[Kimberly]

#1170867

Harpy wrote:

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.

I don’t mind constructive discussion, nor information from credible sources being posted. However, two of the links posted above came from patients, not physicians. I’m going to leave this up for now, but in the future, links need to come from established medical journals or associations. Participants are certainly welcome to visit other sites that are *not* governed by an active Board of Directors and have more lenient posting policies.

Also, the Foundation ran an article about the study on potential new treatment options in our Summer 2011 newsletter. Keep in mind that this is nowhere near the point where it can be made available to the public. To my knowledge, they haven’t even started human trials…and the gears tend to turn VERY slowly when it comes to getting a new drug to market. Although this research is certainly promising, this is NOT a reason for anyone to delay treatment until this new option becomes commercially available. That could be years away.

[keesephoto]

#1170868

Kimberly wrote:

Participants are certainly welcome to visit other sites that are *not* governed by an active Board of Directors and have more lenient posting policies.

When ya’ll say this I always feel like you’re saying “either do what we say or go elsewhere”. Sort of makes me feel all hitler-ish and controlling of our freedom of speech.
Anyway, if I get upset this feeling it gives me is why, now you know how it comes off to some I spose.

[Kimberly]

#1170869

The Graves’ Disease and Thyroid Foundation’s name is attached to this board, the GDATF pays for the hosting services that allow this forum to be visible and accessible to users, and its volunteers serve as facilitators. In exchange, the Foundation asks members to adhere to basic guidelines, as determined by its Board of Directors, half of whom are physicians.

Members are free to either adhere to the guidelines here or post elsewhere on other boards or forums…or even start your own forum. There are certainly advantages and disadvantages to other formats. The advantage to some of these other boards is that members have free reign to discuss any topic of choice, including unproven therapies. The disadvantage is that the information posted about these unproven therapies could potentially be coming from individuals who really just want to sell you stuff, not make you well.

The Foundation’s guidelines related to posting about alternative therapies will not change. You have to weigh the advantages and disadvantages of all the different formats and make the decision for yourself where you will choose to invest your time and energy.

[gatorgirly]

#1170870

Please, please, please – never take anything from Suite101 or About as fact or even credible opinons. Joe Schmoe can write anything he wants on those sites and call himself an author. The same goes for Wikipedia. Open content is great for certain industries, but health care/medical research is not one of them.

[Bobbi]

#1170871

From a recent poster: “It is not a disease of the thyroid, it is an autoimmune disease where Thyroid Receptor antibodies antagonise TSH receptors in the thyroid.”

This is not “fact” , which is what was suggested by the poster. Yes, Graves is caused by thyroid receptor antibodies, yada yada. But it IS a disease of the thyroid. Or, to put it another way, the thyroid IS diseased when we have Graves.

Look up the defintion of disease when applied to medical circumstances. In any dictionary.

“1. A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.”

“: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms : sickness, malady.”

Or:

“any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.”

Nowhere, in the definition of “disease” does the causative agent decide that something is, or is not diseased. So, the reasoning in the poster’s article was specious, flawed, and completely irrelevant.

When we have a diagnosis of Graves, our thyroids are, BY DEFINITION, diseased. Period. Full stop.

This does not mean that one treatment option is preferable to another, which is why I suspect some folks try to insist that our thyroids are not diseased. We have three potential treatment options that have been shown to work to control the adverse activity of our aberrant antibodies. Some of us have better results with one of the options over another.

[Kimberly]

#1170872

This is one of those issues were you could get 10 different opinions from 10 different people.

The GDATF really has one foot in two different worlds. On the one hand, we are members of the American Thyroid Association’s “Alliance for Thyroid Patient Education” (along with ThyCa and Light of Life Foundation) and we are one of the founding members of the Thyroid Federation International, a group of thyroid patient organizations from all over the world. Regardless of the cause, those of us who have conditions affecting the thyroid gland share many of the same challenges.

On the other hand, the GDATF is also an active member of the National Coalition of Autoimmune Patient Groups, which is facilitated by the American Autoimmune Related Diseases Association. The GDATF recently co-sponsored an event in Washington D.C. last month to educate congressional health aides about the social, emotional, and financial impact that autoimmune diseases have on families and communities. One of our Board members, who has several family members with different autoimmune diseases (including Graves’) was one of the featured speakers. Dr. Noel Rose, who is considered a pioneer in the field of autoimmunity, also serves on the GDATF’s Board of Directors. Dr. Rose is the director for the Autoimmune Disease Research Center at Johns Hopkins.

[Harpy]

#1170873

Bobbi
Thank you for your clarification on the definition of disease, my intention was not to mislead anyone and I will try to be more careful in the way I word things in the future.
But if we actually examine the effect, the thyroids function is to produce thyroid hormone based on the signals it recieves from the Hypothalmus via the Pituitary Gland and it’s excretion of TSH. The TSH receptors in the thyroid do not have the ability to distinguish the difference between TSH or TSH receptor antibodies, so when the antibodies take up active sites in the receptors and stimulate the thyroid to produce T4 & T3, it does so to the best of it’s capability and as it recieves more stimulation it goes even harder to produce hormones, it gets run down and may go to full burn out, but it is doing exactly what it was designed to do.
From Wikipedia, Hypothalamic–pituitary–thyroid axis
(If this is considered unreliable information I’m sure I can extract the same info from a recognised medical journal)

“The hypothalamus senses low circulating levels of thyroid hormone (T3 and T4) and responds by releasing thyrotropin-releasing hormone (TRH). The TRH stimulates the pituitary to produce thyroid-stimulating hormone (TSH). The TSH, in turn, stimulates the thyroid to produce thyroid hormone until levels in the blood return to normal. Thyroid hormone exerts negative feedback control over the hypothalamus as well as anterior pituitary, thus controlling the release of both TRH from hypothalamus and TSH from anterior pituitary gland.”

The thyroid does not have the ability to actually regulate hormone levels, it just produces them, the regulation role lies axis described above, in addition to that there are other inputs (don’t have a specific reference), as yet unidentified that these glands recieve to adjust levels further which result in the fluctuations seen in daily cycles.
So, therefore if the Thyroid is considered “diseased”, then so must be the entire axis, because the Hypothalmus & Pituitary are failing in their role of regulating thyroid hormone.

I personally feel it is more misleading by the convential medical practice to give the impression that the Hyperthyroid condition, TED, Pretibial Myxedema and the variety of other symptoms expressed in graves are unrelated effects and are treated as independant of each other.
Do any of these occur without the presence of the TSH receptor antibodies?
Are they seperate diseases or different symptoms of the same disease?
This is how I understand it, if there is a flaw in my understanding, please correct me.
I am not being facetious or sarcastic, this is a genuine comment, always on the look out for new information, I know what I know is not absolutely right and can always be improved upon.

[Harpy]

#1170874

Kimberly
Thank you for clarifying the framework for discussions on this board,
The links I put up were quick searches, so I was negligent in considering the source data and will try to be more rigorous in the future. Not sure what happened there, some of the links were corrupted in the posting process as well, so i will also go back and check the effectiveness of the links in the future also.
Re the new developements in treatments, understand this is only a potential, that may take years and may not even happen.

So if you have a thyroid condition do not withhold treatment on the basis of a “Holy Grail” cure around the corner, get treatment ASAP

I appreciate everyones patience and again reiterate that I understand and respect the position this organisation holds and as Kimberly said there is both Pro’s and Con’s no matter how you set your guidelines.

[Harpy]

#1170875

Gatorgirly
Thank you re your pointing out some dubious links as others did and I have taken that on board and will be more rigorous in the future.

You made the initial request for verifiable information regarding the impact of environmental factors on the expression of GD in genetically predisposed individuals. Most of those links were specifically in relation to that question.
As I understand it there is a significant role played by environmental conditions in the actual expression of GD, some of these factors have been identified, one of these being high levels of iodine intake, others like polutants & toxins are suspected, but more study is required and there is likely more that have not even been considered or identified.

So therefore (In my Opinion)
If it is not a case of pure genetic roulette, and environment plays a significant role in the expression of GD or not, then surely this is the area that needs to be studied as much if not more than the remedial actions of Surgery, RAI, ATD’s or new treatments. Not just in regards to prevention, but also in regards to longer term stable remission. Genetics we do not have the ability to change, but we do have the ability to modify our environment, and if we can improve our health, win:win situation for both the individual as well as the society.

[Harpy]

#1170876

keesephoto wrote:

Kimberly wrote:

Participants are certainly welcome to visit other sites that are *not* governed by an active Board of Directors and have more lenient posting policies.

When ya’ll say this I always feel like you’re saying “either do what we say or go elsewhere”. Sort of makes me feel all hitler-ish and controlling of our freedom of speech.
Anyway, if I get upset this feeling it gives me is why, now you know how it comes off to some I spose.

Maybe just a bit harsh, I do understand your frustration to a degree, but Kimberly has responded appropriately and to some degree is obligated to inform you of the state of play, there must always be a framework to work within and for whatever reasons this is the framework that we have to work with here.
As Kimberly indicated you can always go elswhere for other discussions, but like the old saying goes, “Buyer Beware”, here even though discussion is restricted to some degree, it is vetted and advice is relatively safe, elswhere you will need to maintain your own QA systems, that’s not to say everything outside this board is unreliable, just that you will have to do the filtering of information yourself.

[Bobbi]

#1170877

“So, therefore if the Thyroid is considered “diseased”, then so must be the entire axis, because the Hypothalmus & Pituitary are failing in their role of regulating thyroid hormone.”

Actually, the entire body is diseased when we are hyperthyroid. That’s where I differ from folks who insist on focussing on the antibodies. The antibody itself is not disrupting the function of the heart, the digestive system, the muscles, the bone, the pituitary, etc. The antibody is disrupting the function of the thyroid. The thyroid, in turn, is causing the disease to the rest of the body by pouring out too much hormone. And the evidence of that is that when we turn the thyroid off (either with meds or by removal) we can regain our health, living, all the while, with the pesky antibody still lurking in its corners of the body.

[Harpy]

#1170878

Bobbi wrote:

“So, therefore if the Thyroid is considered “diseased”, then so must be the entire axis, because the Hypothalmus & Pituitary are failing in their role of regulating thyroid hormone.”

Actually, the entire body is diseased when we are hyperthyroid. That’s where I differ from folks who insist on focussing on the antibodies. The antibody itself is not disrupting the function of the heart, the digestive system, the muscles, the bone, the pituitary, etc. The antibody is disrupting the function of the thyroid. The thyroid, in turn, is causing the disease to the rest of the body by pouring out too much hormone. And the evidence of that is that when we turn the thyroid off (either with meds or by removal) we can regain our health, living, all the while, with the pesky antibody still lurking in its corners of the body.

Understand, and respect that, but seeing as no one really knows the full extent of the disease, I differ again in that I feel the antibodies are affecting many other areas of the body, they are just not as obviously manifested as the Thyroid, TED & Pretibial Myxedema, but I believe the actual cause lies below the antibodies, not with the antibodies.

[Bobbi]

#1170879

What is known — to date — about antibodies is that they are tissue/protein/cell specific. I’m not a scientist so I am using lay terminology here. Antibodies to H1N1 will not keep someone from developing measles. Antibodies to measles will not keep someone from developing the flu. Antibodies which affect the myalin sheath do not cause the thyroid to overproduce hormone. Antithyroid antibodies do not attack the heart causing it to race. They attack the thyroid cells, causing them to over produce hormone, which in turn causes the heart to race.

Think of it this way, perhaps. I have a bad knee — old age creeping in. As a result, I also have back pain….from limping, from favoring the knee which in turn has thrown off the alignment of my back. I don’t need back surgery to fix that pain. I do, possibly, need knee surgery. (But I choose not to entertain that notion at the moment…) A lot of parts of the body are inter-related and respond to malfunction in another part. So, aberrant thyroid behavior does affect other body parts. But the “cure” for those other body parts is to fix the thyroid behavior.

But, other than curiosity, Harpy, what is the point of conjecture that an “actual” cause lies below the antibodies? What we have is an illness that requires effective treatment now. And effective treatment in the here and now requires that we focus on the thyroid problem,and shut down the overproduction of hormone in whatever way works best for the individual.

[Harpy]

#1170880

Seeing as we are still going on this topic, not suggesting that thyroid issue does not need to be dealt with, that is definately first priority, like first aid, but at this point really that’s basically where effective treatment stops, because that seems to be where the knowledge stops.
The TSH receptor antibodies are specific to TSH receptors, but TSH receptors are actually present in many other tissues of the body, including muscles, bone, brain, heart, and other major organs & also the pituitary gland, so the antibodies must be depositing and activating receptors all over the body as well. I stumbled on this when I was trying to understand the hormone regulation axis, it appears that the Pituitary has TSH receptors and monitors TSH levels in a closed feedback loop, these receptors are also occupied by antibodies, hence why some patients may get their hormone levels right and antibodies much improved, but still have suppressed TSH, because the Pituitary thinks TSH is already high as the antibodies have shorted out it’s feedback loop. This seems to be one of the last areas the antibodies vacate, usually when blood level AB’s are close to or even well in the normal range. Then I found some papers studying the effects of TSH receptors elswhere in the body, not thyroid related, so that raised the question of what else is going on with the AB’s that we do not know about, there seems to be a lot of fog about GD, and not just the brain fog.

As to what cause lies below the antibodies, well that is where the solution is and currently no one can tell me what that is?
I feel a bit like a 5 year old sometimes who has just asked the adults where babies come from, I keep getting all these lame answers and can’t help asking over and over, But Why?, But Why?

[James]

#1170881

I personally don’t like to get caught up in the rhetoric of, “diseased thyroid” versus, “non-diseased thyroid”, versus the entire body is diseased when aberrant antibodies are at play etc etc. We have to focus on what is practical and positive for patients especially when they are newly diagnosed. Obviously what might be a long term solution for one, might be totally different for another.

Firstly I have to agree that environmental factors DO play a role in autoimmunity. I believe Noel Rose (one of medical advisors), works extensively researching this. In my own experience I know that environment (including diet) has played a major role in my autoimmune health. Research also indicates stress definitely plays a role in our autoimmune health (or lack thereof), this was brought up a number of times at past conferences by some very credible presenters and should not be dismissed.

My experience with Graves’ (which dates back over 18 years now) may be unusual to some, but this particular thread has inspired me to check in and post. At this stage I do not dwell on the fact that we have according to some, “a permanently diseased organ”, or that remission, is “only a temporary condition”. At my stage in health it would seem rather peculiar to refer to my thyroid as diseased or hampered as it has been doing it’s intended purpose normally (and without meds) for the last almost 9 years now. All tests have come back normal and a physical exam indicates proper size and texture. I would have to say rather (at least in my circumstances) that the thyroid is a resilient structure, that can come back to health when indeed those “aberrant antibodies” are kept at bay. Did getting to this stage of health happen overnight? Absolutely not, it is a long process. YES, there is a possibility that I could relapse one day, but quite honestly, right now if feels like it is in the distant past.

I applaud all patients that have the resolve to stick to what works for them within the parameters of what is medically acceptable . . . THANKS for posting your experiences. ATD’s do buy time for many. We are living in a culture however that seems to insist on a perceived instant “cure”, take this pill and you’ll be fine etc etc. It’s too bad that it can’t be that simple.

Wishing you all well,

James

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