[MHLee August 23, 2012 at 8:20 pm Post count: 7]

#1059306

Hello!

I was diagnosed a month ago with graves’ and put on 20mg daily of tapazole. The good news is that 3 weeks later my levels are completely normal. Bad news is that I had a bad reaction to the tapazole, white blood cell count plummeted, giving me flu symptoms and high fever. No more tapazole.

Endo says that I can’t have PTU either now because of my reaction. He also says no surgery because I have to take one of these meds first to prevent thyroid storm.

I really din’t want RAI. I am nursing my baby full time, and neither of us are emotionally ready to wean for this. Is surgery really not an option? Do you know of ANY other options? Also, since my levels normalized so quickly, how much time do you think I have to wean before my levels become high and I have to have RAI?

Thank you! I am heartbroken at the notion of having to wean my son at this time!

[Bobbi August 24, 2012 at 1:52 pm Post count: 1324]

#1173988

Hi, MHLee: I’m sorry for your predicament.

I cannot answer your questions about how long before surgery, etc….you really need to listen to your doctor, or get a second opinion from an equally qualified doctor.

The issue with surgery is this: Generally speaking, no surgeon will operate – for any reason other than abject life/death emergency — on a patient who is hyperthyroid. Operating on the thyroid itself when someone is hyperthyroid is even more dangerous. The risk of thyroid storm is significant. And people have died as a result. You might find a surgeon willing to try, but most likely you will be given arguments against doing the surgery, unless your thyroid levels are controlled somehow.

I would strongly recommend that you understand that YOU are the person most emotionally involved with the process of nursing your son. Babies have thrived over the decades being bottle fed. Nursing is better. No question. But babies need to be cuddled and fed at the same time and there’s usually no reason why the bottle cannot provide the feeding with the cuddling still in place.

So you need to do what you can to get yourself healthy again. Your baby NEEDS a healthy mom, not just breast milk.

[KimberlyOnline Facilitator August 24, 2012 at 2:04 pm Post count: 4294]

#1173989

Hello – I would suggest a consultation with an experienced thyroid surgeon to get all of your questions answered.

As Bobbi noted, the preference is to get thyroid hormone levels stabilized prior to *any* surgery to reduce the risk of thyroid storm.

However, in cases where surgery is the preferred treatment option and the patient cannot take Anti-Thyroid Drugs for some reason, doctors can use potassium iodide and beta blockers to help reduce the risk. A surgeon would be in the best position to give you guidance as to whether this might be an option for you.

Take care!

[snelsen August 24, 2012 at 6:47 pm Post count: 1909]

#1173990

Hi. Yes, surgery is a fine option. Many on the site have had it, including myself. Your thyroid labs are within range now. Before you have surgery, you take potassium iodide drops for several days, to decrease the size of the thyroid gland, and decrease the vascularity.

I suggest you make an appointment with a surgeon who does many thyroidectomies. From your post, I do understand the issue with the ATD, but I am super puzzled why he says surgery is not an option. Because right now, you are not hyper.
******The best person to read on this is adenure, Alexis, for her situation is the EXACT SAME as yours. Intolerance to ATD’s, elevated liver labs. She is breast feeding. She did not want to quit. She did decide to have the surgery, and you can read her entire though process, plus sending her a PM to learn even more.

I completely understand your desire to keep breast feeding, and after you read the posts by Alexis, she will tell you so much more. She ruled out RAI cause she did want to continue to breast feed,
I am much older than you, but WHEN I had Graves’ I was breast feeding a 6 month old boy, had the surgery, continued to breast feed for a couple of years. It can be done.

I would also check with Alexis about PTU, I cannot recall if she did/did not try it. The liver labs go back to normal fairly quickly, and your WBC will go up fairly quickly. And check all I’m saying out with your docs,
But, I encourage you to say, “I do want to explore the pros and cons of surgery, and I do want to continue to breast feed.
Happy reading, and I wish you the best, keep writing
Shirley

[adenure August 24, 2012 at 8:13 pm Post count: 491]

#1173991

Hi!!!

Yes, you sound very much like me! I was diagnosed with Graves after my 4th baby and took 5 mg. daily of methimazole for 7 weeks. My labs showed elevated liver enzymes 8 times the normal amount, however, the methimazole did get my thyroid hormones stable (euthyroid). Thanks be to God, they stayed stable the 6 weeks I waited to have surgery. I had a total thyroidectomy 2 months ago. My surgery went smoothly with no complications. I am on Synthroid now and yes, I am still breastfeeding my now 9 month old.

Like you, my endo. really wanted me to do RAI because he felt it was less invasive, safer, not as many factors to consider. He tried to convince me on 3 different occasions, but he DID support me in my choice for surgery even though he didn’t recommend it. That is very important. You mentioned your hormone levels are normal right now. I would ask your endo. to have your labs tested weekly until your surgery (if you decide to go that route). I had my labs done weekly up until the last week before my surgery when I started taking the potassium iodine (SSKI) drops to prep. Those drops alter hormone levels, so a lab at that point wouldn’t make sense. Again, I was off ATD’s for 6 weeks leading up to surgery and just had weekly labs to make sure I stayed euthyroid. I was not on methimazole or PTU during surgery or for the 6 weeks leading up to it.

I know Shirley didn’t wean her baby while taking SSKI drops, but my pediatrician did want me to temporarily wean my baby for the 7 days I took the SSKI drops. I pumped and dumped those 7 days and it was tough, but well worth it. I kept my supply up and was able to nurse after surgery and am still going strong there. SSKI drops shrink the thyroid, draw blood away from it and also help with hormone levels if taken for a short period of time (up to 2 weeks) otherwise the drops can make hyperthyroidism worse. As far as PTU, my endo. wasn’t opposed to entirely, but he didn’t recommend it, and I wasn’t comfortable waiting to see if I went hyper and then hoping PTU would work and not damage my liver, so I opted for surgery.

I understand your desire to keep breastfeeding too. As I told my husband and my mom, I want to have some positive hormones running through my system through all of this! — along with all the other positives for nursing. Of course, if for some medical reason, surgery is not a possibility, being a healthy mom is #1, even if it means weaning your baby. I know that we moms will fight tooth and nail to nurse when it means so much to us. I get it. If I had started to go hyper before my surgery date, I probably would have taken the PTU with the hopes of it balancing me out and then going in for surgery.

If you do go for surgery, please, please, make sure you find a surgeon who is really, really good and does a lot of thyroidectomies. I was very confident in my surgeon and very fortunate, but I know that problems can happen and it is a delicate part of the body.

[MHLee August 29, 2012 at 6:07 pm Post count: 7]

#1173992

Thank you all so much for your help! I had my appt for a second opinion today, and my new doctor thinks that I am a good candidate for surgery! She got me an appt with a really good, experienced surgeon for Tuesday, and we’ll see if he agrees. Here’s hoping that surgery is a safe, appropriate alternative for me! I really prefer it to RAI!

[snelsen August 29, 2012 at 7:13 pm Post count: 1909]

#1173993

Nice! Very nice! I’m not surprised. Glad you did not have to wait a long, long time for this information.
Shirley

[MHLee September 6, 2012 at 11:40 am Post count: 7]

#1173994

Ok, so I have a new question! Had my second opinion and now thyroidectomy is scheduled for October 4. I truly appreciate the help you all provided me!

So here’s my question: should I opt for a subtotal or total thyroidectomy? My mom says that I should request subtotal, since I am 24 and having some of my own, natural hormone would be a good thing. The surgeon prefers total, because it is easier to regulate the synthroid dose afterward.

I keep trying to weigh the pros and cons, and would love some advice from folks who have been there. Thanks!

[adenure September 6, 2012 at 2:18 pm Post count: 491]

#1173995

Hi,

When I spoke with 2 surgeons, they both said, that for Graves patients, removing the entire thyroid is the best solution. If we did not have Graves and needed part of our thyroids removed for another reason, a subtotal might make sense. Since our immune system attacks our thyroids (antibodies being present), then it stands to reason what ever thyroid you have left will be attacked by Graves antibodies- which isn’t all that much better than having the entire thyroid attacked. I had a total thyroidectomy, and I won’t sugar coat it, the Synthroid journey isn’t much fun, but it is way easier than the hyper journey. Right now, my levels are normal, but I don’t feel like my old self 100% yet. I’m contemplating giving Naturethroid a shot, but haven’t completely decided yet.

If you get a subtotal, it is possible that you will continue to have hyper symptoms or problems after surgery. One of my friend’s sisters has Graves. She had a subtotal quite a ways back, but unfortunately she is having hyper symptoms again and is most likely going to go back in to have the rest of her thyroid removed. My surgery went really well with no complications, but I’ll tell you, I wouldn’t want to go back in and do it again! It makes sense that it’s easier to regulate your meds. if all of your thyroid is removed- especially bc you are a Graves patient. Our thyroids and levels are wacky bc of the disease. So, I can imagine balancing Synthroid with a thyroid that is being attacked by antibodies would be a challenge and may prove frustrating for you and your doctor. I don’t know for sure, but just a guess.

If I had to do it again, yes, I would take the whole thing out as to take out the variable of a wonky thyroid (or 1/2 of one) causing me issues.

[MHLee October 3, 2012 at 4:34 pm Post count: 7]

#1173996

My thyroidectomy is tomorrow!!! Doc says it should take 2-2.5 hours, and I should be released 4-6 hours thereafter to go home (24 yrs old, good medical history). He is a great endocrine surgeon, practicing for almost 30 years, who does approx 400 thyroidectomies per year.

I am confident that this is the best decision for me. Any last minute advice for me? I know many of you have done this, and I want to be prepared! Thank you!

[snelsen October 3, 2012 at 6:55 pm Post count: 1909]

#1173997

I was also 24 years old, nursing a baby. I pumped the same day, fed him thereafter. It helps to have someone fix meals, hold the baby, do the laundry, and generally be nice. I lived in student housing at the time, and my friends took my 2 year old which was a GREAT HELP. Neck a little sore, ate everything right away, went back to work too soon (full time RN) went back in 2 weeks. That was dumb. I had plenty of sick time.
I felt fatigue, more than “me” for about 4 weeks. Hard to determine, with a baby and a 2 year old. I was always tired anyway!!!
You will do fine. I did not ever become hypo, like feeling terrible, but in about 5-6 weeks, my labs were normal and I felt great-BUT I had a sub total thyroidectomy, which used to be done, the theory was leave a tiny bit of thyroid gland. It worked for several decades, then I needed to take Synthroid.
I think you will do fine!
Shirley

[Ski October 3, 2012 at 7:28 pm Post count: 1569]

#1173998

I don’t have any last minute advice, but joined the conversation late and wanted to say congratulations for getting the outcome you wanted, and I’m glad this forum was able to provide the support you needed to get there! Good luck tomorrow — the one thing I do know is that patients who have chosen their treatment with full knowledge of all the options have been the happiest after their treatment. Not that it’s easy, but an informed, empowered patient is truly the best possible kind to be, always. Continuing along the path of treatment and healing in that spirit will serve you well. Well done! 😎

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