Hey, Guys or mostly Gals I should say.
Haven't been around for quite a while, really not much to report & been busy with other things.
I am posting for my partner.
Finally after 5+ years on PTU she has turned the corner, although her FT3 & FT4 were stabilised and in normal range for a long time, TSH was virtually non existant.
She had tests in January which returned all three in the middle of normal range, didn't want to say anything till we had a secondary confirmation, just got another set of results back, all three still in normal range, that's two tests 10 weeks apart, so I figure safe enough to say she has turned the corner finally and we can say her pituitary has finally woken up and is back into TSH production.
In addition she also had receptor AB's tested and they are just a fraction higher than normal range, but have dropped to about half of what they were about 12 months ago.
So now I expect she will go into a gradual weaning process and begin reducing PTU over the next 2 years or so and look forward to a remission attempt at that stage, she is obviously elated, as all through the process the Endo was urging her to go for surgery.
She is going through a bit of a lethargic phase, lack of core energy at the moment, and has let's say become just a bit more “cuddly”, so we are on the look out to ensure she doesn't go into the Hypo area, but I think it is probably more of a transitional process as the Antibodies start vacating various other receptor sites within the body, he disease is a lot more complex than just a simple thyroid condition.
She has also done all the lifestyle and dietary things to support this process, and if I had to pick a primary beneficial factor that would be attitude, stress reduction is all about the attitude and many personal demons must be confronted to accept that we can behave in a more appropriate way.
Will keep you posted on further developments.

Hi, Harpy: How great that your partner is finally feeling well and is encouraged by the changes in her thyroid levels.

I do hope it keeps getting better.

I hope your partner stays well!! Best of wishes.

Hi, I am happy to hear your good news. If this continues, and she moves toward remission, I am very happy for both of you. Do keep in touch, and if Graves' continues to be present in the active form of hyper or hypo, do not be discouraged, or feel that you have “failed.” You have both worked hard at this, I know.
I am compelled to say that there are a lot of people with Graves' who do have a good attitude, have tried to relieve stress, and have good attitudes, who still battle Graves' and all that it does to impact our lives. All of the attributes you mentioned, are certainly good things to have in your life, that is for sure.
But you can have them, and still be sick. I am sure you understand.
Shirley

Thanks for the responses, & will keep in touch with progress and yes, snelsen, understand entirely that the process is a bit different for everyone.
From what I have seen and read, average remission from Graves using ATD's is 4-5 years, so my partner is in that category, some achieve positive results in 1-2 years, and some in 8-10 years & there are others, whom for whatever reason do not gain positive results from using ATD's.
I tend to hold a slightly different view to many others, in that I believe that all the thyroid manifestations of Hypo, Hyper & Hashis, along with the eye disease and shin problems are all caused by the same autoimmune condition and merely present in a different mix of symptoms in different individuals. Unless the underlying autoimmune condition is addressed, then the disease will continue manifest in different ways.
What I have said to my partner & others is that once you get graves, or any other autoimmune disease, then it is yours for life, even if you achieve remission, it will always be there as a part of you, and until you actually embrace the fact, you can not truly move forward. Not to say that everyone will have a full remission, or that my partner will not have a relapse, but we will cross that bridge when we get there.
My partner sometimes gets a bit frustrated with the medical system, but from what I have seen it is not the system that is at fault, it is the population, they are the ones that the system is tailored to. Here in Australia most people go to the doctor and want a quick fix, the young pimple faced doctor says you need to change some things in your life, diet, attitude, activity etc. & the patients response is can't you just give me some pills to fix it? Two or three responses like this and the doctor gives up and just pulls out the pad, presribes half a dozen medications, then goes to the free lunch with the drug reps, and drinks a bottle of whiskey & smokes a pack of cigarettes at night for penance.
If all patients said NO, I don't want a quick fix, I want a permanent fix & I am willing to contribute fully in this partnership so that I can regain my health as much as possible, then the system would change.
I know this doesn't help those currently dealing with an inadequate system & I can't offer any more than our own experience, and that is we dedicated a good 5 years to this process so far, yes the rest of our life continued, but we both changed many things in our life, and also tackled a lot of personal demons. It's not until you actually go through the process of actually changing yourself internally that you truly understand what that means, and for everyone it is different, but your ego will fight you every step of the way.
Anyway, probably getting a bit philosophical here, I do hope someone can gleam some good from what I write.

Thank you for that Harpy. I'm at that point right now where I'm taking responsibility for my disease and accepting it as my cross to bear as well. I am also frustrated with the medical care I'm getting, but for different reasons (IE-I'm not actually getting any care, only blood tests and then waiting, no meds etc).
I've been doing research on healing the gut and am considering going to a Natural path Dr here where I live in Oklahoma if I can get the money to do so.
Your post was very encouraging, again. Thank you.

**Disclaimer to the Forum admins**
-I realize the Graves disease foundation does not recommend nor supports any other treatment than the 3 you've mentioned many times. But, being that you are NOT Drs as you've stated I do believe we as a support group alone should be able to discuss ALL options and while I know your official stance on it, I do not believe it is harmful to discuss taking care of our health and eating properly. I also do not believe it should be up to you to delete posts that speak of such things simply because you yourself do not support it. As a support group this should be a group of democracy. —And thank you for doing such a great job with this group! We really do appreciate ya'll!

@keesephoto - My preference is to *not* delete posts, except as a last resort.

However, keep in mind that the Graves' Disease and Thyroid Foundation is a well-established organization with a Board of Directors representing many aspects of the medical community. This isn't some anonymous forum where anyone can post any comment and not have to worry about repercussions.

In our society, unfortunately, the GDATF has to consider the legal ramifications if someone posted information like “Stop taking your anti-thyroid drugs and use xyz herb to cure your Graves' naturally”! A newly diagnosed patient could see this, ditch their conventional medical therapy, and could end up much, much more ill – or even dead.

Our Board's position is that the Foundation will not advocate any treatments unless they have been proven to be *effective* and proven to have an acceptable side effect profile. If a particular alternative treatment comes to light that have been shown to be both effective and safe, then we will certainly share information about that treatment option.

But in the meantime, while we will only delete posts as a last resort, we do have to be *very* careful as to the direction that the discussion takes on this board.

I understand. But there is a very fine line between protecting ppl looking for information/cures and controlling decisions ppl make (or attempting too by pressuring only certain “cures”).

And, to me, it doesn't make sense saying “Our Board's position is that the Foundation will not advocate any treatments unless they have been proven to be *effective* and proven to have an acceptable side effect profile” because if that were truly the case, there could be no treatment recommended as “safe, or a cure” simply for the reason that there IS NO cure for graves. This lasts a lifetime. Nothing is proven to cure it, and the 3 regular treatments have also not been proven as “always safe OR effective”…or even as a treatment for systematic side effects.
I think we've all seen by now that even with surgery or RAI many still suffer side effects, etc.

Having said that, I just think anything we can do to help our bodies is GOOD.

AND, I will add that I do think it is responsible of the association to protect from ads, spammers, or things that might cause ppl to stop taking all drugs immediately etc especially in certain cases, or without proper knowledge on what they are doing, consequences, without Doctors approval, etc.

But there are cases where ppl (like me) are working with what they've got and have consulted and gotten Doctor approval for going to a natural-path and trying to heal my body (in other areas and with other health problems I have) any way I can while I wait for this stupid disease to figure out which direction it wants to take. And I just think ppl like me should be able to discuss just as much as anyone discussing RAI.

Again, I'm not going against ya'll as the admin and I do respect your position…I'm just sharing my own position as it stands.

Congratulations Harpy to you and your partner. Sounds like you are definitely on the right track. Monitoring your health, along with a great positive outlook on life will definitely produce positive results. You/your partner are inspiring.

Well done and Healthy recovery!!!

keesephoto
And, to me, it doesn't make sense saying “Our Board's position is that the Foundation will not advocate any treatments unless they have been proven to be *effective* and proven to have an acceptable side effect profile” because if that were truly the case, there could be no treatment recommended as “safe, or a cure” simply for the reason that there IS NO cure for graves.

No, there is no “cure” for the autoimmune component of Graves', but there *are* effective treatments for hyperthyroidism. And all of these options do have potential risks, which is why I used the term “acceptable side effect profile.”

The National Center for Complementary and Alternative Medicine specifically looks at alternative and complementary therapies from a science-based perspective. If a specific treatment option came to light that showed some promise, our Board would certainly look at whether this option was worth recommending to patients.

But in the meantime, our Foundation is a public 501©(3) (non-profit and tax exempt) organization. Our board members have put their names out there personally as representatives of this organization, and we have to respect their position. There are other message boards and forums out there that are more of an “anything goes” policy when it comes to discussing “alternative” or “natural” treatment options.