[James]

in reply to: Desperately need advice #1072696

lin wrote:If there is anyone out there who has been on ATDs for long-term, PLEASE tell me for how long and how things went for you. Since I was on them for 5 years + before, I don’t know anyone who has been on them for longer than I have, and I would really like to hear about it if someone has.

Thanks So much again.

Hi Lin,

In a total of 15 years, I had been on and off of ATD’s for the first 10, having had several remissions and relapses in the course of that time period. One of my mistakes was pulling off of the meds too early, rather than staying on smaller doses over the course of a longer period of time. The last 3-5 years of the 10, I was on very small doses (as low as 15mg/WEEK almost at placebo levels, but it was worthwhile). I don’t know if it was the supposed immunosuppressive properties of ATD or just staying euthyroid for an extended period of time that helped facilitate and sustain a long term remission, it is hard to know for sure. My experience was that each relapse was shorter in duration and each subsequent remission was longer lasting. I’m convinced that some positive lifestyle changes had something to do with that . . . but I digress. Presently I’m off of ATD for over 5 years now with ideal thyroid levels. Each individual circumstance can be quite different though.

I have corresponded with MANY people over the years who are 5 plus years on ATD’s; in fact one woman that I know has been on ATD over 30 years! In the end it is a very personal decision that has to be done in conjunction with a supportive doctor. You can’t really do it any other way.

Best to you!

James

[James]

in reply to: Desperately need advice #1072689

First of all I would be compelled to question the doctor as to what specific medical basis he draws from when coming to the conclusion, “ATD’s are too hard on your immune system”. Did he requisition blood tests for WBC and liver function, and if so what were the results of those tests? It his answer is “just because”, that isn’t good enough. If you are adamant about continuing your regimen of ATD therapy and can maintain a euthyroid state at low doses; AND there is no medically compelling reason to preclude you from doing that, you will need to find a doctor that will support you in that decision. It appears that the Dr. had you on some form of Block and Replace or Modified Block and Replace therapy. There are different theories as to the effectiveness of this treatment regimen. I personally believe that it is neither more or less effective than just taking small doses of ATD, and I’m not sure if there are any studies out there that can back that up.

If 5mg of Methimazole is “just enough” when combined with Synthroid, why not simply ask your doctor to remove the Synthroid and go on a lower dose of ATD? I was on as low as 15mg/WEEK to keep my levels in check.

Wishing you the best in finding a Doctor that is willing to work with your decision and best interest at heart.

James

[James]

in reply to: RAI Ablation #1072712

April,

I note that you mentioned that your endocrinologist recommended that you do RAI, but how do YOU feel about that decision. That is really what is important here. If you have resigned yourself to RAI at this point in time after trying ATD; I think that Ski has done a good job explaining the issues surrounded that option. I think that this group of Facilitators can provide you with all kinds of support in that area because they have been down that very road.

My experience on ATD’s was similar to yours in that I was in and out of remission, in my case several times over the course of a good number of years. Contrary to what may be the current belief, each of my remissions lasted LONGER than the previous remission and each relapse was much shorter in duration. I was definitely not one of those who had trouble achieving remission more than one time. One of my mistakes (I believe) was coming of off ATD’s too soon. I learned that very small doses of ATD over a longer course of time benefited me immensely. I’m not sure if it was keeping my thyroid levels at bay (euthyroid), or the immunosuppressive properties of ATD or both, that assisted in achieving remission and then finally staying there long term (over 5 years now). If you have been on small doses of ATD while you were in remission, that is encouraging. I’ve corresponded with people who were bent on staying on ATD’s as long as they could, but because of various factors, like a grossly enlarged goiter as well as the need to be on high doses of ATD; an alternate treatment option was ultimately necessary. I don’t know the details of your specific situation, but hope that you can continue the dialogue with your Doctor in making the best possible decision for you. This forum definitely has a variety of people all with a unique set of circumstances.

Wishing you the very best!

James

[James]

in reply to: Anyone that tried natural methods/diet? #1073650

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 ” 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

[James]

in reply to: Anyone that tried natural methods/diet? #1073649

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]

in reply to: New here, have lots of questions #1074127

Christa,

I share your sentiments on many fronts so I felt compelled to respond to your post.

Firstly: Your Doctor said that it is OK for you to exercise. I can’t tell you how important maintaining some degree of exercise was so important to my overall well being throughout this time in my life (not from a weight management perspective), but more from a “keeping sane” perspective. I was probably at the hallmark of physical conditioning at the time of diagnoses some 15 years ago, and dealt with the disease expediently before any major physical damage was done. Mr Doctor fully realizing that, said that I COULD maintain a fitness regimen, but told me not to plan any Marathon equivalent activities, until things were well under control.

Contemplating stopping the meds while in a hyper thyroid state is probably the worst thing that you can do however. I share your sentiments in that I too do not like to have to take medication for anything, but sometimes we do not have a choice. Especially if it is your goal to keep your thyroid and aiming for remission. Like Dianne said, if you choose alternative treatments, your doctor must be on side and should be able to guide you as to what things you should avoid at a minimum. I am a strong believer and proponent of good lifestyle choices/diet too; and believe that all these things play a role in healing and getting our immune system (the underlying cause) back on track. Proven or not proven, good living (including stress reduction), can only help in the long run, no matter what treatment option one chooses. I think you are on the right track as far as that is concerned. Your goal should be to take your medication as required under your Dr’s care and strive to reduce the requirement for meds over time as determined by future blood tests. Too idealistic of an approach? Perhaps some would think so, but for me it was practical and I got the results I was looking for. Looking back over the last 15 years, I wouldn’t have done it any other way.

Wishing you the best and look forward to hearing about your progress.

James

[James]

in reply to: Just Diagnose, why would I choose any treatment other than.. #1074295

Youngmanwithgraves,

I felt the same way you did, that is, questioning why I would want to ablate my thyroid without trying ATD’s first. This makes perfect sense to me.

If it is your inclination to go this route, than go for it! It IS a medically acceptable treatment option. Some people have allergic responses to the drug and cannot tolerate it. It is those people who may not have a choice. Unless there is some medically compelling reason that you cannot take ATD’s, it is a very valid option.

If it is your intention to aim for remission, I always encourage individuals to carefully look at their lifestyle and environmental factors, particularly during the period of time leading up to diagnosis. You can discuss possible triggers with your Dr. in more details. Although some environmental triggers may not be proven, I am of the opinion that this DID play a role in triggering or at least exacerbating the disease in my particular situation.

In most cases this isn’t going to be a quick fix, it can take a long time to achieve and sustained a remission and requires some discipline and determination, but in my view it is well worth it, particularly if you respond well to ATD’s (which is more likely than unlikely). The most important thing for your right now is to get your thyroid levels in check.

Wishing you the best! Keep us posted on your progress.

James

[James]

in reply to: My news and question on aspartame? #1074581

TaraPetit wrote: . . . . However, weight gain. Are we, or are we not, supposed to avoid the artificial sweeteners? Can I use Equal? Or is that a trigger for starting hyperthyroid all over again?

Thanks so much everyone for being here for me!

TaraPetit

Ski is 100% correct when she says that Artificial sweeteners should not have an effect on your thyroid levels in of themselves. However, the processes and ingredients used in producing these artificial sweeteners may (although not proven) have some bearing on our immune system health which is the basis of our problem to begin with. It is always best to stick to what is most natural or whole in this very artificial world that we are living in. From my experience, minor dietary changes have paid off BIG as far as overall health is concerned. Congratulations on the progress you have made!

James

[James]

in reply to: PTU QUESTIONS! #1074764

To get to the heart of your question:

Trisha wrote:Her Dr. is aware, if the situation does not worsen this week, we speak again on Friday to determine a course of action. Just wondering if some side affects go away with time.

Glad to hear that you are at able to control the condition (hives) to some extent, and that otherwise your daughter is doing “very well”. That is positive news.

My personal experience has been that any itching and hives DID subside once a euthyroid state was achieved and smaller maintenance doses or ATD’s were administered. Typically larger doses are administered initially to the thyroid levels down expediently. My doctor was far more concerned about other side effects (which fortunately I didn’t experience). My choice was to stay the course and my Doctor worked with me to that end. Proper ATD management is SO crucial. As always, make sure your Doctor is aware of any and all side effects (which it appears that you are doing). Good on you for being such a concerned mother.

Take care,

James

[James]

in reply to: Questions about TSH Levels and Running #1074989

cath2284 wrote:3. TREATMENT WITH MEDS: I am really hoping after all I have read on here that I can avoid RAI or surgery. From what I have read, I have pretty mild symptoms; lots of the symptoms but none that have wreaked complete havoc on my life so if the meds improve things to where they are stable, I see no reason to give them up for something permanent. But are there any advantages to doing something permanent versus just staying on the meds as long as they work?

I can’t speak to the “Advantages of doing something permanent”, as I have not gone down that road, but many others have, and can tell you the benefits and pitfalls for their experiences.

As for “meds”, I think you mean Antithyroid medication in this context. YES, but you have to be diligent in ensuring your levels are optimum for you (normal ranges may vary), and take one day at a time. Some people have had serious reactions to ATD’s (but it is rare), so that has to be kept in the proper context. If your Dr. is onside, and there is no medically compelling reason NOT to take ATD, then go with what you are most comfortable with. You can always choose other alternatives later if need be. Just make sure you Dr. is willing to work with you in this decision. Not all medically professionals are great with ATD management. Proper ATD management is imperative.

Take care,

James

[James]

in reply to: Questions about TSH Levels and Running #1074986

I would have to agree with Joy. If exercise is such an integral part of our lives pre-diagnosis, and it makes us feel better psychologically and physically, there is some merit in maintaining some exercise post diagnosis, if for nothing else, our mental healths sake. I can relate to this totally. Part of my lifestyle always has been working out, running, cycling, and a day at the gym was and still is critical to my overall well being. My endocrinologist simply told me, if you are used to working out, continue to do so, but within reason. In other words don’t be training for a marathon right now, but you don’t have to lie down on the couch and wait there indefinitely either. Particularly if your body is conditioned to aerobic activity, doing nothing when you are used to a strict exercise regimen can be hard on us psychologically (that was my experience). If you have been active for any length of time you probably have a good idea of what your target heart rate should be (you definitely don’t want to be exceeding that right now). Factors like age, overall health and fitness level have something to do with this. If I was diagnosed today (some 15 years later), I don’t think I would have the same energy to maintain the level of activity I once did, especially after a GD diagnosis. All of theses things have to be considered of course and discussed with your Dr. If he is onside, go for it! It kept me sane during times of emotional upheaval which was a result of being hyperthyroid. I think we have to do everything we can to take care of our emotional well being as well (within reason).

Best to you,

James

[James]

in reply to: Anyone else have a cyclical case of Grave’s Disease? #1075039

joe_182 wrote: . . . Some of these antibodies damage the thyroid like in Hashimoto’s Thyroiditis, while our Graves Disease ones just annoy it enough to overproduce. I would think it would have to be a continous cycle though, but maybe not. I don’t know I’ve read as much as I can on this and some people talk about special diets, low in iodine, without preservatives and processed foods that can treat grave’s Disease. I mentioned this to my Endocronoligist, but she said that these reports were false and the antibodies that cause Graves Disease are gentic and can be cyclical and the only thing that really makes things worse is an extreme amount of iodine, but still that has to do with thyroid production and not the antibodies themselves. . . . .

Your endocrinologist is 100% correct in saying that it is false to assume that you can “treat” the thyroid (GD) with special diets, eating low iodine foods and avoiding processed foods. There are only three options that are medically acceptable to “treat” GD. Anyone who makes claims that a special diet can someone treat or cure your condition should be avoided at all cost. While being treated with ANY of the options to regularize your Hyper condition, it doesn’t do any harm to avoid iodine rich foods as these may exacerbate the problem. So to that extent you are correct. Iodine rich diets would be akin to throwing fuel into a fire as my endocrinologist once put it. Now with that being said, there is a lot to be said about just eating right to hasten healing and getting your body healthy and back into balance. I found that making some changes to my diet (like avoiding processed foods and eating low iodine) only helped to hasten healing and get my immune system back on track, but NOT without treating the hyper condition with a medically supervised and approved method first (one of the main three options). I was corresponding with one of the facilitators who mentioned that one of the past conference speakers spoke of correlations between environment and the immune system. This is one area of great interest to me, so I’ll see what I can find out and hopefully get them to share this information.

Take care,

James

[James]

in reply to: Update with questions????? #1075052

Just to add one important point to Ski’s thoughtful post.

Synthetic T4, IS indeed comparable to what you thyroid produces naturally.

A healthy thyroid however produces MORE that just T4, there is T3, T2, T1 and Calcitonin (Calcitonin known to participate in calcium and phosphorus metabolism). Although T4 and the conversion from T4 to T3 within the body is MOST critical to our bodies healthy metabolic function (NO argument there). The fact remains that there is more to the Thyroid that meets the eye and is more complicated than most of us give it credit for. If you are interested, a good endocrinologist should be able to assist you with any questions concerning the COMPLETE picture. Every Thyroid patient deserves to have ALL these questions answered to their satisfaction before they make a permanent decision.

James

[James]

in reply to: Update with questions????? #1075050

Hi Diane,

There seems to be a longstanding debate as to “how long” one should stay on Antithyroid medication, even amongst Doctors. From my experience, I would venture to say most wouldn’t recommend long term use (12-18months), but there are some Doctors out there that WOULD say indefinitely. I will be honest in saying that my bias tends to lean toward the “indefinitely” contingent. If you choose this option as your personal choice, you have to take the “one day at a time approach”, wait and see. The harmful side effects from ATD are rare (but they do exist). The minor side effects usually show up at the higher doses which are initially prescribed, but may go away once a maintenance dose is achieved (at least that was my experience). Others cannot tolerate either one of the ATD options at all and had to discontinue use. Bobbi is right when she says that antibodies “wax and wane” for no well understood reason, so you have to be mindful of that. But environmental triggers should be examined as well. Stress in ones life can definitely have a bearing on how our immune system responds and for obvious reasons is sometimes unavoidable. I have heard of individuals who were enjoying a remission; and then when they were faced with losing their home in a hurricane, they relapsed. I know I have food sensitivities, so diet in my case IS a trigger to autoimmune activity as I have experienced this first hand. I would be most interested in knowing if environmental/dietary triggers were discussed or explored amongst the panel of medical professionals at any of the NGF conferences as this is of great interest to me?

The idea of RAI is to get you to hyPO, in which case you will need to take a T4 equivalent pill for the rest of your life (not a big deal for many people). On the other hand, no one could possibly tell you how long you can or will have to stay on ATD’s, that’s why I come full circle and say, if you are going to choose that option, you must take a “one day at a time” approach. For me it wasn’t such a big deal. I went through a period of being really sick, but in the whole scheme of things, it was only for a season in my life. I now have the knowledge to deal with any relapses I may encounter in the future with some degree of intelligence. I wish I knew then (15 years ago) what I know today.

Wishing you the best!
James

[James]

in reply to: Update with questions????? #1075047

Diane94 wrote:Anyway, he confirmed that it was Graves, nothing that I didn’t expect since he had already said he thought it was but he thinks my best option was RAI. That scares me and the thought of doing something permanent before even trying just medication when there could be a small chance that it could work with just medication I think is worth the try. He said that he didn’t think it was going to work for me but was willing to let me try, however he did say that it may take up to a year and a half before we know if it really worked and even if it does 5 years from now I may still have to consider RAI. So, I’m starting on methimazole(Tapazole) and will be having my blood checked every month and will be seeing the endocrinologist again in February. . . . . . .

Just for clarification, when you doctor says, “to see if it ATD’s are going to work for me”. It is important to have a clear understanding of what he means when he says that.

Most everyone WILL respond to ATD’s, which is a block in the synthesis of the Thyroid Hormone. There is no question as far as that is concerned. ATD’s WILL block the synthesis of Thyroid hormone in virtually every patient. The goal is to get to that normal sweet spot thyroid level for you (euthyroid state).

The issues that remain are:
1. Can you tolerate the drug (no allergic reactions, side effects etc.) and;
2. Can you ultimately achieve remission with use of ATD’s.;
3. Can you find that sweet spot (normal thyroid levels)

I’m assuming that your doctor is referring to those factors?

Ski has made a good point. As long as you are comfortable with your choice . . . go for it. It is after all a choice and that is medically acceptable option. Only you can decide ultimately what is “right”. The length of time in which you remain on ATD’s will ultimately be your choice as well with your doctor on side of course. I have known people on ATD’s as long as 30+ years. Others for a variety of personal reasons choose to by-pass that option all together. ATD’s were my treatment of choice, but remission realistically can take much longer than just a few months. It can take many months if not years for some people. My choice was largely driven by the fact that I wasn’t prepared to destroy this very underestimated little gland without trying non ablative options first. We all have our reasons . . and whatever they are, we need a doctor that will respect our choices.

Keep us posted on your progress.

Best regards,

James

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