[adenure]

#1059039

Hi all,

I’ve posted my story before- diagnosed 7 weeks ago & took methimazole- 5 mg.- daily. Did wonders for my thyroid, but was doing damage to my liver. So, I’ve been off methimazole 4 days now and I can feel some symptoms creeping back already.

I talked with my endo. today; he’s very patient- called me at the end of the day to talk with me. He is willing to refer me to either a surgeon or for the RAI and says it’s my choice. He said that an anesthesiologist would not perform a surgery on me with my liver enzymes where they are at now. I asked about if I go hyper again and that I read that it is unsafe to perform a surgery when I’m hyper. He said that emergency surgeries are performed when people are hyper, so it could be done, but that he doesn’t recommend it. I thought that an odd wording; I thought it would be out of the question. Also, Kaiser doesn’t have “endocrine surgeons”. He said they do a lot, although he’s not sure how many thyroidectomies. But the surgeons themselves are general surgeons or ENT surgeons. My mom, who is a surgical technologist, isn’t comfortable with the idea of surgery given the circumstances (all of the ones I’ve mentioned above).

My endo. did say though that he thinks that RAI is the better option for me as long as I had someone to care for my children right after. He said that choosing RAI in his mind was a “no brainer” as it is less invasive and doesn’t have as many variables as far as the nurse, doctor, etc etc… (he was very nice about everything and has a great “bedside manner” so he wasn’t being rude when he said it was a no brainer.) I’m just overwhelmed and worried about the RAI. How will it be? Will it just plain suck? Will I feel crappy? I don’t think I have eye issues, it was never mentioned during my physical exam.

I guess I’m hoping for encouragement regarding RAI as it looks as if that is the path I will have to take. I go online and see tons of “don’t do it & I regret it” stories, then I’ll find some that are positive. It’s overwhelming and makes me feel lost.

Alexis

[catstuart7]

#1171716

Hugs to you Alexis. It is awful isn’t it? I’m in a similar place to where you are at I had an allergic reaction to the MMI and just today I’m beginning to think I’m having liver symptoms for the PTU, slight nausea for a couple of days now. I’m going to get tested tomorrow and if I’m right we are in the same boat. I too read all these horror stories about RAI and it makes me scared of that choice, but yet my life circumstances don’t really support surgery at all. Still like you I have read some positive stories and results about it, so it is not a nightmare for everybody. Just remember the people who things go routinely and well for are probably not on the internet writing about it – they are probably just getting on with their lives. Did your doctor say PTU was out of the question for you?

[adenure]

#1171717

Now I just realized that I’d have to postpone RAI because of my breastfeeding! Even if I wean my baby, it takes me months to dry up- the lactation/ breastmilk (because it’s a bodily fluid) will take the iodine into it. There was a story of a lady who did her full body scan after and they couldn’t see her lungs because her breasts were full of iodine!!!!!!!! (from the milk). I can’t take the medicine to stay normal and how can I do surgery if I’m not in normal range? WHAT AM I
GOING TO DO???! I emailed my doctor tonight- he didn’t even mention anything about it- they don’t know much about the nursing component. The Journal for Nuclear Medicine Technology is the one that said nursing women should be “dried up” before getting treatment. Honestly. I understand why now that I think about it. But, if Methimazole is off limits and surgery is off limits, RAI is now off limits too?! God, I need help, wisdom, guidance, and a miracle. I’m so worried now- I don’t know what to do.
Alexis

[Jules]

#1171718

Do not be scared of the RAI, I was in a similar situation RAI was my only option. Yes it sucks but for some of us who can not take the anti thyroid Meds.

You take a pill and then watch your blood results. Make sure you get the doc to check your blood frequently and not just theTSH test. I went Hypo with in 2 weeks and extream hypo in 2 months. Doc was lame on managing my blood. Some people take a few weeks to go hypo some months.

That is my suggestion:
Ask Doc what is his standard procedures for RAI.
When is the first blood test
What labs will be run to test your thyroid levels
If they do no test the free t4 ask that they are done get it in writing that they will test t4 make sure they test frequently.
Ask them for side effects to watch for. I had leg cramps at night when I was going hypo. I had to demand blood draw to confirm.we know our bodies best standard testing might be too long apart for some people.
What Meds will you need to take.
Will you have a beta blocker that you can dose based on symptoms?
What replacement hormone will you be on, what is the replacement dose
What supplements should you take to help you body heal
What is the dose of you RAI 131 mine was 20mci
will they put you on steroids to protect your eye? What dose for how long

Write down all of your questions and get the answers that make you fell comfortable.

These are the questions I would have loved to ask if I knew then what I know now. Hind sight is 20/20

[ncpatches]

#1171719

Aww hon, deep breaths. It seems like ‘when it rains it pours’! I, so wish, I had the experience to give you sound advice, but I’m just learning. I know that Dr’s can give you medication to dry up your milk fairly quickly. Seems like everything has hit you at once and that can be terribly stressful, both mentally and physically and that’s the last thing you need with graves.
After my pre-op appt yesterday (for my shoulder) I was so stressed out last night, I had to call my son to help calm me down. Here’s his advice, get paper and pen, write down all your concerns and who you need to call to get answers, that moves you in the right direction, then today (for me) make those calls and get those answers. He is a very logical and methodical person, didn’t get it from me He says to take it 1 issue at a time, because looking at the big picture can be too overwhelming, especially in situations like this.

Jules gives great advice, make your list and get on the phone or email, try to stay calm. You’ll be in everyone’s thoughts and prayers.

[Bobbi]

#1171720

A couple of thoughts, Alexis. We get intensely more emotional than normal when we are hyperthyroid. Try taking a deep breath, and try to relax a wee bit.

Second: there’s a whole lot of misleading information on the web. DO talk with your doctor about this new information you’ve found, but do not assume that it is “gospel.” I’m not saying what you found out is necessarily bad information, only that you need to assume it may be, and check it out with a professional (your doctor) rather than assume it’s real and let it scare you. Knowledge is empowering, so once you know the objective facts (from your doctor) you can figure out how to deal with it. If the RAI accumulates in the breast milk, perhaps there’s a medication that can be given to help dry it up quickly beforehand? I got mastitis while nursing one of my children, and dried up almost overnight, so I wonder if your thought that you would have to wait “months” for your treatment isn’t an exaggeration. I do hope that is not the case anyway.

[snelsen]

#1171721

Hi Alexis, I know your mind is whirling. With many good reasons. It is a lot of work to even get to TALK to these docs, get the labs, have a new baby, have these issues to deal with at all. I really am sorry that you have to deal with all of this.
Re your baby-I realize that is not that easy to abruptly stop breast feeding from the baby’s point of view. So I imagine that is a worry to you, too. I am not how big a factor it is in your thinking, but if it is yet another confounding issue, then it is very important to consider. Your feelings about continuing breast feeding, or not, matter a lot. I encourage you to tell your docs where you stand on this when you have conversations re RAI vs Surgery.

Jules gave you a nice list of questions when discussing RAI.

I’d like to give some thoughts for you to use as questions regarding the surgical option. It is possible that surgery is not “off limits” as it stands now, but you do need to gather more information, which can only be determined by your labs, your symptoms, and having a meeting with a surgeon to answer every conceivable question you may have. and that is how you will learn this information. In your case, another set of labs will help a lot to guide the docs.
1. What is the prep for the procedure?
2. In my case, assuming I’d have surgery at the very soonest, ten days after the preparation with the potassium iodide drops, who decides whether it is ok for me to have the surgery, based on my labs and how i feel?

I am not sure how you feel right now regarding hyper symptoms, and if you are/are not taking a beta blocker, and if your heart rate is rapid. All of this matters to contribute to deciding if surgery is an option. But from what you say right now, there is not enough information to rule it out. Your endo sounds really nice, but really, he is not the person to tell you that the anesthesiologist would not give anesthesia because your enzymes are elevated. He’s probably the wrong source for that information. And, with each passing day, your liver labs may be going down. Determining the extent of hyperthroid state you are, requires frequent conversations with a surgeon and the endo and frequent labs. The surgeon is the “decider” on doing the surgery. They don’t want to operate where there is relative risk.
There really is not a formal classification of “endocrine surgeons.” There are general surgeons who focus on certain things that they like to do, and/or simply exclude some procedures so they can be very skilled at the procedures they do perform. Thus, the information you need to know about a surgeon you talk to, (and I think you should include this in your decisions) is one who does thyroidectomies, generally around 50 a year is a good number.

So, I am glad it is only Wednesday, you still have three whole days in this week to maybe learn some more. I have mentioned the surgery thoughts only because I encourage you to explore this, see if there are a couple surgeons who perform this procedure regularly, and if you have some interest in this option, with the ongoing information gathering of your liver labs and your thyroid labs, the person to speak with is the surgeon. If they are concerned about the possibility of thyroid storm in your case, they won’t want to do the surgery. On the other hand, you labs could be fine, and it can be the right choice for you.
Thinking of you a lot, Shirley

[adenure]

#1171722

Thank you all so much; yes, I am beyond overwhelmed. I read various sources (nuclear medical journals, doctors) that I should be dried up for 6 weeks before getting any radioactive iodine- whether a scan or treatment. From what I understand, they don’t give the dry up shots anymore bc of risk of stroke. My mom had the shot when she had me, but I know it isn’t offered anymore; maybe in my circumstance it would be? Not sure. Believe me, it does take me months and months to dry up. This is my 4th baby, and my body will produce milk for months after weaning. I have a big supply!

I am going to talk with the surgeon. My husband really wants me to as well, he’s not convinced on the RAI. So, I guess that yes, I do need to talk with the surgeon and see what he thinks and go from there. I’m not on the betablockers right now as my symptoms aren’t that bad. Friday I was in normal range thyroid wise, I feel as if I’ve probably slipped some, but then again that could just be my stress and sleep deprivation right now. I don’t know- I asked my endo. for a surgeon referral today, so we’ll see what happens next. I’ll start the betablockers if needed, and if surgery just doesn’t look good- I’ll wean my baby and just go for the RAI. I just don’t want to wait a really long time to do either treatment.

Alexis

[suecuba]

#1171723

My graves was severe, I had radioactive iodine treatment, but my thyroid continue to act up. Ihad a second episode and found an endo. that has fine tune
the amount of thyroid hormones. I was tested every 6weeks and now is stable and I only need to test every 6months. Alot of damage was done, my eyes, and nerve damage is what I have to deal with now.
Sue

[snelsen]

#1171724

Hi Alexis, what you heard about those shots is accurate.
Regarding the “shot” given to dry up lactating breasts. It was given in the 1950’s for I gave it as a student nurse. We used bromocriptine and estrogen. You are correct, strokes, increased BP, clots (which can and do cause strokes) and heart attacks. They are not used anymore.
You have plenty of other things to think about, and this is not even something you are considering/ But there is plenty of valid literature to back this up.

I think you will find it reassuring to talk with a surgeon. All the treatments are there for us to choose, and all generally work, or if they don’t there are other options in the other choices.

i chose surgery, because I was breast feeding. I wanted to breast feed, did not want to quit. I pumped in the hospital, much more challenging in the late 1950’s and early 1960’s, for women were encouraged NOT to breast feed.
My mother or my husband brought my baby over so I could nurse him. He was not fond of the bottle, even with my milk, but I had to wait 12 hours for all anesthesia to be metabolized. What I really did, however, when he refused Similac, was check with the pediatrician, and he said go ahead and have your mom feed your milk to him, and if he won’t take the bottle, just nurse him, he’ll be fine. Which is what I did. My story. I was ACHING with full boobs, and I barely noticed that I had had the surgery. I was all about my boobs and getting that baby over to my room!
Shirley

[adenure]

#1171725

The next step in the saga here…

My endo. is encouraging me to do the uptake scan, and I hear what he’s saying. Basically, what if I’m part of the 10% who have high antibodies but has thyroiditis and not Graves? Well, I guess that is a possibility. He told me after the initial bloodwork that he was 95% sure I have Graves due to the high antibodies, but that due to the timing of the onset (after having my baby), it’s not a slam dunk. What to do, what to do? I could do the scan (I’d have to wean Zack) and find out what is probably already true and proceed with hopefully surgery. Or, I do the scan and I’m the 10% with antibodies who doesn’t have Graves- I can’t nurse- but I don’t need treatment. I don’t know. Usually thyroiditis clears up by now (within 3-6 months & Zack will be 6 mo. on the 21st). But, my endo. said it can last for a year as well.

I really don’t want the scan; I want to breastfeed what will probably be my last baby. My oldest didn’t nurse and has a terrible time with asthma, wheezing, and a severe anaphylactic allergy to peanuts. My other 2 children don’t have any of those problems & they were breastfed for 2 & 3 years. I want to give that to my baby.

I’ve been referred to the surgeon who is out of the office until Monday. The receptionist printed out my referral and put it in his office she said.

So, how likely is it I have thyroiditis? 95% chance of Graves… ugh, I don’t know what to think anymore.

Alexis

[Rach74]

#1171726

Alexis – I’m sorry to hear what you are going through. I am also hoping my liver results come back ok tomorrow.
Are you able to express enough milk to go without feeding for 3 to 5 days? I read that is about how long you wouldn’t be able to breastfeed for after an uptake scan. You could ask your endo how long they think it would be.
My baby doesn’t take the bottle, so I know if I was in the same boat as you it would be very difficult for her to make the transition.
I hope it all works out.

Rachael

[Kimberly]

#1171727

Hi Alexis – Wow, this is a tough decision to make. We are all fellow patients here, so your doctor is in the best position to give you “odds” on the diagnosis of Graves’ vs. Postpartum Thyroiditis.

If you are interested in doing some further reading on PPT, here is some info from the American Thyroid Association that will hopefully be helpful:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patients/patient_brochures/postpartum.html

Keep us posted!

[adenure]

#1171728

Thanks, all. Rachael, my endo. told me I couldn’t nurse at all following the scan; I’d have to wean completely. The nuclear dept. said the same.

Kimberly,

Yes, this is a toughie! My endo. is going to be out of the office until the end of the month starting Friday. I need to talk with him though as I’ve had a very big blessing if I decide to go the surgery route. My mom has been a surgical technologist for 25 years and knows all the surgeons very well where she lives. She’s also very good at her job and is often requested by them. She told me she wasn’t comfortable with me doing surgery with just anyone. So, she went and saw one of the surgeons she used to work with (before she retired) and explained everything to him and showed him my lab work since all this began. With the numbers the way they are, he’s pretty sure it’s Graves. The amazing this is he said that if I come out there, he would do my surgery the next day or day after- whatever I wanted! Wow. He said I could ask my doctor to prepare me now and he could do it at the end of the month once he’s back from his vacation (he too will be out for a few weeks). I’m really thrilled to have the opportunity to have a surgeon who my mom has worked with, trusts, and knows so well. He was rated among the top 10% of surgeons in the country for 2011.

Now comes the question… what to do? I left a message for him to ask if it’s okay to wait some or should I do this right away? Is there still hope that it could be postpartum thyroiditis? Although, neither my endo or the surgeon seem to think that is the case, but there is that nagging 10% chance… I don’t even think I could get a scan within a few weeks or month through Kaiser. With my doctor being out of the office for 2 weeks starting tomorrow, I want to talk with him about it and talk with the surgeon too and figure out what to do. What if I do wait and start to go hyper again, surgery will be riskier obviously. Do I need to go on the betablockers right now even though my heartrate is fine and I don’t feel too badly? A little “internal” shakiness, but the tremors are fairly minute. I’ve been off the methimazole about 6 days now. I feel the difference, but I’m not really hyper like I was before.

What should I do? Problem with waiting is I can’t go back on an ATD to get normal again due to my liver issue. Should I aim for the end of May, beginning of June? I’m happy, worried, and unsure.

Alexis

[Rach74]

#1171729

Alexis – Thats great that you have access to top surgeons, however it still sounds like you have a lot to think about!

I’m not sure if it applies to you, but the following link indicates that there is an alternative for the uptake scan which allows breastfeeding after about 4 days. If it is not relevant, then I am sorry, but it may be worth some research or a question for the endo?

http://hps.org/publicinformation/ate/q4166.html

Good luck,
Rachael

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