Am I understanding this correctly? Your FT4 went from 79.1 down to 25.5 on 200mg of PTU but your doc increased your meds to 600 mg of PTU based on your lowering FT4?

If that is correct...I think your doc jumped the gun...200mg of PTU was working well and his bumping you up to 600 is going to drive your levels into the basement of hypo hell.

If these were my labs...I would have stayed on the 200mg for another 4 weeks tops...see what my labs were and adjust accordingly. Since you responded so well I believe it would have continued. Also...your FT3 was falling with your FT4...that is also a very good sign. According you your last labs you were not really all that hyper...you are at 25.5 and your goal for your FT4 would be around 20 or 21...so you see...you were almost there on the 200mg of PTU. Big Hugs..Kathy

I would just like to add...if I am understanding what you wrote correctly...my guess would be...your doc increased your meds to bring up your TSH...dont go there...ignore the TSH completely..in fact...I wish they would never run the TSH...you base your meds on your FT4 only...Big Hugs...Kathy

I agree 100% with Kathy - there is NO reason your PTU dose should have been increased.

There are many published hyperthyroidism treatment guidelines including one written by the AACE/ATA which is in medicalese.

The American Family Physician website has a section on the diagnosis and treatment of hyperthyroidism (Graves') and it's written in "English":

http://www.aafp.org/afp/2005/0815/p623.html

Take a peek at the Treatment section....scroll down to the anti-thyroid drug section and then look at the section about methimazole.

You will see:

"TSH levels may remain undetectable for months after the patient becomes euthyroid and should not be used to monitor the effects of therapy."

Then take a peek at the section about PTU and you'll see:

"The goal is to keep the freeT4 level at the upper level of normal."

I think you can now appreciate what Kathy said......and how wrong your doctor is (sorry).

Thank you ladies, that's a relief.... you know, I almost immediately gained weight as soon as I upped my dose last week. My apettite is still as high as it was when I was really Hyper, but obviously my body isn't able to metabolize it on the higer dose.... I also had a serious moment of depression this weekend that really disturbed me.... so... while I hate to go against my doc's recommendation, should I go back down to the 200mg per day, or 300mg to stay somewhat close to what he prescribed?

And yes Kathy, you read it right, my FT4 went from 79.1 down to 25.5 on the 200 mg....

I would stay on the 200mg/day (divided into 3 doses)

Once you've been on that dose for 3-4 wks. at the most, I suggest new labs since you'll most likely be ready for a dose reduction.

Hugs Carol...I was just about to write the same thing. I agree completely.

Sometimes what your doc doesnt know cant hurt you. I had to lie to my docs and adjust without there knowledge and I'm pretty sure many others did the same thing. I always let my doc know what was going on but only when I got the desired results. I am not an advocate of deceit but when it came to my health...it had to come first. I already had learned that few docs know how to treat Graves Disease...so with the help of the folks here and Elaine Moore...I took control and achieved the remission my Endo's said I could never achieve. Sometimes you just gotta do what ya gotta do to get healthy...Big Hugs...Kathy

Thank you ladies, you are all fantastic... I do feel like I am being slightly deceitful, but it's my body and I should be the one that ultimately makes the best decisions for myself, based on my research and the support and experience of all of you!

Thank you! I will let you know how it works out for me!!

Oh, and I do have labs booked for next Tuesday, which is 2 weeks after my Doctor prescribed the increase. He asked me to get bloodwork again in 2 weeks from that date, and then again in 2 or 3 weeks.

Hi Ladies, I just received the results of my most recent labs from March 26th. My Endo actually called me himself, which was lovely! haha

So here are my current labs... and I personally feel pretty excited about this, but I want your feedback... and keep in mind that I did NOT triple my dose as he had instructed, and kept it at 3 PTU doses a day for a total 200ish mg a day (it isn't always exact)

FT4 = 15 (9.0-23.0)
FT3 = 6.4 (3.5-6.5)

He asked me what dose I was currently taking, and I told him that I had tried at the increased dose and then experienced weight gain, headaches and depressive feelings, so I chose to resume what I was originally on, 3 times a day. He didn't seem too concerned, which is good I guess. He then asked me if I wanted to continue for a while at this dose and then make a decision for RAI or Surgery, and I told him that I would prefer to go into remission than either of those options. We are going to see how my levels continue on and I have bloodwork scheduled for Apr 23.... he said that we want to make sure (of course) that I don't go too hypo and will see how my current dose is treating me.

I also have a question about skin care - I feel like the quality of my skin is really off and I am wondering what type of products you may use, preferably as close as possible to natural-ish?

Thanks! I look forward to your feedback!!

Congrats for telling the endo what you did and, most especially, the positive results in your labs!!!

Unfortunately, after seeing your most recent labs, it doesn't sound like your doctor ordered the dose reduction you clearly need.

Per the link I shared in my earlier post on here, you should be taking the lowest possible dose that will maintain the FT4 level near the high end of the range.

Based upon your lab's ranges, this means FT4 20 or higher.

You might want to consider lowering your dose to 150mg/day taken in 3 divided doses of 50mg each.....with the expectation of possibly needing another dose reduction after your next labs.

Re skin care: coconut oil

Thank you already cd!! I was thinking so myself and am already on my "own dose" instead of the 600mg but after seeing this last result I had thought about bringing it down some more!

What form of coconut oil? The harder type or the liquid? Thank you!

I, too, have had skin issues lately. It's mostly effecting my hands. I love coconut oil- use it for a ton of stuff. I agree with CD to give that a try. It actually didn't help my hands too much, though. I went on to another cream that is used for eczema and it has improved. Not sure if it was because of the cream or just because this skin thing has come and gone on it's own- which it has done before.
If you have a Trader Joes- swing by there and get their jarred coconut oil (harder type). It's by far the cheapest ($5.99 for me) I have found- organic, unrefined, I love it. Best of luck to you!
PS- Whose little toes are those on your avatar? Too cute!

Hugs MMouse...yup..your getting the hang of it...good job! I agree with Carol...a reduction is needed with probably another after this next decrease. Remember...slow and steady wins the Graves race...Big Hugs...Kathy

Those sweet little toes belong to my Son, who is 3 now and the light of my life. Those little toes are considerably bigger now!

Thanks ladies, so far I've decided to bring myself down to 150mg per day, split up over 3 doses. I am SO happy that everything has come down so quickly and I'm SURE glad that I didn't continue with the Endos recommendation to triple my dose after I shared my labs with you ladies. Imagine how far down I would be? I would absolutely have been hyPO! I can't help but feel a little that maybe the Docs try to manipulate those that don't educate themselves into succumbing to drastic methods? I mean really, if they put people on an even more excessive roller-coaster ride (which is SO dangerous) the patient might become so discouraged and fed up with the process that they decide to allow themselves to be "bullied" in a sense, into having surgery or RAI.... a PERMANENT decision. Am I wrong here?

Anyway, I'm encouraged to see how the addition of the Quality supplements I have incorporated will continue to impact my health further for the better!! Fun fun!!

I have often wondered the same thing...do they do it on purpose or they just really dont understand the thyroid and it functions. I need to believe they dont understand.

My 2nd Endo was just fresh out of Endo school...he actually took over the practise of my 1st Endo...my 1st retired and was at one time...the president of the Canadian Thyroid Foundation...anyway...I was pretty excited to get this new Endo...I thought...great...he will be on top of all the new treatments for Graves and TED...NOT...in fact...he was worse than my 1st Endo. This newly graduated Endo dosed by the TSH as well...go figure...he also was very pro RAI...Big Hugs...Kathy