[Lady October 21, 2008 at 11:08 am Post count: 7]

#1075721

Thank you, nmartel. I wish you a worry-free wait period, and hope it’s something you find a way look forward to, I mean, to the degree one can happily anticipate surgery. Sounds like you’ve had a time of it in the past two years. Mine will be in January, too. I can’t wait until I can stop worrying about my heart rate when I exert myself, so for me, that moreless dwarfs the worry about the surgery itself.

I have found a first-rate thyroid surgeon. I’m lucky to be in a large enough geographical area where there is a surgeon who has specialized in thyroidectomies for years. He’s got an impressive and superior record of incident-free thyroidectomies. It’s a good recommendation to get a specialized surgeon, Ski. I feel solid, safe, and confident.

[Jake_George October 21, 2008 at 3:02 pm Post count: 120]

#1075722

Thyroidectomy for most people is a valid option that should be open to the patient. It is surgery and carries risk to be sure. But depending on age, current health and such it may be a good choice for you.
I know my endo recommended RAI and I held off for awhile. I tried Antithyroid drugs for 18 months to see if my thyroid would calm down on its own. When I was backed off the ATDs my levels went through the roof again so I did the RAI. It took my thyroid about two years to die off and my levels to stabilize. During that two year period I like others went from hyper to hypo at the drop of a hat. It made it very hard for me.
In hindsight I would have done the thyroidectomy if I had it all to do over again. With the surgery you go hypo almost right away and you can go on replacement hormone and levels are easier to adjust because you are not producing any or negligible levels from what is left behind.
So talk to your doc, get your second opinion with the thyroid surgeon. If you decide on the surgery ask if they use a nerve sensor. It is placed on the vocal nerve and if they get close in the surgery it emits a beep. That way they know they are close to your vocal cord nerves and can stop there, thus greatly reducing the chance of vocal cord issues.
Let us know how you make out after you talk to the surgeon.

[Rachel October 23, 2008 at 3:57 pm Post count: 1]

#1075723

I just had a complete thyroidectomy on September 30, 2008. The relief was complete and instant in the recovery room when I woke up. I was hoarse for 2 days, took pain medicine for 2 days, but felt great compared to before surgery. I was out of work only 9 days.
I can tell you it was the right choice for me. Good Luck

[npattersonModerator October 25, 2008 at 12:00 pm Post count: 398]

#1075724

It soulds like you are an intelligent person, and have good, solid questions. Something to consider: Endocrinoligists will usuallt recommend medication, Radiologists will usually recommend radiation, and Surgeons will usually recommend surgery. Sounds too simple, but that’s generally the case. An endocrinologist who will not even discuss with you the alternatives is doing both you, and the specialty a huge disservice.

For the record, I wanted surgery (many years ago). The endo that finally diagnosed me said "Surgery will cut your vocal chords and you’ll never be able to talk again". I was also told that medication would give me LEUKEMIA (I do know the difference between that and leukopenia), Anyway, there were no qualifiers, maybe, sometimes. His comment about RAI: "It is 100% safe". Obviously I had the RAI.

My point is that good doctors will discuss the reality of the treatments with you. They will encourage you to seek second opinions. This is a big deal, and you need to feel comfortable with the decision.

When you meet with the suirgeon, ask how many thyroidectomies he or she performs in a year, and what kind of complications there have been. Cancer surgeons, and Ear, nose and throat surgeons are the ones doing thyroid curgery. There are also thyroid surgeons–that’s all they do. I will try to figure out how to "post" the article on surgery that we have. In the meantime, e-mail me and I will mail the article to you. It is in the form of a newsletter, so I don’t have the ability to attach it just yet. (nancyngdf@bellsouth.net). Keep asking questions! Nancy

[nancym October 31, 2008 at 12:43 pm Post count: 3]

#1075725

Thank you Rachel for posting your success with surgery. I have to wait until Jan for mine. A complication that has arisen and I think that it has been wrapped up with the thyroid issues for years is I was just diagnosed with Crohn’s Disease also. So back on the Prednisone (yuck, yuck and more yuck) and more medications. I really hope this stabilizes prior to Jan! So not only do I have diarrhea from being hyper at the moment, I have explosive diarrhea and pain that doubles me over in the midst of a Crohn’s bout! How did I get so lucky getting 2 auto immune diseases?

[Ski October 31, 2008 at 2:24 pm Post count: 1569]

#1075726

About the second autoimmune disease ~ those of us with one autoimmune disease have a higher likelihood of getting another, sadly. At our San Diego conference, we were told that recently a "genetic defect" has been identified that is found within EVERY autoimmune disease patient. Having the defect does not guarantee that a person will get an autoimmune disease, but everyone with an autoimmune disease has the defect, which is very interesting. The research continues. ” title=”Very Happy” />

[ZZZZESTY November 1, 2008 at 12:13 pm Post count: 9]

#1075727

This is my first visit to the site. Wow, I wish that I had found it earlier. I was diagnosed with Grave’s Disease about two years ago. I thought I was going crazy for as much as two years before that. Doctors did not put my symptoms together. I lost my job and almost lost my family. It wasn’t until my eye symtoms appeared that doctor’s started to belive that something truly was wrong. That’s when the testing began. I was diagnosed with a severe case of Grave’s and started on anti thyroid drugs and steroids. I was so frustrated. It took so long to diagnose, now I know what it is and treatment was slow. My symptoms were getting worse. I wanted my life back. My endo finally said we needed to stop playing around and take the entire thyroid out. I spoke with the surgon the next week. I had the surgery in September, 2007. I had a minor sore throat after the surgery. Recovery was quick. My symptoms inproved almost immediatly. My eye went back to normal, but it still would not stay closed at night. I just went through a lid retraction to correct that. That surgery was minor. We are still working on my correct dose of synthroid. The scar on my neck is so minimal, that if I don’t point it out, nobody knows it is there. I finally have my life back! My husband and I are crazy in love again. My kids have the mom they have missed for years. I would recommend the surgery to anyone who has that option. In my case it was well worth it. I have my life back and I am HAPPY!!! Good luck!

[npattersonModerator November 1, 2008 at 6:13 pm Post count: 398]

#1075728

Thanks for a wonderful endorsement of surgery. I like the way the board is set up. Hopefully, I will be able to refer someone back to this post when the question comes back up. Glad to hear you are doing well, and glad yhou are here with us.

[crjszb November 7, 2008 at 9:25 am Post count: 3]

#1075729

This is my first time posting a question to a board but I feel the need to get some insight from others about my current situation. I was diagnosed with Grave’s Disease after the birth of our daughter in 2005. Since that time I have been on Tapazole with the hope my disease would go into remission and I could be off the medication. For the last 6 months I have been off the medication and my levels continued to creep back up, causing symptoms, and ultimately my return to taking the medication. My disease is labeled as mild and I have no nodes or enlargement of the thyroid. Definitely the best case scenario, however it seems I can’t be off the medication.

I am 34 and my husband and I wish to add to our family. I have spoken to an endocrinologist, family doctor, internist and surgeon who all pretty much gave me different opinions. The endo. is encouraging me to get pregnant and take PTU which has been known to cause birth defects. To me that’s a no brainer … don’t do it! How could I live with myself if I gave birth to a child with a defect, knowing I caused it? I am leaning towards surgery for simplicity-sake but again, the endo. tried steering me away from that because of the multiple risks. I saw the surgeon yesterday and he was very confident about doing the surgery and of my recovery and ability to proceed with pregnancy as soon as my levels were regulated again.

It’s obviously not recommended to take medication during pregnancy but supposedly taking PTU is the norm? I’m very confused and nervous about making a decision whether or not to proceed with surgery. From what I’ve read, it’s not as terrible as some have made it out to be. Obviously, there’s always a chance for something to go wrong. I would appreciate any insight I could get. Thank you for your time!

[Ski November 7, 2008 at 12:19 pm Post count: 1569]

#1075730

Hi crjszb,

Sometimes doctors have a natural aversion to surgery just because it IS surgery, and there are inherent risks with that. Sometimes doctors have a good reason for you to avoid surgery. A frank discussion with the endo is in order, and after that, the decision belongs TO YOU. Whatever makes you the most comfortable is what should happen, barring any medical reasons you cannot choose any particular treatment.

PTU is the ATD "of choice" for pregnant women, because methimazole is completely contraindicated. I hadn’t heard that PTU "caused" birth defects ~ you should check the source on that to be sure.

Still, if you don’t have any other risk factors for surgery (diabetes, for instance), that option should be open to you.

It’s a good thing you’ve already met a surgeon you trust. Let us know how you’re doing.

[crjszb November 11, 2008 at 11:27 pm Post count: 3]

#1075731

Thank you, Ski. I appreciate your information which forced me to look further in to the medication classifications. I was incorrect saying PTU was known to cause birth defects. During my previous research I found PTU to be a class D drug, just as Methimazole is, and assumed they both had the same fetal outcomes. I’ve since learned that [u:9zwy1su7]not[/u:9zwy1su7] to be true. My question now is WHY is it considered Class D but supposedly safe to take during pregnancy? I understand that PTU can possibly cause the baby to have an enlarged goiter and hypothyroidism at birth. :” title=”Question” /> It seems strange to me that if a person could ‘safely’ have surgery (meaning fully understanding the risks) that that wouldn’t be preferred over taking PTU during pregnancy.

I think my next step will be consulting with my OB/GYN to see what he has to say about this. In the meantime, I feel somewhat at peace with the information I’ve gathered, even though I’m no closer to making a decision as to how I should proceed.

Thank you again for your response(s).

[Pudden1965 November 12, 2008 at 7:09 am Post count: 1]

#1075732

Hello,
I am new to this site, but since 1993 I have had Graves Disease. I had the Iodine treatment, and my life was fine for 13 years! Now, I am 43 and my thyroid is all over the place! I am sick of ups and downs, and I find I cant work out, or my thyroid function increases and then I get sick and have to stop my gym routine. I am going to see about having the thyroid removed completely! I have to be on meds, but I am taking two different doses now, even days 175 and odd days 200. If I have to take it anyway, I feel like I should atleast have a choice of some kind of life. If the thyroid is completely gone, suppliments what I need and not have to worry about it. Has anyone else had this happen to them?????

Helen

[Bobbi November 12, 2008 at 8:08 am Post count: 1324]

#1075733

For a drug to be called Class D there has to be evidence of potential harm to the fetus, but it is thought that the potential benefits outweigh the risks. If a drug has been shown to cause abnormalities in the fetus, with the risks outweighing the benefits, it would be classified Class X.

The reason why PTU is the antithyroid drug "of choice" in pregnant women with hyperthyroidism is that it crosses into the placenta into the baby in smaller concentrations than does methimazole. So it has a somewhat smaller chance of harming the baby than methimazole does.

The decision-making about what treatment to use, when pregnancy issues are involved, therefore, is complicated. If you are already pregnant when you are diagnosed with hyperthyroidism, RAI is eliminated as a choice, and the options are PTU or surgery. If the dose of PTU that a patient would need to be on to keep them in the safety zone is too high, surgery might be recommended, if it was safe for the patient to undergo surgery.

If you are NOT pregnant, and are contemplating what treatment to do, then RAI comes back into play as a third option. You need to evaluate how you, personally, feel about taking a drug during pregnancy. Would you feel better about taking PTU or about taking thyroid replacement hormone (which is chemically identical to the body’s own thyroid hormone).

Obviously, you need to discuss the options at length with your doctor. You might also find a pediatrician (if you do not have one already) and discuss the options with him/her, as well. That way, when you make your choice, you will be more at peace with the issues while you are going through your pregnancy.

I do wish you well.

Bobbi — Online Facilitator

[Ski November 12, 2008 at 2:44 pm Post count: 1569]

#1075734

Hi Helen ~ I’m copying your post to a new topic, I’ll call it "13 years later, now what?"
See ya there.

[whiskywitch November 25, 2008 at 4:52 pm Post count: 1]

#1075735

Hi crjszb,
I have never posted on a site before but you situation prompted me to. I too have been diagnosed with Grave’s disease and am due to have surgery on the 5th of Dec. I was diagnosed in May this year, 5 months after having my first child in Dec 2007. I felt terrible, not least because my endo wanted me to stop breastfeeding to start on Carbimozole. I read a lot at the time about breastfeeding and simultaneously taking drugs for controlling Grave’s but it all seemed quite frightening and a very controversial area. So I persevered until he was 7 months, taking beta blockers until I weaned him.
Since then I have been diagnosed with thyroid eye disease. This has removed the possibility of radio iodine at the moment as it can cause the eye disease to get worse. So I have the choice of waiting until the eye disease dies down, possibly as long as 18 months from now, and then having the radio iodine or having surgery now. I am keen to have more children and as I’m about to turn 36 in January I didn’t feel like I have endless amounts of time.
I suppose the logic I have ended with has been: it seems likely that even if I decided to get pregnant using the drugs the chances are pretty high that I could end up having surgery at some point down the line. Therefore why not have it now before pregnancy to ensure that I have reduced the health risks for both me and the baby (if I have my way 3 more babies) as much as possible. Plus, I will be able to breastfeed without concern. Not to mention not feeling as bad as I did with a toddler and new born!
Even the though the surgery is scheduled I am still casting around, reading everything, to be sure I am making the right decision. I am seeing my obstetrician on Thurs just to get his view on my current situation, drug regime and desire to get pregnant as soon as is safely possible.
Anyway, I just wanted to share and let you know I understand entirely the endless weighing up of pros and cons. In some sense, I’ve been thinking, it will be a relief when surgery’s over and I have no more decisions to make!
I really hope you’re getting some good advice.

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