Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hey everyone!! I was diagnosed with Graves disease ~3.5 years ago. I went into remission after 6 months ish and have been for about 3 years. My thyroid levels have recently gone up again, and the endo hinted that since my remission only lasted a bit over 3 years, that this trend would likely continue the rest of my life.
She brought up RAI as a solution and I pointed out there is virtually no cost difference between this and methimazole; both are pills and bloodwork once or twice a year for life. She pointed out the black box warning on the methimazole, and the fact that synthetic hormones are nontoxic.
ALSO, my first time diagnosed with Graves disease I was also diagnosed with mild thyroid eye disease. That cleared up on its own and I have not shown symptoms since. I am nervous about RAI because I was under the impression it exacerbates the TED, but my endo said it only does that if the TED is CURRENTLY active. Im not only concerned about activating the TED by getting RAI, but am also wondering about long term effects on the TED after RAI (regardless of if it's active or not right now) and whether this is a good idea.
So, for me, do you all think I should stick with methimazole or get the RAI?
Have you all experienced remission durations being similar, or have they been very inconsistent? Have you found that diet and stress play a big role in how frequent levels get out of whack??
Thanks in advance for any input.
She brought up RAI as a solution and I pointed out there is virtually no cost difference between this and methimazole; both are pills and bloodwork once or twice a year for life. She pointed out the black box warning on the methimazole, and the fact that synthetic hormones are nontoxic.
ALSO, my first time diagnosed with Graves disease I was also diagnosed with mild thyroid eye disease. That cleared up on its own and I have not shown symptoms since. I am nervous about RAI because I was under the impression it exacerbates the TED, but my endo said it only does that if the TED is CURRENTLY active. Im not only concerned about activating the TED by getting RAI, but am also wondering about long term effects on the TED after RAI (regardless of if it's active or not right now) and whether this is a good idea.
So, for me, do you all think I should stick with methimazole or get the RAI?
Have you all experienced remission durations being similar, or have they been very inconsistent? Have you found that diet and stress play a big role in how frequent levels get out of whack??
Thanks in advance for any input.
I m new to this and dont have a whole lot of experience but from what i already know, my mind is pretty firm set on not getting RAI to fry my organ. I had 8 surgeries in my whole life and even though RAI is not a surgical intervention, the goal is the same - disable the organ. In my experience, every time an organ or a body part is altered, it is never the same after.
Methimazole is yet another concern i have. It is notorious for causing transient liver damage and agranulocytosis. I am also suspecting that my immune system was affected by the drug because even with normal thyroid levels and WBCs i was getting sick with all kinds of things for weeks at s time i normally did not get - colds, bronchitis, etc.
Since i started 5-10mg/day reduction things seem to be much better.
I am planning on staying with methimazole however ONLY if i can keep this disease at bay with low dose methimazole.
My other plan is to go out of state and see MD who will help me deal with Graves through immune system therapy, basically to get to the root of the problem and treat that, rather than cut, fry or suppress my thyroid.
I believe my issue is caused by recent history of physical trauma, bone infection and multiple surgeries. I d like to recover my body from that before i do anything permanent.
You have a tough choice to make.. I sincerely with you all the best.
Immune system therapy sounds like an interesting idea. Since Graves disease is an autoimmune disease, destroying my thyroid will only get rid of my hyperthyroidism, but doesn't fix the fact that my body is prone to autoimmunity. Methimazole nor RAI fix the core problem of our overactive immune systems.
If you do go out of state for the therapy, please keep me posted on results. Best of luck to you and thanks again for your input!!
I have had GD since 2000 but wasn't diagnosed until 2001. After many years of having started out with 40 mg of MMI (Methimazole) and now I am on such a tiny dose of 0.625 mg after having made dietary/environmental changes to avoid the triggers. I consume mostly organic and strive for chemicals and toxins (GMO-free) free and also do the same for the personal products used as well as around the household.
I'd rather not take RAI and I feel I have done very well to keep stable. Apparently my holistic doctor thinks so as well. I no longer see an Endo.
I did not suffer eye problems except dryness. I find that with having problems with certain minerals and supplements and taking them helps me recover. Potassium is helpful to keep eyes as well as mouth moist.
{{{hugs}}}
It's not however reasonable to hope anyone will make a satisfactory artificial thyroid gland
My choice has been to stick to block replace (MMI). I have a list of supportive studies if you like.
With the block and replace, you are taking MMI everyday? Do you worry about the health effects (on your liver, etc?)
I will PM you incase you don't check back on this post.
http://www.dailystrength.org/groups/graves-disease-general-info/discussions
Another source of info is Elaine Moore. She has a website that helps people with Graves. She has written many books on this subject...in fact it was her that helped me achieve remission with both Graves and TED. I would check out her website and read some of her articles...here is the link.
http://www.elaine-moore.com/Articles/Graves%E2%80%99Disease/WhatisGraves%E2%80%99Disease/tabid/186/Default.aspx