[snelsen]

#1062611

Hi, I had a a SUBtotal thyroidectomy. The thinking a long time ago, was exactly your thought. Remove most of the gland, leave a little bit, and there will be much less hormone circulating, followed by a good possiblility that you will end up euthyroid. This worked very well for me, and my story is similar to yours. Had baby, had all your symptoms, breastfeeding, working, blah blah, hot, weight loss, eating like two sumo wrestlers…etc. Following PTU and beta blocker, I had the surgery when my baby was about 8 months old. I continued to nurse after the surgery. In my case, I was euthyroid for amost 40 years, then became a little hypo, began Synthroid, all was well again. The two bumps on my road have both been in past two years.
I developed TED, with a vengence, and am still having surgeries to revert back to pre TED. The other bump is when I agreed to reduce my Synthroid (very gradually, 2 months between at the very most) because my TSH is consistently suppressed. The endo and cardiologist thought that it would be better to have less hormone circulating (osteoporosis and slight increased risk of afib)
However, it put me into hypo hell, my labs did not budge, and I was stunned to realize that being hypo is as hellish as being hyper. We are gradually increasing back up, my labs still have not changed, and I feel much better. )Except I am still ridiculously cold all the time.)

But I have from the recent conference, and the other facilitators, that the standard of care now is to remove the entire gland, wait for the stored circulating homone to dissapate, then you "know where you are" when beginning Synthroid replacement.
I have not had RAI, but to me it resembles the thinking of a thyroidectomy, for if the does is "not enough." then there is sitll some hormone circulating. Other people can speak to that better than I can.

My experience with the surgery? Easy. Slight tender neck. Felt better hyper wise, immediately, did not go hyper (cause in my case some gland is left) My biggest regret is that I went back to work too soon. Between baby, husband in med school, me going to school and working, this was a GOLDEN opportunity to take a break from everything~ To actually have time to myself, my baby and my life. Didn’t do it!
I cannot say anything negative about choosing the surgical option. It was right for me. I did not consider ADT’s at all.
Shirley

[mykena]

#1018087

Hello Everyone,

It has been quite some time since I have posted on the board. It’s true. When you’re doing well, you don’t post as often. Well, so much for that! I am back on the Graves roller coaster and it’s wackier than ever. I wanted to post this for someone who might identify and is looking for info. I learned a lot here. All of our stories are different. Here goes mine…

Circa Sep 2008…."I’m just stressed." In the previous month, I had become a stay-at-home mom with a 2 yr old and a 7 month old. I was keeping the house in showing condition while searching for a new home two hours away. The move was over now. I had relocated to a city with no family, two very small children and a husband with a new demanding job. Surely, I’m just stressed. Anyone would be, right? Unfortunately, I was wrong and all the signs were there. I just did not know what they meant. Besides the stress, I was not sleeping well, sweating at night, eating like a sumo wrestler but steadily losing weight, and just feeling broken down. The final straw was the mother that I had become. I snapped at my children over the most minor things. And everyone knows that a two year old can make even the sanest person feel like they’re losing their mind. I vividly remember telling my husband, "There is something wrong with me." It only took a physical for me to find that I was severely hyperthyroid. One visit to the endocrinologist, a thyroid ultrasound, and blood test, and I was told that I had Graves Disease. Next, I met my friends PTU and methimazole. PTU was up first because it was my only option as a nursing mom. Later methimazole got it’s chance. Boy did those drugs work well….a little too well. Nine months later, time for some labs….severely hypothyroid and low WBC…stop taking the meds immediately! After all of that, a couple of weeks off the meds and I was "normal" again. Could I be in remission? It’s possible. Doc says that I have a 50/50 chance of seeing a recurrence. Whew, I feel normal now.

Fast forward to Dec 2010…I didn’t gain any weight over the holidays. Wow! Wait, I even loss some weight. I haven’t been sleeping well, sweating at night again, hands shaking uncontrollably, and what is this pounding on my chest?!! I think I should have some labs drawn. And behold, my TSH is undetectable and T4 is through the roof! Ok, what I do know at this point is that my recurrence is worst than the initial onset of Graves and I do NOT want to come back to this state ever again. My options no longer include ATDs because I developed agranulocytosis on them. Surgery or RAI? RAI or Surgery? Well, I had actually gotten to the point that I would consider RAI as a result of all that I have learned from NGDF. So, I went to the Endo with that intent. Little did I know that the Endo and my PA had been studying my case the day before my arrival and had a lengthy discussion. They had done extra research to pull the most recent recommendations for precautions post RAI. I knew that I would have to be completely away from the kids for a few days but what I didn’t know was that I would have to limit exposure to them to 30 minutes a day for almost 3 weeks! Ok, the kids are 2 and 4 yrs old. That is just logistically impossible. I would have to move out of the house!

Total Thyroidectomy is scheduled for March 3rd. The surgeon does 300 thyroid/parathyroid surgeries a year and I’m ready to get it over with! I was impressed at my consultation visit with him. There was only one real surprise. I went expecting that we would do a Sub-total Thyroidectomy and maybe (just maybe) I would not have to take Synthroid. Well, he explained that was a long shot and that he has seen a very high rate of recurrent disease with STT. So, total thyroidectomy it is. I am at peace with my decision and ready to feel better.

If you have any pointers regarding surgery, let me know. I would appreciate your input!

~mykena

[mykena]

#1062612

Thanks for sharing your experience, Shirley. I’m glad you’re feeling better. I have accepted that I may have adjustment periods from now on.

I actually started working again shortly after my diagnosis (forgot to mention that). The doc said that I could be back in the office within a week but I am planning to take 2 weeks off. After that, we’ll see what happens. Fortunately, I have a good manager and she has offered work from home, half days, and split shifts as options while I am trying to get back to normal.

[Kimberly]

#1062613

Wishing you all the best!

Those restrictions for limiting personal contact following RAI are probably the most severe I’ve heard from any docs in the U.S. – but, of course, every doctor has his/her own approach. In Europe, the guidelines are much more strict than what is used in the U.S.

There was actually a study just released from the University of Wisconsin suggesting that Thyroidectomy should be offered to more patients as a first-line treatment option for Graves’, along with ATDs and RAI. The study found that patients experienced a very low complication rate and rapid resolution of their hypER symptoms. And it sounds like you are in excellent hands with a surgeon who does 300+ surgeries per year – a high-volume center is definitely the way to go.

Definitely keep us posted on your progress. Would love to see you at the conference this year in Boston if you are able to attend!

[snelsen]

#1062614

Yes, do come to the conference in Boston in the fall! I went for the first time and it was MARVELOUS~
Shirley

[lhc11]

#1062615

Hi! I don’t have time to post a lengthy response right now, but I have posted a good deal about my total thyroidectomy post-op, which was last June and went without a hitch (my surgeon, like yours, does over 300 thyroid surgeries a year). The best way to find my posts is to search for my username — lhc11 — and then look for things dated June 9, 2010 and onward (you can read earlier posts but they will be about me still in hyperthyroid mode trying to come to a decision). I have had virtually NO problems having to do with the thyroidectomy and am still on the same dosage of replacement synthroid they put me on after surgery (even though I’ve gained back the 30-some pounds I lost over just 4 months of being hyperthyroid).

On a semi-related note, I had my TSI (thyroid stimulating immunoglobulin, aka the antibodies indicative of Graves) tested last April as part of the first diagnosis; way up at 395 (reference range of 1-129). Just had them tested again the other day as part of a 7-month follow-up with my endocrinologist — down at 111. Which means they’re not especially "active" right now, which is great news.

Anyway: like Shirley, I have no regrets about having chosen surgery. Is it a little weird to have to take Synthroid every day for the rest of my life? Yep. Is it wonderful to be myself again? Yep.

Do yourself a favor and buy at least one nice scarf to take to the hospital with you. I wore mine out when I left (I chose to spend the night, which I would recommend), and it made me feel better about the bandage. I’m sure your surgery will go great and you’ll be so happy when it’s over!

[mykena]

#1062616

Thanks, lhc11. I have read your posts and was very encouraged by them.

So…I was so sure. Now, I am not. This is a long story. I will try to make it short.

My aunt, located in D.C., was worried about me having surgery and knows an Endo there. Put us in contact, gave me great info, gave me more questions to ask, and encouraged me to seek a second opinion immediately.

Asked additional questions of my first Endo and the surgeon. Confirmed that the surgeon does 300 thyroid sugeries and ~50 parathyroid surgeries a year. Started me on SSKI to prep for the surgery (as a result of conversations between him and my Endo).

I sought a second opinion from a doc that I respect very much. He thought that the precaution lengths that I was given were "non-sense" and that 2-3 days of being away from the kids completely would be sufficient. No prolonged close contact for a week after. We can do a week.

So now, I’m not sure again. I did ask the Endo if taking the SSKI will interfere with RAI. He said yes and I would have to wait 4 weeks to receive RAI. I can’t continue working full time and dealing with this. I was pushing through every day to get to next week….ended up not working today. I am researching my options with my job and will try to decide this weekend.

Has anyone with little kids had RAI recently? I would love to hear your experience.

~mykena

[snelsen]

#1062617

Hi, until you hear from people in response to your post, I suggest you use the search engine again, put in RAI. I recall several discussions about what to do afterward with contact with others. From reading the posts of others who have had RAI, (I chose surgery) I do not recall anything about 30 minute exposure for 30 days.

Either Ski, Kimberly or Bobbi have addressed this in other posts, and of course, what the docs say, enters into this conversation.
Having said that, I think that post RAI precautions are out of the medical knowledge of BOTH the endo and the PA. It makes me think they went on the web to find out info that they knew nothing about? It seem very odd that they are providing this information. You should get that information from the radiologists. That is the only thing that makes any sense to me!

So, if you get this before the offices close today, call the place that does RAI (if you know where that is,) ask how for the post RAI instructions regarding contact.

The other thing you need to weigh (as I realize you are trying to do!) is what to do next. You are prepping for the surgery, you feel confident about the surgeon, and you have learned that you will have another wait because of the SSKI you are taking preop Another thing to think about is to ask yourself if your aunt’s thoughts are clouding your own decision making for yourself.

So those are some of my thoughts. All of us have made this decision, all for our own personal preferences, and/or because all the options were not available because of geography.
I sure wish you luck with the rest of your day YOu will feel SUCH RELIEF when you are dealing with a "known" rather that the conflict you are experiencing right now!
Best, do write again
Shlrley

[Ski]

#1062618

The decision between RAI and surgery is a tough one, and in the end it really comes down to some level of emotional comfort with one or the other. Post-RAI restrictions are based on two different things that go on after RAI. In the first 48 hours, your body is flushing out the RAI that was NOT taken up into the thyroid. For instance, if your scan/uptake showed that your thyroid took up 80% of that substance, you can say that it will take up 80% of the treatment RAI. That means 20% of the treatment RAI is flushed out of your body. That happens in the first 48 hours, and it requires more strict separation from others, especially your children. It is water-soluble, so it ends up being flushed out in our fluid waste streams (sweat, saliva, urine), and so we need to keep others from any potential contact with those substances for those 48 hours.

After the first 48 hours, then it’s the radiation remaining in the thyroid (at your neck) that you need to keep others from experiencing. Obviously it’s not "deadly" exposure, as we are sitting here with our necks attached the whole time. The issue is that radiation is a cumulative lifetime thing ~ you just want to limit unnecessary exposure during your lifetime ~ so keeping your children from being exposed is a precaution for their lives overall. It’s not that something will happen if you "slip" during your recovery, just an abundance of caution where we can exercise it. The RAI within the thyroid breaks down over time ~ it has a half-life of 8 days, so every 8 days after your initial dose, the radiation remaining in your thyroid is cut in half. You can do your own calculations, based on the dose a doctor recommends, to see how long it’d be until that’s a negligible amount (we actually have SOME radiation in our body naturally, just so you know that). In the interim, it’s a matter of keeping your distance, or keeping close-up contact brief, and as the half-life cycles pass, you can relax those distance/time calculations.

Of course, surgery carries risk as well, but can be equally effective, and has the advantage that you KNOW when your body no longer had a functioning thyroid. The RAI takes about six weeks to do most of the damage to the thyroid, but can take up to six months to have all the effect possible (if the initial dose isn’t large enough to do it early on). The newest conventional wisdom is that every patient should get an ablative dose, to keep that time period short ~ if you are truly interested in pursuing RAI, talk with your doctor and also the doctor they would recommend in the radiology department to find out their recommendation for your dose and their reasoning for it. That’s one step I missed, and I regretted it. Communication is ALWAYS better than no communication.

I hope this didn’t just add to your confusion. ” title=”Very Happy” />

[mykena]

#1062619

Thanks, Ski! There is no way you could have added to the confusion. I agree that it is probably an emotional decision at this point. I’m giving myself until Monday morning but I think at this point it comes down to the length of time before I will be well or at least on my way to being well, the convenience factor for my family, and lots of other things that are not directly related to the treatment. At the moment, I am leaning toward surgery again. I really don’t think I can go wrong either way given my circunstances.

Thank you all for helping me sort through things! I’ll keep you posted.

[mykena]

#1062620

Hello. I have decided to move forward with the surgery. I am scheduled for Thursday morning and I am excited! ” title=”Very Happy” /> To lhc11, I bought a scarf today to wear home. Great idea! Thanks again for everyone’s support.

~mykena

[snelsen]

#1062621

Good job!!!! I am sure the stress you were experiencing with your unknown decision…is all gone! You will have a good experience! Mine was great, I loved the definitive outcome in as short a time as possible. It was sure right for me!
Once the decision is made, it is TAKING ACTION! And that is empowering!
Shirley

[lhc11]

#1062622

Hi Mykena,

I am just back to checking the board. With your surgery tomorrow, I know you must be nervous today; I certainly was. The best thing you can do is just try to enjoy today as much as you can, watch a movie or whatever you need to this evening to take your mind off of things. It is so hard to know this before going into surgery, but remember: you are asleep during it! And then you wake up and it is over. And after mine I was starving and gobbled down a plate of meatloaf and mashed potatoes an hour or so after I woke up. You will be fine, and you will be so glad that you went this route. Remember that in the scheme of things the surgeons that do this kind of thing consider it pretty minor, even though it seems huge to us.

We will look forward to seeing you post an update about how well it goes!

Best to you,
lhc11

[mykena]

#1062623

Just quickly checking in to let you know that the surgery went extremely well! I am glad to be on the road to recovery. I don’t start my synthroid until Monday so I’m just taking it easy in the meantime. I am home and my throat is a little soar and voice a little scratchy from tme to time but overall I’m doing great!

~mykena

[snelsen]

#1062624

Hey, that’s GREAT!!!!! Having been there, and done that, I know how you feel. It is such a relief to have made a decision, and have it behind you. I do have a suggestion. When you talk to your endo, ask about the probability of residual circulating thyroid hormone circulating around for a couple weeks. Check it out, for i am wondering if you begin Synthroid this soon, that you might have too much hormone on board, and feel hyper.
Best, Shirley

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