[JennaV]

in reply to: Why avoid radiation treatment/thyroid removal? #1061086

I chose to avoid RAI because I have a nursing baby, and RAI would have required weaning him. Since I have no intention of weaning him anytime soon, my doctor said I had a choice between staying on ATDs and having a total thyroidectomy. Because of the risk of ATDs passing through the breastmilk, my baby had to have his thyroid levels checked every 2-4 weeks while I was breastfeeding. My son’s pediatrician and my endo both agreed that it would be fine to remain on ATDs as long as his levels stayed normal, but for his sake and for the sake of future children (ATDs are not entirely safe during pregnancy), I decided to have a thyroidectomy.

I am about 2 months post-thyroidectomy now, and we are still working out my T4 replacement dose. This process does require patience, but I am happy with the decision, and looking to the future, when my levels are correct, I am very optimistic.

[JennaV]

in reply to: Recent Surgery and Not Feeling Like Myself #1061174

I had surgery about 7 weeks ago and I am having similar struggles. My endo just recently upped my Synthroid from 100 to 125, but I am still having LOTS of hypo symptoms. Emotions are a big struggle. I feel like I go from depressed to frustrated/angry to crying about 10 times per day. I know it will just take patience to find the right Synthroid dose, but it is hard to be patient when I feel so crappy. I have been telling myself to take it one day at a time, and about once every 2 weeks I send a message to my endo with my symptoms. He has been having me check my levels more often because I am very symptomatic. Getting a lot of sleep (like 10 hours per night) has helped me a lot. It is not a great long term solution, but it is helping for now. I hope you feel better soon!

[JennaV]

in reply to: Postpartum and Graves #1061487

Erin,

The thyroidectomy went great. The recovery was much easier than the recovery from giving birth, if that comparison helps. The only really hard thing was that I was not supposed to pick up anything over 10 lbs for 3 weeks, but my surgeon indicated that a little fudging on that rule wouldn’t hurt me. My kids weigh 32 and 21 lbs, respectively, so that meant not picking either up. The older one is almost 3, so not a big deal. The little one just turned one and is not walking, so much more difficult. We had help from family for about a week after surgery, and my husband was able to be home for about a week after that. The third week, I just decided I would pick up the baby when I had to (like to put him in his crib for a nap). That was the hardest part. I am now 3 weeks and 2 days, and the incision is just a pink line–still obvious but it does not look hideous (it did for a week or so).

The reason that I decided to do surgery over ATDs is for future pregnancies and future babies. While I don’t plan to get pregnant in the very near future, we are unable or unwilling to use any of the very effective forms of birth control. Also, I still don’t get my period because of breastfeeding, so I wouldn’t even know if I became pregnant right now. Basically, I could not get used to the idea of being on ATDs during pregnancy. I know people do it, and I know that they most often have healthy babies, but there is a risk for birth defects (both MMI and PTU are considered class D for pregnancy). If anything did happen with a baby while I was on ATDs, I just wouldn’t be able to forgive myself. Just to make really clear–I certainly don’t judge anyone who does use ATDs during pregnancy–I know that for many it it the best option and I know the risk is tiny. But I am one of those people who won’t even take Tylenol while I am pregnant–just in case.

The other thing that convinced me to have the surgery is that I really did not want to go through another GD episode the next time I have a baby,which my endo said is pretty likely, especially if I don’t achieve remission on ATDs prior to the pregnancy. This time was way too difficult for me and my family. I have several other health issues (Celiac disease and a lot of other GI problems), and active GD makes those issues worse because of the chronic diarrhea.

Also, I was always hypo on ATDs and changing the dose and swinging around. That was really difficult, too.

Anyway, I considered my options for several months before deciding. I am happy with the decision so far.

[JennaV]

in reply to: Postpartum and Graves #1061485

I have a REALLY similar story. I am 27. I was diagnosed with GD after my first child, but it was mild at that point and resolved on its own. After the second child, it came back with a vengeance. I took PTU, which passes into breastmilk at lower concentrations (I talked with my pediatrician and she did not recommend any pumping and dumping, just periodically checking the baby’s thyroid levels–all fine). Just 3 weeks ago, I had a thyroidectomy because I did not want to stop nursing (my baby has a really immature digestive system and projectile vomits from about anything except my milk) and I didn’t want to stay away from my kids for that long. I could nurse almost immediately after the thyroidectomy (just pumped and dumped for a few hours to clear the anesthesia. Right now I am not regulated with my Synthroid dose yet, so that is frustrating, but I am happy with my decision.

My first endo did not want to work with me because I was nursing. He did not put me on ATD’s or anything–just said wait until you wean and then RAI. Second endo said if you are nursing then you are nursing. Your decision, we will work within that framework. That was really refreshing!

Also, one more tip I would have for you is always ask your pediatrician if you need to pump and dump. My endo and my surgeon often said pump and dump for 24 hours after taking this or that, and the pediatrician would say no–nurse right away.

[JennaV]

in reply to: symptomatic…"normal" TSH…??????? #1061507

When I was diagnosed with GD (after the birth of my first child), I bounced around slightly hyper and slightly hypo (never out of the widest ranges, sometimes slightly out of range. My endo said let’s wait and see, and I did come back to normal. After the birth of my second child, I went way hyper and stayed there. I was very symptomatic when I was bouncing around. I think that thyroid fluctuations make us feel worse as they are changing. For me it helped to know it was thyroid related, even if we weren’t treating it, because then I felt like at least I was not going crazy. Also, when I have had trouble sleeping, melatonin once in a while has been a really helpful supplement. Take it right before bed (like when you are already laying down). Hope that helps! You aren’t alone. ” title=”Smile” />

[JennaV]

in reply to: question about medicine again #1061623

I just had a total thyroidectomy a week ago, and I wanted to comment on 2 things. Before I do, I am sorry for you that your surgery date has been messed up. I know what it is like to prepare for something and then it gets changed–it is really frustrating. Anyway, here are my comments:

1. Both my surgeon and my endo stressed that thyroid levels should be normal before surgery because it increases the odds that surgery will be uncomplicated. Also, they started me on Synthroid a couple of days after the surgery, and if you were hyper at the time of surgery, I think they would want to wait, but would not know how long to wait, etc. I did not have to do potassium iodide or any other medicines for prep, though.

2. If you have kids or someone you take care of full time, I would say you definitely need to have help after your husband goes back to work. Otherwise, you should be fine to be left alone as soon as you get out of the hospital. I came home about 48 hours after surgery, and I have been totally self-sufficient. I do have 2 little kids, ages 2.75 and 1, so I need help because I cannot pick either of them up for 3 weeks (nothing over 10 lbs). Not a big deal for the 2-year-old, but the 1-year-old needs to get lifted into his crib several times per day, etc.

Best of luck to you. So far the recovery has been much easier than I thought it would be.
Jenna

[JennaV]

in reply to: 17 years past RAI #1061617

You have quite a few hypothyroid symptoms, so I would suggest looking at those TSH, FT3, and FT4 labs that you have done yearly. There is a range for normal, and your doctor might be happy with your dose of Synthroid as long as it is within the normal range, but you might like it to be a different place within the normal range, especially if you are symptomatic of hypothyroid. For example, FT4 (remember that Synthroid is a synthetic T4, so this is a good indicator of your replacement dose) range for normal is usually (.8-1. or (.7-1.9) where I live (ranges can be different depending on the lab and the geographic region). However, I notice a HUGE difference between being .8 and being 1.8 (I have been both recently). You might be on the low end of the range, and plenty of people experience hypothyroid symptoms while being at the low end of the normal range. Just something to check out. Hope that helps!

[JennaV]

in reply to: Does thyroid removal stop the formation of antibodies? #1061645

I can only speak from my own experience, but I was on PTU for about 6 months, and although my thyroid levels were regulated (and sometimes slightly low) during that time, my eyes remained puffy, dry, and itchy with no improvement. Then I had a thyroidectomy about a week ago, and already my eyes are definitely less dry and itchy and getting less puffy, too. Maybe it is my imagination, but my husband, my mom, and I all see a difference in my eyes already. I do not have TED persay, but the antibodies definitely affect my eyes.

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