[QZZznne]

#1060025

Please forgive me for over-thinking but that’s what I do.

If Graves is an autoimmune disease which attacks the thyroid, why don’t we treat the autoimmune disease?

I think I have read way to much……I am second guessing everything and I have an appointment with the surgeon on the 18th of June.

Why am I doing this?

Suzzanne.

[Boomer]

#1179740

Howdy Suzzanne!

You know what? That’s a good question! While I don’t have an answer (but now very curious) I’ll say this as it might help a little with all that second-guessing (which is normal by the way):

Graves has been successfully treated for many decades now. As my Endo put it to me, as well as in my study of this disease, the treatments be they medication, RAI, or surgery, are very well-established and most often successful. Although this disease is new to us it is not new to medicine and there isn’t much, if any, guesswork involved.

As soon as I heard “auto-immune” I freaked out a bit as, well, we hear a lot about that these days in regards to HIV, AIDS, etc. Naturally I was shook up! As I began to educate myself, though, the shock subsided and things began to look and feel much more hopeful.

Spend as much time as you need to read up and maybe it would be a good idea to write down any questions you have for your doctor. In addition this site has a wealth of solid info. I would not be surprised if before too long someone will come along with an answer to your great question and clear things up for us.

In the mean time treat yourself good- eat good food, drink lots of water, and follow your doctor’s orders and I’ll do the same!

Health and happiness to you,

Boomer

[LaurelM]

#1179741

Hi Suzzanne,

Treating our immune systems would be ideal. Unfortunately, we do not have any good options to do that yet but researchers are working on it. Think about the other auto-immue diseases out there like MS, Psoriasis, Lupus, etc. They too do not yet have fabulous treatment options that fix the immune system. Many of the immune system treatments available only supress the immune system while you are taking the medication and carry serious risks. Hopefully someday…

In the meantime, we have to treat the result of the immune system dysfunction – the elevated thyroid hormone using ATDs, RAI or surgery.

I personally don’t like any of the options and wish like you that we could treat the root of the problem but I am thankful that there treatment options that will keep me from being sick from being hyper.

Take care,
Laurel

[Boomer]

#1179742

@ Laurel

You mentioned Psoriasis… I’ve suffered from Eczema for years. They *think* it is an auto-immune disorder. In the pst year, as Grave’s symptoms begin to rear their ugly heads, my Eczema has been in remission. Not a single bit of dry skin, itching, etc.

This might be a bit simplistic (I’m not a doctor nor do I play one on TV. Yet…) but I wonder if, now that my immune system has been attacking my thyroid, it stopped attacking my skin. I was SO happy to finally have relief from the itchies but in hindsight I would much rather deal with that than this Grave’s baloney.

I have no idea what I’m talking about here but it sounds good in theory. If, later on, medicine somehow confirms my theory, I’d appreciate an honorary doctorate (with full salary of course). You heard it here first folks.

Good health and love to all,

Boomer

[Talley]

#1179743

Boomer – I have had a different reaction…last year my vitiligo started to spread to my wrists (it has previously been stable), I went to my doctor because I “knew” something was going on to kick up my immune response…it was graves. However, I have the “wart from hell” under a nail that doctors have tried to get rid of for 14+ years, and it has almost disappeared…

Our immune system is a crazy thing. I have three immune diseases and hope this is it…wish there was a way to “fix” an incompetent one…maybe some day:)

[brondack]

#1179744

Boomer, I am certain that you would get an honorary doctorate – with full honorary salary !

You certainly deserve it :}

[QZZznne]

#1179745

Thanks Boomer. It’s great to be here on this board considering our circumstances!

[karenz516]

#1179746

Suzanne, I have thought the same things. I am very happy with my endo and had RAI on 12/6/12. I was pretty sick with Graves Disease to the point I was so weak I could barely stand up. I went hypo in April and, of course, feel much better than I did being hyper. When I think back to being hospitalized for two weeks and the “state” I was in, it was scary. My dad and sister had hypothyroidism and my sister suffers from rheumtoid arthritis, so I know there has to be a family history connection. I continue to read everything I can regarding diet, etc, to help the auto immune part of this disease. I never knew MS, Lupus, Leaky Gut Syndrome Diabetes, were all auto immune diseases. I can honestly say when I eat better, I feel better, working full-time and trying to manage this disease is a chore in itself, as you all well know. To have a support group such as this one to bounce ideas off of and try knew things is both comforting and helpful. I take Vitamin D3, Magnesium, Biotin, and Centrum per my endo, I was lacking the Vitamin D and Magnesium terribly to the point they were giving me Magnesium via IV in the hospital. I have totally cut out caffeine and only drink water or organic tea. I had the same bathroom issues that Boomer has kept us laughing about, but I didn’t know that it was because my body was so hyper as I was eating it digesting my food so fast…well we all know what happens after that (thanks Boomer for explaining the “walk” to us and no wonder my cholesterol numbers were so good, sheesh. My cardiologist told me that because people lose so much weight being hyper and I have to say weighing 125 lbs and back to a size 4 was awesome, the 180 bpm heart rate was not fun and was scarier than ****. My cardiologist said that people will not come back because they are so happy with the weight loss, they ignore the damage it is causing the heart. As tempting as the thought of remaining a size 4 was, the risk of dying trumped those thoughts. So I welcome any good eating ideas and continue my quest to feeling better.

[CycleColo2013]

#1179747

This was a great question, and lots of informative responses… I have always wondered the same thing. It also made me laugh, as I found myself paying honor to my catastrophe-anticipating lineage and asking myself, as I began to feel itchy, “Ok, if my immune system doesn’t have a thyroid to attack, when will the hives appear?”

I have also always wondered what kind of role stress plays. Or rather, keeping the stress in without some kind of outlet like mediation, exercise, therapy, dogs, etc.

Cheers,
Bill

[Kimberly]

#1179748

@Bill – Stress is believed to be a possible trigger for autoimmunity and has a definite impact on our overall health. At our 2011 Boston conference, we had Dr. Herbert Benson do a presentation. Dr. Benson is considered a pioneer in the field of mind-body medicine; as part of the Benson-Henry Institute for Mind Body Medicine at Mass General, he is spearheading solid research that links stress reduction with improved health outcomes. Here’s the video, if you are interested:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/watch?v=Mea202U9wgQ

By the way, saw your other post about the ride…SUPER impressive first post-surgery trek! Congrats!

[Naisly]

#1179749

QZZznne wrote:

If Graves is an autoimmune disease which attacks the thyroid, why don’t we treat the autoimmune disease?

We sort of are by using ATD’s since they have shown to lessen the antibodies which is the cause of GD.

Personally on that note, this is why I will not choose a more permanent treatment such as RAI or surgery. Because once I do either, then there is no going back and I will not have the chance for the cure. Even if it is years longer than they suspect, at least I have some hope and able to work with the disease rather than against. Understanding, learning and advocating for my own health. If I feel miserable some days, that’s ok – There is light at the end of the tunnel.

Quote:

Nevertheless, thanks to a group of outstanding physician-investigators able to integrate the laboratory with the bedside, we sense that exciting changes in the management of Graves’ disease are at hand. Currently, for instance, there are several molecular target therapies under development that will significantly alter the clinical management of the disease within the next few years.

Quote From:
http://www.hindawi.com/journals/jtr/2012/809231/

[karenz516]

#1179750

@Naisly

I have a question, has your heart rate every been 180 bpm? Have you gotten swollen calves and feet? Do you have eye issues? Do you suffer from tremors that you can barely write or hold a cup of tea? Do you sleep most of the time and can barely move? Do you ever suffer from barely making it to the bathroom due to hyper digesting issues? I ask these questions because I wonder how you deal with the hyper symptoms on a daily basis? Do you work full-time and have a family?

Just curious,

Karen

[QZZznne]

#1179751

Karen – So glad to hear you are doing well

[QZZznne]

#1179752

Naisley – Intersting perspective. Thanks for sharing.

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