[Michabelle]

#1018312

Hi Everyone,

I’m new to the forum, and recently experiencing my Grave’s symptoms after being in remission for 2 years. I was first diagnosed in 2007 and was put on Tapazole. I took it for a year and it worked really well for me and I went into remission and was gradually weaned off the meds. I haven’t taken anything and my bloodwork in Dec 09 still showed that my levels were good. Unfortunately, I have had a stressful year emotionally and it looks like I brought it back. ” title=”Sad” />

I didn’t even think of it at first and have been having some symptoms for months. I kept blaming the symptoms on other things and didn’t even consider my Graves Disease. I guess I thought that maybe my Endo was wrong in my initial diagnosis since it was just after I had my daughter and I assumed that since I had such a great recovery from it, it must have been related to post-partum thyroiditis.

It was only when I had heart palpitations last week that I put it all together. I’m so exhausted all the time, my eyes hurt and are dry, I can’t focus on anything, have no memory, am so irritable and have just started losing some weight (the only good side effect!) I went to see my family doctor who confirmed that I am hyperthyroid again and prescribed me some beta-blockers until I can get in to see my Endo again. Luckily she is taking me next week.

I am just really concerned that it came back, and that I feel so much worse than last time. I didn’t have the eye symptoms last time and wasn’t nearly as tired and lethargic as I am now. I fear RAI and surgery so much and am praying that the drugs work again this time.

I am considering attending the conference in San Diego so that I can become better informed and understand this condition more. I am really nervous about things this time.

Thanks for listening and for sharing your stories as well…it is a great source of comfort!

[James]

#1063932

At the conference last year, it was noted that stress IS indeed a trigger to autoimmune related illnesses. There are other suspected triggers, but apparently not all as clearly definitive. Your assumption that an emotional year brought it all back is probably well founded.

From my experience, having had a few bumps along the way over the course of a good number of years, I learned that being in tune with your body is SO important. The moment you feel potential Graves’ symptoms coming on, get tested without delay and ensure that you are treated before becoming so severely hyperthyroid that you feel you are back to where you were when you were first diagnosed or even worse. Avoiding stress (easier said that done), is also important in getting better.

It’s great that you are now back on beta-blockers and seeking treatment again though. When we are in a hyper state, it is not uncommon for any of us (men or women alike), to experience some of the emotional upheaval that you are presently going through. Rest assured, like before, it will all get better in time.

As for the San Diego conference. I would highly recommend that you attend if at all possible. What is nice is that you have the opportunity to listen to a panel of speakers (all specialists in their field), and quite often have the opportunity to mix and mingle with the speakers on a one on one basis afterward. It’s not often that you get so many specialists and other Graves’ patients together to share knowledge and personal experiences with one another. I attended last year and am booked for this year as well. Well worth it and will certainly give you some degree of peace knowing that you are leaving with a lot more knowledge. This is a lifelong disease, but one that is easily managed for the vast majority of people who seek proper treatment.

Wishing you the best,

James

[Michabelle]

#1063933

Hi James,

Thanks so much for your response. It is so nice to talk to someone who understands what I’m going through. I don’t know anyone else who has Grave’s and there are so few resources in Toronto where I live. One thing that is different between the U.S and Canada is that Endos here prescribe ATDs more often and I’ve heard in the U.S. that RAI is often the go-to solution. The whole concept of RAI freaks me out to be honest, so I would love to do anything to avoid that!

When you say you are in remission, how did you achieve that?

I will definitely consider coming to San Diego to get more information. Thanks again for taking the time to send me a note!

[James]

#1063934

I’m a Canadian resident as well (from Calgary). My diagnosis is coming on 17 years ago now. At that time RAI was requisitioned for me very soon after diagnosis. I truly wanted to try other options first, but was hardly afforded the time by my then specialist to even discuss any of the other medically acceptable options (ATD’s being one of them). I’m not sure if it is so much a U.S. vs. Canada thing, but more of a Dr. by Dr. thing. I have met numerous Canadians over the years who have had varied experiences with Doctors, some leaning more toward one treatment option over another. In the end it is you the patient who should make the decision, and hopefully a very well informed decision weighing the pros and cons and looking at your individual medical circumstances that can weigh into your ultimate choice.

Anyway, to make a very long story brief, I was on ATD meds for what would considered to be long term. Two key things that I learned from the experience.

1. Don’t come off of the meds too early, but rather wean very slowly. Coming off of the meds too quickly almost always led to disappointment. Testing for the antibodies can help determine if you are at a stage where you can come off the meds, but there is no guarantee that the troubling antibodies won’t come back with the vengeance at a later date. With specific blood tests, your Dr. should be able to help you determine when to wean off of your meds. Appropriately. I have been in remission for close to 7 years now. I measured my success by having longer sustained remissions followed by a shorter periods of relapses. This was encouraging to me. Individual results will vary of course.

2. Do everything you can to have the healthiest lifestyle possible. Stress reduction definitely important, but also proper diet. It’s not a cure, but rather giving your body the best chance possible to get back in balance and heal. To this day I avoid processed foods as much as possible, and have limited my iodine intake.

There are three valid options and although you may be scared by the alternatives, there are many people who have had positive outcomes from any one of them.

Wishing you the best and hope to see you at the conference.

James

[sickofgraves]

#1063935

Hi! I haven’t posted in quite a long time. I also have had GD for many years and had a bad come down from a 7 year remission. But, with the help of knowledgable people like James, I have been able to not do RAI and have been back in remission for almost a year now. Don’t get me wrong…it’s like a job…keeping my diet together and my stress levels intact. I am like my own little ‘project’. Luckily I started with a pretty ‘fit’ lifestyle. The hardest part for me is staying off seafood. I live near the Northern California Coast and love salmon.

I have many ‘Gravesy’ times and I recognize them right away. I immediately go right into PREVENTION mode. Mega watch what I am eating. Exercise more (yoga is a nice attitude adjuster). Drink decaffinated beverages and put a ‘watch’ on my occasional glass of wine. I recently got my eyes checked and it’s looking good! I do take 5 mcg. of levythoroxine, because I now tend towards hypo. I did gain 10 lbs. in one month and luckily I started off pretty light and have been able to keep those nagging 10 lbs.in check. Feel free to write me here if you want some support. I am REALLY glad I didn’t do RAI!

I am semi-considering going to the conference. I need to be in SD that next weekend, so…hmm. Thanks again James! You maybe remember me and you really helped me out.

[Bobbi]

#1063936

Hi. I’m sorry you may be out of remission, but YOU did not bring it back. That sentence in your first post really tore my heart. We cannot prevent stress in our lives. Even happy events, like anticipating a baby, or getting engaged, causes stress. We can do things to help us cope with stress (getting exercise, eating well, getting proper rest, blah, blah, etc.) but stress itself is ALWAYS a component of life. And when we have an autoimmune disease, stress will rev up the immune system and our symptoms can return. It does not mean that we have done anything wrong, either. We could be getting the proper exercise, blah, blah, and STILL fall out of remission. Remission does not mean "cure." It means a "temporary" cessation of symptoms.

So, please, do not beat yourself up. Give yourself a huge hug, and some special treat.

[Ski]

#1063937

Just one comment re salmon ~ we’ve been told that there is no seafood that contains enough iodine to "throw off" your thyroid hormone levels except kelp/seaweed.

If you adore salmon, I know of no reason to avoid it. If you’ve eaten it and felt awful afterwards, that’s one thing, and may be unique just to you, but as far as I understand, there’s no need to remove it from your diet.

[Michabelle]

#1063938

Wow, it is so wonderful to get feedback from people who understand!

James – I agree with you about weaning off the meds slowly. I did that last time and was in remission after just one year of being on them. What I didn’t do, however, was follow the advice in your second point. My diet and stress levels didn’t really support things since I kinda thought I had it beat. I work out alot, and eat a fairly healthy diet, but probably drink too much wine and indulge in the sweets more often than I used to. Lately sugar wreaks havoc on me…last night I ate a chocolate cookie and I was so jittery and my heart was racing…I felt awful ” title=”Sad” />

sickofgraves- Thanks so much for your response! I will probably take you up on your offer of support!

Bobbi – You are so sweet! Your words were so comforting and I really appreciate your perspective. It really helps to change the way I look at this whole situation. Thank you!

[Ski]

#1063939

Hi Michabelle,
The most recent science on sugar says it doesn’t really "amp" us up (not that it’s incredibly good for us, but probably not the demon we’ve thought) ~ so perhaps you reacted to the caffeine in the chocolate, rather than the sugar in the cookie. I know that doesn’t help much, I just wanted to point it out….

[marta1234]

#1063940

hi Michabelle ,
I am from Toronto as well! It looks like a lot of doctors treat us with ATD recently in Canada and Us as well. Did you find it difficult to get to specialist in Toronto? …long waiting time.

I am just at the begining of my Graves Disease journey , I have been 12 weeks on MMI down from 30 mg then 10 mg and now on 5 mg now.
When we say that we should slowly wean ATD doesnt mean that we should take it for at least a year, two years?
What is the usual dose of MMI that patients stays towards the end?
I know that there is a long road ahead of me- I still have a lot of symptoms, but I would like to know if I may need to take 5 mg a day for at least another year?

[Bobbi]

#1063941

Hi, Marta:

Everyone is different. The dose that one person is on with the antithyroid drugs can be very much different from another persons.

Some of our doctors prefer not to keep their patients indefinitely on the antithyroid drugs. Others are more willing to let them be used as long as they are not causing problems, provided they are adequately controlling thyroid levels. But the doctors that prefer a limited time, usually talk in terms of one or two years, to see if the patient goes into remission. The drugs do not cause the remission. But our antibody levels can rise or fall for no well-understood reason, and when they fall low enough, our symptoms can subside, temporarily. Remission is definited as being able to go off the drugs for a period of at least one year, without a recurrence of the hyperthyroidism. Remission does not mean "cure." Our hyperthyroidism can return at any point in time.

[Kimberly]

#1063942

Hello – During this stage of your journey, your dosing will depend on your lab results. I have been on ATDs for almost 3 years, and my maintenance dose has ranged from 2.5mg/day to 7.5 mg/day…depending on where my labs are. As Bobbi mentioned, every person is different.

The idea of “slowly weaning” relates to when you are ready to come off of the meds. Although to my knowledge this hasn’t been proven, many patients report having better results keeping their hypERthyroidism at bay by tapering the dose down slowly, rather than going “cold turkey”. Also, when the time comes, you will want to talk to your doc about antibody testing. Again, to my knowledge, there are no studies *proving* this, but anecdotally, I hear about patients having better success with remission if antibody levels are low prior to withdrawing the drugs.

There has been quite a bit of controversy over the years as to whether ATDs facilitate remission because they bring our thyroid hormone levels under control…or whether there is some "immunomodulatory" effect (i.e. impact on the immune system). This would be a good question for our docs at this month’s conference! ” title=”Wink” />

Best of luck!

[Azgirl]

#1063943

Ok, im new to the board and cant figure out how to post a new thread…so i hope someone will read this.
1. looking for a good endo in phoenix arizona who will work with me on trying to reach remission.
2. My ft3 and ft4 and my TSH are finally all within range…started methizole 7 months ago. im down to 2.5 mgs a day. could someone please tell me what i need to look for in labs to see if im ready for remission? what tests do they do? i dont mind being on meds longer if needed, but when i asked my endo her reply was "we hardly ever see remission" that just about tore my heart out after being hypo to EXTREMELY OVER MEDICATED THEN HYPO. Finally after days of calling the office with my lastest labs, i got a hold of someone. I was thrilled to hear the 3 above were normal, but then she made that comment about hardly no remission!!

[Kimberly]

#1063944

Hello – I sent you an e-mail with some info on docs in the Phoenix, AZ area.

As I mentioned in the e-mail, true remission rates *do* tend to be pretty low…I’ve seen percentages ranging from 30% up to 50%. However, I have seen more and more doctors lately support patients in long-term use of anti-thyroid drugs, as long as they can maintain their levels on a fairly low dose — and as long as they don’t have liver or WBC issues. So even if remission isn’t in the cards, staying on the ATDs is still a viable treatment option.

Also, keep in mind that many endos "hardly ever" see Graves’ patients at all…so having a doc say that they "hardly ever" see cases of remission is sort of a relative term! ” title=”Wink” />

[Azgirl]

#1063945

Kimberly, I want to thank you for both replys, here and email. I also want to mention i seen your doctor is the Phoenix top doctors magazine this month…. I am interested in the support group coming this month… Is there an average amount of people that go there? LIke a small handful, or maybe a large amount? Is this something i would need to bring anything to go to? thanks for your help. julie

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