Let me also mention that I still feel terrible today.... my stomach has been so upset. And I have been so tired the last few days. I feel like I am backed into a corner as i don't want to stop my PTU and risk going too hyper or even another storm (that is my greatest fear) but I feel terrible. It looks like from my labs, I've gone even more hypo since dropping my dose... Is that right? Any advice is appreciated.

Hi scorpio...your mid range for your FT4 is 1.29 your mid range for your FT3 is 3.2 You are still hypo! The ranges for TSH are universal...they have been this way for over 5 years now but the labs have not changed there paper work. The ranges for TSH are now 0.35 - 3.0 I truly think you are in remission. There have been many times where the symptoms I felt when I was still on meds and was actually in remission...were just like hyper symptoms. You can have cross over symptoms each time you have a med change and you can have them from taking meds you no longer need. You could also have a touch of the flu.

I never made med changes without the labs to back it up. Labs dont lie...you are hypo. I would do another reduction...wait 2 weeks...get a lab done and then either do another reduction or go off meds to test remission based on the results of your labs.

When I went off meds to test remission it took a few months to settle...my labs bounced around a bit. I have all my labs recorded in my journal...you could have a look to see what my labs did when I went off meds just as an example of what to look for. Big Hugs and congrats...remission is just around the corner...Kathy

Yes, as Kathy says...good idea to do it this way. Good luck with the dose reduction...!

{{{hugs}}} :-)

Thank you! With the dose reduction, I am already only taking 12.5 mg daily (divided twice daily).... should I do every other day now or do you think that just taking half the dose I take now (6.25 mg) daily at night would be sufficient for a dose reduction? These last couple days have been terrible... I've been on the brink of going to the ER at times or taking my beta blocker again but then I take my blood pressure and check my heart rate and it's down in the 50's! Praying this is remission... that would be great great great news.

DairyTech: I did look thru your labs and did see the bounce a bit after coming off PTU... that gives me some hope and makes me a bit more comfortable to know that my levels may bounce.... thank you.

I would suggest dividing the 6.25 mg into halves again in tiny, wee crumbs. I done this before with the MMI. I do not know how the PTU would do and would likely crumble as the MMI did for me. As long as I calculated the teensy crumbs I did fine... This is only if the once a day doesn't cut it for you and if you did experience the hypER surges for more than a few days.

{{{hugs}}} :-)

I don't know that I could split the 6.25 into two doses as the 12.5 mg dose was already a bitty teeny tiny dose and crumbs as it is... I'll start by trying just 6.25 mg at night... since that seems to be when the thyroid is most active... if after a few days to a week, I start feeling hyper (cant imagine going that hyper in a week), then I'll split what I can, if I can. Thanks for the advice... hoping this is the beginning of my journey into remission. I am seeing a surgeon on the 13th of this month to see if I can have a thyroidectomy or partial thyroidectomy done to get this goiter out of me! If I am in the beginning stages of remission, do you think a thyroidectomy is a good idea? I was reading some of the posts from Steph who had a thyroidectomy after going thru many many loops and seeing several doctors and thought that I'd get another opinion as I don't like having this goiter....

Hey! From what Elaine says, if you are secreting tsh on this dose and your FT4 is at the bottom, you're said to be in remission. I went from daily to 4 times a week, three times a week, then two, then off. After one month off meds, my tsh was 2,50 and FT4 was .0.97. I have been off meds almost 2 months now and feel fine. No fast heart rate or any other hyper stuff but my tsh was quite a bit higher than yours. It just might mean my FT4 is too low for me. I go for labs again before I see the doc in September.

p.s. Did you always have the goiter or just since going hypo?

Yes, wondering as brans says...did your goiter begin when you went hypO...?

So, should I do every other day of PTU twice daily instead and keep it at my 12.5 mg dose versus once daily dosing of 6.25 mg? This is all so confusing....

I've had my goiter since before my storm in August of last year but didn't know it til I had the storm.... looking back thru photos though, I had it from about January of last year (2009), maybe even longer and didn't know it. It was a lot larger (looked like a baseball back in August of last year) and shrunk about a month after my storm (after being on steroids). My endo said it would go away once my levels came into range.... well, it never did shrink any further.... but never got larger either until about a month ago, it enlarged.... possibly due to being hypo... I can feel the tightness in my neck. As the year has gone by, I constantly asked how to get rid of the goiter and was told I would need RAI but I refused it... so now I've decided to make an appointment with a surgeon on my own and see if she would agree to it.... this surgeon i'm meeting with specializes in thyroid surgeries and is supposedly one of the best if not the best in this area... so it's worth to see what she has to say. My current endo will be doing an ultrasound the first week of September to see how much larger it has grown since the storm if any... is a thyroidectomy a bad idea if I am in remission?

You could check the TSI and the TRAb and see where you're at for remission? The thing is you have responded so well and it's only been a year for you.

I went hypO three months after the dip in the Free Ts. It took me awhile to climb out of the hypO-hell. I had enlarged goiter from when I was hypER and then hypO. Once I came out of it and kept the Free Ts nice and steady, the goiter went down. It took three years before my doc says I finally looked great. I was more enlarged on one side than both sides tho...

{{{hugs}}}

The thing is...your goiter can't shrink if your hypo. If you are in remission and you go off meds...there's a really good chance the goiter will shrink if your levels return to normal. If ablation or partial ablation is what needs to be done...I think...for me...a TT is the way to go. I would give it a bit more time though and see if it will shrink on its own. I have read many stories where they have shrunk once levels return to normal weather your on meds or not...normal levels are the key. Big Hugs...Kathy

Thank you for all the advice. I also posted to Elaine Moore and she stated that she believes I may be in remission and I should stop meds. I think I'll do every other day at 12.5 mg (divided for 3 weeks) and then lab and see where I am. Unless I keep feeling as terrible as I do then I'll reduce accordingly by the week.... As for removing my thyroid.... I'll meet with the surgeon as well and get an opinion. My thyroid has a nodule on it as well and in the last month, the endo said one said is more swollen than the other... (the opposite side that the nodule is on). My thyroid storm was originally brought on (I believe) due to having a cat scan with iodine contrast to view this goiter as it was causing me to choke (twice prior to the storm- within 2 weeks of the storm). Every now and then again, I get this feeling that food is stuck... luckily, I don't eat anything such as bread, steak, beef, or anything that could get lodged... I try to eat stuff that breaks up easily in case it does get stuck. I was reflecting on my journey since this all began and without this support group, I don't think I would have come as far as I did. I was able to take bits and pieces of each person's journey that worked towards their remission or towards achieving their "happy" spot with their levels and incorporated that into my own journey. If it was possible, I'd send each and every one of you who helped me along the way with your bits and pieces of advice the biggest thank you I could. I found myself crying this morning as I reflected and realized how hard I have worked to achieve remission and I just may be there.... words can't describe the feeling. Thank you from the bottom of my heart.... with the biggest hug I could give via a website....

~HUGS

You are hypo, and we can tell because your FT4 is scraping the bottom of the range. It might be nice for you to ask your endo or doctor for a small prescription of thyroid hormone replacement, like Levoxyl or synthroid, to help get your FT4 back up into range faster, so can feel better, sooner. I took 25mcg of levoxyl the last time I went really hypo, and it helped me a lot.
It is also a nice idea to do this if you are considering ablation. Several people on here ablated and found out that they had problems with certain brands of thyroid hormone replacement and were stuck feeling pretty terrible while they brand shopped while very hypo, so this way, you can find out which brand of thyroid hormone replacement might work best for you before you ablate if you decide on that route.
You should feel better after stopping the PTU, but it can take awhile to climb back up to normal after you've gone hypo (for me, it would take nearly a month and a half to climb back up to normal ranges and then the moment I'd start back up on a small amount of methimazole, I'd crash very hypo. I was in remission, but my endo was going by my TSH, so I was kept on unnecessary medicine for over a year.) Also, be careful what you eat when hypo. Unfortunately, you have to limit both excess Iodine (kelp, seafood, dairy, cured meats, egg yolks, red dye #3) to help avoid thyroid eye disease getting triggered while you're hypo, and limit your goiterogens: Broccoli, peanuts, cabbage, soy, peaches, corn.
Take care!
Hannah