[goodfriendjen]

in reply to: Whether to have a thyroidectomy #1184719

Hi There!

Been on MMI (mostly) for almost 5 years now. The first year was difficult but that was as a result of bringing my thyroid levels back to normal after initial diagnosis (they were really, really high). Since then it’s been smooth sailing. I tried to get off meds once but in 4 weeks I was hyper again. No remission. I’ve had two pregnancies (currently 24 weeks with second) and was on PTU 110 mg during first trimester of both and then only 5 mg MMI after. With first pregnancy I was able to come off meds in third trimester and stay off for about 5 months postpartum. That was GREAT! Hyperthyroidism came back, though and I was put back on 5 mg MMI; no remissions for me. I am typically on 5 but have been stable on as low as 2.5 mg dose. I think I respond pretty well to the MMI and have always remained stable, and on 5 mg or less since I my levels got back into normal range after initial diagnosis. I’ll likely stay on the MMI as long as I can since I respond so well and haven’t had any issues with it. If I ever run into the situation where 1. I have to do something definitive, or 2. one of my daughters is diagnosed with GD, I’ll likely elect the TT – maybe we’ll do ti together! One of the top 10 endocrine surgeons is in my area and she’s amazing. The only reason I didn’t do it earlier was because I was diagnosed with GD at almost 36 years old, only 3 months after my wedding and we wanted a family. Took a year to stabilize and then we tried. Nine months to get pregnant, then M/C, then a few more months trying and we finally conceived #1 at age 37 with the help of a fertility specialist. Then #2 was conceived the month of #1’s first birthday! So I’ll be 41 when this one is born. Saying all that to say, you do what you can with what you have and make the best decisions you can at the time! Just don’t let anyone rush you into anything – stay on the drugs until you’re sure. That’s my best advice!

[goodfriendjen]

in reply to: Pregnancy with Graves #1184734

Kimberly

My endo told me there were no specific ranges for FT’s during pregnancy – is that incorrect information? If so, can you please post the ranges for FT4 and FT# (although she won’t test FT#) during pregnancy?

Thanks,
Jen

[goodfriendjen]

in reply to: Pregnancy with Graves #1184733

Hello Tranquilla

I am currently 24w4d pregnant with my second child (daughter) and have Graves. I was medicated with PTU in the first trimester and MMI in the second for both of my pregnancies. I was dx with GD at 36 years old, 3 months after getting married, so due to time being of the essence, I decided trying for children was the utmost importance after it took over a year to get my thyroid levels back in range after my initial diagnosis. RAI isn’t for me and, if I do something definitive, I’d elect for TT but my endo didn’t want me to risk losing more time getting pregnant. Saying all that to say, it’s not my ideal choice to be on Class D drugs during pregnancy but it is what it is. I have been on 100 mg PTU in first trimester and 5 mg MMI during second. With my first pregnancy I was able to come off all meds at 28 weeks and stayed off until 5 months postpartum. My daughter is 100% happy and healthy so far! I just pray daily that neither of my daughters will ever have to deal with GD and that there is a cure by then.

Anyway, thankfully there have been no complications and I hope to come off the MMI during the third trimester again this time; although I have a new endo for this pregnancy and she seems a lot more reluctant to allow that than my previous endo during my first pregnancy. GGGGGRRRRRRRR. I wish they would listen more and trust!

Happy to listen/answer any questions you might have!

[goodfriendjen]

in reply to: Remission #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

[goodfriendjen]

in reply to: Remission #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

[goodfriendjen]

in reply to: Remission #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]

in reply to: Remission #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]

in reply to: Remission #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)

[goodfriendjen]

in reply to: Remission #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.

[goodfriendjen]

in reply to: Remission #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.

[goodfriendjen]

in reply to: Remission #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]

in reply to: Remission #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?

[Author]

Posts