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I took my wife to ER a week ago because of rapid heart beat, aches, shakiness, and other symptons. She is 29 yrs old. Thyroid levels where off the charts. Sent her to take a scan of thyroid where she was diagnosed with Graves. Appt with endo tomarrow. Any pointers or tips for me? We have never heard of graves befor today and just what we have read on the web. Any tips or suggestions we or i can get as a husband would be greatly appriciated. Thanks, Tim
Hello and welcome – I’m sorry that you are dealing with this, but thank you for being a great advocate for your wife…not all patients have a good family support system, so it’s great that you are so involved in researching this condition!
Graves’ is an autoimmune disease, where the body’s own immune system launches an attack on healthy tissues. The primary targets are the TSH receptors on the thyroid gland (which causes hyperthyroidism), sometimes the muscles and soft tissues behind the eyes, and (much more rarely) the skin on the shin. The current theory is that certain individuals are genetically predisposed to getting an autoimmune disease — and then some “trigger” actually activates the disease. The trigger might be stress, a viral illness, something in the environment, or physical trauma. And it’s not at all understood why this trigger might bring about different autoimmune diseases in different people – Graves’ in one person, Lupus in another, and Rheumatoid Arthritis in still another, etc.. Although there is currently no cure for autoimmunity, there are three treatment options for the hyperthyroidism due to Graves’: Radioactive iodine to destroy the thyroid gland, anti-thyroid drugs to block production of excess thyroid hormone, and surgery to remove the thyroid gland.
All three have risks and benefits, so it’s good to go into the appointment understanding your options. A great place to start is the “Treatment Options” section in the announcements section at the top of the forum, which has two good links that go through the pros and cons of each option.
We also have quite a bit of free video content on our YouTube channel:
(Note on links: if you click directly on the following link, 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.youtube.com/user/gravesandthyroid
A couple of good introductory videos are:
Dr. Terry Smith – Graves’ Disease: An Overview
Dr. Noel Rose – Introduction to AutoimmunityI hope that this is helpful – wishing you and your wife all the best!
Thank you very much kimberly. The endo appt went good. Doctor was very clear on the 3 choices of a treatment. Though we still need more time to think about it we are leaning towards radioactive iodine. We want to start a family and the endo agreed that this would be the fastest treatment. Is that correct? If so how long after the Iodine will the levels be back to normal? Endo started my wife on methimazole and she needs to return in 4 weeks after which they will run blood test again to check levels. Any bad side affects from methimazole? I feel very lucky that we caught this diease early. Even the endocrinologist was surprised. I took my wife to ER because of rapid heart beat and other symptons and in less then 2 weeks she was diagnosed with graves. So I am glad we caught it early. Thanks again
TimBriefly, cause I have to be at Children’s Hospital at 0530 tomorrow am, and that is NOT my early morning style!
You are new to, you and your wife have time to think about things. Nothing is tomorrow or next week/month urgent.
As a PATIENT, not a professional, and there are folks on this board who have been in the same position you are in right now, I suggest to you that I disagree with the endo saying that RAI is the quickest way to move toward your goal of planning to have get pregnant and have a child. I suggest you use the search engine, plug in pregnancy, see what pops up. Having a thyroidectomy probably meets your goal of getting this all settled, and moving toward planning for a family. After RAI, it takes much longer to know where you are with your thyroid hormone status, and to being with replacement. After TT, it is much more definitive. I suggest you ask these questions to your endo, and I suggest you get a 2nd opinion on this subject, and also consult with a high risk neonatologist sometime and get their thoughts on this matter.In the meantime, good for you for getting on this right away, and even more great that you have a diagnosis. Being hyper is hell, as your wife ( and you probably know) is hell. She will feel better, and after a period of time, you will move ahead to a normal life. Really. Glad you found THIS site. There is a lot of crap on the internet.
Shirley, good night now. and welcomeShirley, Im am glad to say my wife and I have not had to deal with the “graves rage” i have read so much about. We did ask the endo about having the thyroid removed and her response was that it would take longer to adjust to hormone treatment. Also she warned us that having the thyroid removed is permanant, would leave a scar and will take time to get the correct hormone replacement meds correct. She did say it was a option but she and we agreed that trying somthing less permanat first would be better. I agree with you that we should take time and consider all our options and not rush into things. I mean who knows maybe my wife will respond well to the medication and not need any further action. Thanks again. Tim
Hello – Obviously, we are patients here, not docs, but I have never heard an endo say that patients get stabilized faster after RAI versus surgery! It takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once hypothyroidism sets in, *then* you start the process of trying to find the right dose of replacement hormone. The doc will first make his/her best estimate at what the initial dosage of replacement hormone should be, based on factors such as weight and age. Then you need a follow up set of labs in 4-6 weeks to determine if that is the correct dose. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals either hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.
With surgery, you go through the same process – except that you start on replacement hormone right away, so you don’t have that 6-18 week waiting period.
Also, I’m not sure if your wife’s endo was implying that RAI isn’t permanent, because it *is* permanent. The current practice is to give a “fully ablative dose” of radiation – meaning enough to fully kill off the thyroid gland’s function. For patients who were treated several years ago, docs used to try to give just the right dose of RAI that would kill off *part* of the thyroid but not all of it. The theory was that if you destroyed just the right amount of thyroid tissue, that the patient would end up euthyroid (normal) and wouldn’t have to take *any* meds. However, the recurrence rate in these patients was fairly high, so docs today prefer the “fully ablative” dose.
As for anti-thyroid drugs, Mild side effects with Anti-Thyroid Drugs (itching, joint pain, rashes, etc.) occur in about 5-10% of patients. More serious side effects (liver and white blood cell complications) are quite rare. WBC complications occur in about 1/400 or 1/500 patients. Serious liver issues on ATDs (deaths or transplants) have averaged less than one person per year since the FDA started tracking “adverse events” in the 1960s, and the majority of these severe complications were associated with PTU, not methimazole/Tapazole.
Finally, if your wife is looking to become pregnant post-treatment, make sure that her doc is aware of the latest medical guidelines on pregnancy and Graves’ disease. The latest guidance recommends testing antibodies in *all* pregnant women with a present or past history of Graves’ (regardless of treatment) at the 20-24 week mark, with the involvement of a maternal-fetal specialist recommended if antibodies are extremely elevated.
Hope this helps!
Hi Tim, I was referring in my post, to encourage you to explore more, to read more, and to ask more questions.
Kimberly has followed up with everything that I was concerned about.
1. There is not much logical or medical reason to tell you that RAI is faster, if your goal is to have a family. It is more of a slug all the way, for the reasons she mentioned.
2. RAI is not temporary, as Kimberly said, it is as permanent as a thyroidectomy. She explained it nicely.
3. Since your wife is on anti thyroid drugs, I am hoping that you both have been educated on the drug and the labs associated with it, as Kimberly referred to in her next to last paragraph.
4. I think Kimberly has the references to the guidelines she mentioned in her last paragraph. I suggest you ask her for them so you and your wife can read them.I do think a 2nd opinion from another endo would be helpful for you. Based on some of the concerns mentioned in this post. Ask questions, go back to the one you have with these topics. Challenge and learn and clearly know and understand.
To be clear, if your wife responds well to ATD’s, and you decide to go that route and get pregnant, be very well informed on all of those implications. Probably from a high risk gyn doc. Lots to know.
ShirleyHi Tim, I was referring in my post, to encourage you to explore more, to read more, and to ask more questions.
Kimberly has followed up with everything that I was concerned about.
1. There is not much logical or medical reason to tell you that RAI is faster, if your goal is to have a family. It is more of a slug all the way, for the reasons she mentioned.
2. RAI is not temporary, as Kimberly said, it is as permanent as a thyroidectomy. She explained it nicely.
3. Since your wife is on anti thyroid drugs, I am hoping that you both have been educated on the drug and the labs associated with it, as Kimberly referred to in her next to last paragraph.
4. I think Kimberly has the references to the guidelines she mentioned in her last paragraph. I suggest you ask her for them so you and your wife can read them.I do think a 2nd opinion from another endo would be helpful for you. Based on some of the concerns mentioned in this post. Ask questions, go back to the one you have with these topics. Challenge and learn and clearly know and understand.
To be clear, if your wife responds well to ATD’s, and you decide to go that route and get pregnant, be very well informed on all of those implications. Probably from a high risk gyn doc. Lots to know.
ShirleyHi Tim,
I just wanted to chime in for a bit. The others who have already responded to your post are far more experienced (if you will) than I am.
I am a patient and I too encourage you to explore more, read more, and ask A LOT of questions. A second opinion never hurts. After all this your wife’s life and yours too. I don’t believe that there are any “quick fixes” though and whichever treatment you choose I’ve learned that it will take time.
I chose to have Total Thyroidectomy; 3 weeks ago this coming Monday and I have a scar but honestly speaking its very very difficult to see. The incision is clean as if they used a laser beam. I was even surprised but I believe that speaks to the surgeon and his lengthy experience (over 4000 TT’s). There was also No damage to my vocal cords (1 in 4000). I chose the TT because the ATD’s were not working for me personally and I’ve read and heard that some people who have RAI have had some reoccurring issues as if it the treatment didn’t take to them somehow. Also I have graves eye disease and for some it can cause more irritation to the eyes. My endo didn’t recommend it either.
For me, I couldn’t take that risk. So far I have no reservations about the decision I made. Now my goal is to continue getting well:)I wish you both good luck in making your decision and I hope that you will continue to visit this site. Other patients share their experiences and the forum also offers valuable and informative resources!
Hi!
You’ve had a lot of great responses. I would disagree with RAI being faster than surgery. The other thing to remember is that once your wife has RAI, she has to wait a minimum of 6 months to a year (preferably) to conceive because of the radioactive materials in her body. So, although it might be possible to be balanced hormonally before then, she still shouldn’t conceive right away.
I had surgery and had my hormone levels balanced in 2 months. I was started on 100 mcg of synthroid (which is thyroid hormone replacement) the 2nd day after surgery. I had labs that showed I needed more 6 weeks later. Two weeks after my dose increase, my labs were good and now (7 months post surgery), I’ve been stable on that initial increase (to 112 mcg) and feeling pretty good! So, surgery does not necessarily mean a long process of finding the right dose and being balanced. It can happen fairly quickly. Also, your wife would not have to worry about any radioactive materials in her that would prevent her from conceiving once her thyroid levels were balanced. As a side note though, if your wife does choose surgery or RAI, thyroid replacement hormone has to be increased right away once a woman finds out she’s pregnant. As far as a scar, if you find a great surgeon who does a lot of thyroidectomies, the scar isn’t a big deal.
If I understand correctly, PTU (not methimazole) is considered safe for pregnancy through out all 3 trimesters where methimazole is only safe for the last 2 trimesters. The first trimester is when the baby is forming all his organs and systems, so it is important to avoid methimazole during that time. Now this is REALLY far into the future, but if your wife decides to go the methimazole/ PTU path and conceive, know that breastfeeding is compatible with both drugs.
Good luck to you both and I hope she starts to feel better soon.
Hi,
Sorry your wife and you are going through this. I know there is a significant amount of information that you both now need to absorb. Fortunately, once started on the ATDs, that will give you both time to consider your long term treatment options and goals especially considering your wish to start a family. Some points that you should think about over the next few weeks (and prior to pregnancy) are:
1) ATD treatment is recomended for a minimum of 18-24 months before seeing attempting to determine if the drugs can be stopped and remission (stable levels without medication) has been achieved. If your wife becomes pregnant while on Methimazole, she would likely be switched to PTU for the first trimester. There is some evidence that Methimazole is associated with some skin related birth defects so it is felt the PTU is safer for the first trimester. Rarely, hyperthyroidism can be difficult to treat during pregnancy. Too much thyroid can cause a miscarriage and too little can cause brain damage for the baby. If the hyperthyroidism is hard to control, this may require a thyroidectomy during the pregnancy which is not an ideal situation.
2)Many women do experience a remission of auto-immune disease during pregnancy and may be able to stop medication during the pregnancy. BUT, Graves’ often resurges in the 12 months post-partum. Treatment would again be needed. Being a new parent is not the ideal time to have to deal with Graves’ disease (not that any time is great). Being sick with a new baby is bad, bad, bad.
3) For a nursing mother, taking an ATD while nursing may be possible but is not without some concern and worry (new parents already have a lot to worry about.) Both Methimazole and PTU will cross into the breastmilk. Babies may need to have their thyroid levels checked via a heal stick periodically to determine that their thyroid levels are within the proper range. Doable, but not fun.
4) A nursing mother must stop breastfeeding if treated with RAI (and stay away from the baby for several days).
5) A nursing mother must temporarily stop nursing if she has a thyroidectomy (pump & dump) while the medications needed for the surgery clear her system. It may be possible to pump and store enough ahead of time but not always an easy thing to do.
6) Kimberly and Shirley already mentioned the question they had about the endo’s statement that RAI was faster. Additionally, for RAI, there is a recommendation to wait to conceive for a period of time. I’ve read anywhere from 3 to 12 months but something you should be aware of.
It may sound like I am discouraging pregnancy while on ATD but really, I am not. I was first diagnosed post-partum with our first baby whom I was nursing. My medical team all supported continued nursing as they felt the benefits far outweighed the risk of our baby getting too much ATD via breastmilk. Those heal stick appointments though were not fun for her or me. We also conceived our 2nd baby while on Methimazole and I did the switch to PTU for a few weeks and was able to stop for the rest of the pregnancy. In fact, I stayed in remission much to everyone’s suprise for about 6 years and we have two healthy and happy children who are doing well in school. I have now relapsed but am doing well again on an ATD. Yikes, I have written a book.
Best wishes and keep us posted.
Laurel
another short note. Seems there is are recurring theme for you and your wife to profit from our thoughts.
The posts have kind of begun with generalities, now moved on to statements and facts that disagree with what you have been told by your endo.If you do any reading, or consult with another endo, I think you find that everything Alexis says, and Laurel, too, contrasting RAI with TT, is right on the money. That is what I was trying to guide you to explore.
This is a beginning for you. Learn to question. Learn that your next job is to question your doctor about what he has told you. Or, go with a list of questions to another endo, see if they differ in their explanations.
As has been repeated many times, here, we are NOT doctors. But if you do a little reading @ RAI and time it takes to get regulated, and RAI and pregnancy, you both should question what your endo said. I have never, ever heard any doctor, or any study, stating an RAI is faster than surgery. It is the opposite.
And the issue of a scar from the incision, is pretty much a total non-issue.I encourage you AND your wife to read these posts, and generate your own questions from them, and seek more answers.
*In this whole Graves’ path, or in ANY medical health care encounter please consider doing the following. And do it.
1. REquest copies of all records, visits, labs. If you can access this info electronically, all the the better. Otherwise, have them send as a PDF or mail them to you. The patient needs to sign a medical release of information form, requesting records be sent to themselves. If you are told by ANYONE that they cannot do this, that is wrong. We are entitled this by HIPPA, and it simply makes sense. You probably keep records of your visa bills, income tax, etc. Same thing. You need to refer back to them, and check them for accuracy.
I had a TT, and you can find out much info about it. I was back to work full time in 2 weeks. I do not recommend that. It’s too soon full time, and it is nice to take advantage of time off when you feel pretty good and can do some fun stuff, too. Regarding my incision, I have won $1 bets with people who I have challenged to find it. (:It is almost like “studying” to read Laurel’s and adenure and other posts, but I think it is worth your time, in the best interest of your and your wife.
ShirleyHi Tim,
I’m responding to this because I recently had RAI to destroy my thyroid because I plan to try becoming pregnant next year. I’m sharing my experience and understanding of the matter in case it is of use to you.
I was diagnosed with Graves’ in 2010, although my symptoms began some time before that. I took Methimazole for around two years. My symptoms were very well controlled on Methimazole and the dose was reduced throughout that time to a very low dose. Because my thyroid hormone levels were so well controlled on the low dose, my endocrinologist and I decided to stop the treatment to see if my Graves’ was in remission. Unfortunately it wasn’t and I became hyperthyroid again at the end of last year.
I’m getting married in September and would like to start a family. As you have heard Methimazole should not be taken in the first trimester of pregnancy and PTU is often given at this time. In 2010 the FDA issued a warning about liver failure with FTU. I realize that this is very rare but I considered the side effect to be serious enough that I would prefer not to take the drug. Also, I was concerned about titrating the dose so that my thyroid hormones remain in normal range during the switch from Methimazole to PTU and back, as high levels of thyroid hormone during pregnancy can also cause problems with the fetus.
So I decided to take the radioactive iodine. This is certainly not a quick fix. I had the treatment in January and my endocrinologist expects my thyroid hormone levels to drop in March or April. After that, we begin the process of achieving the correct level of thyroid hormone replacement. Because of the time it takes to achieve a stable, normal level of thyroid hormone and because of the radiation exposure we can’t start trying for a baby for a year.
Although I will now be hypothyroid for the rest of my life I decided that hormone replacement was preferable to taking thyroid suppressant drugs and dealing with the unpredictability of a thyroid under attack from autoantibodies. Also, as I understand it, it is generally the case that most people with Graves’ end up hypothyroid anyway as a result of eventual failure of the thyroid.
At the end of the day it will end up being your wife’s decision and she needs to make that decision based on her assessment of the situation. Every case is different. I have a friend who took Methimazole for 18 months and her Graves’ went into remission, and I’m sure that you can find people on this site who took PTU during pregnancy and had no problems and now have beautiful children. Unfortunately there is no easy answer. It’s great that you are so supportive. With time, your support and a good endocrinologist (make sure you have one of those) your wife can come to a decision regarding treatment that feels right to her.
Jo
WOW! thanks everybody for all the useful information. My wife recently had a follow up appt with the ENDO beacause although she has been taking her atenolol to control her heart beat and methimazole for her thyroid she has still been feeling very weak and out of breath from rapid heart beat. The ENDO said this is normal and this process will take time. We also told the ENDO that we have decided on thyroidectomy to remove the thyroid. We have been reading and discussing the pros-cons between RAI and TT and we feel the surgery is best. She brought the surgeon in to ask us some question about why we wanted the sugery. Our response was that we wanted to start a family. We are both 29 have been married for 5 years, trying to conceive for 2 years and 2 miscarriages later where ready to take the next step. The surgeon agreed and we have a per-segery appt on March 1st.
Like I said we have been reading up on removing the thyroid and we do have a couple of questions:
My wife is worried that after the thryoid is removed her body will not be able to digest carbs and her diet will have to change. is that true?
Does the surgery require a hospital stay?
I also read that some surgeons have the ability to remove the thyroid endoscopicly, meaning less of a scar. Can anyone recommend a good surgeon in Los Angeles, CA area?
again thanks for all the help
TIM&MEG -
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