[npatterson]

#1068052

Dear Debra,

It is good that you have been feeling so much better. I would imagine that the surge of anxiety with what you were having to do and deal with kicked in your own adrenaline, and perhaps triggered all that extra noradrenaline that is still "in there" to join in the reaction.

There is no such thing as "no stress". If you are alive, there is always stress (aka CHANGE). IT is what wakes us up in the morning, and is part of everything we do. ome stresses are good, others are bad, but they all affect our entire body. With the added stressor of hyperthyroid activity, we can certainly over-react to things.

Our choice of treatment does not protect us from reacting the the various stressors in our daily life. When we finally get to stable thyroid levels, and have been there for a time, it is likely that we will return to the pre-Graves’ way we dealt with disruptive changes/stressors before all this happened. If we weren’t managing things well, we will still have to learn to manage/master things.

There are two ways (minimum) to deal with things:
1st – Identify (first) and avoid or manage (second) those things that are known to "fire us up".
2nd – identify (first) and begin or continue (second) those things that give us more control over our responses. Healthy eating, exercise, hobbies, meditation, prayer, relaxation, stopping smoking and alcohol abuse (and anything else that fits in this category)…etc. You get the idea.

You probably need to ask your doctor about the actual time frame for the ATD’s to be consistently working. I am not sure that two weeks is a realistic measure.

Take care,

[debrahaller]

#1018953

Hi everyone— A question for someone I think some of you might remember I was not given a choice for treatment and this forum suggested I look at all option well went to new endo and heard my three options and chose the drug therapy for now. Well been on them for two weeks and feel perfectly normal not one hyper episode until yesterday needed to fire someone and it became unpleasant I started to shake all over I calmed myself back down but my question is, what does that mean drugs are not working or what? I know you are supposed to avoid stress as long as I stay away from my oldest kid I thought I was avoiding stress. This situation came out of nowhere and now I am wondering is this why some of you choose RAI? Then after you become hypo you do not have to worry about stressful situations—does that sound right. Once again thanks Deb

[mamabear]

#1068053

I agree with nancy. I was on PTU choice of ATD at the time. I was on it and stable and still felt "weird" in stressful situations.

fast forward to NOW and guess what.. I do not need medicine at all and I am perfectly within my TSH levels, I tend to be on the low side but there is nothing I can do about that. But in a stressful situation it’s fight or flight and I get all red and feel panicked and can’t think straight for a moment. Yep, two years in remission with no meds and doing GREAT and I hate situations that are stressful. I can’t imagine that what you had to do was a piece of cake. Find a good place inside your head and go there so that you feel better when it happens again, or if you have to fire someone else. (I would hate to have to do that)

Continue the treatment that best fits your needs right now. We’re here for ya!

[ely2009]

#1068054

Deb,
I’m trying the med route as well and am within "normal" levels and feel good most of the time. I, too, notice times when my hyper symptoms return – like when I was fighting off a cold, during my PMS time, and especially when I get OVERLY exhausted. It’s frustrating, but seems to pass pretty quickly. I’ve been on meds simce March and am willing to continue for awhile since so far, so good.
Emily

[debrahaller]

#1068055

Thank you for the response that is what I love about this website I ask a question and people jump in to give their veiws I JUST LOVE THAT!!!!!!
I am trying real hard to find the peace in everything I do now,sometimes it is really hard. But I do not know about any of your pasts but my past,I am the go to person in the whole family,if you want to hear the absolute truth call Deb you might not like it but she will give it to you anyway,so see I have always been in the mists (?) so to speak. And now with graves I have to distance myself in some situations because it just feels better to me. Thanks again Deb.

[Ski]

#1068056

Hi Deb,

Just a quick comment ~ if I had a quarter for every GD patient I’ve heard say they’ve "always been the go-to person, for everyone" I’d be a wealthy woman! ” title=”Very Happy” /> That counts for me too. It’s tough to let go of that, we tend to think we are "super people," nothing should get us down, we just shake it off and DO IT ANYWAY. Sometimes I think that’s the very lesson we’re being taught ~ that others can also be "gone to." They may not do it as well as we would, or as well as we THINK they SHOULD, but they can do it, and we need to let them (sometimes). We need to make ourselves a priority, at least in this one instance, and realize that our health is more important than doing everything, for everyone.

[debrahaller]

#1068057

Thanks Ski I know and the more I learn about this condition it makes me wonder if we all have sometthing in common about our lifestyles of course the Graves also. But the way you are is the way you are i just wish sometimes people would go to someone else ,just like you said they certainly could. Deb

[nestle]

#1068058

Mamabear, You said you’re in remission now. I tried to search back through entries to see your treatment. Did you take PTU? If so, how long? I was diagnosed a few months ago and didn’t want to jump right into RAI in hopes that I might go into remission and not need medication for the rest of my life. I tried tapazole for about three weeks until I had a terrible itching reaction. I stopped that for a few weeks and just started PTU. I was curious to people’s outcomes with PTU. People tell me to just do the RAI, but for some reason I want to try the drug therapy first. Thanks. Mary

[James]

#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

[susandemarco]

#1068060

Hi James,
I have been on and off PTU for the last twenty year. My first time I took it for eighteen months, and then went into remission for about
eight years. The second time, took for another eighteen months, then was in remission for about three years. Since then have been
on and off with each remission lasting a shorter and shorter time. The last time which was this year it only lasted about three months.

I am now taking two 50mgs a day until I see my endo next week. I am seriously considering doing the RAI next.

My question to you is if you take ATD’s all the time for maintenance.

Any input would be greatly appreciated.

Thanks,
Susan

[Bobbi]

#1068061

Hi, Susan:

Just a quick point of definition: remission is defined as being able to go off the drugs for a minimum of one year while maintaining normal levels of thyroid hormone. So, three months off the drug is not a remission unfortunately.

[James]

#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

[nestle]

#1068063

Thanks for your input James. I appreciate any of it. I did switch to PTU since the tapazole made me itch after three weeks. I’m now on week four of PTU and I think the itching is starting again. It is beginning on my feet, shins and hands. I’ll take some benadryl to see if that helps. I guess if this is strike two on atd, I’ll do RAI. I’m not nervous about it being dangerous or anything, but just had hopes that I would be into remission and not have to be on medicine for the rest of my life. I’m curious if anyone else has had an itching reaction to anti-thyroid drugs and whether they fought through the itching and it subsided. If I knew it would end, I would try to deal with it. Thanks.

[ewmb]

#1068064

nestle,
I had a bad rash on one version of methimazole. It was determined that is was one of the fillers and not the active ingredient. If you search my old posts you can find the things I wrote about it previously. It might be worth trying to find a formulation without povidone if you can get it. I had to go on the brand name which didn’t have it. My drug store wanted me to stay on the generic but I said no. I wasn’t on it too much longer anyway in my story. I had had RAI and was waiting for hypo to come.

Hope you can stop the itching. It know it’s bad from experience.

ewmb

[nestle]

#1068065

Thanks for the input ewmb. I’ll check into that if in fact the PTU does make me itch. I think that the tapazole (I was on generic) was beginning to work better than the PTU is. Thanks.

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