[James]

in reply to: Living through Graves disease #1067078

Kavya,

Firstly I applaud your effort and maturity in assisting your husband and trying to gain a better understanding of his condition. From a personal experience perspective, if you have been married for any length of time you probably have a fairly good understanding of your spouse. You understand each others strengths; weaknesses, idiosyncrasies and recognize when a certain behavior is out of the norm. Sometimes a spouse may recognize erratic behavior long before the spouse with Graves’ does. The goal is to help your husband understand the times he is out of character. When I acted erratically, my wife gently pointed out the behavior and suggested that I get my thyroid levels checked. Although this was said out of love, I found the suggestion pretty offensive at first, but in time I recognized that she was right all along. Your husband has to recognize that GD can cause this behavioral changes and that he has to take responsibility to ensure that his levels are in check. It would be helpful for both you and your husband to attend Dr’s. visits so that the Dr. has a better picture of what is occurring. If it isn’t thyroid imbalance at play, you have to work with your Dr. to determine what is. Graves’ can be a complicated disease, but isn’t necessarily always complicated, things can and will return to some normalcy with proper monitoring and treatment. Your support during these difficult periods is great start. I’m always encouraged to read posts such as yours from supportive spouses. I hope that you are able to make some headway as a team (You, your husband and your Dr.) working together.

Wishing you all the best!

James

[James]

in reply to: ANY SUGGESTIONS #1067134

Rest assured that the symptoms will pass in time once he is properly regulated. If he had RAI recently, there is a chance he is experiencing some thyroid hormone dumping which often happens subsequent to RAI ablation. That might explain some of the symptoms he is presently experiencing. Just ensure that he is followed up with a Dr’s visit to monitor his thyroid levels, blood pressure/ heart rate etc so that you know with some degree of certainty as to what is going on. There are some medications that a Dr. could prescribe to help him if required. Patience on your part is the order of the day for the time being, as difficult as this may be for you. I personally never recognized my own irritability when I was hyper, but everyone else seemed to . . . that is not uncommon. You coming here and asking for help in of itself shows that you are a supportive spouse. He is lucky to have you.

Wishing you and your husband the best!

James

[James]

in reply to: Thryoid Arterial Embolization? #1067251

Arterial Embolization has come up a few times over the years and yes it was brought up at the recent Graves’ disease conference although about 30 seconds of time was devoted to the topic. This is probably because this therapy is still considered unproven.

It was over 4 years ago (2005) that I spoke with one of the researchers who happens to live in my hometown. At the time there were less than 100 patients worldwide that had the procedure done. Although the results looked promising at the time, I’m not sure that any further studies were done involving more Graves’ patients or if there has been long term follow up with the existing group. At a minimum I would like to find out of there is some recent information about this procedure. I will try to contact the same researching Dr. that I spoke to 4 years ago and then follow up with Nancy before updating the board.

Thanks for your interest on this subject. It is always a good thing to keep informed on any new research and developments concerning Graves’ disease.

Take care,

James

[James]

in reply to: Treatment Options Section of Web Site #1071753

Hi Kim,

I fully understand what you are talking about, that is the confusion that often arises when a patient is told a treatment is only 20-30% effective. I have personally seen many patients scratching their heads in wonderment when given this information. In fact, a patient I was recently speaking with was given this information with very little more to go on. Her interpretation was, “I only have a 20-30% chance of feeling well again with the ATD option”. It makes sense, 20-30% effective, with “effective” being interpreted as “feeling normal again”. If I were her, and that was my interpretation, I certainly would not want to wager against those odds. We know that most patients do respond well to ATD’s and for whatever personal or medical reason, may decide to go that route. Without given the full picture that we DO (in most likelihood) get well again no matter what option we choose. I can see where patients could misinterpret or become discouraged by this. I think it is the job of our medical professional’s to disseminate this information in such a way that it is fully understood by the patient. Not every patient is as fully informed as they should be. I think organizations such as the NGF can (and should) help people better understand their options better. Thanks so much for brining this to light.

I personally have seen so many statistics over the years that my head is spinning. Some people seem to fall into a certain category others do not. What is more important (in my opinion) is not so much the rate of remission, but rather getting well (euthyroid again). Remission of course should be ultimate goal, but if it isn’t achieved, many of us have the option to continue anyway or find another medically acceptable option at a later date.

Thanks again Kim for your thoughtful insight.

Best regards,

James

[James]

in reply to: GDF welcomes our newest Facilitator James #1067344

Peter & Ski, thanks for the introduction and welcome!

I’m sure that most of you who have been searching through the Bulletin Board for any length of time will have seen me posting from time to time. The GDF and the some of the people who have so willingly given countless volunteer hours over the years are certainly not strangers to me. It was awesome to finally connect (in person) with many of these people at this past years conference in Charlotte.

It is always interesting for me to observe new patients coming here when newly diagnosed, often times scared with very little information about the disease, looking for information and support. One commonality is that most of the newly diagnosed come to the bulletin board with a desire to become an active participant in their health choices. One of the most fulfilling aspects of this board is to see patients going through the process of initially coming to terms with this new illness; then learning all they can about it, and in the end becoming an active participant in their health and treatment choices, FULLY informed and prepared to advocate for themselves when required.

It is also been great to see people come back, sometimes years later after treatment to check in and share their experiences with new people who are now going through the initial stages of their Graves’ treatment.

I look forward to continuing to partner with all of you in this global community to help to provide support and education to those diagnosed with Graves’disease.

Best to all of you!

James

[James]

in reply to: A year later…good news #1067377

It is encouraging when people such as yourself take the time to report that you are doing well. In most cases people get healthy and move on and are never heard from again. It’s one thing to come here and look for support, but then to come back with encouraging news in of itself provides support and encouragement for those who are newly diagnosed and often very frightened. I wish more people would do what you are doing.

Thanks,

James

[James]

in reply to: My choice of treatment and a question about it #1068062

Susan,

To answer your question specifically, “do you take ATD’s all the time for maintenance”. I presently do not. I have been in remission for almost 6 years, but prior to that time I was on as little as 15mg/WEEK (Methimazole) for a good number of years.

I have corresponded with numerous Graves’ patients over the years and often their experiences are as unique as the individual. That’s the frustrating part, it isn’t clear cut. For example, my experience was quite different then yours in that in almost 16 years since diagnoses, each remission was longer in duration and each relapse shorter. I hope that trend will continue for me. Other people remain on maintenance doses of ATD for decades and never have achieved a remission. One woman I know has been on Methimazole for over 30 years and is just as content to stay on them forever if need be. There are just as many personal reasons or even medical reasons as to why one person may want to stay the course with one treatment over another, or eventually decide on a different approach (just as you are at a crossroads). The most important thing in my view is that you have become well informed over the years, you have experience with the disease and you are in a position now where you can make a fully informed and rationale decision that best suits you.

Take care!

James

[James]

in reply to: My choice of treatment and a question about it #1068059

Nestle,

I know your question was addressed to Mamabear, however I am taking the liberty to jump in, I hope you don’t mind.

If as you say your first choice is to try drug therapy first, I just wanted to outline a few things that one of the Physicians at the October NGF Conference addressed concerning ATD use.

First concerning your reaction to Tapazole (Methimazole), Itching and hives is considered one of the minor side effects of the drug. Some Dr.’s recommend an anti-histamine during the initial period of time to assist with this reaction and may continue the course with Methimazole in hopes that the itching/hives will subside. In some cases the itching can subside as you come down to a maintenance dosage or have been on the drug for at least 90 days.

Concerning PTU. A recent FDA warning stated that liver injury from PTU (although very rare), is more likely with PTU than with it’s counterpart Methimazole. If you are planning on becoming pregnant, PTU is generally recommended by Dr.’s, especially during the 1st trimester.

Concerning ATD’s generally. Most side effects (if there are going to be any) will show up in the first 90 days of use according to the conference Dr. Also, each time you go off of ATD’s (say during a remission), and then resume with ATD therapy later on, the clock resets itself. What that means is that if you had no reaction to PTU the first time, it is possible to have a reaction during your 2nd course of treatment. In your case, if you had a reaction to Methimazole the first time, doesn’t necessarily mean you will have the same reaction during a subsequent course of treatment.

Your Dr. should be able to give you some additional guidelines with any concerns that you might have.

Wishing you the best!

James

[James]

in reply to: Hyperthyroid again #1067451

Interesting! At the GDF conference this past month I had the privilege of speaking with numerous patients at various stages of their treatment. One woman I spoke with mentioned that a switch in brand name had a very negative effect on her. I have to back Ski on this one; with that being said I certainly cannot speak from personal experience on this. It might be worthwhile asking your Dr. as to his rationale for the switch in brand. There may in fact be a very good rationale in your individual circumstances, but at the very least he should have answered that question for you. Some people seem to be very sensitive to minor changes and others do not.

Take care,

James

[James]

in reply to: Labs are Normal Before Ablation??Remisson? #1067554

Meridith,

No matter what the outcome of your test results, or whatever ultimately becomes your personal course of action . . . . we are all behind you! Thanks for keeping us apprised. Let us know how it goes.

Best to you,

James

[James]

in reply to: graves and adjuvanted vaccines (esp. H1N1) #1067538

Hi all,

I sourced an article, and spoke with a Dr. in our area about this topic. Apparently, the Society of Obstetricians and Gynecologists of Canada suggest that there is no significant safety concerns regarding the use of adjuvanted vaccine. They argue that the same adjuvants have been used in other vaccines for decades. There are other countries around the world stating that the adjuvanted vaccine is safe even for pregnant women. Now with that being said, if anyone is concerned for any reason, for their own peace of mind, they should talk to their own Dr. and then make an informed choice as to how they should proceed.

The Dr. that I spoke to, is on an action emergency response committee. It was interesting that in his talk, he mentioned that H1N1 can affect younger people very profoundly, and is it people in their 20’s with very healthy immune systems. It is their healthy immune system that in fact works against them with H1N1, which sets H1N1 apart from the common flu. The ramped up immune system response to the lungs in fact ends up over-responding and greater damage can potentially occur to the lung tissue in a young healthy person. That is a simplified way of trying to explain what the Dr. was trying to explain to me.

Also (just as an aside), people over 65 are apparently at less risk, which is unlike the common flu.

I think in cases like this it is best not to over-react to news media responses, but to get as much information from as many reliable sources as possible and then make an informed decision. It’s great to see that people on this board are taking a proactive approach and taking their health choices very seriously. I too have had to weigh the pros and cons to vaccination. When I asked the Dr. very specifically about individuals with autoimmune disorders and the H1N1 vaccine, he said that he could not answer that, because he simply didn’t have an answer. There has been a variety of responses that I have heard on this topic from medical professionals, but I haven’t found a specified answer or come to any conclusion as of yet.

Take care everyone, and stay healthy.

James

[James]

in reply to: Labs are Normal Before Ablation??Remisson? #1067552

enough3 wrote: Do you think that it is just a matter of time before I get hyper again? Does it take longer than 2 weeks to get hyper?? Has this ever happened to anyone here?

Meredith,

As to your question, “Will I get hyper again”? I don’t think anyone could answer your question. I have heard statistics stating that remission rates go down significantly if you go into remission and then relapse. I’m curious though if there have been studies that go beyond 18 to 24 months on patients who are kept on ATD’s long term, like 5 to 10 years out. My experience was that it did take much longer than two years to remain solidly in remission, of course this can vary from person to person. One of the common themes I heard from talking to Graves’ patients at the Fall conference opting for ATD therapy was their hurry to achieve remission and stay there permanently. Those that choose that option with their Doctors support, I feel need to have a different mindset if they choose to take that course of action. It’s a, one day at a time approach and not rushing to come off of meds prematurely when their TSI may still be elevated (unless of course they experience negative side effects). A better approach with those folks is to talk to their Dr. about remaining on maintenance doses of ATD for a longer period of time (if they so choose). One of the Conference physicians clearly stated that he would support a patient who has responded well to ATD’s long term.

The reason I go into this detail is that you still seem to be on the fence somewhat, and basing your decision on remission only which is what most patients do and is what most Dr’s in fact will recommend. The question you should ask yourself should be, “am I willing to be on ATD’s long term if need be”. The reason is that there is no guarantees. In the end the goal is that you have made a very well informed decision with a variety of medically acceptable perspectives. That’s really what this website is all about.

Best to you!

James

[James]

in reply to: Effects of RAI #1067707

Kimberly wrote:At the conference last weekend, one of the physicians did a presentation on the pros and cons of all three treatment options. He stated that the side effects with ATDs generally occur during the first 90 days of treatment (although the clock "resets" if you stop and then re-start the meds). Therefore, he said that he *would* be supportive of a patient who was doing well on ATDs and wanted to stay on meds for the long haul.

I just wanted to expand a little more on Kimberly’s post.

I made the mistake of coming off of Methimazole too soon and relapsed within 2-3 months. I had no problem with 30mg of Methimazole when first diagnosed, but when I resumed therapy a few months later, developed a slight rash with 10mg/day. This is case and point that the “clock can reset” when we resume therapy. Fortunately in my case the rash subsided within a short period of time. The conference physician did indeed mention that a patient outside of the 90 day window, who has responded positively to ATD’s, can resume on maintenance doses for the long haul and that he would support that. It goes without saying that that would be with monitoring of course.

[James]

in reply to: Which antithyroid agent? #1067584

Hello,

I am also a male with Graves’ disease, but currently in remission. I was about 30 years old when diagnosed almost 16 years ago.

Unfortunately the only person that can interpret your laboratory results would be a medical professional. It appears that you have attached a thyroid uptake scan which certainly is interesting, but cannot be interpreted by a layperson.

The good news is that antithyroid medication IS a medically acceptable treatment option for Graves’ disease. Whether or not is it used more or less in one country over another is irrelevant. In general, my country (Canada) seems to favor RAI treatment as well, although at the recent NGF conference I attended, one of the Dr’s felt that the trend is slowly changing in the U.S.

What is really relevant is that you are properly informed about your decision and that your doctor is onside with your decision. I believe there is some evidence to suggest that a smaller goiter is a good thing as far as remission statistics are concerned. This is something that you can ask your Dr. My thyroid was 2-3 times normal size at the time of diagnosis and my outcome was positive, but I will admit that it was a long process, but not a difficult process with the exception of the first 2 or 3 months when I was very hyperthyroid. Of course every situation is different and outcomes seem to vary widely from person to person.

As far as ATD choices are concerned, there are two of them:

1. Methimazole and;
2. PTU (Propylthiouracil)

You will need to talk to your Dr. about the pros and the cons of each. Generally Methimazole is the ATD of choice (unless you are pregnant or plan to get pregnant) in which case PTU is generally suggested for at least the 1st trimester. I don’t think you need to worry about that being male. There is evidence to suggest that PTU has a higher incidence (although rare) of severe liver disease. These are all things you can discuss with your Dr.

Being healthy to begin with, and having a proper diet are things you should be doing regardless. If you are a smoker, there is rock solid evidence (according to the Dr’s at the conference) that this will exacerbate the disease, particularly if you have any eye involvement to begin with.

There are a great group of people with years of experience with GD who frequent this board regularly who may want to weigh in as well.

Wishing the best of success in your treatment!

Best regards,

James

[James]

in reply to: Is it possible…? #1067814

Hashitoxicosis. YES, this is a good topic for discussion at the conference. If it is of concern to you, talk to your Dr. about testing for TPO antibodies or any other testing he may deem necessary to determine if your are dealing with more than one condition. I had the TPO test done earlier this year with a very low result (lower is better). I have a close family member with Hashi’s who’s level was off the map, this family member is hypothyroid and his Dr. said that he would probably become even more hypothyroid as time goes on. The TPO antibodies can be very destructive to the gland. With both antibodies at play, it could indeed be quite the roller coaster ride. Hope to learn more about this at the conference.

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