[Gabe]

#1059948

Silly question. Does a TT cure Graves? Since you have zero thyroid and will be forever on supplemental thyroid hormone, does this mean that the Graves is gone? Or is there more to Graves than the thyroid hormone… I know it’s an autoimmune disease. And I’ve been on this forum long enough that I should know this…. Having a foggy graves-brain day.

Had my surgical consult today and scheduled for TT on May 31st. I’m excited and nervous but strangely relieved that I’m making a real decision. Very confident with surgeon. He tolerated my extreme questioning with professionalism and a little humor.

The biggest thing bothering me right now is that I cannot understand all the correlation of the labs to the level that some of you can. I’m still very confused about the relationship between T3, T4, TSH, TRab, etc. Some days I think I understand lab-language and then I’ll read some posts and I’m clueless. Too funny!

Best to all of you,
Karen

[adenure]

#1178979

Hi!

I had my TT 10 months ago. From what I understand, a TT doesn’t “cure” Graves in the sense that you don’t have it anymore. Graves is an autoimmune disorder and antibodies can’t be removed from your blood. I think that antibodies do fluctuate and that they can go down or maybe even not be there. But, I think stress can aggravate antibody fluctuations and make them worse. I haven’t had any Graves issues since my TT. I have a little bit of dry eye, but it’s not that bad. I take OTC tears/ drops (Systane) when I need them, but otherwise, I’m fine there. I take Synthroid 112 six days a week and 100 one day a week. I’ve been pretty stable on that since my 2nd month post TT.

I say go for the surgery if you’re confident in your surgeon and your doctor supports you. It really has given me my health and my life back again. I am very grateful for that.

[vanillasky]

#1178980

I don’t think a TT cures Graves’. I think Graves’ is like luggage, you keep it forever.

My endo told me the antibodies last in the blood for about 10 years after RAI or TT. Is he right? OMG!

[Gabe]

#1178981

Alexis, thanks for the info. Wishful thinking on my part. Really all I want is my general good health back and off this medication roller coaster. I guess time will tell if the Graves antibodies decide to do something evil! I’m so looking forward to my surgery, which is crazy…who looks forward to surgeries!!

Karen, thanks for the luggage comment…good laugh!

Best wishes, Karen

[npatterson]

#1178982

I would say that it is the nearest thing to a “cure” that we can get. Yes, the antibodies are still “in there”, but in essence there is nothing for them to attack. I used to describe them as confused gureilla (sp?) soldiers, and hopefully they will just go back to their tents.

What Alexis said is great: getting your life and health back is definately a plus!

Take care,

Nancy

[beach45]

#1178983

From my 3 years on a Graves journey with treatment for 2 years with antithyroid Methimazole, RAI a year ago, and now struggling to get my thryoid hormone and dosage perfect for me, I don’t think that TT or RAI is a cure.

I have consulted with many doctors regarding this along my journey, including 4 endocrinologists. One commented that you are in need to destroy a perfect healthy thyroid gland which was being attacked. Of course you can say how can it be healthy if it is malfunctioning?! Antithyroid unfortunately did not put me into remission and I won’t elaborate as that is now past.

The endocrinolgoist that I had for one year who followed me through the last months on Methimazole and saw me through RAI and a few months post, said well you are trading one problem for another and it will predispose you to other autoimmune diseases.

My thyroid eye doctor said the antibodies are active 3-5 years post RAI. I am not sure about TT yet I thought I heard not as active as long post TT. Yet we are all different. Most of my doctors, endocrinologists included, were not concerned about antibodies.

Yet if there was a cure, to me, then like the endo who commented about destroying a healthy thyroid, medical professionals would know how to stop the antibodies before the thyroid is affected.

So it is a fix to stop the production of thyroid hormone so the patient no longer has debilitating hyperthyroid symptoms such as what I experienced back starting in Spring 2010. Yet what about the underlying cause that possibly was a compromised immune system and how is that being addressed? Plus I know people who had TT or RAI and years later no more health problems as they take their thyroid hormone daily and are functioning just fine. Yet why some people have more health issues down the road even on thyroid hormone?

For me I just have to take responsbility for my health and do the best I can moving forward. I am sure there can be many different answers for this question especially from doctors. I used to ask why or how this happened yet I don’t much anymore…so for me now, I am just happy to not have Graves symptoms which were becoming very serious and that alone arresting that situation with RAI to me has already improved my health and I do the best I can now to stay healthy.

Best of luck for you on this journey!….beach

[Kimberly]

#1178984

Hello – I’ve heard doctors express conflicting opinions on this…but my 2 cents as a patient is that TT or RAI will cure your hyperthyroidism, but not your Graves’. A couple of reasons why:

1. Although eye and skin involvement *usually* occur in conjunction with hyperthyroidism, both can happen either before thyroid issues ever occur, or years after treatment.

2. The latest medical guidance on pregnancy recommends antibody testing for all women with a history of Graves’ (current *or* past) at the 20-24 week mark, with the involvement of a maternal-fetal specialist recommended if antibodies are extremely elevated, since there is increased risk of the antibodies being passed on to the fetus.

As for antibodies post-TT, the one study that I’ve seen shows a similar decline in antibodies for patients treated with anti-thyroid drugs and TT, while RAI brought a temporary spike in antibody levels:

http://www.eje-online.org/content/158/1/69.long

(Keep in mind that the numbers in the chart represent the *average* of all the patients in the study…so your mileage may vary!)

Many who choose TT or RAI go through the process, take their replacement hormone daily, and otherwise don’t really give Graves’ a second thought. But it *is* important to seek medical guidance ASAP should eye or skin symptoms develop later down the road…and for those who become pregnant, it’s critical to make sure their OB/Gyn is aware of the antibody testing guidelines.

[vanillasky]

#1178985

I have heard so many different stories so I don’t know what to think!

some say Lupus is a concern because the antibodies attack other parts of the immune system and diabetes too. Maybe it’s just the luck of the draw. Remember Forrest Gump? “Life is like a box of chocolates, you never know what you’re gonna get.”

Karen

[beach45]

#1178986

I feel the same way I’ve heard all different stories; yet I am at the point where I am just glad hyper symptoms are gone and I’m slowing getting to being balanced even with taking a long time.
I don’t worry about what may happen anymore, as for me it is what it is.

Yet I like what you say Karen what Forrest Gump said; great!

beach

[Gabe]

#1178987

Thanks all, the lack of true clinical data, especially the causes, on this disease really amazes me. I have some minor eye involvement so I’m sure I’ll still have to deal with that after the TT. I’m taking one thing at a time. First the hyperthyroid and the ATD/beta blocker medication side effects, and then I’ll deal with the next thing, if and or when it happens. This has been an interesting conversation.
Thanks! Karen

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