[Naisly]

#1175658

goodfriendjen
Fact 1: Antibodies pass through from the mother to the baby – So no matter the treatment option, it’s important to have very few antibodies.

Fact 2: Just because your thyroid is gone, doesn’t mean you won’t have antibodies. Basicaly your fighting the antibodies, not necessarily the thyroid.

Ref: The article I posted.

Quote:

Surgical thyroidectomy of patients with Graves’ hyperthyroidism does not lead to immediate remission of the autoimmune abnormality, and the combination thyroidectomy+withdrawal of antithyroid medication+l-T4 replacement of the mother involves a high risk of foetal hyperthyroidism.

So basically my take on it is, since your endo believes your ‘close’ to remission at this time, then by all accounts if you want to get pregnant right away, then continuing on this path with ATD’s will probably be faster than a TT. Just my 2 cents.

~Naisly

[Carito71]

#1175659

goodfriendjen wrote:

Caro, you wrote: Without a thyroid you will no longer experience the hyperthyroid problems if all of the thyroid tissue is removed.

Does anyone know what the chances are that they won’t remove it all? Even if there is a little tiny bit left around the parathyroids/vocal cords, will that wreak havoc on my levels?

Hello again,

Some times only a partial removal of the thyroid is done. It is also my understanding that a TT doesn’t mean total removal of all tissue b/c like you mentioned, there might still be some left around the parathyroids. I don’t know if they can ever really remove all of it around the parathyroids. Your surgeon will have to confirm that for you. Also, it is my understanding that thyroid tissue can be in other organs as well, such as the ovaries. Now, how bad it can get with a TT if some of the left over tissue is activated, I guess that will depend on the person and amount of antibodies. It is my understanding that there is no telling how anyone will react until they have gone through it. I would recommend asking your surgeon how much thyroid tissue is left and asking your Endo what are your odds of getting hyperthyroid from it again. I personally would want to know why she wants you to push back the TT. What is her reasoning for doing that?

goodfriendjen wrote:

What other GD symptoms would I have to deal with even with a TT? Can you please let me know. I was under the impression I would be dealing with hypo symptoms. Perhaps there is something I don’t know.

As Naisly explained, some antibodies still remain (and your body might continue making more) so you might be fighting the antibodies, which affect other organs (the eyes and skin is what we know of), not just the thyroid. This doesn’t mean that you will get any of those other problems but there is chance that all of us might get them. If the theory of being euthyroid leading to a healthier immune system and to less antibodies is true (I personally think it is, it makes sense that less stress on the immune system will help it heal), with a TT or with Methimazole your goal should be to remain euthyroid. Now, with Methimazole you are getting there now, per what your Dr. mentioned to you about remission. With a TT you will have to take into consideration that you will need time to heal from the surgery and time to adjust to the thyroid hormone Rx (you will need thyroid hormones b/c you will no longer have a thyroid).

It would be a good idea to read the experiences of other members who have gone through a thyroidectomy (recent and from years back) if you are thinking about going that route. Also, at this point, since your goal is to get pregnant, I would recommend thinking about how any decision will affect not only your health but also that of the fetus/baby. It is a hard decision to make, I’ve been there. Therefore, I recommend finding out what your fertility clock is doing as well in order to see what your real time frame is when it comes to getting pregnant.

Wishing you the best with your decision.

Caro

Editing was done to correct “he” with “she”. I keep forgetting that your Dr is female.

[snelsen]

#1175660

goodfriendjen wrote:

Caro, you wrote: Without a thyroid you will no longer experience the hyperthyroid problems if all of the thyroid tissue is removed.

Does anyone know what the chances are that they won’t remove it all? Even if there is a little tiny bit left around the parathyroids/vocal cords, will that wreak havoc on my levels?

Hi Jen, PREVIOUSLY, it was the practice to removed most of the thyroid gland, and leave a little piece of it, on the premise that the smaller gland would produce the right amount of thyroxin, or almost the right amount, but not much chance of being hyper. This was done for a long time. The plan was that after the sub total thyroidectomy, that you would be euthyroid (just right, needing no replacement.)
This is what I had, and all was great, with no thyroid replacement, for about 30 years. When I reached menopause, I became tired, sluggish, and was hyPO, and since then I have taken Synthroid.
The amount of thyroid to leave, is just an educated guess. When they began RAI, it was kind of the same thing.

Then, the thinking changed completely, and the goal now is to completely destroy the thyroid (or remove it) because the thinking is that managing the thyroid supplement would be easier, for you would not have to try to balance it with the amount of thyroid hormone the person was producing on his/her own. THe docs feel it is easier to manage with no thyroid hormone production by us. However, I really liked that I was euthyroid for over 30 years.

My own thought is, that it is easy to manage either way. You go by the labs and how you feel. But the current thinking is that it is easier to know that we are not producing any thyroid hormone, and that is fine .
Shirley

[goodfriendjen]

#1175661

You guys are awesome! Thanks for the information. I have an appt on Monday at 10:00 am to see my Endocrinologist (who I really do like) and ask her some of these questions. My husband is going with me. We’ll see what she thinks. I think the thing I’m most concerned about is the article that seems to state that TT + w/d of ATDs + introduction of T4 = potential increase of thyroid antibodies. I do not want that. However, my major concern is going out of remission (should I achieve it) after birth which seems to be highly likely. That’s one reason I’m leaning more toward the TT.

Thanks so much to you all! Any other comments are greatly appreciated!

Jen

[Kimberly]

#1175662

goodfriendjen wrote:

Does the remission rates take into account the fact that, in the US, we are pushed to do RAI (for the most part) pretty early on in the diagnosis? Meaning, are rates higher in Europe and Japan because they allow for time to go into remission? I just wondered if that was taken into account when considering these statistics.
Jen

Hello – Yes, I believe the higher rates noted in Europe are for longer-term therapy on anti-thyroid drugs. However, the U.S.-based recommendation of 12-18 months on ATDs is based on a compilation of several other studies indicating that increased amount of time on ATDs may not increase the chances of remission. (This piece is very technical, but you can jump to the “evidence-based recommendations” at the end):

(Note on links: if you click directly on the following links, 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.eje-online.org/content/153/4/489.full.pdf

As for antibody activity following thyroidectomy, the biggest concern would be having antibodies pass on to an unborn child. The latest guidance from the American Thyroid Association recommends testing all pregnant women with a history of Graves’ disease for antibodies at the 20-24 week mark, regardless of the treatment option they chose. Having the antibodies pass on to the fetus is *not* common, but is something that needs to be identified ASAP if it does occur. (See recommendation #32 on this link):

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2011.0087.pdf

As Shirley mentioned, subtotal thyroidectomy is generally no longer performed for Graves’, due to concerns about recurrence. However, it’s actually common for tiny bits of tissue to be left behind after a total thyroidectomy, in order to keep from damaging the surrounding structures. Some docs prefer the term “near-total”. Here’s some info from the American Association of Endocrine Surgeons on thyroidectomy:

http://endocrinediseases.org/thyroid/surgery.shtml

Obviously, you are getting plenty of folks here sharing information and experiences, but the bottom line is that you need to do your own research (from credible sources, of course), get advice from your endo an an endocrine surgeon, and then make the decision that is right for *you* and your future family planning. Take care!

[Kimberly]

#1175663

Also, keep in mind that the article you mentioned above was specific to women needing treatment *while* pregnant, rather than women who were *planning* a future pregnancy.

Obviously, this is important info to discuss with your endo and your potential surgeon, but keep in mind that the results might be specific to women who were pregnant at the time of surgery.

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