[Khadijah]

#1060750

Hi! I started this thread to hopefully help those new to graves get an idea of what to expect down the road. Others should also share their experience since obviously I can only speak for myself.

First off, you will learn soon enough how your body adjusts to medicine. Whether you go with RAI or surgery, which requires synthroid for the rest of your life (correct me if I’m wrong), or the Meds path you will have to recognized and pay attention to your moods, sleep, appetite, health, and brain function. Getting the planets back in alignment can take time. But, soon you will be a pro and will have a good idea whether you need more or less medicine.

The fact that I HATE taking pills (I didn’t even take the beta blockers since that was optional), the possibility of remission and someday not having to take medicine for the rest of my life seemed worth the effort. Also, I suspected my Graves was triggered from high levels of stress during and right after pregnancy. I had a gut feeling I would reach remission even though I hated to admit it because it felt like it would take an eternity to get there.

My immune system sucked the first 2-3 years on graves. I rarely got sick before maybe a sinus infection once a year. With Graves I got sick 3-4 times a year and the last couple of years it went back down to zero or once a year and manageable. Learn to take b complex, magnesium, fish oil (omega supplements) and drink lots of water or decaf tea.

Moods swings suck, learn to do yoga, exercise even if it’s 15 min at home twice a day. Go outside and take a walk or sign up for a class – there are free classes online and tutorials for things that interest you. If you don’t have a computer go to the library. Interact with people if you can it doesn’t have to be a lot. Once a month at least. Isolation can mind f$&@ you and hinder recovery.

Learn to eat really well, you now have an autoimmune issue. Google “autoimmune diets” some people find changing their diet cured them from all sorts of illness. Who knows your Graves may have been triggered by a bad diet? If you don’t eat well chances are you don’t sleep well and you really need 8-10 hours!! In any case zquill and Advil p.m. Are like a good friend with benefits. If you don’t eat, sleep or feel well your brain won’t function. And if you think your smarter than a third grader think again Graves will have you telling people you “smoked too much weed when l was young” even if you didn’t.

So, I started with 30 mg. of methmizole. I hit 15 mg after about 9-12 months. Even though I felt much better after the first 3-6 months symptom-wise regarding heart palpitations, hot flashes, metabolism, paranoid etc. I probably then hovered around the 10-15 mg mark for about a year and a half, which wasn’t bad. I was back to doing my dance and feeling normal no glaring symptoms and my moods were much better. When I got down to 5-10 mg. I started to feel that cognitively I had improved. I would say this was the beginning of the maintenance phase where a dosage change wasn’t as drastic as previous changes but still noticeable. I also stayed at this level for about a year. Then I hit 2.5-5 mg. this was really good I stayed here for about a year. I didn’t get sick anymore, my moods had stabilized, I felt my brain was functioning as well as can be expected for someone over fifty….and remission seemed attainable.

But, like all junkies I felt I had to have that fix and begged my doctor not to take me off. He said I was ready and I gave him a hundred excuses why I couldn’t stop. Finally I ran out of Meds and he wouldn’t refill my RX. I sopped taking methmizole in May and I feel great. I can’t believe i don’t have to take methmizole everyday. It’s weird traveling and not having to worry about my pills. I do expect to relapse but being at the 2.5 -5 mg level, which is fine. Now that I can recognize the symptoms I don’t ever expect that I would spiral back to those 30 mg days in the beginning. So, yeah, this is the new normal…

If you have any questions, please private message me as I’m more than happy to help, but chances are you wont hear from me for a while as I only check in every 6-12 months.

[Kimberly]

#1184500

Great info – thanks for sharing your story!

One note about diet is that there is a LOT of conflicting information out there. We’ve heard from patients who have done paleo, vegan, anti-inflammatory, low iodine, and eliminating food sensitivities based on testing. At this point, there isn’t any good research to show that one of these is more effective for Graves’ than the others. Of course, focusing on nutrient-dense whole foods and cutting down on processed foods with unpronounceable ingredients is always a good thing!

[Khadijah]

#1184501

Kimberly wrote:

Great info – thanks for sharing your story!

…Of course, focusing on nutrient-dense whole foods and cutting down on processed foods with unpronounceable ingredients is always a good thing!

Yes, this is what I am talking about and cutting out soda. I don’t follow any particular diet but for many people just learning to eat natural foods and cutting out sugar is a big step, myself included.

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