months. The ones who need surgical repair afterwards are those who had the worst possible symptoms at first. The scar tissue either needs to be removed, or space needs to be made in the orbit for the scar tissue. Those individuals are in a very small percentage of the overall GD population.

    And just one more thing ~ "treating" Graves’ Disease with beta blockers only is NOT treating Graves’ Disease, and the patient runs the risk of suffering a great deal of bodily harm due to the hyperthyroidism. Thyroid hormone is literally the fuel for every cell in the body, and if you’re taking beta blockers, you are allowing the hyperthyroidism to continue, which damages literally every cell in the body when left unchecked. I see that you found this to be true in your case, and ultimately did take PTU to bring your thyroid hormone levels back into the normal range. Thyroid hormone levels are the golden value to seek during treatment. It’s true that doctors around the world have differing opinions on which of our three possible treatments is "better" than another. There’s truly no way of knowing who is "right," since with 100 doctors, you could come up with 100 different reasons for their opinion. All three treatments bring us to health, and it is our own personal choice which we take advantage of. We recommend the patient being fully informed and not doing what the doctor says, just because he said it.

    We all agree that we would prefer to solve the disease than treat the symptoms. We are in touch with the medical professionals who are working on this, and at this point they are studying some very interesting information that may give them a chance to interrupt the disease process in those who are likely to end up with Graves’. The research is in VERY early stages, and results may not be seen for years. In the end, though, they admit they will only be able to help people who have not contracted the disease yet, but who are likely to (due to a genetic defect they have found in all patients with autoimmune diseases).

    For those of us who have Graves’, each has an individual path, an individual story. I hope you understand we are all different, and I also hope that you acknowledge we have a right to choose for ourselves what treatment we pursue.

    I’m GLAD you are well, I support your efforts at better overall health, and I too wish for a way to keep people from getting Graves’. For now, GD will always take a back seat in research dollars to diseases that are fatal and/or without any form of satisfactory treatment choices. In the meantime, we do the best we can for ourselves and our families.

    Maria
    Participant
    Post count: 19
    As a woman in her 40s, I was diagnosed with Grave’s in 2004. Several docs told me I would have to deal with this for the rest of my life. But today, I enjoy a life without meds, and with a thryroid that is intakt. And that is a fact! I have nothing to gain from sharing my experience, and I don’t care whether people out here believe me or not. But the fact is that I am healed, my eyes are pretty much back to normal, and my doctor is absolutely certain that thyroid problems will not be part of my future. But what is even more important is that I myself feel and know that my thyroid will be fine. Why? Because I addressed my auto immune dysfunction. And not a single day goes by that I don’t do something nice now for my body. I avoid stress, I relax more, I eat right and I keep toxins out of my life as much as I can, all while appreciating every single day of my life.

    I have had this condition since 2001and have done a lot of research . Graves does not disappear.

    We cannot avoid stress and we cannot relax more than life allows. What is eating right? Can you give me a sample menu for say a week?

    Jake_George
    Participant
    Post count: 120

    This is actually a very old argument on treatment of Graves’ disease. That it can be “cured” if you change your diet, take herbs, supplements , etc. But as has been stated by all in this topic thread, Graves’ disease is an autoimmune disease.

    As such, for some reason our bodies have identified the thyroid as a threat to our lives and our immune system goes into attack mode to kill off the thyroid. In so doing, the thyroid fights back by releasing thyroid hormone. Excess thyroid hormone can wreck havoc on our bodies. We lose bone density; muscle mass and our systems can run in hyper states for a long period of time. Losing muscle mass, can cause another myriad of problems. The heart is a muscle and can be effected just as can leg or arm muscles. Loss of muscle mass of the heart can cause other problems up to and including death.

    You are correct that the doctors do not fully understand autoimmune diseases, and as such they have to rely on treating the symptoms to keep them in balance to help keep the patient healthy and alive. A diabetic’s body has shut down the pancreas and they need replacement insulin to survive. Doctors do not treat the pancreas; they treat the symptom of low insulin by replacing insulin in our bodies. A thyroid that is under attack by antibodies produces excess thyroid hormone that causes drastic effects to our bodies. So the doctors treat the symptom of excess thyroid hormone with antithyroid drugs. To reduce levels in our bodies to a normal level.

    What many alternative followers and practitioners’ often believe is that, ”destroying a functioning thyroid “ is a bad practice to follow. Problem is that the thyroid is not functional. It is diseased and is slowly being killed off by the body’s immune system. It is not healthy. It is diseased. Many people tell others that the doctors are trying to kill off a perfectly good organ, when the problem is with the immune system, not the thyroid. But in fact the thyroid is damaged by the immune system.

    That being said, there is proof that a small percentage of people with Graves’ disease will go into remission on their own, independent of whatever treatment plan they have followed. If you were one of the small percentage that this has happened to, you can attribute it to your changing your diet, deep cleansing, etc.. The same would apply to those who did absolutely nothing, or followed some other form of self or alternative treatment. I am not discounting what happened for you, just stating you may have been in that small percentage of folks who would have gone into remission no matter what.

    The problem is that the greater percentage will not go into remission and will need antithyroid drugs, Radiation or thyroidectomy to treat the symptoms of over active thyroid, (Graves’ disease) to get their body back into normal ranges. Many newly diagnosed people are afraid of the diagnosis and accepted treatment plans. They will try almost anything to avoid proven treatment options. They will reach out to those who tell them they can cure their Graves’ disease by doing this or that because, “It worked for me and it may work for you too.”

    Problem is, while they are trying other treatments, the large majority who will not go into remission, continue to get sicker and sicker. Treatment of longer stages of untreated Graves’ disease usually has to be more aggressive to treat the symptoms of long periods of hyperactivity.

    They need to know that there is a small chance of spontaneous remission. That is why doctors often treat with antithyroid drugs for a period of six to eighteen months then back off of the ATDs to see if the thyroid levels remain stable. If they go back up, the person is probably not in the small percentage that would have gone into remission. Even in your case the time you spent on ATDs may have been enough for your system to go into remission.

    We are often told that RAI is the last treatment of choice in Europe and that used to be true. In recent years more European doctors are prescribing RAI because it is a proven treatment plan that works and has a very long history of success. Yes it kills off the thyroid or a large portion of it. But the removal of the ability of the thyroid to release thyroid hormone is then observed and replacement hormone is prescribed.

    What the average person with Graves’ disease needs to know, is their thyroid is not a healthy functioning thyroid. It is slowly being killed off by the body’s immune system. Just at a slower rate. The problems with fluctuation thyroid levels while the thyroid dies an untimely death due to antibodies can cause major problems with our bodies as the doctors try to replace thyroid hormone that is fluctuating making it hard to treat and keep levels in a normal range.

    I am glad you have gone into remission. However, all people with Graves’ need to be followed to see how their levels are in their bodies. If they continue to be high or fluctuate, the doctors have to treat the symptoms. That is currently the only treatment for autoimmune diseases. Until they discover how to trick the immune system into turning off and stop attacking the thyroid, the symptoms need to be treated. Until that time the thyroid will continue to die off a little at a time due to the attack by the antibodies. When that day comes, those who waited for a day when the doctors can turn off the antibodies will be left with what is left of their thyroid. Not a fully functional healthy thyroid. A thyroid that has been damaged do to attacks by antibodies.

    They will not have fully functional thyroids like many state to be the case. They need to know until that day, when antibodies can be shut off, their thyroid is being damaged. Twenty four hours a day, seven days a week. When and if the doctors can find out how to turn off the antibodies, they will have a thyroid that is damaged and they will have to accept treatment from that day on to make them well.

    Regards,

    kaicee118
    Participant
    Post count: 51

    Thank you, Jake George! That was a very compelling explanation.

    I have periodic misgivings about planning a thyroidectomy, thinking that this isn’t my thyroid’s fault, it’s my immune system’s fault, etc., but then I try to remember, as you said, that my thyroid is damaged.

    Also – someone said something about a person not having Graves disease, but rather inflammation of the thyroid. My endo didn’t want to say 100% that I had Graves after my first episode, even though I had antibodies. But once it came back the second time, he was sure – it wasn’t just a transient infection.

    KMB
    Participant
    Post count: 6

    Dear Jake:
    Your response makes a lot of sense. I’m going through what my Endo calls a relapse of my Graves Disease or Subclinical Hyperthyroidism. My TSH level has been dropping since last June; my current TSH is at 0.06, while my T4 is at 1.14 and my T3 is at 1.33. It was my hope, when I was first diagnosed with Graves Disease over three years ago, that I could beat this thing and put it into permanent remission. I really thought I had this thing licked last year, when I was taken off methamazole completely, but the euphoria was short-lived. I started having the jitters, heart flutters, and nodules, all of which gave my Endo a rational for subjecting me to more studies and tests. I had a fine need aspiration, wore a heart monitor for 24 hours, and had my blood tested every three months. Each time my blood was tested, my TSH level was dropping, while my T3 and T4 was going up. Today’s prognosis was a real downer for me, but reading your comments are making a lot of sense to me because as much as I have been rejecting the idea of killing off an organ that is so desperately trying to save itself, the organ appears to be losing and virtually killing me off in the process. So please, Jake, can you tell me what my readings really signify to you and point me in a direction that makes sense? Also, I have a real concern about subjecting my body to Radioactive Iodine; I find it difficult to believe that this course of treatment targets only the thyroid and does not do harm to the host. It also concerns me that RAI involves so many cautions, because if this is a safe, responsible treatment why is it so dangerous to other inhabitants of my household? If I opt for surgical removal of my Thyroid, is it effective? Lastly, the removal of my Thyroid will make my system slow down to the point where I will have to take another drug for the rest of my life to regulate the hypo effects. I’ve read that this is far easier to control than hyper, yet there is a period of adjustment. I am really confused and hoping you can provide me with some advice. Thanks so much.

    Ski
    Participant
    Post count: 1569

    Hi KMB,

    I’m going to make this brief for now ~ kind of general ~ but you can find more info in other posts here.

    First, about RAI: the amount of radiation we ingest is very small, and our exposure is about equal to a LONG day of sunshine. Thyroid cancer patients receive 10 to 20 times what we receive, and even then it is considered more beneficial than harmful. Long term effects have not been proven, and RAI has been given for more than 50 years, so there is a great deal of evidence. Iodine is only used in the thyroid, so it is taken up in the thyroid only. The rest (the balance of the 100%, after your uptake figures) is expelled from the body via the liquid waste channels, primarily urine, but a teeny tiny bit in the sweat and saliva. For this reason, we are urged to drink a lot of water, urinate frequently, and protect others from our sweat and spit, which is simply to avoid their ingestion of ANY of the RAI. We need treatment to our thyroid, they do not. Within 48 hours, the excess has been expelled and what remains is concentrated in our thyroid. At that point, precautions have more to do with the slight bit of radiation exposure a person could have by being close to our thyroid. RAI has a half-life of 8 days, meaning that every 8 days, half of the isotope will go away. If you were given 10 millicuries, with an uptake of 80%, then 2 millicuries would be expelled in the first two days, and 8 millicuries would remain in your thyroid. After 8 days, 4 millicuries remain. After 16 days, 2 millicuries. After 24 days, 1 millicurie, and so on. During the period when ANY would remain, precautions have to do with distance and time. If we are to be very close to someone, we should limit the time period. If we need to be with them for a long time, distance is better for them, to limit the amount of exposure they can have. Radiation is a lifetime accumulated thing ~ we all get occasional x-rays and scans that expose us to some type of radiation. Limiting the lifetime exposure is the point behind lead aprons at the dentist. It’s not as if we’d melt in the moment, being exposed. It’s just a good idea to limit exposure when you can.

    About thyroid hormone replacement following removal of the thyroid (through RAI or surgery): Yes, there is a period of adjustment, just like with ATDs. The difference is that, once the thyroid is completely destroyed, you are working from a blank slate, instead of what can be a moving target, with antibody activity taken into account. At first, following RAI, there is a similar effect due to the slower destruction of the thyroid for a period of time, when you are chasing a moving target. The difference is that you KNOW levels will be dropping, so you can accommodate the likelihood and perhaps minimize the amount of time it takes to find YOUR normal. In addition, thyroid hormone replacement pills are made from the exact chemical replica of our thyroid hormone, so it is not necessary that it be "processed" through the liver like a pharmaceutical, and there is no long term risk associated with accumulating "by products" of the thyroid hormone replacement in our bodies. The only "side effects" we can suffer are symptoms of hypothyroidism when we’re not getting enough, or hyperthyroidism when we’re getting too much. Rarely, people find themselves to be allergic to the fillers in the pill, and for them there is a brand with no filler and no dyes.

    Surgery is absolutely a rational choice, if that’s what you want to do. Many doctors will advise against it because they have a knee-jerk reaction against anything invasive. It is YOUR choice. If you want to pursue surgery, you should be free to do that. There are some risks, of course. The area is rather complicated, and the vocal cords pass right through. In addition, at the corner tips of the thyroid are the parathyroids, which help to manage our calcium levels. Typically the surgery leaves those "wingtips" behind in order to preserve the function of the parathyroids, but odd things can happen and some people suffer continuing difficulty with calcium.

    The MOST important thing is that you understand everything about what’s going on, so you’ve made a really good start by coming here.

    Let us know how it works out for you!

    msmissy00
    Participant
    Post count: 5

    I have been diagnosed with Graves Disease since Oct, but im sure I have had it a few yrs. My worst symptom was hands shaking,and the graves rash on my shines. Im a nurse and it was getting hard to draw blood or start IV’s so I went to the doc. After test after test and changing doctors. Unable to take the ATD, I did start on beta blockers that has helped my heart rate. Overall I feel well. I have decided at this point not to take the RAI ( which both doctors want me to have). I figure as long as I can keep my heart rate down and keep my rash under control and I feel well, why trade one problem for another. I have heard Hypo is just as bad. I have lost 60 lbs but that was 60 lbs I need to lose. I am overweight, and the weight has come off over the past several yrs. So as of now I plan just to wait.

    Jake_George
    Participant
    Post count: 120

    So please, Jake, can you tell me what my readings really signify to you and point me in a direction that makes sense?

    Actually, no I cannot nor will anyone here tell you what your tests mean. Not being difficult or not wanting to help, but your tests are best interpreted by your doctor. You see it can all be skewed by what else is going on in your system and what meds you may be taking. Both prescribed and over the counter. What your tests show are really only a very small part of what is going on. It is like driving a car while wearing blinders. You can only see what is ahead of you and not what is also going on all around you. Your doctor looks at everything not just your tests. Your tests tell him what is happening there but not what else is going on with your system. So no I cannot tell you what they mean or give you a course of action.

    Also, I have a real concern about subjecting my body to Radioactive Iodine; I find it difficult to believe that this course of treatment targets only the thyroid and does not do harm to the host.

    RAI is radioactive iodine. The thyroid is the only organ that processes iodine and that makes it target the thyroid and nothing else. That being said, the excess radiation is gotten rid of by your sweat and urine. So for a small time your bladder will hold some excess radiation until you void. That is why some of the precautions are in place.

    It also concerns me that RAI involves so many cautions, because if this is a safe, responsible treatment why is it so dangerous to other inhabitants of my household?

    You will radiate some radiation that is being held in your thyroid and bladder. That is why it is wise to keep away from small children and pets. Even though it is a small amount there is no need to expose them if you do not have to.

    If I opt for surgical removal of my Thyroid, is it effective?

    Very effective. But you must remember it is considered major surgery. Your levels will drop right after surgery because your thyroid is gone and it is not going to release any stored up hormone.

    Lastly, the removal of my Thyroid will make my system slow down to the point where I will have to take another drug for the rest of my life to regulate the hypo effects. I’ve read that this is far easier to control than hyper, yet there is a period of adjustment. I am really confused and hoping you can provide me with some advice. Thanks so much.

    Once again you must remember that your thyroid is dying off. If it runs its course and dies off you will still have to take replacement hormone for life. It is easier to control hormone levels after thyroidectomy because your thyroid is not there releasing stored up hormone.
    I hope this helps.

    James
    Participant
    Post count: 115
    msmissy00 wrote:I have been diagnosed with Graves Disease since Oct, but im sure I have had it a few yrs. My worst symptom was hands shaking,and the graves rash on my shines. Im a nurse and it was getting hard to draw blood or start IV’s so I went to the doc. After test after test and changing doctors. Unable to take the ATD, I did start on beta blockers that has helped my heart rate. Overall I feel well. I have decided at this point not to take the RAI ( which both doctors want me to have). I figure as long as I can keep my heart rate down and keep my rash under control and I feel well, why trade one problem for another. I have heard Hypo is just as bad. I have lost 60 lbs but that was 60 lbs I need to lose. I am overweight, and the weight has come off over the past several yrs. So as of now I plan just to wait.

    Msmissy,

    I am of like mind in many respects, however; it is essential that you get your thyroid levels in check using ATD. If you are having problems with one form of ATD, have you tried the other ATD (Methimazole/PTU)? If not you need to talk to your doctor about trying to switch from one ATD to the other. The other point to consider is that if the side effects are minor, particularly during the time you are on higher doses (rash etc), these symptoms could subside as your need for ATD is also reduced. We typically start out at higher doses to get back to normal more quickly. Your Doctor may be able to assist you concerning these issues as they arise. If you have the rarer more serious side effects from ATD, you would have to look at other options. You can’t survive on Beta Blockers alone, even if you feel well, your body is still in melt down mode (not a good thing).

    James
    Participant
    Post count: 115

    I was diagnosed 15 years ago and I too have done my own fact finding, but more importantly than that I, like many of you have taken my health issues very seriously and used conventional medicine to assist me along the way which by the way IS necessary. I have been reading through this thread with interest and hope (if nothing else) to be fair in my assessment. While I don’t agree that there is a “cure”, I have a pretty good idea of what Sabeena is talking about and she makes some very good points which are far too often overlooked; especially when she makes references to lifestyle, diet, and triggers to autoimmunity. These lifestyle/diet changes alone can’t be looked at as a cure, but an overall approach to good health in general which should be taken far more seriously than it often is. I believe Ski articulated this quite well in some of her posts recently.

    The notion that symptoms are often treated but not the underlying immune system, is a very good point and again often discounted. While we all agree that the immune system is not that well understood; there is some evidence to support that there are certain triggers to autoimmunity. A practitioner (if he or she is trained in that area) can make some recommendations based on what IS known about the immune system.

    Graves’ is never a quick fix no matter what option one chooses, and can come back at any time, but that doesn’t mean that the destruction of the gland is always an inevitability. We sometimes hear the words, “permanently diseased organ”. In this sense, I don’t know that “diseased” is proper terminology for the state of the thyroid, when it has the potential to function properly again (while in remission). Perhaps “damaged” would be a more appropriate term? No doubt, cytokines activated by antibodies attack Fibroblasts in potentially ALL targets where Fibroblasts exist. If we insist on using the term permanently diseased to make a point, we should also make the point that the thyroid is no more “diseased” than any of the other targets of the antibodies (eyes, shins etc)., yet exacerbation of symptoms in these regions may also subside over time. Does destruction occur in the cells of these regions, absolutely; and yes some damage may indeed irreversible. I cringe however, when I read posts from time to time decrying the inevitable death of the thyroid, when in fact the gland may compensate so well after the onslaught of the body’s destructive forces. After 15 years since diagnosis, a good number of them in remission now with normal blood tests, I am reticent to say that I have a permanently diseased organ that is doomed to die an untimely death. Am I cured? I wouldn’t say that either, although I would like to <img decoding=” title=”Wink” />. I do have Graves’ disease and am blessed to be the healthiest I can possibly be. There certainly IS a potential to go hyPOthyroid over time though, but to put things in context; it could be soon or even decades before that happens. It is my opinion that some thyroid function is better than no thyroid function at all.

    I think we also have to be mindful about what treatment WE are most comfortable with and not what might or might not be the trend in Europe, Japan, or the U.S.A.

    Take care everyone and thanks for your very thought provoking posts! I’ve enjoyed reading them all.

    James

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