[James]

in reply to: Maximum amount of time you can be on meds? #1181756

Sometimes it is difficult to find a Dr. that will support the decision to stay antithyroid drugs (ATD’s) longer than 24 months. I can relate to that, but in the end my Dr. supported my decision as he couldn’t find a medically compelling reason for me to discontinue ATD’s, especially since I was in exceptionally good health. I had the same mindset as you, that is; it’s working so why not stay the course? I was on and off ATD’s for about 10 years (mostly on small maintenance doses during that period of time). I finally discontinued use of ATD about 10 years ago, and have been completely in remission ever since. One thing you don’t want to do is go off of the meds cold turkey. With a Dr’s assistance wean very slowly. I almost always relapsed when discontinuing the meds suddenly.

Take care!

James

[James]

in reply to: So what was your Graves story…. #1179271

My story spans almost two decades now, and in a nutshell; I was fortunate enough to beat the odds by achieving a long term sustained remission, although admittedly it took some time to get there. My thyroid levels were initially off the map with undetectable TSH levels.

Back in the 1990’s, the internet was very limited as a source of information and I relied mostly on instinct; text book information, and my Doctor. Initially, I had a strongly biased endo (as far as treatment options were concerned), but I had an open minded GP that worked closely with me for years. I stayed the course and remained on Methimazole for about 10 years with no serious side effects to speak of. The journey included a few bumps along the way, but with each minor set-back, a shorter term relapse was achieved and a longer term remission often followed. I was in and out of remission several times during those initial years and in retrospect, learned that I would have been far better off by staying the course with meds, without stopping “cold turkey”. I wished I would have insisted on TSI testing in order to confirm the appropriate time to come off of meds (ATD). For roughly 3 years (2000 to 2003) I was on minimal maintenance doses of Tapazole (10-15mg/WEEK), and seemed to do just fine at those levels. Finally in late 2003, I discontinued ATD therapy completely. Since that time I have been for regular blood tests (now about once a year), and because Thyroid disease (Hashimoto’s) runs in males in our family, I request TPO testing periodically as well. My last thyroid test (a week ago), couldn’t have been better. The size, texture and physical characteristics of the gland seem completely normal and healthy, even after 10 years of being barraged by thyroid stimulating antibodies. Having perused this board for many years now, I realize that everyone’s situation and result is different. Sometimes we are left with no choice, but have to take an option we would prefer not to take. I consider myself very blessed to have chosen a treatment option that not only worked for me, but got me to my goal. Of course none of this would have happened without the assistance of some very good doctors along the way.

James

[James]

in reply to: Remission rate improved by extended ATD treatment. #1172862

Hi Harpy, nice to see you checking in once in a while and thanks for the information.

Much of what I’m reading here in the various studies (some of which look very familiar to me), is very much what I had experienced personally in my past days of GD treatment.

Particularly point #1 in your synopsis especially rang true, that is:

“Extend ATD treatment periods once FT3, FT4 and TSH levels have been stabilized”.

In my case it wasn’t until I steadfastly remained on ATD treatment (VERY small doses) for an extended period of time with stabilized levels (and we’re talking several years), that I finally could achieve a sustained remission without relapse. It does take much resolve to work through this process as it is considered long term, all done of course with a supportive Dr. onside.

Thanks again, your posting is a big re-affirmation for me.

James

[James]

in reply to: Thyroid arterial embolization #1172105

Interestingly enough I had been in communication with Dr. Wong a couple of years back on this very procedure as he is a researcher from my Canadian city. I looked through some of my archived e-mails and actually found a few relating to this procedure although the information dates back to late 2009.

At the time the procedure had been successfully done on one Canadian Patient who had been in “remission” without any complications 5 years post-op (that was about two and half years ago). At the present time (at least in Canada), the cost for this procedure is an issue given the long term experience the medical community has with RAI and Surgery. Although some in the medical community agree that there is a definite need for such a procedure/option, it doesn’t seem to be something that will be avidly pursued by our health care system. It is still very much experimental , although with the passage of time, there should be some longer term results to report on the few people who have had this done. I’ll see if I can find some up to date information from the key researcher and report back.

James

[James]

in reply to: stopping meds – what to expect? #1171946

Catherine,

It looks as if you are getting some great feedback in this thread.

I agree with Kimberly in that you should request that you have antibody testing done prior to withdrawing meds. If I were to turn back the clock to the times where I withdrew my meds pre-maturely, I would have done things totally differently. The “cold turkey” approach never seemed to work for me.

Paleblue’s approach seems particularly sound in that there is a gradual weaning of the ATD’s, and she is having her antibody levels tested regularly. I also had experienced catching a cold (virus), having a revved up immune system that sent my thyroid function back into orbit. The good news was that with each subsequent relapse, it was easier for me to get my levels back down to where they should be. I eventually learned that I had to wean from ATD slowly (with my Dr. onside). I was on 2mg methimazole/day (15mg/week) for about 3 years prior to weaning off totally . . . . THAT seemed to work for me (everyone is different though). Since that time I have remained at normal thyroid levels. In the early years of remission, I would panic when I caught a cold, or my stress levels would go up (stress is a known trigger). Since then, I hardly think about it anymore, but am well in tune with my body and know when I should get tested.

Keep copies of your lab reports and take notes associated with those results. I found that that was helpful.

James

[James]

in reply to: Terrified for my teenager…is there any good news out there? #1171869

Good for you for being supportive of your 17 year old by searching out answers to the many unknowns that you are presently experiencing.

I believe Bobbi was alluding to Olympic track and field athlete Gail Devers who was successfully treated, and went to be a Gold medalist (post treatment). So there is always lots of hope for patients, especially when appropriate medical treatment is employed early on after diagnosis.

As a parent myself (of boys about your age), it is so easy for us to worry endlessly about our kids. I think the best thing you can do as a parent is to project as much positive energy about overcoming this and perhaps allude to athletes with Graves’ who have been medically treated and STILL were able to achieve what they set out to do athletically (Gail Devers one example of this).

When I was first diagnosed with Graves, I had just turned 30 years of age and was in peak physical condition. I was training for long range cycling tours and was constantly at the gym. This was very much a part of my lifestyle and to a lesser extent, still is today (I’m just a lot older now ). My Dr. at the time mentioned that I could still train, but not push myself beyond what I would normally be used to doing. At that time I was well underway on a treatment program of Anithyroid medication though (everyone needs to consult their doctor about this). I recall having to eat like a horse, and I was encouraged to do so given that I had a high metabolism to begin with, and the Graves’ certainly exacerbated that. Your son (being athletic , and young) no doubt will have similar feelings and concerns about not being able to achieve his athletic dreams. Please emphasize that this simply does not have to be the case. His fitness level and age are definitely on his side. I think it is a whole lot harder on older folks. If I was diagnosed today (I’m now in my late 40’s), I think it would be a lot more difficult for me. The good news is that I have enjoyed a sustained remission (over 8 years), and my lifestyle was only effected minimally (that was at the time of diagnosis & 3 months post diagnosis). Each individual situation can vary though.

Keep up the good work encouraging your boy! He will get better.

James

[James]

in reply to: Finally good numbers after 5+ years treatment #1170883

Alexis,

I am having some problems with the “Search Posts” feature as well. Perhaps Kimberly can chime in on this one.

Instead, try clicking “User List” at the top right corner. Once there, select the profile name of the poster. Under “User Activity”, click “Show all posts”. I’ve tried that and it seems to work.

Feel free to send me a private message as well. Glad to help.

James

[James]

in reply to: Finally good numbers after 5+ years treatment #1170881

I personally don’t like to get caught up in the rhetoric of, “diseased thyroid” versus, “non-diseased thyroid”, versus the entire body is diseased when aberrant antibodies are at play etc etc. We have to focus on what is practical and positive for patients especially when they are newly diagnosed. Obviously what might be a long term solution for one, might be totally different for another.

Firstly I have to agree that environmental factors DO play a role in autoimmunity. I believe Noel Rose (one of medical advisors), works extensively researching this. In my own experience I know that environment (including diet) has played a major role in my autoimmune health. Research also indicates stress definitely plays a role in our autoimmune health (or lack thereof), this was brought up a number of times at past conferences by some very credible presenters and should not be dismissed.

My experience with Graves’ (which dates back over 18 years now) may be unusual to some, but this particular thread has inspired me to check in and post. At this stage I do not dwell on the fact that we have according to some, “a permanently diseased organ”, or that remission, is “only a temporary condition”. At my stage in health it would seem rather peculiar to refer to my thyroid as diseased or hampered as it has been doing it’s intended purpose normally (and without meds) for the last almost 9 years now. All tests have come back normal and a physical exam indicates proper size and texture. I would have to say rather (at least in my circumstances) that the thyroid is a resilient structure, that can come back to health when indeed those “aberrant antibodies” are kept at bay. Did getting to this stage of health happen overnight? Absolutely not, it is a long process. YES, there is a possibility that I could relapse one day, but quite honestly, right now if feels like it is in the distant past.

I applaud all patients that have the resolve to stick to what works for them within the parameters of what is medically acceptable . . . THANKS for posting your experiences. ATD’s do buy time for many. We are living in a culture however that seems to insist on a perceived instant “cure”, take this pill and you’ll be fine etc etc. It’s too bad that it can’t be that simple.

Wishing you all well,

James

[James]

in reply to: How long is too long on Methimazole? #1061118

Honestbabe,

I had a close elderly family relative with a hot nodules (non cancerous), that was also Hyper T, and treated with the ATD Methimazole. She was prescribed 5mg/day for about 12 years with careful medical monitoring of course. I often questioned her as to “how she was doing” and she reported back that her thyroid levels were OK and presumably consistent from blood test to blood test. She of course had far more serious health concerns that she had to deal with during that period of time. Keep in mind that although it is possible to treat the Hyperthyroid condition the same way, we are talking about two totally different physical disorders (Autoimmune thyroid disease versus Nodules), just as Kimberly pointed out. Sorry I have no “medical data” on this, just sharing a family members experience in this case. Ultimately we have to work collaboratively with our Dr. no matter what choice we make.

Wishing you the best as you continue to seek valued information.

James

[James]

in reply to: Why avoid radiation treatment/thyroid removal? #1061081

Hello,

Ideally Doctors should work closely with their patients in a collaborative manner in order to determine the best option for the patient, with the patients interest at heart of course. Sometimes there are biases that can get in the way with both patient and doctor.

For me, the choice of using the ATD option provided me with an opportunity to get well again without having to take permanent action. As biased as my first endo was concerning treatment options, I pressed for what I thought was best for me in my particular situation.

I am attaching the link of an article that was forwarded to me by one of the other facilitators which really speaks to the heart of your question. I think you may find this insightful.

http://www.endocrinetoday.com/view.aspx?rid=85888

Best Regards,

James

[James]

in reply to: We had dinner last night with Dianne and Ken Wiley #1068281

Hello Shirley,

I’m not sure how often Jake checks in, but have sent you a private message with the requested information.

Regards,

James

[James]

in reply to: Back to the drawing board… #1062068

Hi Jenni,
I’m coming from a similar perspective as you; so I was compelled to respond to your post, although I haven’t been as active on this board as of late. I’m going to be as positive as possible while at the same time realistic.
Firstly, if ATD’s have worked for you in the past, then there is no reason why you cannot try that method again, unless there is some medically compelling reason that you cannot. I personally look at my remission periods (and the length thereof) as a triumph, something worth celebrating. If you have been in remission for 6 + years, this is worth celebrating. . . .Good for you! I’ve been there as well. If you choose to go the ATD route again, it is important for you to find a Dr. that is going to support you in that decision. There is some evidence that ATD’s in of themselves may have an immuno modulatory effect which in theory would inhibit the immune response to the thyroid. This is something being researched, but I don’t think there are any undisputed conclusions drawn from any of the studies. I’ve heard of the low dose Naltrxone Therapy, but admit that I don’t know much about it. I believe that it too is believed to have an immune modulatory effect.

I believe that Bobbi’s stated statistics and remission rates may in fact be accurate in studies looking at short term ATD use (12 – 18 months) which unfortunately seems to be most of the studies. One of the other Graves’ Foundation volunteers recently sent me an interesting article from the American Thyroid Association that is a bit more promising for those patients who are on ATD therapy longer term. I cannot post the link here unless I can get permission first, but I will say that study done over a 10 year period with a mean follow up period of 51 months (that is over 4 years). Remission statistics for those taking ATD’s longer term, even in minute doses indicated that 63% of those patients did not have a recurrence after treatment was stopped. 37% of those who did have a reoccurrence, usually had the reoccurrence within a mean period of 3 months. The fact that you have gone so long in remission should be encouraging. What is not encouraging to you is that you have relapsed. At the last two Graves Disease conferences that I have been to, presenters without exception have mentioned that stress indeed has a profound effect on the immune system, and is considered more of a definitive trigger than some of the other suspected triggers that are more speculative in nature. Hopefully, once you have given your body a chance to heal and hopefully remove some of the stressors in your life (easier said than done I realize), you will have a positive outcome once again. In my opinion it pays to persevere with this disease and hold fast to what you think is right for you, as long as you get the proper medical attention while attaining it.

Wishing you the best!

[James]

in reply to: Wish me luck #1062754

Ewenme,

As an aside, Graves’ afflicts woman far more often than men, but at the same time (according to the panel at last years’ conference), stated that in general terms, men typically have a harder time with the disease when afflicted. My point being that even when the odds seem so stacked against you, there is still plenty of hope for a positive outcome. My situation is different than yours in that I was on ATD’s on and off for many years (mostly off). For over 7 years now, I have been off all meds with normal thyroid results. My latest physical indicates that my thyroid is of normal size and texture. For quite a few years now, I have engaged in a number of lifestyle changes which I believe helped, although It cannot be proven with any certainty that lifestyle changes alone will bring about remission and keep you there. I merely bring this up to encourage you and others.

We don’t always see people coming back and posting when they are doing well. So thanks for sharing.

James

[James]

in reply to: Remission after 5 months?? #1063499

As people with Graves’, I think we often get overly caught up in GD statistics; remission rates, likelihood of relapsing after “x” amount of time etc etc. so much so that we obsess needlessly of what could be or not be and what is yet to come.

There is nothing wrong with basing medical decisions in part on statistical data, but to put things in perspective, we have to remember that everyone is unique and I have learned over the year from talking to numerous GD patients is that many times things happen to individuals that seem to be well out of the supposed “statistical norm”. I have seen too many conflicting studies on remission rates over a given period of time, so I personally don’t pay that close of attention to that kind of information anymore. What is more important in my opinion is that you are comfortable with your treatment choice and more importantly comfortable with the Dr. attending to you with that treatment choice.

One of the speakers at this years conference referred to the need to move toward individualization of medicine. Meaning that it shouldn’t be a one size fits all approach to medicine. Every patient is different and the disease is unique to that individual and treatment should be tailored to both the medical needs and desires of the patient, and not necessarily the biases of the attending physician. I support this approach wholeheartedly.

Concerning TSI testing and remission. This test was never offered to me during my past treatment process, nor was I even aware of it at the time. It is true that antibodies can rise and fall as there are still too many unknowns concerning the immune system, but it is still a very important test to those of us on ATD therapy in order to determine the timing of weaning off of the meds. I wasn’t fortunate enough to have TSI testing done when I probably really needed it. I just had the standard tests (TSH, T3, T4), and went with the way I felt and intuition mostly. If I were to relapse, I would definitely add this to my arsenal of prescribed tests instead of just grasping at straws. I was almost always disappointed by coming off of the meds too quickly.

Hope this helps somewhat.

James

[James]

in reply to: Nervous for the results #1063530

Hi Krystal,

If you have only been on ATD medication for three weeks total, that isn’t a very long time in the whole scheme of things. You probably shouldn’t expect to feel that much of a difference quite so soon. From my experience it was more like 2 – 3 months before I really started feeling better. For some people it may take even longer. I can understand that you are very concerned on all fronts, but rest assured it does get better in time. Concerning your question about having blood work in the normal range, but still feeling GD symptoms. There is a wide range of “normal”. What many of us do is request a copy of all of our labs each time. It is my understanding that you may be require to sign a release before your Dr. will release the labs, so make sure you get this signed. Keep a diary of how you feel at those levels, what symptoms you are feeling and the amount of ATD you are on during that time. That way in time you can tweak your meds to the point where you feel your absolute best. During the initial stages of GD, your Dr. should be testing for TSH, FT3, & FT4 at a minimum. Many patients that I chatted with at the GD conference this past weekend agreed that it took time to find the right level, so you would be in good company. In there are other health issues at play, your Dr. will have to sort through those with you. Right now, just get those levels in check to YOUR normal level. This may take a little time, but it will come.

Wishing you the absolute best.

James

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