[snelsen]

#1175643

Hi Jen,
As you know, the whole purpose of ATD is to keep us safe from being hyper, and achieving a euthyroid state, both by labs and how we feel.
I sure understand why you are perplexed about what to do, and which doc to use as guidance.
It is my understanding that remission is what occurs with no treatment at all, that is you would need to be off ATD’s, see what happens. Of course, that takes time, and if you become hyper again, you’d be in the same situation of needing to be treated with ATD’s.

Just a comment. Surgeons are really good at what they do, but their training is not in endocrinology, and surgeons, unlike endos, are pretty much in our lives very short term, before surgery, and after, only for post op visit related to the surgical healing. After about 4-6 weeks, you don’t see them anymore.
So I would be surprised if they have any real experience with antibodies one way or the other.

And, please ask the endo the relevance of your antibody levels. I think they are an indicator, but that is all, of your chances of remission. Kimberly wrote about that in this thread.

As you probably know, and check with your endo if you are unsure, the TSH, and T3 and or T4, plus your symptoms are the guidelines for treatment of Graves’.

I wonder if you have the time to consult with another endo for 2nd opinion.

I wonder if you would find it helpful to talk with with a pediatric endocrinologist. They are the docs who would consult with your endo after your delivery, and I think, but do not know for sure, that a neonatal, perinatologist, or peds endo, might be the doc to consult with YOUR endo during your pregnancy.

I sure wish you luck with your decision. It is even more frustrating when you consult with different doctors, and get conflicting information. Some of this happens because there are no finite answers. Some other times, there may be sincere difference of opinions, and then there is the real fact that some docs know more than others. This is a tough one because of the time element, your age your desire to start a family, and having Graves’.
Shirley

[Carito71]

#1175644

goodfriendjen,

Hello. You are welcome. We hope that with all of these information you can make the best decision for you.

As for the remission statement from your Dr., did she want you to push back the TT because she thinks you might go into remission or because of something else? Did she think that you might go into remission because as you mentioned, your thyroid #s are in range? I personally think that the TSIs being at 300 are a concern and is unknown when they will reach a normal range (I have heard that the lower and closest to 0 the better if within normal range before stopping Rx). Maybe she has seen patients whose TSIs get lower when the thyroid #s are in range. These, I believe, are things to ask your Dr. so that you can get an idea as to how he knows that you might go into remission.

I think that it is fair to say that anyone who has started responding positive to the medication “might go into remission” because it is a vague statement.

It is unfortunate to be hit with GD right at a time when you have plans that some times are harder to achieve if more time goes by (pregnancy in the 30s). I personally think that the health of the woman is very important before pregnancy can be achieved, carried for 9 months, and be there ready to take care of a new life. Your health should be your priority at this moment because once you gain your health back and are stable on it, you can proceed with a pregnancy. I know, time is of the essence. I think that you, your husband, and your Dr need to sit down and go over everything again. What does she mean by “might achieve remission”? Is there a formula she is using to know how long before then? (I doubt it). Can you wait that long? Are you willing to go through surgery, RAI? When a difficult decision is in your way, a wise man once said, take a look at yourself years from now and decide what you will be able to live with and live without.

So my question to you is, what can you live with and what can you live without when it comes to this situation? Have backup plans also because things don’t always go as planned. Get statistics and #s to make sure you know your odds.

When it comes to parenthood, there are many ways of getting there. Also, as some will tell you, pregnancy is achievable with stable GD so there is hope for parenthood one way or another …. just a thought.

Caro

P.S. The billirubin is liver related and Methimazole can some times cause liver problems. A liver panel, AST/ALT levels can show if your liver is being affected.

[Carito71]

#1175645

After reading Shirley’s comment, I would like to add one more Dr. to consult, if you haven’t yet, a Reproductive Endocrinologist (RE). A RE can tell you how things are looking with your fertility and about how long he recommends waiting. A woman’s age doesn’t always go hand in hand with her fertility.

Caro

[Carito71]

#1175646

Very interesting article Naisly. After the immune system and GD, pregnancy is another one of the things I like to read about.

[Kimberly]

#1175647

@goodfriendjen – Unfortunately, there aren’t any easy answers here, but one question for your doc might be whether she thinks the hair loss was actually a reaction to the PTU or whether it was due to your levels dropping after you started the meds. Many patients tend to experience hair loss when levels are swinging either up or down.

Take care!

[goodfriendjen]

#1175648

Thanks again, everyone! I started on the MMI in December 20, 2011 at 20 mg. I felt ok on it but gained about 10 pounds. She increased MMI to 30 mg on Feb 20th. I was on MMI until March 20th when I swited to PTU 200 mg to prepare for pregnancy… we were going to try getting pregnant on the meds at some point later in the year and I wanted to get the MMI out of my system. About a month later, I started noticing my hair falling out and really dry scalp. I had no hair loss up until this point (even prior to diagnosis/medication). I stayed on PTU until 7/9/12 when I went back to MMI 20 mg. Approximately 6 weeks later, my hair stopped falling out. It hasn’t fallen out since. I truly believe it was the PTU. It was EXTREME hair loss. I’m not sure if a lower dose would help curb hair loss or not but worry about what other side effects were occuring with it that I couldn’t see (internally).

Honestly, at this point, something in my gut is telling me to keep the TT on January 3rd. I’m not sure what. It’s funny, I’ve done nothing but try to “negotiate my way out of the TT” for the past six months. Now I have an “out” and I’m leaning toward thinking it’s the better solution. I think it’s because I just want to move on with my life and have kids and not worry that the GD will resurface one day. But I don’t know if that’s good enough reason. Will having the TT make the life I want to move on with a harder road that dealing with recurring remissions? I am so unsure…

These were my labs on 10/30:
TSH 9.69 (.35-5.5)
FT3 2.6 (2.3-4.2)
FT4 .92 (.85 – 1.72)
Thyrotropin Receptor Ab, Serum = 6.20 (0.00 – 1.75)
Thyroid Stim Immunoglobulin = 384 (0-139)

Labs on 12/1:
TSH 4.220 (.045 – 4.500)
FT$ 1.02 (.082 – 1.77)
T3 71 (71-180)

[smtucker]

#1175649

What does remission mean in regards to Graves Disease? Does this mean no drug management or something else?

[Yea, a dumb newbie question.]

[Carito71]

#1175650

This is a good article about remission:

Title:
“Remission of Graves’ disease during anti-thyroid drug therapy. Time to reconsider the mechanism?”

http://www.eje-online.org/content/155/6/783.full

Caro

[Carito71]

#1175651

goodfriendjen wrote:

I think it’s because I just want to move on with my life and have kids and not worry that the GD will resurface one day. But I don’t know if that’s good enough reason. Will having the TT make the life I want to move on with a harder road that dealing with recurring remissions? I am so unsure…

GD will always be there until there is a way to remove the autoimmune problem.

Without a thyroid you will no longer experience the hyperthyroid problems if all of the thyroid tissue is removed. If you achieved remission it doesn’t necessarily mean that you will have recurring remissions. Kimberly earlier mentioned of someone named James who has been on remission for 9 years.

All three treatments will have their pros and cons. Surgery after all is surgery and it has its risks that way (parathyroid involvement, anesthesia, recovery from surgery, etc).

If you will be able to have a family sooner than later with a TT and it is very important to you and your husband to have a family as soon as possible then wanting a TT for that reason is a good reason. If you go that route please inform yourself about what the surgery will entitle and what other GD symptoms you might still have to deal with even with a TT.

I just left an article that you might enjoy reading.

I’m wishing you all of the best making the right decision for you.

Caro

[Carito71]

#1175652

smtucker wrote:

What does remission mean in regards to Graves Disease? Does this mean no drug management or something else?

[Yea, a dumb newbie question.]

Good question. No symptoms, normal thyroid levels without medications? It might be different per Dr.?

[Kimberly]

#1175653

@smtucker – The latest medical guidance from the American Thyroid Association & American Association of Clinical Endocrinologists defines remission as being able to go at least one year or more with no medication and normal thyroid hormone levels.

That’s why they recommend antibody testing (TRAb) prior to withdrawal of anti-thyroid drugs. If the meds are withdrawn while antibodies are still raging, a recurrence of hyperthyroidism is fairly likely.

[smtucker]

#1175654

Thank you Kimberly.

Clearly I have gone through the rabbit hole and need to learn a whole new vocabulary.

Endo called and approved splitting my pill in half to take twice a day. She indicated that she rarely has a patient with nausea so she is “intrigued.”

[goodfriendjen]

#1175655

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?

[goodfriendjen]

#1175656

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.

Jen

Carito71 wrote:

goodfriendjen wrote:

I think it’s because I just want to move on with my life and have kids and not worry that the GD will resurface one day. But I don’t know if that’s good enough reason. Will having the TT make the life I want to move on with a harder road that dealing with recurring remissions? I am so unsure…

GD will always be there until there is a way to remove the autoimmune problem.

Without a thyroid you will no longer experience the hyperthyroid problems if all of the thyroid tissue is removed. If you achieved remission it doesn’t necessarily mean that you will have recurring remissions. Kimberly earlier mentioned of someone named James who has been on remission for 9 years.

All three treatments will have their pros and cons. Surgery after all is surgery and it has its risks that way (parathyroid involvement, anesthesia, recovery from surgery, etc).

If you will be able to have a family sooner than later with a TT and it is very important to you and your husband to have a family as soon as possible then wanting a TT for that reason is a good reason. If you go that route please inform yourself about what the surgery will entitle and what other GD symptoms you might still have to deal with even with a TT.

I just left an article that you might enjoy reading.

I’m wishing you all of the best making the right decision for you.

Caro

[goodfriendjen]

#1175657

Kimberly wrote:

Hello and welcome – The stats I’ve seen are 20-30% for the U.S.; 50-60% in Europe, and much higher rates for patients of Japanese origin.

Kimberly

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

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