It looks like it would be a good idea to get another doctor.

I see both the holistic Doc and his Endo friend. The Endo is once per year visit and Doc is three to four times per year. I inform to the Doc's office every time I make a slight dose change. I email to them and the nurse just puts it on the chart.

Hope this helps. I don't suggest that one changes doses if they're fairly new to the game to managing Graves' Disease. I've been doing this for 8+ years and know how to do this.

{{{hugs}}}

I know docs dont like this and I dont recommend doing it unless you know your bodies responses very well. Thats the whole thing...like diet responses...med responses...triggers...sweet spot etc. I did do my own med changes...but I know my disease very well. My doc didnt like it at first so I would do a change and if the response was a good one...I told my doc. I nearly always was. After a while my doc could see that I had control and allowed and supported my decisions. Now if I need something I just go in and ask...she gives it to me.

If you feel you have a good understanding of this disease and are sure this is what you need...you could try it in small increments. Slow and steady wins this graves race. If your labs and symptoms show you need a reduction or an increase and you choose to try it...what he dosnt know wont hurt.

Also...the thing is...although you are within range but you still feel horrible..thats a sign you havnt found your sweet spot. When you do...symptoms and labs come together. When I found my sweet spot I felt really good and that dose of PTU. Its still a balancing act because if your moving towards remission that changes. The secret is to change ever so slightly to accommodate that level move.

If you do try this...I wish you good luck. I learned a lot about my levels and sweet spot by doing this...but do be careful...Big Hugs...Kathy

Thanks Laura and Kathy - truthfully I'm scared to pieces to do anything. Yet, I know things aren't right and haven't been. I agree
with Endo the levels have come up but ever so slowly and at this rate I may never reach mid level - I was briefly below mid at 1.21 after the first 4 weeks of MMI and the first labs since starting on 20 mg - I needed to hold there but instead went to 10 mg because Ft3 was still high at 4.3 and top range was 4.2 - so in my opinon barely out of range. Then on the 10 mg dumped to .81 with low range of .71 and have barely come up from there to .96. I feel sluggish, very lethargic, and have hyper/hypo symptoms that over lap so haven't a clue what I'm really feeling - sleeplessness was back last night along with the numbness and hot flashes - I just want to try to find some middle ground and just don't know how to go about doing it with the response I get from the Dr. Do I just wait it out another 5 weeks and see???

I decided that since I am not comfortable making changes on my own even though I don't feel right, its probably best to just wait some of this out and see what happens in a couple of weeks. I am at 6 wks on this dose and levels are rising even if slowly so that alone could be contributing to how I feel. Thanks for always being available to listen and sometimes that helps just to get it out there so to speak.

Have a fabulous weekend.
Cindee

Usually by 6 weeks, things won't change much (as far as getting better) if you feel worse in 2 weeks or so, get labs again if you can, see where you are, then you could definitely drop down after that. I remember dropping my dose with first endo (my levels I think were more hypo than yours) he had me on 5 which was way too much.I dropped down to 3.75,that's it....and he freaked out on me, gave me a lecture like a kid....he was too much of a control freak, he wrote me down as non-compliant (worse thing to do is tell them most of the time) I quit soon after that.I went down to 2.5 under my gp's care then found another endo,she let me go down to 1.25 no problem, so not being accurate is bull, you'd be surprised how that little bit works and a pill cutter will do the trick just fine.

Brans, thanks - so my question is - what is prompting you to reduce - are your labs stable as in no change, still low and need to raise or?
I would like mine to rise to the mid range and it appears they may get there eventually....I don't want to be in a hurry or do things I shouldn't but I do want to be proactive. I just know that from what I'm used too, I don't feel right and haven't for over a week. I don't have a standing lab order and she won't give me one when I asked so am at her mercy
of getting the orders in..... Maybe I just need to accept that only 5 months into this, ups and downs are still to be expected. I guess I don't totally understand what constitutes the med changes at that this point. It was obvious when I was dropping like a rocket, now
I guess I have to "trust" a bit which isn't easy given the first few months I felt I was way over medicated despite my complaints.

Now I'm not sure if I'm feeling hyper or hypo....ah such fun huh???
:))
Thanks much again.
Cindee

I recently had to go up to 2.5 mg from 1.25 mg of MMI. The reason was I had a dentist appointment last month (which stressed me out) and I could feel my levels changing.

So, I went and got labs done. As soon as I knew what my FT4 (especially) was, I told Doc (I had an appt with him a few days later) and just tweaked upwards slightly.

I seem to have to go up and down just slightly by 1.25 mg twice a year. It's no biggie, I just go ahead and do this and am just fine.

{{{hugs}}} :-)

Thanks MMZ, that's the info I'm looking for. For me at this point, I have to "learn" which way I'm going. I do think I'll "argue" for a standing lab maybe from my GP at least to have an avenue open for
when I'm not feeling right, like now. I guess I'm wondering if, what I'm feeling is the levels rising slightly and that is keeping things "active' if you will. I'm still curious to see how you "hold" things with the meds.
Guess time will tell....
Have a great night.
Cindee

It's been three weeks since the slight MMI changes, and believe it or not, I'm beginning to feel 'slightly' hypO.

I'm wondering if I should've tweaked to 1.875 mg instead.

We'll see. My next labs is mid December.

{{{hugs}}} :-)

Hi cindeeh,

I never had the chance to adjust my ATD's....was given RAI soon after diagnosis so I can't give you advise on that but what I can say is I'm an expert now at 'feeling' when I'm heading hypo. Like you, craving carbs is a huge indicator because it's unusual for me. I will start to crave of all things 'candy' and it will get difficult for me to swallow pills. When taking my vitamins it feels like their stuck in my throat and won't go down. I guess what I'm trying to say is "LISTEN' to your body and how you're feeling.

My favourite saying since this whole graves' thing is "listen to your body, it talks to you". Sometimes our labs just don't go hand in hand with how we're feeling. If I was now dosed by what my labs say, I'd be in big trouble. Some doc's just don't get this. My endo was dosing me by my TSH and wanting to bring it up and I was suffering tremendously. My Free T's are now in the upper range and my TSH is still suppressed and I'm fine. Don't get me wrong, labs are very very important, but we are all just so different.

This might be a good start, it's where I found my thyroid doc.

http://thyroid.about.com/cs/doctors/a/topdocs.htm

Take care xo

Thank you so much - that is the type of feedback that is so valuable as you learn how to listen to your body - its hard to decipher if you are hypo/hyper and your insight is very helpful. Again, though changing dosage now while I'm going up slightly seems a bit chancy to me since I really don't know what I'm doing so to speak. I've toy'd with the idea of 1.25 for a few days to see if I can raise the levels a bit more but am a total chicken at this point - guess its better to error on the side of caution....:))
Cindee

jjbrooks is right about not just going by labs. You have to combine both symptoms and labs. I like jjbrooks need to have my levels on the upper end of my range to feel well. Others may feel quite hyper there. Some people need to have there levels at around mid range...for me I would feel just horrible because although I am at a good place according to the docs...its just not a good place for me. I learned this by listening to my bodies responses. It took about 6 months of logging everything down on paper to see my personal pattern forming. It was very cool. If you also start doing this you too will start to see your personal pattern. These are the first steps in getting to know your disease...Big Hugs...Kathy

Exactly as jj and dairytech says. If I went by labs only instead of combo labs/symptoms, I wouldn't be in such a great spot. I was just one point away from the high side and feeling horribly. I could not wait to 'tweak' it to get back at mid range.

{{{hugs}}}

I wish I had the courage to do the tweeking. I'm just not sure for how long to lower the dose even minimally to get the levels up to more normal without freaking out the doctor...:)) Such a chicken I am.... I do know how I feel and will start keeping a more detailed journal. So if I gather up some courage and tried the 1.25 for a few days is that long enough or does it take the 4-6 weeks. At 6 weeks on the 2.5 mmi I raised only slightly from .81-.96 with my mid range at about 1.3 so still a ways to go. I do have the hypo symptoms but they come and go and new ones seem to show up - like today running the phelm was back which I have when I'm hyper too.....and still feeling sluggish but not as bad as I was on Weds....such a learning curve huh???

You guys are a major blessing. Thank you doesn't even come close.
Cindee

When I changed my dose, my tsh was too high and the FT4 was too low, I think FT3 too(or just t-3 which he ran but not all the time) He wanted to keep me at the same dose with these hypo labs, it didn't make sense, so I lowered just a bit, it still wasn't enough as I found out at next lab. He had let me go too far into hypo, then you start to feel it once you're there long enough. I was a chicken too about lowering at first, I think we all are, like going against the doctor, that's what it really is but if your labs show it and you don't feel well and they don't care, that's just not right.