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Well said, James. This is exactly my own view on the matter.
The American Autoimmune Related Disease Association at http://www.aarda.org has some pretty good information about autoimmunity and autoimmune diseases of which there are about 80-100. Grave’s disease is only one of them. There is some good information about the interplay of genetic predisposition and environmental triggers as well as other patient/research information.
Their mission statement:
The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.Ok, first of all, I am here to share my own successful experience in hope I can inspire people to think twice before doing any permanent damage to your body. I am not here to persuade or change beliefs people have about science.
In the old days, I remember that tonsils were surgically removed when infected. Today, most physicians agree that it is not the best way to treat them. We thought certain vaccinations were good, as were antibiotics. Today we know that doctors can be wrong. Generally, when it comes to my health, I am not willing to blindly follow every doctor’s directions. Especially when it involves permanent damage to my body!
I think the disagreement here is that some people have absolute faith in this idea that medicine is a proven science. A treatment is either true or false. It may work this way for a car. But you can obviously see that it doesn’t work for every human being! I happen to believe that the human organism must be considered as a whole, with emotions, psychology, proper nutrition and loving care. And before anyone even considers a change in lifestyle to address an auto-immune disorder for recovery, one has to have no doubt about their own inner abilities.
Statistics and scientific evidence do not necessarily deliver facts. They are speculation and interpretations, and often they are funded by pharmaceuticals and medical organizations that profit from them. It is unfortunate that studies that support recovery with less invasive measures and less medication are often ignored because they lack funding.
Further, in the medical field, statistics are usually based on participating physicians or their medical boards. Those are usually the ones that prescribe the conventional treatments, and most of their patients will follow them. So of course destroying your thyroid and taking meds will get rid of the symptoms – and – of course they can claim those are effective treatments. But what have you done to your body now? Now you are dependent on pills for the rest of your life and your thyroid is destroyed! How effective is that for a solution to a disease that is still not fully understood?
Consider also the fact that US medical students are still not required to take nutrition classes, or courses that study the interaction of human emotions with the human body. Medical students are still trained to deal with specific symptoms without addressing the human factor, meaning emotions are completely left out. That is changing however. Today we know that love and positive emotions benefit our arteries, while anger harms them. Consider the strength that the human emotion love can create. We can no longer deny that human emotions have a direct link, influence and impact on our health.
Addressing the emotional factor here makes especially sense because the thyroid manages hormones, and hormones are directly linked to your emotions. Why is it so hard to understand that humans are organic bodies that go hand in hand with your emotional and mental state? We are not cars! Science makes sense when we built rockets, or build ships.
Scientific evidence is also based on animals tested in laboratories, and linked to studies performed by the same doctors who call the destruction of a patient’s thyroid and dependency on meds effective treatment. And please understand that I am not saying that my approach will work for everyone. Every human is different and I think every case requires different approaches. We are all so unique, yet, we insist on these one for all solutions! What I am saying here is that if you want to prevent RAI or surgery, focus on your auto immune disorder, and believe in your bodies ability to sustain and heal itself. Many people are quite capable of riding out the disease. And if it doesn’t, you can still take RAI.
If people want to blindly follow directions of every conventional doctor because of so-called scientific evidence – fine. If you want to place your faith, health and life in the pharmaceutical and medical industry because they claim to have the only right methods – fine. If that works for you – great! But please respect that I have chosen a different route and it worked for me. And I am here to inspire anyone who thinks they can conquer it differently too. I got involved with my own treatment; I refused to follow so-called effective treatment methods – because I wanted to be healed, not left with more health issues. For me, living on meds for the rest of my life is NOT an option! I attended to my immune system in spite of most doctors telling me the same things that I read right here, too. I am completely healthy again. I know that I will never deal with thyroid issues again! And I have a problem with people telling me differently because they are not the ones sticking on my skin and flesh! They are not the ones in touch with my soul and body! I didn’t appreciate this arrogance from my doctors, and I certainly don’t appreciate it here!
People should be encouraged and inspired to try new approaches by using their own inner strength and judgment. That is what we should promote. And that is in fact what many people here are looking for. I received private messages from individuals who are very interested in non-conventional methods. They are looking for hope, they are looking for alternatives, they are looking for inspiration. Many tell me they are uncomfortable posting here, because they get lectured by people who give them the same phrases they got from their doctors. And doctors will usually rush them into a decision. Shouldn’t this forum be an open place where all people feel comfortable discussing their ideas and experiences? Or is this board meant to be a lecture hall, where many will ask, and a few will claim the truth? Should we really narrow ourselves into believing that conventional treatments are the only scientifically proven ones? Because, they are not. You can simply not prove to me that I am not cured! My thyroid may be scarred, if at all, but I now live a life without meds, with a functioning thyroid, and I am fully confident that it will remain this way.
For those who think I am just an exception, or got lucky, well, again, you want to believe that so-called scientific evidence is in fact prove. I can’t, and won’t, argue with that. I am not here to change anyone beliefs. You may view my principles of healing and health as unsupported. They may be unconventional and progressive, but they are not unsupported. A little research will show plenty of people who have overcome illnesses and diseases with similar principles and methods. Look at their extra ordinary stories and examine what these people have in common. They all share a certain attitude. It doesn’t matter so much what specific diet they use, or how much they exercise, or what herbs they take. What matters is that they all maintain a positive outlook and faith in their own abilities. They let their bodies know that they care and they are good to themselves. It matters that you avoid toxins. It matters that you increase positive feelings and decrease negative ones. And it matters that you laugh, feel empowered, and allow love in your life. However you can get there – that’s what got me there. Not luck. It is a mental adjustment as much as it is a physical adjustment. It starts with encouragement – your own encouragement. And who do you think will pay for a scientific study that will attempt to measure such principles on recovery and health? The pharmaceutical industry?
Take simple analogy. Most of us have had headaches I am sure. Well, how many of us out there know why they got that headache? You may have a headache after yelling at some kids all day long. Or may be you partied too much the night before. The point is, there are people who have a sense for why their body reacts in a certain way. And that is a good thing! Nurture that ability! A doctor may tell you to pop some pills, and there is probably scientific evidence saying that this will be an effective treatment of headaches. Even though, you may be better off in the long run by not taking pills because it will allow your own body to develop strength and your immune system may become stronger because of it.
A previous post complained that he / she can not reduce stress and avoid work. Well, anyone who is not willing to put the well being of your body first has the choice to destroy the thyroid and live on medication for the rest of their lives. It is not my choice to make. And I am certainly not here to persuade anyone. I like to encourage anyone who is confused and desperate to find your inner strength, to give your body the attention it needs, and most of all to give it some time. Everyone has the ability to learn a feel for what their bodies are lacking, and what they need. What do you have to lose?
As long as you are able to keep your thyroid hormone levels within the normal range, bravo. If your thyroid hormone levels are outside the normal range, you need to do something to address that imbalance first, then move on to heal the rest of your body by whatever method you choose.
Dear Ski and Jake:
Thank you for the replies. They were frank and informative. Of the two methods of thyroid removal, it is beginning to look like the RAI is the most complete. How long does this process take? How long does the patient have to stay out of circulation during the uptake? I’ve read that RAI can affect the eyes, causing more of a bulge, is this true?
Thanks for your advice.
KMBHi again KMB,
The process of "removing" your thyroid through RAI can take varying amounts of time, depending on a few factors. I was initially given what is referred to as a "low dose," which was NOT my wish, but I was not aware that I needed to discuss this with the dosing doctor. My endocrinologist and I agreed that I wanted an ablative dose, and the radiologist/oncologist made up his OWN mind before choosing my dose. This led to a prolonged period without going hypo, and actually continuing to be hyperthyroid at a subclinical level, which can still be dangerous over time. I ended up having to do the RAI a second time. Had I been given a large enough dose to achieve ablation on the first try, the time period before I felt normal would have been shortened a great deal. I was told at the time that RAI does most of its damage in the first six weeks, then it is capable of continuing the process for up to six months, at a very low level. If you are given enough to destroy the gland completely, it should be "gone" after six weeks.
Still, it can take that long just to flush the excess thyroid hormone out of your bloodstream, so it’s possible that at or near the six-week mark, you could find yourself ready to begin replacement hormone. It doesn’t happen to everyone that quickly. If you do not go hypo that quickly, you may find yourself with steadily lowering hormone levels, through a period of relative "normal" and ultimately into the hypothyroid range.
After you go hypothyroid and you need replacement hormone, the process of bringing the levels back into the normal range can also take a little while. You need to give your body a full six weeks to adjust to any hormone replacement dose before you can effectively evaluate the blood levels it provides to you, and then adjust. You also do not want to raise your replacement hormone dose too quickly, as that can trigger symptoms of rapidly fluctuating levels. Each time you change doses, you’ll probably have a couple of weeks where you feel a little up, and a little down, then the symptoms even out a little. It might feel as if you are suddenly going "more hypo" or "more hyper," but you need to wait until your body adjusts, then take blood levels, to truly know the result it’s having on you.
Remember that at all times, you are closer to health. It’s time consuming. It can be frustrating. But each day you’ll be closer to the right point.
You usually need to keep away from people (at least six feet) for the first couple of days. Sometimes they give a capsule that takes time to "release" so that you can have someone drive you home "safely." Precautions for small children and animals can be a little more strict, because it’s hard to make them understand a six-foot rule. Also, doctors have VERY different opinions on the restrictions following RAI. You’d be wise to talk with the doctor ahead of time ~ I am constantly surprised by the lack of information given to patients in this regard. Many find out ON THE MORNING OF THE DOSE what the restrictions will be. How can you possibly plan to be away from everyone for at least two days when you are only discovering this on the day of your dose? Okay, off the soapbox. At any rate, after the first two days, you don’t need to be isolated quite so much. You don’t want to take any long road trips or plane rides for a little while. The need for restrictions goes away rather quickly.
About the RAI and bulging eyes: In one study, about 16% of the patients experienced a "temporary worsening" of their eye symptoms after RAI. Neither term was well defined. I had a few months of gritty eyes, and a tiny bit more bulging and irritation, after the first RAI. After the second, I had no such changes. None of it made my eyes much worse, but my eyes weren’t very bad at all to begin with. People who are experiencing worse eye symptoms may want to take a concurrent course of steroids, because in this study, those patients who took steroids had NO temporary worsening of eye symptoms. Steroids carry their own risks, so you need to weigh the risks and benefits before making the decision for RAI, and then before making the decision whether to take steroids.
Ski, I agree with you in that you first have to find your balancing point when taking medication. This is a time consuming and frustrating period every Grave’s patient has to go through. I know that I did. But I also think that patients have to be actively involved in the amount of medication prescribed, and doctors should be willing to work with the patient and encourage the patient to find this balance. Its like sitting on a balancing bar, whewre you have to find the balancing point. It’s tricky and it does require time and sensitivity.
However, encouraging the patient to be involved will have two benefits. For one, you can prevent damaging your thyroid too much; second, patients will learn how to "feel" the affects of the medication, and then be better able to determine when the balancing point is reached. This will be different for every person. Because only they themselves will be able to make that call! If I had followed my specialist directions, I would have taken SIX TIMES the amount of PTU prescribed! The thing was, once I understood what was happening to my body, I didn’t want to slam bang myself down. I wanted to come down slowly. That’s what felt right to me. So I took very little PTU, just enough to see how it would affect me. And sure enough, I could feel the flip over to the hypo side. I didn’t like it, and I reduced the PTU even more, even though my thyroid specialist insisted that it was crucial that I continue the prescribed dosage!
What if this slam bang conventional medication treatment isn’t the way to go? It may work for laboratory animals to quickly resolve the symptoms, but for a human organism, it may just be too harsh.
Well, if you are the kind of person who already pops pills for every little illness, than you may have already deprived your self of the sensitively needed to detect malfunctions and imbalances in your body. And may it be noted here that I do not claim that my approach works for everyone!
But for those who usually avoid medications / toxins from entering your body, and if you are NOT genetically predisposed to Grave’s, I believe that you can attend to your immune system for recovery, by participating in your balancing act!
Sure, I may be part of the “exception” group where Grave’s went into remission without anyone knowing exactly why. But if physicians would encourage people more to participate in their own treatment plan may be we would see more success stories!
James wrote: 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.James,
Thanks for your post. I find it frustrating that so many patients have their treatment choice influenced by a doctor who tells them, “you are going to go hypo anyway” – which is not always the case. The patient is the one who has to live with the consequences, so the decision needs to be made with full disclosure of the potential positive and negative outcomes of each treatment option.
I have been following this thread with interest, and I applaud those who have been able to achieve remission without using conventional medicine. However, before recommending this path for anyone else, advocates of this approach need to be aware that this is also a *choice* — and it has an even wider range of positive and negative outcomes than selecting from the three conventional medicine options. The best possible outcome is healing your body without surgery, radiation, or drugs. However, the worst possible outcome is that untreated hyperthyroidism can lead to thyroid storm, which is potentially fatal.
I watched an interesting film a few weeks ago called CrazySexyCancer by Kris Carr. Ms. Carr has a rare form of cancer, and it was interesting to watch her journey as she worked to achieve optimal health. I would not make the same life choices that she has – but the program seems to be working for her. I guess the moral is that we all have to find out own path to healing.
**Edit** – One thing that I forgot to add: While I know a few people who make dosing changes on their own, it’s really better to do this in conjunction with a lab test and a doctor’s visit. Hypo/hyper symptoms can somtimes overlap. For example, some may get heart palps when they are heading hypo. Mistaking this symptom for hyper and increasing meds would only make the problem worse.
Thanks again, Ski for the really great response. You are providing me with a lot of insight into the process. I will request a dosage large enough to get rid of the thyroid in one process, rather than repeating like you had to do. Now, after the two day period of being away from others, is it reasonable to return to work? How about your normal exercise routine? I am a cycle (aerobics) instructor and I also work a full-time job, what can I reasonably expect is a normal time period to stay away from my normal routine? Throughout the process of the RAI uptake, how did you feel? Were you lethargic, or sick to your stomach or have headaches? How was your mental state? Were you depressed and out of sorts or were you feeling relatively sane? This is really a complicated process because of the multiple demands on my schedule and finances (just like everyone else, I’m sure). While I would love to hear you say that "two days and you’re good as new," I have a feeling that the answer is more-likely to be a couple of weeks down and a couple of months stabilizing. By six months, I can expect to be ‘normalized.’ Am I fairly accurate in my assessment?
Best,
KMBHi KMB,
Glad I’m able to be of some help to you! After two days, you should be able to get back to work, unless you work taking care of small children or pets, in which case you may want to be more prudent, but I’d check with the doctor to be sure. I felt pretty normal throughout, the RAI didn’t make me feel significantly different itself, in other words, no stomach upset, no headaches, depression, emotional symptoms, in the first couple of days. It was truly like a couple of days off, except I couldn’t go out to the store. If your doctor suggests using disposable dishes, remember bowls!
” title=”Very Happy” /> That was one I forgot. Exercise is very individual. You probably want to wait at least those first six weeks, just to be sure the excess thyroid hormone is out of your system. Then start evaluating your strength and stamina with a professional, a physical therapist would be perfect.
There can be one short period of time, a couple of weeks after the RAI, when you may feel extra hyper. This is attributed to elevated levels of hormone due to the dying thyroid cells releasing the hormone they’ve been storing. It’s usually transient, perhaps a few days’ time, and you can typically discuss with your doctor taking some more beta blocker to counteract the symptoms. It did NOT happen to me at all, so presuming you’ll need the extra beta blockers may be a mistake. Discuss this with your doctor so you can take care of it in the moment if it happens to you. The doctor may be willing to give you some extra beta blockers and instructions on what you must be experiencing in order to consider taking more.
Six weeks is the earliest possible time that you can find yourself hypo, but it doesn’t happen for everyone that quickly. Once you DO go hypo, you’ll need to begin thyroid hormone replacement and that will begin an adjustment period as well. Some people are lucky enough to go with one dose that serves them perfectly, but that’s pretty rare. Just try to focus on the fact that you’re closer every minute, and don’t expect "full normal" right away.
One thing I would like to add to ski’s comments is that if your levels fall smack in the middle of normal and you still feel like crap then smack in the middle is not working for you. Your personal normal may lean more on the hypo side or more on the hyper side. Oh and learn to read your test results and make note of how well or poorly you felt when you have your bloods drawn.
Apparently selected links with suggestions about natural healings are not accepted here, and my previous post was deleted for that reason. So, if you are really trying to find info on alternatives to RAI, you apparently won’t find much support here. Nonetheless, I am living proof that they exist, and there are many others out there who have been successful with the same non-conventional approaches.
I am back to refocus on the actual reason for Grave’s – the autoimmune disorder. Since I can not provide the link or reference, I am just summarizing here what I found:
According to Professor of pathology Harvey Cantor from the Harvard Medical University, recent work shows: “a proof of principle, that you can mobilize the body’s own cellular mechanism for controlling the immune system to dispose of unwanted self-reactive cells”.
Dr. Norman Cousins and Dr. David Simon, Director of the Chopra Center for Well Being, suggest that the immune system doesn’t work independently. In fact, the mind and nervous system play a profound role in immune system function.
PNI studies, the science of psychoneuroimmunology, show that auto immune diseases are triggered by stress and diet and emotions. Supported by thousands of studies, PNI explains a mind body connection and its role in health. They continue saying that the mind body connection plays a major role in healing as well. Various methods of stress reduction, including yoga, meditation, tai chi, and spiritual healing, have all been shown to reduce symptoms. And, as in my case, Graves’ patients can enter remission through a combination of stress reduction techniques and dietary changes. This without destroying your thyroid!
Physical and emotional stress can trigger an autoimmune disease, as can different environmental chemicals, as well as foods that contain saturated fats and sugar. These elements have shown to cause changes in the immune system. And, quote: ”Especially saturated fats and sugar are responsible for a decline in the number of white blood cells, suppressor T lymphocytes, which would ordinarily stop the autoreactive immune (autoimmune) response before autoantibodies were produced. Hormonal disruptors mimic and displace the body’s natural estrogens, triggering the development of several different autoimmune diseases.”
Further: “The role of self-care in autoimmune disease cannot be emphasized. The most important factors are 1) stress reduction, 2) improved diet with an emphasis on high nutrient foods such as vegetables and fruits, and an avoidance of foods which tax the immune system such as meats, dairy, saturated fats and sugar and 3) an avoidance of hormonal disruptors such as certain plastics and chemicals, particularly artificial sweeteners, pesticides and fertilizers.
In terms of treatment, certain agents such as radioiodine used for hyperthyroidism, merely perpetuate immune system dysfunction. While aggressive measures are used to destroy the thyroid, which is the victim not the cause in autoimmune hyperthyroidism, these agents may lead to the development of other autoimmune conditions. Before any aggressive measures for autoimmune disease are considered, holistic health options should be employed.”
I am posting this because there are a lot of people interested in alternatives to RAI and they e-mail me. If you already destroyed your thyroid, fine. It’s too late for you. But please don’t dam those who still have a chance to recover without harming your body! May be if more people would try something else first, there would be more cases showing remission without RAI!
And consider this directly from the governments "National Library of Medicine" (I suppose this government link would not be adequate as well?)
"Two of the most compelling features of the last twenty years have been dramatic achievements in the laboratory and striking advances in biomedical technology. Together, they have literally extended the frontiers of the mind by embodying emotions in the biology of the brain more successfully than ever before and by creating the possibility of identifying the intricate interconnections between brain-based emotions and the functioning of the neuroendocrine and immune systems.
…
In perhaps the most exciting development of all, a new field has emerged which is starting to combine the latest in the neurosciences with the latest in immunology to provide the scientific basis for understanding relationships between emotions and disease once explored only in clinical settings. Not yet possessing a generally agreed upon name, this new field has been able to demonstrate previously unsuspected but now verifiably direct connections between the immune system and the neuroendocrine system."There is no question that we can be active in our own care. You can choose to pursue any course of healing/therapy you’d like. If your thyroid hormone levels are out of range, however, you must address that imbalance along with whatever else you’re interested in pursuing, and you must get those levels back into the normal range as soon as you can.
There is a great deal of research going on in this regard, and we will ultimately benefit from it. As soon as something has been peer-reviewed and proven to work, our doctors will know about it, and so will we. Just make sure your hormone levels are normal, and stable. You can’t really, truly heal your body until then.
The sad thing about this is that there isn’t a whole lot of research done because a "best practice" (i.e. radioactive destruction) has been established. papers about natural methods (i.e. lemonbalm) are buried. the psychoneuroimmunology front is promising though.
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