[Harpy]

#1058911

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.

[Bobbi]

#1170853

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.

[katherinesc]

#1170854

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

[snelsen]

#1170855

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

[Harpy]

#1170856

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.

[keesephoto]

#1170857

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!

[Kimberly]

#1170858

@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.

[keesephoto]

#1170859

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.

[Darcy43]

#1170860

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!!!

[Kimberly]

#1170861

keesephoto wrote:

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(c)(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.

[Harpy]

#1170862

Thanks for the responses & I appreciate all the input.
Just like to state my position very clearly here, I do not recommend anyone go this alone on a purely herbal based & naturopathic path.
I couldn’t tally all the time I have spent scouring information with various discussion groups and reading scientific papers, articles & variety of other sources, and as Kimberly has clearly pointed out some of these sources may have recommendations that may well have dire consequences.
My position is that as much as possible anyone diagnosed with Graves, if at all possible should undertake a course of ATD’s as a first step for at least 18-24 months to get the hyperthyroid condition under control, provided they do not have complicating factors or severe alergic reactions.
My reason for this is because of all the associated symptoms, like the rage, mental fog & erratic fears that I believe makes it impossible for anyone to make a truly informed decision on Surgery or RAI, I recognise that there is also a risk with ATD’s that individuals must take into account, but this is generally for longer term use.
Once an individual has the Hyper symptoms calmed down, they are then in a better position to absorb information about the condition, and what the potential ramifications of their decisions are going forward.
There is so much more to this condition, it affects more parts of the body than the medical profession is aware of or even willing to admit that they don’t know the full story. The thyroid is just another victim of the autoimmune condition, it is not the culprit.
It is an extremely difficult disease to contend with even when you have a lot of support, so I am not downplaying the severity of the condition in the least.
But in saying that, there was one lady I spoke to, who said she just wished it would go away so she could go back to her old carefree party life, my response was, it was that life which put you here & if you are not prepared to change that, then you will be back here.
Doing all the right things, diet, exercise, stress management is all good, there are many suppliments & herbs that can support you in the process, but there will be a fundamental aspect of yourself that needs to shift for you to get through the process, that’s not to say you will be rid of Graves, but you will be in greater control. I suppose it’s a bit like letting go of the victim mentality, yes there is an appropriate time period to grieve for what you have lost, but at some point you need to let the past go and actively move forward.
This shift in attitude is essential for you to have a positive outcome, whichever path you feel is appropriate for yourself, whether that be ATD’s, Surgery or RAI.
Whether you achieve full remission, relapse or not, the Graves will always be a part of you and more than likely already was even before, you just weren’t aware of it.
I hope for positive outcomes for everyone touched by this condition and am always saddened everytime I read of another Newbie diagnosed.
Always more to say and never enough time, positive wishes to you all.

[gatorgirly]

#1170863

Hi Harpy,

I just have to disagree with you on a few points. You are entitled to your own opinion, but the two points below are just that – your opinions. They are not facts and I just want to make sure others realize that.

Quote:

My reason for this is because of all the associated symptoms, like the rage, mental fog & erratic fears that I believe makes it impossible for anyone to make a truly informed decision on Surgery or RAI…

I did not experience any of the above and I highly doubt I’m the only one. I was born with rage in my blood (also known as being a Massachusetts resident/Ma**hole), but never developed Graves rage, brain fog or any irrational fears. I made my decision to go for RAI after 12 months on ATDs while still very hyper, and that was longer than my endocrinologist wanted me to wait. Many people can and do make sound, rational and well thought-out treatment decisions while hyperthyroid.

Quote:

…her old carefree party life, my response was, it was that life which put you here & if you are not prepared to change that, then you will be back here…

Do you have any research to support that? I have never once heard from any of my specialists that an unhealthy lifestyle caused me to get Graves or that returning to an unhealthy lifestyle would cause a recurrence. I was 25 at diagnosis. I had done my fair share of “partying” in college in recent years (no, I did not even try drugs), ate junk food and went days without exercising, but that’s not why I developed Graves’ disease.

With that said, I’m glad we’re discussing things on this board instead of taking someone’s opinion as fact. I love open discussions and intellectual conversations, especially about something as personal and important to me as Graves. Glad your partner is feeling better.

-K

[Harpy]

#1170864

Thanks for that gatorgirly,
Glad to hear that you got to a good place for yourself, but many are not so lucky, even just the mere fact of being diagnosed and having to digest that, without the complications of brain fog etc. is bad enough and most need some time to absorb it.
I thought I made it clear, that it was my position, belief, opinion etc.
But then again, isn’t most everything written here and also that professed by the medical profession of much the same ilk.
You mentioned your specialists, did you question them in detail, i.e. the third degree? My experience in that in regard to Graves causes, when pressed all reverted to the convenient hereditary disposition – full stop. Bit lame IMHO. The medical profession tend to present themselves as the all knowing, but under cross examination finally admit there is still a very big question surrounding Graves causes and cures.
What is fact:
It is not a disease of the thyroid, it is an autoimmune disease where Thyroid Receptor antibodies antagonise TSH receptors in the thyroid.
TSH receptors are present throughout the body, not just the thyroid, they are found in the brain, pituiatory, bones, muscles and other places, these other receptors are just as prone to antibody stimulation as the thyroid.
The antibodies are normally present in most individuals, but in low numbers and do not manifest as a negative condition.
They increase in numbers when certain “silent” genes have their protective protein sheath removed and become active, causing an increase in production of the antibodies.
Why the above occurs, no one knows yet, but more evidence is coming to light which implicates lifestyle factors.
I don’t know how far this conversation will be allowed to go on, have a starnge feeling like admin is ready to pull the plug at any point.
There is plenty of information out there, I often see written, “don’t believe everything you read on the internet”, aren’t we conversing on the internet here?
Elaine Moore has written many books on autoimmunity and Graves, her site is a great resource, all her articles are referenced with the relevant medical studies as source data.
You do have to be discerning and do lots of reading to filter through the vast amount of opinion to get down to the facts, from which you can then form an educated opinion.
I haven’t got the relevant info infront of me, saved heaps of files & favorites etc, but just did a quick search on environmental factors & Graves triggers, will post in next post, not sure what the word limit is per post.

[Harpy]

#1170865

http://elaine-moore.suite101.com/thyroiddiseasetriggers-a516#ixzz1suQPEQt0
This article describes the known and suspected triggers of autoimmune thyroid disease. Known triggers include cigarette smoke, stress, low selenium levels, seasonal and food allergies, sex steroids particularly estrogens, excess dietary iodine, and trauma. Thyroid cells may also be injured by oxidative stress related to the immune system’s response to low antioxidant levels. Suspected environmental triggers include retroviruses, Yersinia and other enteric bacteria, and aspartame in artificial sweeteners. The immune mechanisms that contribute to disease from environmental agents include: increased cell destruction or apoptosis, thyroid autoantibody production, inflammation as white blood cells invade thyroid tissue, and the production of cytotoxic (destructive to cells) immune system chemicals known as cytokines.

http://thyroid.about.com/cs/hyperthyrdgraves/a/10things.htmhttp://thyroid.about.com/cs/hyperthyrdgraves/a/10things.htm
Graves’ disease is caused by a combination of genetic and environmental factors. Patients with GD have a certain combination of genes that make them susceptible to disease development when they’re exposed to certain environmental triggers.
According to the College of American Pathologists, stress is the major trigger for GD. Other triggers include excess iodine, estrogens, and certain chemicals, such as aspartame. Dietary iodine in excess of 150 mcg daily can trigger GD in susceptible people. The average American diet provides 300-700 mcg of iodine daily, and fast food diets provide more than 1,000 mcg of iodine daily.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180562/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180562/
While the significantly higher concordance rate for Graves disease in monozygotic twins points to a strong genetic susceptibility, the fact that the concordance rate in monozygotic twins was in fact only approximately 30% rather than 90% may point to significant environmental influences (99, 119). The most important non genetic potential risk factors contributing to the etiology of AITD, including TSHR autoimmunity, are thought to be dietary iodine intake (95, 120), smoking (121, 122), stress (123, 124), pregnancy, exposure to radiation, and infection (119, 124, 125). All of these suggest environmental triggers; however, their association with AITD requires further investigation and validation.

http://www.nevadathyroidinstitute.com/articles_generalinfo_005.htmlhttp://www.nevadathyroidinstitute.com/articles_generalinfo_005.html

https://segue.middlebury.edu/repository/viewfile/polyphony-repository___repository_id/edu.middlebury.segue.sites_repository/polyphony-repository___asset_id/1139961/polyphony-repository___record_id/1139962/polyphony-repository___file_name/Grave%20Stress.pdf
Article above about Stress & Thyroid Autoimmunity.

http://www.suite101.com/news/advances-in-graves-disease-treatment-a354210
The above link is specifically about new research for treatment possibilities with GD.

[keesephoto]

#1170866

Ok first off, my research has also linked stress/unhealthy lifestyle to auto immune disorders..including graves.

And second, I REALLY hope this isn’t deleted, I want to look at all those links!

[Author]

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