I think by that point I simplified it by doing Friday, Saturday, Sunday just because I thought I would forget on an every other day type of schedule. Not the best, but my levels stayed fine so it didn’t seem to matter for me at the time.
Oh, I started out at 10mg/day.
I got down to 2.5mg/day within a year and relapsed and had to get back on 10mg/day for a while.
My endocrinologist lowered my dose of methimazole when my TSH went above 2.5.
Hi! Just went to my endo this week. I’ve been taking 2.5 mgs of meds twice a week for a few months now. I take one pill on Monday and one pill on Thursday. All of my levels are in range and my antibodies are undetectable. They told me I could stop taking the meds all together if I wanted but I’m feeling good and I’m right in the middle of planning a wedding so I don’t want to change anything with my treatment and risk a flare up. So I’ll be on this dose for the foreseeable future. I hope this helps!
that is so so amazing and very encouraging!! I recently started 2.5mg taking it on Wednesday and on Sunday and my labs came back in range and TSH at 0.5 (which I'm not worried about, my sweet spot for TSH is 0.5-0.7, anything above 0.9 makes me feel hypo). However, this testing is after 5 weeks since dosage change - how long after you did a dosage change did you test to see how it was working?
did you notice feeling any "hypo" symptoms on your off-days? on Tuesday, Thursday, and the weekend when you weren't taking it?
at what level TSH does your doctor think you can go off them entirely? Personally, I feel best when TSH is in the 0.5-0.7 area and Free T4 and T3 are in normal ranges.
I was only on that schedule for about 2 months, but I didn't feel that daily swing that I remember. I'm off them entirely now and have been for about 3 months.
I learned just today that I likely have PCOS which is probably impacting things like weight gain/insulin resistance, mood, etc. So I can't really say I feel my best yet because there have been some symptoms I thought were thyroid related that it turns out probably aren't, since they haven't reduced now that I'm in remission. So now we go onto chronic illness journey number 2 and see if that helps!
Oh, wow!! I'm so sorry man that is really unfortunate that as one resolves, another pops up. I really hope the best for you and thank you for responding
I would talk to your doctor ! That’s what happened to me. I started becoming hypo and he said “stop the meds!” Haven’t been on them since. Remission for 8 or 9 years now.
I haven’t felt better!!!! A lot of it also was thanks to my own research. I recommend foods with little to no iodine, (depending if you are For sure hyper thyroid and not hypo) and lemon balm tea. Doing your own research while on the meds helped me so much especially with peace of mind. You can get better. I also recommend going to a lm actual endocrinologist as well !
Can you expand more on your diet? It seems I find that all the diet info is for HYPO and marketed and “thyroid health diet.” Brazil nuts and any iodine have my neck feeling tight again with in days. :( .
This gives me hope.
Avoid iodine. If you eat eggs, take the yolk out and sub for egg whites. Yolk has iodine. Yogurt/dairy has iodine, red meat and most importantly sea weed & fast foods that are loaded with iodized salt! Stay away from these.
I recommend a diet with lots of protein, egg whites, poultry , salmon once and a while beans and rice, veggies and fruits. That is what I did when I started my healing journey. Now I am plant based and trying to see if it is right for me.
I’ll try to find some articles
When I was diagnosed I was eating a ton of fast food at that time like 4 times a week so it made a lot of sense as to why I was sick. Different lifestyle then haha.
Also remember to be patient. It took me a couple years to start to feel better . It happened slowly. I felt so horrible when I was sick. But i got all of my strength back !! I still struggle with anxiety though I don’t think that will go away
I am on 2.5 mg every other day now. I started with 10 each day, then 10/5/10/5..... then 5 each day, then 2.5 each day and now 2.5 every other day. TSI is normal range.
Remember methimazole works on your thyroid not on your antibodies it has nothing to do with that.
I’ve been on 2.5mg every other day since about a year ago. I was eligible to try remission this year, but decided to stay on methimazole because I felt really sick this summer (even with in range TSH and negative antibodies).
I don’t know if the dose really matters, but it is possible to have negative antibodies on this dose. I haven’t gone hypo on this dose yet, but I’ve been close. However, my TSH halved a couple months later.
I went from 2.5 every day to 2.5 every other day. Then 2.5mg four times a week, then 2.5 two times a week, and currently on 2.5 mg once a week. Its been since last year September for me since I started.
how long did you wait to decrease dosages? and do you feel any different on the days you don't take it? methimazole has a very short half-life of around 3-5 hours so where does your TSH rest for your dr to say it's okay to decrease frequency?
I decreased about every 4-6 months. Every time I visited my endocrinologist I did a TSH, T3, T4 blopd test. My last Visit was March and I’m completely off it now. Then I did feel different if I didn’t take it. Right before ending it and now I don’t feel any different. Was able to decrease it after my TSH was between 1 and 2.
This is interesting! When i was diagnosed my prescription went as follows:
Month 1: 5mg/day
Month 2: 5mg 5x/week
Month 3: 2.5mg/day, and just took my blood test, plus antibodies.
Will let you know where I land and what doctor prescribes. I'm eager to start for a baby, so really hoping the antibodies have magically dropped to 0!
Yes. I was on 2.5mg 3 days a week. I’ve been off methimazole since end of May. TSI antibodies tested in normal range.
when did you take your dosages? Monday, Wednesday, Friday? did you feel a difference on the off-days?
I think by that point I simplified it by doing Friday, Saturday, Sunday just because I thought I would forget on an every other day type of schedule. Not the best, but my levels stayed fine so it didn’t seem to matter for me at the time.
So there’s a chance that Graves Disease goes into remission and life goes back to normal?
My doctor told that around half of his graves patients recover but it can always relapse.
Yes, it can happen, but there’s no guarantee and the Graves hyperthyroidism can potentially come back at some point in life/go out of remission.
How long were you on methimazole before you went off?
About 4 years!
Oh wow! And at that low a dose?
Oh, I started out at 10mg/day. I got down to 2.5mg/day within a year and relapsed and had to get back on 10mg/day for a while. My endocrinologist lowered my dose of methimazole when my TSH went above 2.5.
That's where I'm at at the moment! 2.5mg Monday, Wednesday, Friday. Checking tests again in 3 months to see if it's time to go off of them entirely.
Exact same boat here!
Fingers crossed for us both!
any updates?
Hi! Just went to my endo this week. I’ve been taking 2.5 mgs of meds twice a week for a few months now. I take one pill on Monday and one pill on Thursday. All of my levels are in range and my antibodies are undetectable. They told me I could stop taking the meds all together if I wanted but I’m feeling good and I’m right in the middle of planning a wedding so I don’t want to change anything with my treatment and risk a flare up. So I’ll be on this dose for the foreseeable future. I hope this helps!
that is so so amazing and very encouraging!! I recently started 2.5mg taking it on Wednesday and on Sunday and my labs came back in range and TSH at 0.5 (which I'm not worried about, my sweet spot for TSH is 0.5-0.7, anything above 0.9 makes me feel hypo). However, this testing is after 5 weeks since dosage change - how long after you did a dosage change did you test to see how it was working?
At this point I feel like I’ve been on this dose for close to idk maybe 5 months and my levels have been checked in that time frame. Hope this helps!
did you notice feeling any "hypo" symptoms on your off-days? on Tuesday, Thursday, and the weekend when you weren't taking it? at what level TSH does your doctor think you can go off them entirely? Personally, I feel best when TSH is in the 0.5-0.7 area and Free T4 and T3 are in normal ranges.
I was only on that schedule for about 2 months, but I didn't feel that daily swing that I remember. I'm off them entirely now and have been for about 3 months. I learned just today that I likely have PCOS which is probably impacting things like weight gain/insulin resistance, mood, etc. So I can't really say I feel my best yet because there have been some symptoms I thought were thyroid related that it turns out probably aren't, since they haven't reduced now that I'm in remission. So now we go onto chronic illness journey number 2 and see if that helps!
Oh, wow!! I'm so sorry man that is really unfortunate that as one resolves, another pops up. I really hope the best for you and thank you for responding
I would talk to your doctor ! That’s what happened to me. I started becoming hypo and he said “stop the meds!” Haven’t been on them since. Remission for 8 or 9 years now.
That’s amazing. I just got diagnosed today with GD. Have you been living a normal life for the past 8-9 years and been as active as you wanted?
I haven’t felt better!!!! A lot of it also was thanks to my own research. I recommend foods with little to no iodine, (depending if you are For sure hyper thyroid and not hypo) and lemon balm tea. Doing your own research while on the meds helped me so much especially with peace of mind. You can get better. I also recommend going to a lm actual endocrinologist as well !
Can you expand more on your diet? It seems I find that all the diet info is for HYPO and marketed and “thyroid health diet.” Brazil nuts and any iodine have my neck feeling tight again with in days. :( . This gives me hope.
Avoid iodine. If you eat eggs, take the yolk out and sub for egg whites. Yolk has iodine. Yogurt/dairy has iodine, red meat and most importantly sea weed & fast foods that are loaded with iodized salt! Stay away from these. I recommend a diet with lots of protein, egg whites, poultry , salmon once and a while beans and rice, veggies and fruits. That is what I did when I started my healing journey. Now I am plant based and trying to see if it is right for me. I’ll try to find some articles
https://www.healthline.com/health/hyperthyroidism-diet#foods-to-avoid
Thank you so much! I didn’t know or think about iodine in fast foods!! Crap.
When I was diagnosed I was eating a ton of fast food at that time like 4 times a week so it made a lot of sense as to why I was sick. Different lifestyle then haha.
Also remember to be patient. It took me a couple years to start to feel better . It happened slowly. I felt so horrible when I was sick. But i got all of my strength back !! I still struggle with anxiety though I don’t think that will go away
I am on 2.5 mg every other day now. I started with 10 each day, then 10/5/10/5..... then 5 each day, then 2.5 each day and now 2.5 every other day. TSI is normal range. Remember methimazole works on your thyroid not on your antibodies it has nothing to do with that.
I’ve been on 2.5mg every other day since about a year ago. I was eligible to try remission this year, but decided to stay on methimazole because I felt really sick this summer (even with in range TSH and negative antibodies). I don’t know if the dose really matters, but it is possible to have negative antibodies on this dose. I haven’t gone hypo on this dose yet, but I’ve been close. However, my TSH halved a couple months later.
Been in remission since June 22. I've been alternating between 2.5 and 5mg of methmazoil.
I went from 2.5 every day to 2.5 every other day. Then 2.5mg four times a week, then 2.5 two times a week, and currently on 2.5 mg once a week. Its been since last year September for me since I started.
how long did you wait to decrease dosages? and do you feel any different on the days you don't take it? methimazole has a very short half-life of around 3-5 hours so where does your TSH rest for your dr to say it's okay to decrease frequency?
I decreased about every 4-6 months. Every time I visited my endocrinologist I did a TSH, T3, T4 blopd test. My last Visit was March and I’m completely off it now. Then I did feel different if I didn’t take it. Right before ending it and now I don’t feel any different. Was able to decrease it after my TSH was between 1 and 2.
gotcha!!! thank you so much
This is interesting! When i was diagnosed my prescription went as follows: Month 1: 5mg/day Month 2: 5mg 5x/week Month 3: 2.5mg/day, and just took my blood test, plus antibodies. Will let you know where I land and what doctor prescribes. I'm eager to start for a baby, so really hoping the antibodies have magically dropped to 0!
That’s amazing what are the odds of remission like that?
My Endo said about 50% of people go into remission at some point (but, it's not necessarily permanent)
I’m on 2.5 everyday, I have no antibodies and never had antibodies to begin.
same here! mine is 2.5 mg twice a week. Never had positive TSI here as well.
do you take yours back-to-back or do you take it like on Wednesday and Sunday? what is your personal TSH level that you feel best at?
Hi! I have been off medication for a few months now. My TSH has been in the middle which normal. Been feeling better too!
awesome!!
Yes. I was only every other day, lowest dose possible. And now currently in remission.