Viewing 12 posts - 1 through 12 (of 12 total)
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  • mel_b
    Participant
    Post count: 2

    Just wondering if anyone can tell me how long I will need to be on ATM before having surgery. My surgeon said that because of the increased risk of blood loss during the surgery, I will need to be on medication to stabilize my numbers a bit before she can do anything. My next endo appointment isn’t for a few weeks, so I was hoping someone could offer some insight in the meantime. Thank you!

    alice1976
    Participant
    Post count: 27

    Hi there and all the best for the surgery. <img decoding=” title=”Wink” /> I was taking antithyroids and suddenly SGOT and SGPT went too high (liver enzymes which show toxic hepatitis). So my doctor decided that I have to stop antithyroids, start taking cortizon for 15 days and iodine in liquid for 10 days. After that hormones were not in range but they were just a little bit more that high normal. I had the operation and everything was OK. I hope the same for will happen for you. All the best

    Ski
    Participant
    Post count: 1569

    It can be very personal, how long you need to be on meds before surgery. Talk with the doctor about specifics ~ where do they want to see your numbers, and how long should they be stable there before the doctor is confident that you’re in the best possible state for surgery? I would GUESS (capital letters means MY OPINION) that it’d be at least a few weeks, but it could be longer if you have any trouble bringing the levels down. It will help to know the doctor’s target figures, so you can keep an eye out for them as well.

    mel_b
    Participant
    Post count: 2

    How long were you on the meds before you had the liver reaction? One of the reasons I’m not doing long-term medicine treatment is that my enzymes are already out of range, and I’m worried about doing further damage. How did your surgery go? Any info you can offer would be greatly appreciated!

    alice1976
    Participant
    Post count: 27

    I started with methimazole (correct?) on July 2008, and I had terrible eczema after 2 – 3 weeks. Then I tried PTU and I had problem with enzymes on October. At the end of October I had the operation. It did not hurt at all and I only stayed in the hospital for one night. I stayed off T4 for a week (until I had the results of the thyroid condition) and then I started T4 of 125. I finally stopped at 175!!. My only problem was that in the first six months Ft3 and Ft4 was normal to low and tsh was low. At that time I had symptoms of hypothyroidism. Suddenly my TSH went up tp 8, without changing other results of ft3 and ft4. Then I increase t4 and after that I was feeling well. Then I got pregnant, I tested TPO, TPG, TSI antibodies and all were negative. After the surgery, my eyes were back ( I had some exofthalmos) but my right lid was swallen. No (after 8 -9 months) it is much better but not completely well. I have been told that I have to wait for 18 months. All the best

    vintagegreen
    Participant
    Post count: 21

    Alice,
    how was your pregnancy? Healthy baby?

    just wondering as I’m recently diagnosed (1.5 months) and my OBGYN said that he would monitor/mange me if I got pregnant…(in the plan this year before diagnosis) and that adjustments with PTU will happen but it is not a reason to delay pregnancy. (He reviewed all my labs too.)

    then, my second endo told me that i shouldn’t get pregnant until I have the RAI or surgery and get regulated. she also told me that no OB would want to handle a patient with GD as it is a high risk pregnancy.

    Obviously, i’m not going to go out and get pregnant and endanger my health, but I am wondering who to believe. I have another appt. with another OBGYN this month (a different one) and I’ll ask her….. and my thyroid books say that pregnancy is handled differently with women who have GD, but that PTU is "safe."

    anyone’s thoughts?

    Ski
    Participant
    Post count: 1569

    It’s obviously a very personal decision, but I can tell you from being on this board for more than 10 years that many, MANY women have had successful pregnancies while taking PTU. It is definitely a high-risk category, but if you gather a good medical team (including pediatric endo), you can manage it successfully. It requires monitoring of your thyroid hormone levels, and while PTU is "safe" for pregnant women (or at least the recommended choice, between the two ATDs, for a pregnant woman), it has a certain dose threshold above which it is no longer considered safe during pregnancy, so it’s best to have your levels managed well at a low dose before you anticipate becoming pregnant.

    In a strange twist, sometimes the Graves’ symptoms abate during pregnancy, because the immune system "relaxes" in order not to attack the "foreign tissue" that is the baby. In that case, the important period is post-partum ~ make sure your levels are tested frequently, because when the immune system kicks back in, hyperthyroidism can come on like a freight train.

    Having stable levels of thyroid hormone prior to pregnancy puts you in the best possible position for a healthy pregnancy for both of you, so however you achieve that is up to you.

    I’m glad you’re asking questions, it’s important for us to realize that not all doctors have the very best information. For one doctor to tell you that "no one will want to handle you" if you get pregnant is pretty irresponsible.

    alice1976
    Participant
    Post count: 27

    My opinion is that PTU are not safe and here are my two explanations:a) What will happen if a pregnant woman has problem with liver enzymes (like I had and that was the reason that I had the thyroid surgery). At this time she may need to thyroidectomy during pregnancy so that she will avoid thyrotoxicosis. b) During pregnancy, especially at the first trimester, hormones are ‘dancing’. That means that it will be difficult for her to be regulated regarding the dose she needs. And that is a risk because too much dose may create problems to the baby.
    When I found out that I had graves, I was trying to conceive my second baby. My doctor said that I had to do the surgery for avoiding any complication and that while I was on PTU it would be safer for both me and the baby to avoid any pregnancy. I also asked my endo and the pediatric doctor of my first son. Both of them agreed with the other doctor.
    Then I was told by my Endo that surgery would be better than RAI for two reasons:It takes at least six months after RAI for being safe for pregnancy and that TED will be worst in such a case. Finally I decided to do thyroidectomy and after 4 -5 months I got pregnant.
    Now I am 18 weeks, until now everything is going perfect. Antibodies are negative and as much I know, since are negative there is no risk for neonatal graves disease. I just do lab tests for ft3, ft4 and tsh every 3-4 weeks, so that I am sure that baby has adecuate hormones.
    If you feel that I can help any more, just let me know. sorry for me english, I am greek! <img decoding=” title=”Very Happy” />

    Ski
    Participant
    Post count: 1569

    If a patient is going to have issues with liver enzymes, it usually shows up very early when treating with PTU, so you’d know that long before you were regulated and attempting pregnancy, and you’d make another choice of treatment. In addition to that, the "dancing" thyroid hormone levels are usually as a result of the antibodies NOT affecting the thyroid any more, and so usually the levels get closer to normal, not further away (necessitating higher doses). It’s more common that the patient can completely stop taking PTU during pregnancy and still keep stable, normal thyroid hormone levels.

    About the difference between RAI and surgery ~ it is recommended that you wait six months after RAI, but you’d also want to wait a period of time following thyroidectomy to be sure your levels are normal, and stable, and you’ve had a chance to heal. That could easily take six months.

    It is a VERY personal decision, and one that needs to be made carefully. But it’s possible to have a healthy pregnancy, and a beautiful baby, while taking PTU. Or after RAI. Or after surgery. We’ve seen ’em all. <img decoding=” title=”Very Happy” />

    alice1976
    Participant
    Post count: 27

    i am talking about my case. In theory, many cases may arise. Since I was asked, I just shared my true experience. And also since three doctors had the same opinion ( which in my case was correct) i have nothing else to do than trust them. All the best to everybody

    vintagegreen
    Participant
    Post count: 21

    thanks ladies, Ski and Alice.

    I’ve enjoyed the back and forth with this question. I do want to regulated, be safe and healthy, and have the most optimal situation prior to pregnancy. My husband and I are relocating and will be living together again ( I’m here in the States) and so I have the time to get treated, research more about permanent treatments before I do anything. It is such a personal decision, just beginning with the treatment. As far as I am aware, there are no complications in my labs that will cause me to choose one treatment over the next. Like everyone else, I just want to come out on the other side as normal as I can be.

    I do need to know where I can pick up my medal though.

    hyperm
    Participant
    Post count: 435

    Hi,

    Thanks for your PM – sorry not got back to it in person as yet but promise I will . In the meantime it can take different times for levels to come into range – as Ski etc.. are saying. I am going for surgery in a few weeks :o :o and it has taken 6 months for my bloods to come into range for the go ahead – even though they have went slightly off at the moment they are still within range for the op to go ahead. My endo said that looking at my bloods – the first year of my diagnosis – it would have been about 12 months before they would have considered operating.

    With regards to pregnancy – I would definitely advise you to wait until either your bloods are within range and have been for a while or after the op. I was lucky to be off PTU in my last pregnancy. Everyone has different opinions and you will find endos even have different treatment options/opinions.

    I had 2 m/c after my first little boy and now have a second very healthy boy while my GD was active. The way I look it is ..if that baby is meant to be born, you could fall off a cliff and the baby will survive. My two little ones weren’t for this world and although I have many days where I hate this disease and blame it for the loss of my little ones I believe that God is in control. The reason I say this is …if like me who has had no planned pregnancies ( lots of little surprises lol) then try not to panic either if this happens before the op.. they will take very good care of you.

    M xxx

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