Glad you started your own thread :)

I'm not sure if you saw this link I shared on here but, in case you didn't:

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."

In looking at your November labs, it's clear that your FT4 level was nearing the upper level of normal so your dose should NOT have been increased. I suspect your endo was confused (as many are) by your TSH but was obviously ignoring the treatment guidelines that says TSH should not be used to monitor the effects of therapy.

The reason some people recommend taking a few days off is to allow the FT4/FT3 levels to increase a little.

I'd rather see you taking 7.5mg for 2-3 wks. tops and then get new labs. I suspect you might need another dose reduction then.

Most people go into remission after taking meds for 2 -4 years. It took me 27 months.

Endo Alan Rubin, author of "Thyroid for Dummies" confirms that ATD's can be taken for life, if necessary.

It never ceases to amaze me how US endos push RAI. RAI doesn't even address the autoimmune aspect of our disease. In fact, it makes things worse.

It was because of the results of the large study linked below that my 3rd endo pushed surgery:

http://www.ncbi.nlm.nih.gov/pubmed/17374710

Truly, there's no need to remove the thyroid which is the victim of an antibody attack. It makes a lot more sense to try to heal the immune system.

I was diagnosed in 2007 and I have no intention of having RAI.

I know my body pretty well. My Graves Disease is not a constant, progressive disease; it has flares, usually during periods of high stress. This makes medicating it rather dicey, as I tend to go from too high to too low on meds, but it also means that when I've gotten my levels under control, I've been able to go off of meds for periods of time (even years at a time) with my levels staying low, as long as I avoid situations which cause "flares".

However, once I get RAI, I will be dependent upon thyroid replacement meds the rest of my life, and most people I know who've had RAI seem to regret it and have even worse physical problems, and it takes a long time to find the right meds.

I'm having problems now, but it's very possible they're from another autoimmune issue and not the Graves'. I couldn't imagine how bad I'd be feeling or how much worse it would be if I added chronically low thyroid levels to the mix.

I've been too low from aggressive medicating before, and my experience has been that it takes me *much* longer to bounce back from being too low, than it does to get high levels under control.

Thank you for replying. I really appreciate your input.
I am so glad I found you all! Since Fridays Dr appt I took 5mgMMI for 2 days then none for 2 days. Today I feel my heart rate has increased so kind of nervous and tomorrow I will start on the 7.5 mg.
I had to convince my endo to do labs in one month. She didn't want to do them and said just take 7.5 for 4 weeks and then increase to 10mg. See her in 3 months! What point is that?
As my TSH is coming up now, when would I know if I could be close to remission?
Thank you all!

Glad you'll be on a steady dose of 7.5mg and get labs in 4 wks.

It's when TSH reaches .3 *and* the FT4 level has been maintained near the high end of the range that remission might be imminent.

The "return" of TSH when the patient is driven hypo doesn't count - sorry.

Slow and steady wins the race so, with you pressuring the endo for reasonable dose reductions (increases are rarely necessary) and getting labs every 4 wks., you stand a chance of winning the race.

Hi CD, I had labs done last week after 4 weeks on 7.5mg MM.
They are still hypo but within the "normal" range.
FT4 1.0 (0.8-1.5)
FT3 2.8 (2.2-4.0)
TSH 0.490 (.35-5.0)

I am wondering what you all would suggest I do. I am sure I need to lower the dose but to what? How drastic of a switch is possible?
In this month of dosing my arthritis has gotten MUCH worse and I have gained 10 more pounds. I am the heaviest I have ever been right now.
I feel that Hyperthyroid was much better for me! As I lost weight and looked really good. Of course the diarrhea and rapid heart rate was not fun but hypo has too many disheartening painful issues.

thank you for your help again.

Sorry to hear of your latest issues. Hypohell is no fun.

The next dose size down is either 6.25mg or 5mg.....the higher dose would apply if your FT4 level was higher in the range.

Since your FT4 level is still below mid-range, I suggest going down to 5mg **and be sure to divide the dose into 2/day.....2.5 in the AM and 2.5 in the PM (around 12 hours apart).**

You'll definitely want to continue getting labs every 4 wks. to stay on top of things.

Best of luck to you moving forward.

Thank you cd, I think I will go to 5mm . My Dr. Recommends staying on the 7.5. A month ago she said do 7.5 for 4 weeks then increase to 10. No labs til May. I can't imagine what that would do to my body. I feel terrible right now. It's her fault for overdosing me in Nov-Feb.

Do you have a reliable article on diet advice for Hyper? Although, now I am hypo so do I now follow hypo diet advice?? I was doing research online and there is conflicting advice. One says eat soy, green veggies, another says don't eat soy or broccoli. I started on a protein shake diet by Arbonne. After 3 days I read the ingredients (I know, not wise) it contains iodine, sodium, kale, and soy. All of which I think I am to avoid. Is juicing a better way to go?
Thank you for your advice, I REALLY appreciate!
Have a great day
Mary

Hey Rabie...
Sorry you are dealing with all of that. I hear you- I was terribly hypo this winter. I also agree, I'd take hyper any day over hypo....

I would listen to CD- she's helped me out tons.

As for your diet- I also was just researching it. I would find contradictions all over the place- hard to find out really what I should and shouldn't eat. I actually just messaged Elaine about diet and goitrogens- I assume she will get back to me soon- she always does. I will post the information she gives me once I hear back. She will certainly help...

Take care of yourself. You will feel better soon!!! Hang in there!!!

Also, just my opinion, take it for what it's worth, I don't think I would eat those shakes. Is there a reason why you are needing protein shakes? Or do you just like them?

Hi Courage, thanks for the courage! haha.
I have gained 30 pounds since being diagnosed with Graves disease. I am the heaviest now than I have ever been. My sister in law sells Arbonne. She suggested this shake and other things. She sells it at cost so is not trying to make money on me just wants to help. So I am trying to cut down on the junk I eat and thought this breakfast shake would help instead of a muffin or cereal which is usually my choice.
But then noticed the ingredients and I am not sure its good for me. I went to research soy and sodium, iodine and it just gets more confusing.
thanks for understanding, Yes! please let me know what Elaine says. I appreciate the help.
My name is Mary!

Hey Mary- heard back from Elaine...

Many people get confused about goitrogens and some of the boards have incorrect information. Goitrogens are foods containing phytochemicals with anti-thyroid drug properties. Chemical ATDs were developed after these plant effects were recognized. Brassica vegetables are some of the most common goitrogens but many other foods have goitrogenic properties. Goitrogen does not mean "causing goiter," although I've seen this stated on several boards. I have the original 1940s research on goitrogens and it means "reducing thyroid hormone production." About 1.5 cups of raw goitrogens will lower thyroid hormone levels. Cooked goitrogens still have these properties but they're more pronounced in raw foods.

My name is Colleen.... I'll write more in a while- my son just woke up- got to go!

Hi Colleen, thanks but I am still confused. Are we to avoid goitrogen foods or are they good for us!
And if my levels are now in the lower part of normal do I eat less or more of these?
Thanks so much!

Sorry, Mary, for my delay!!!

Ok- first off, I'm currently off my meds and testing for remission. I was over-medicated and went hypo- I have a feeling I may be a bit hypo still but I won't know for sure til my next labs- in a few weeks. I also still had some questions and needed clarification. Elaine got back to me-
"You might want to avoid goitrogens for a week or two until your levels rise. By avoid, I don't mean completely eliminate but eat less than usual. A handful of almonds daily won't hurt. Cooking goitrogens reduces their properties. "
Overall, I'm a pretty healthy eater. I've been eating many veggies lately, mostly because they are supposed to help heal immune systems- which ours is currently healing. I've been cooking- roasting actually- my green veggies. I also have been using almond meal for substitutions of flour but I've cut back on them. I find myself eating many nuts and seeds- trying to not go crazy with the almonds.

Goitrogens are a class of foods that can actually lower thyroid hormone levels when eaten in sufficient quantities.

So, if we are hypo, we certainly don't want our already-too-low levels to drop any lower. Avoiding goitrogens makes sense at times such as these.

I joined the 20% of Graves' patients who go hypo after remission and I am now taking thyroid hormone replacement.

There is no way I could eat a handful of almonds each day and feel well (even though I *love* almonds)....they are just too powerful as a goitrogen for me.

I learned this the hard way.....after eating a small handful of almonds for about 3 days in a row, I felt like my batteries were losing power.

So, I "rough it" with cashews.

Never underestimate the power of the food we eat. When I was hyper and trying to gain control I paid very close attention to my diet. I kept a log on my symptoms vs meds vs diet vs levels. When I introduced uncooked goitrogens into my diet...it made a difference of 2 whole points...my ranges are much wider than most. I was very impressed. When I was forced hypo due to being over medicated...taking goitrogens out of my diet also made a big difference.

Now that I am firmly in remission I can eat what ever I want as long as it is in moderation...if I feel something is causing me to spike...and I can feel it...I avoid it all together.

If stress is a trigger...its my #1 trigger...get some Vit B complex 50. That along with stress busting activities helped me tremendously. As time went on I learned how to talk myself down from stress...now I know immediately when my stress levels start to climb and I can nip it in the bud. For me...it all boils down to perception of a situation...I learned there are many ways to look at things and I took my need to control out of the scenario...Big Hugs...Kathy