[goodfriendjen]

#1059550

How likely is it to go into remission? What is the percentage rate after using ATD’s? Also, how likely is it to stay in remission once achieved. My doc told me today that, after a year on methimazole, it appears that it looks like I might go into remission and that I should push back my TT which is scheduled for Jan. 3rd. I want to know how likely it is I’ll achieve this. All my numbers are in range and she just lowered me to 5 mg methimazole from 10 mg.

Thanks,
Jen

[Kimberly]

#1175629

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.

It’s difficult to predict what will happen with any given patient. We have members here who have relapsed after a period of remission…and one facilitator (James) who is in a 9+ year period of remission following 3 rounds of anti-thyroid drugs.

Wishing you all the best as you make this decision!

[goodfriendjen]

#1175630

Is it fairly safe, then, to assume that remission won’t last forever? That’s it’s likely the GD will return even if I do achieve remission?

I wonder why it’s so much higher in Europe/Japan. Any ideas?

[Carito71]

#1175631

Hello.

You might find this link interesting:

http://www.gdatf.org/forum/topic/43092/

You stated:

goodfriendjen wrote:

All my numbers are in range and she just lowered me to 5 mg methimazole from 10 mg.

Does this include your TSI #s.

Also, if I understand it correctly, the 20-30% for the US is with a 2 years treatment and the 50-60% for Europe is with a 5 years treatment. So maybe it is related to the amount of time the person is on treatment (maybe time allows the TSIs to get lower). The Japanese study, for what my Dr. mentioned, appears to be higher maybe because of genetic reasons.

Before discontinuing the Methimazole, I think that it is wise to find out what the TSIs are. My Dr. told me that with TSIs still elevated that it didn’t matter if the thyroid hormone #s were in range because the TSIs would continue to elevate them.

I hope that this information helps.

Caro

[Kimberly]

#1175632

@goodfriendjen – I have actually not seen specific stats on recurrence of Graves’ after remission.

If you do decide to continue with the anti-thyroid drugs, as Caro mentioned, antibody testing can provide some assistance in predicting remission…but this isn’t a perfect correlation.

I know that this is a difficult choice, so I wish I had more concrete info for you…but there is just so much out there that is *not* well known about Graves’.

[Carito71]

#1175633

It is good though that your Dr. thinks that you might be on the road to remission. That is really good news.

[goodfriendjen]

#1175634

The last time I had my TSI’s measured it was Oct 30th and they were still in the 300’s. My TRAb was 6. So the antibodies are still elevated.

[goodfriendjen]

#1175635

I’m turning 37 on Dec. 26th. I was diagnosed two months after getting married last year in Nov. 2011 (married 9-4-11). I want to have children. Our plan was to get the TT on Jan 3rd and then try for a family. Now I’m so torn. I don’t know if I should hope for remission and risk valuable time (eggs are getting older) or do the TT and always wonder if I could have achieved remission.

I forgot to mention, I was allergic (lost major amount of hair) to PTU, the only drug you should be on while ttc/in first trimester.

[Carito71]

#1175636

goodfriendjen,

Since you mentioned pregnancy, I thought that you might be interested in this article:

http://www.thyroid.org/wp-content/uploads/patients/brochures/Thyroid_Dis_Pregnancy_broch.pdf

Caro

[Carito71]

#1175637

goodfriendjen wrote:

The last time I had my TSI’s measured it was Oct 30th and they were still in the 300’s. My TRAb was 6. So the antibodies are still elevated.

In this case I would be worried about stopping treatment. I wonder how your Dr. defines “remission”.

[snelsen]

#1175638

Hmmm. I am really reflecting your own thoughts about this issue, and wanting to plan a family. And moving forward with a TT is the fastest way to get to your goal of pregnancy.

Since time is a factor, it seems to be a pretty big gamble to hope you go into remission. Also, remission is generally not permanent, simply by the definition of the word, and by the relative small number of people who do attain a state of remission.
You may have read from the people on the forum who were planning a pregnancy, and their decisions.
The fact that you cannot take PTU (in the event you are hyperthyroid when pregnant) is another variable that you need to consider. Being hyper is dangerous for you and baby.

You are from an area with good surgeons who have experience with TT’s, that is for sure.
If you decide to have one, there are excellent posts about pre-op,post-0p experiences, and several from people who stayed on the forum to say that they were pregnant, and how long it was after TT. It is good to get regulated on thyroid hormone replacement, so you are in a healthy place for pregnancy.
Shirley

[Naisly]

#1175639

Welcome,

Just the opposite of what Shirley had said, there are plenty of others on this forum who have had successful pregnancy’s while on PTU.

But I do suggest you read a lot about it here’s a link to get you started:
http://www.eje-online.org/content/160/1/1.full?sid=06d8f1bc-d3f2-48de-ba65-ce8b445598b8
This is probably why your endo pushed back your TT. It is very good news that you might be on your way to remission in deed.
But educate yourself, take notes and bring them with you the next time you see your endo. So you are sure of your treatment option.

~Naisly

[LaurelM]

#1175640

Hi Jen,

Wanting to try for a pregnancy soon is a complicating factor. You have already thought about some of the important issues such as what will get you ready the soonest and that you had a reaction to the PTU (the preferred 1st trimester ATD).

Something else to think about is postpartum. A common time for GD to flare is in the 12 months after giving birth. That is what happened to me after our first child. On was on Methimazole for several months until I became pregnant with out 2nd and was switched to PTU. Because I was nursing, they wanted to monitor our daughter’s thyroid levels which meant regular heal sticks. Everything was always fine and the big benefits of continued nursing outweighed the very, very small risk of too much of my medication affecting our daughter.

Oddly enough, the 2nd pregnancy put me in remission which unexpectedly lasted about 6 years. But, I was worried about relapsing again during the whole pregnancy and while I was nursing. I don’t recommend having a baby and being sick if it can be avoided. (There will be plenty of sleep deprivation from just the baby.) That first year after our first daughter was born was incredibly harder than it should have been. The mind fog and fatigue robbed us of time and memories that should have been savored and enjoyed. I feel very lucky that the second pregnancy and postpartum went so well.

Best wishes for this very difficult decision,

Laurel

[snelsen]

#1175641

Hi Naisly,
It was my understanding that Jen cannot take PTU because of the allergic reaction she said she had to PTU. Perhaps I misunderstood. Sounds like she was switched from PTU to MMI because of this. She can tell us. Jen, were our on PTU first?

This is what she said:

“I forgot to mention, I was allergic (lost major amount of hair) to PTU, the only drug you should be on while PTU/in first trimester.”

Shirley

[goodfriendjen]

#1175642

Wow, everyone! Thank you so much for the thoughts. They really mean a lot to me as I’m struggling SO VERY MUCH with this decision. To clarify, my Endo didn’t say I was in remission, she said it “looks like you might to into remission” – she wrote this on the note emailed to me with my lab results. She recommended I push back my surgery date.

My surgeon (and Endocrine Surgeon who does 500+ TT’s per year and is AMAZING) told me that after TT the Graves antibodies will wash out of my system. My endo said this isn’t always the case. I’m not sure what to believe anymore.

Yes, to reiterate, I lost massive amounts of hair on PTU (about 1/3 of my hair in about 3 months). Not sure what damage it did to my other organs although, at the time, my live was fine. On 11/13 my bullirubin (spell?) was elevated and I’m retesting that on 12/13 – my PCP thinks it’s the methimazole. I was on 10 mg then.

Any other thoughts/suggestions are greatly appreciated. I’m seriously so torn. My family is coming to TX from NY for my surgery and I don’t know what to do.

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