[vintagegreen]

#1068618

Ciona,

You’ve got a great story and I hope someone answers them! Good luck with finding more answers/ questions….
April

[Ciona]

#1019040

Hi,

I feel I am at a crossroad with my Grave’s disease but maybe not. I have a good Dr. that really works with me and supports my choices. I would like to hear from others that have chosen long-term treatment with meds.

I was diagnosed in March 2000 and started on 20 mg methimazole. I went very hypo in 2 mos. and then stabilized at 1 year and a dose of 2.5 mg of methimazole. I tapered off meds completely (I could do this because the methimazole was compounded for me since I needed it lactose-free) by June 2002. In March of 2004 GD was back. This time 20mg of methimazole took longer to get my levels normal but I was more careful not to go hypo. I slowly got down to a maintenance level of 5 mg in June 2006 and we left it there since. As I slowly got a bit hypo we added in Levoxyl (thyroid hormone) up to my present level off 50 ug. We choose this course because of a study done in Europe where patients stayed on 5 mg ATD for 5 years with added T4 as needed and there was a 80% remission rate. This was encouraging even though they did not track the patients very long after the treatment ended. So what was the remission really.

Well, I have been on methimazole for over 5 years now and it has not been easy. I seem to be very sensitive to fluctuations in thyroid hormone levels. I have gone slightly hypo and slightly hyper twice. The levels are in the normal range still but I really feel it. Hyper means agitated, can’t focus, can’t sleep. Hypo means sluggish, tired, fuzzy brain. I also have symptoms that may be side effects of the methimazole – itchy skin, joint pain, intestinal problems, migranes, forgetfulness. I just don’t know. I’m going to be 50 next year so maybe it’s age.

I eat well, do yoga, exercise. I am grateful for a mostly joyful life with my family and friends. I like my work. I try not to stress. I could try talking to my immune system as suggested by some of the posts I read. It might help since me and my body are in this together and probably for the long haul. It couldn’t hurt to bring us closer together and consider us as one since we are….really.

But here’s my dilemma. My Dr. says the permanent remission is just not happening. I’m just not in the lucky percent. So what do I do? consider the other treatments, RI or surgery? stay on meds every day FOREVER along with the mini thyroid roller coaster that is my life now? Are these fluctuations bad for my body? Do the symptoms of autoimmunity increase or decrease with age?

In the general scene of things GD is the most treatable AI disease? Shouldn’t I get the permanent treatment, nuke the thyroid and then be taking less meds while I am younger and healthy?

Is anyone else in the same boat? a similar boat? out there is the big sea of GD effected people doing the best they can???

[Sue_Conard]

#1068619

Hello Ciona: I’m struggling with your decision DAILY right now too. I’ve had GD much longer than diagnosed, which was Oct. 08; however, I’m a tad bit older than you too by a couple years. My Endo dr. wants to REMOVE my thyroid and I tell him at EVERY VISIT…I’m an organ donor and I plan on keeping my organs !! He is very frustrated with me and told me at my last visit that he wanted my husband to come to my next appt. b/c he was going to have me hypmatized to be sure that we’re on the same page. I told him that, from what I’ve read, I’m going to be on meds the rest of my life ANYWAY, so FIX ME!! The Endo dr. is just as frustrated as I am, but I’m determined with positive thoughts and meds to GET WELL EVERY DAY, so we’ll see if GD will cooperate! I haven’t been on the drugs as long as you have, but I’m not eligible either for the RI b/c lucky me, I have TED too !! The "thought" of surgery scares me, so I’m AVOIDING that procedure as long as I can (I’m a LONG-TERM PROCRASTINATOR too). I know there are several people on this site that just recently went through the surgery with SUCCESS…not sure what everyone else has to say, but best wishes to you !! Please let us know your decision.

[carla]

#1068620

Hi Ciona,
Well this is what I was told today…..if your levels cannot be stabilized on medication that is when you need a thyroidectomy because your antibody levels are not sorting themselves out enough for you to come off it. After the amount of time that you have been on the treatment, I would be thinking that you have done the best you can and need some other option now. But, of course, I am just a lay person, it just seems that by all that I have learned about this disease of late, this is the next step for you. We were told 2 – 3 years on the meds is enough time to sort out the levels for good and if by then they are still all over the place, then it is thyroidectomy. All doctors are different and all situations are different, yours will be unique to you, all you learn from this is just fuel for thought really, the final decision is yours and your doctors.

[Kimberly]

#1068621

Hi Ciona – I have given some thought to these issues as well, as I am coming up on the 2-year mark with ATDs, which is the point where some endos will push for a "permanent" solution.

My understanding is that more endos now are supporting long-term maintenance with ATDs, as long as the maintenance dose is fairly low — and you don’t have any liver or WBC issues.

I understand your frustration with fluctuations…I’m trying to pull out of a hyper phase now. However, going through RAI or TT would cause different stabilization issues while you try to pull out of HypO. Would I get through it in a couple of months and then not think about it for the rest of my life — except for taking a daily pill? Or would I be one of those that has a hard time getting stabilized? My take for now is that the devil I know is better than the devil I don’t. ” title=”Wink” />

The bottom line is that you need to make a choice you are 100% comfortable with.

Good luck!

[James]

#1068622

Ciona,

The biggest benefit working for your right now is that you have experience with this disease. The newly diagnosed don’t have the same advantage in that they are seeking answers without as much knowledge and certainly without the benefit of experience. I don’t believe that any one on this message board or any Dr. for that matter can tell you what should or shouldn’t do. Kim is correct when she says you have to make the choice that you are 100% comfortable with.

I’m personally not convinced that there are any studies proving that remission rates with Block and Replace are any more or less likely as compared with ATD’s alone, but I could be wrong and would welcome correction. To me (and again this is just my opinion), it is like pressing the gas and the brake pedal on at the same time. When my levels were coming down from hyper, I just opted for much smaller doses of ATD, but again; if B & R works for someone and they are under a Dr’s. supervision, then they should have the opportunity to try that method.

After reading probably thousands of posts over the years I realize more and more that this is not a one size fits all disease. Some people are not as sensitive to minor fluctuations of hormone levels whereas some people are. Some people go hypo VERY gradually and don’t even realize they are extremely hypo. Either way, we all have to be monitored for life to be sure we remain in optimum health. I do believe that the good lifestyle choices you have engaged in, is going to assist you with your overall health in general. These are all things you are definitely doing right.

Take care!

James

[Andros]

#1068623

Hi Ciona. Gosh, what a ride! I can only tell you of my personal experience. I got sick and tired of wasting my life "trying" to go into remission so I opted out. I have my thyroid zapped and have absolutely not a single regret.

It took me about 18 months to 2 years to get on track but I did it.

This this a big decision to make; I hear your angst.

And may I also point out that sooner or later, that liver of yours may not be so happy about all the anti-thyroid meds over the years. I trust your doctor has always checked your liver enzymes periodically over the years?

Take your time deciding. Everyone here has very good input.

Lu Anne

[elf]

#1068624

Unlike the majority of people, after reading about treatments of Graves, I was NOT scared of the permanency of some treatments, but I was scared of living in hopes for years and being pulled-pushed by the hypo-hyper see-saw.

I was diagnosed at about your age, 41. Got RAI a few months after my diagnosis. That was 4 years ago. The best thing I did to my Graves.

[Ski]

#1068625

It can be very hard on your body to have fluctuating thyroid hormone levels ~ nearly as debilitating as a chronic imbalance on one side or the other ~ so while destruction of the gland and subsequent replacement hormone may seem to be just another "see-saw," the advantage is that the antibody action will have no effect whatsoever after the thyroid is no longer responding, so it can be easier to get to, and maintain, a normal thyroid hormone level.

Some people have an easy time doing that with ATDs, while others do not, and for you it appears you are in the latter category.

For replacement hormone, the result is not instant, but stability gets closer all the time, and after you’ve found your perfect POINT, lifetime maintenance is usually just an annual blood test.

[Ciona]

#1068626

Thank you. Thank you all you responders. Today is a better day. I know you are just giving me your lay opinions but it is so great to have you out there. I am glad to hear all the different ideas and approaches to have to this disease. I have been dealing with GD for a while. I’ve been told it’s the most treatable AI disease, that’s it’s no big deal. After reading other posts and hearing from all of you I have now given myself permission to accept the GD is having a significant impact on my life. I need to think and rethink about my options and I am very grateful that I have options. As for 100% comfortable I’m not sure I will ever get there but I may be able to decide that I am more comfortable with my other options than with what I have now.

I do worry about my liver and my white blood cells. I do have them check annually. My hypo and hyper episodes while on ATD have always been in the normal range but I do wonder about the toll this is having on my body. I am thinking that I have been experimenting with my body but now the results are in and the experiment didn’t yield the positive result I was hoping for. On to plan B.

James, I feel that your situation is most similar to mine. I wonder if you would share a few more details like: How long were you on ATD? How long has your remission lasted? Have you ever relapsed?

Anyway, I will let you all know when I make a decision.

TTFN Ta ta for now

P.S. How come the smilies I inserted didn’t show up when I posted and the font color didn’t change?? Bummer ” title=”Sad” />

[Ciona]

#1068627

Oh yaaaay. That last smilie showed up when typed a colon and a left parenthesis. Who knew!! ” title=”Smile” />

[susandemarco]

#1068628

Dear Ciona,
I an 62 years of age and found out I had GD twenty years ago. I went on PTU for eighteen months and
went into remission for about seven years. It then returned and went back onto PTU for another
eighteen months, and went back into remission only for it to return again in three years. This happened
a few more times up until this time.

I am now on 20 mgs. of PtU daily indefinely. Right now I feel I am in the same boat as you as far as
making a decision to get the RAI, as I am concerned about the possible problems with my liver and
white blood count, however I am tired of worrying about it.

The only thing I can tell you is that I do not think anyone is ever sure about which way to go. One day
I feel one way and the next day I feel differently.

I am sorry that I do not have the magic answer,as I do not think there is one. I think you just have to wake
up one morning with your mind made up and just not look back.

Best of luck to you, and I will let you know what I decide.

Susan

[hyperm]

#1068629

HI Ciona,

I was in a similar boat to yourself. I was unable to get stabilised and they did mention surgery to me several times which scared the life out of me. In fact i am sure they never got to finish that sentence as I had already dashed out the door. I was able to come off meds while I was pregnant with my youngest however, my hero of an endo even then had a sixth sense about me and mentioned TT twice while I was pregnant… I took a TS post partum and then couldn’t get stablised on meds and also had persistent issues with low WBC on carbimazole and then PTU. So there wasn’t really a choice for me I needed a more radical treatment and my endo basically told me I needed surgery.

Although I am seemingly very hypo now (nothing is simple for me when it comes to GD or this thyroid business ” title=”Sad” /> ) but I can tell you this I should have listened to them 4 years ago and had the TT and saved myself the roller coaster. Also although I don’t feel particularly great as hypo I feel so much better than when I did as hyper. I was very hyper at the stage of my op and to now have a nice calm heart beat and although I am tired I am managing so much more.

It may be time to really sit down and discuss RAI or TT…. If you were asking for a straightforward yes or no to a TT – I would say YES go for it!

M xxx

[Author]

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