[adenure]

#1059031

I posted about my liver tests and that I cannot take methimazole. I am retaking the enzyme tests Monday (after stopping the ATD tonight- Fri.) to see if the levels come down. My guess is PTU is not an option bc of what happened with the methimazole.

If I had my choice, I would opt for the surgery, but from what I understand, my levels (thyroid) have to be normal for that. Being only on methimazole 7 weeks, I’m not sure where they’re at now- I haven’t gotten those results back yet. Could I still have surgery even though I had to come off the drug- if my levels are not normal? I don’t want the RAI for different reasons. I have 4 young boys including a baby that I’m breastfeeding and I don’t want to have to be away from them for any amount of time. Am I right in that I’d have to not be near them for weeks after RAI? I know a few people who’ve done it and had negative experiences with it and don’t recommend it; I know that for others it’s worked too, but for me- I just feel inclined towards the surgery. I just don’t know if it will be possible or not. How “normal” does my thyroid have to be? Is there a way to do the surgery if I’m not in range? Is it allowed? I’m so discouraged about the methimazole not being tolerated. I had (what I thought) was lower back pain/ muscle, but the doctor says it’s probably related to the liver problem along with the nausea I’ve felt on and off the last few days. My fever was only 99.2- not too bad. I guess the good thing is we’ve caught it and are hoping to reverse it now. Hopefully Monday will show my enzymes getting back to normal. I’m just really discouraged.

Alexis

[Bobbi]

#1171665

Hi, Alexis. I am so sorry to hear that the ATDs (your preference) are making you sicker.

Apparently, surgeries — ANY type of surgery — while hyperthyroid is significantly more dangerous to the patient than it would be otherwise. Surgeries on the thyroid while hyperthyroid, are even more dangerous. So, if your doctors tell you that surgery is not an option, I think you need to listen.

As for RAI. Well, you would not be able to continue breast feeding your baby. I don’t know for how long. You would need to consult the doctors. It is my understanding though that any RAI that does not get taken into the thyroid is eliminated from the body within a few days. Whether or not that includes breast milk, I don’t know for sure. I mean I KNOW that you would have to stop for a period of time. How long is the unknown. It might be a short period, though, (weeks) with you being able to use a pump to keep your milk flowing. The issue hasn’t come up here on the board. I will say though that babies do thrive on bottled formula, if that is what the outcome had to be. It isn’t what you want, but we cannot always get what we want. Sometimes, we have to bend a bit.

As to how long you might have to be remote from you children: it depends upon the dose of RAI needed to get you well again. Some folks online seem to combine the recommendations for thyroid cancer patients and Graves patients. But thyroid cancer patients get tremendously bigger doses of RAI than we do. Many, many times bigger doses. So, their restrictions are not typically our restrictions. We are typically told to keep a space between us and small animals and children. You would not be able to hold your baby for, perhaps, a week. The doctors involved will tell you how long. My recommendation is that you think of it as a “vacation.” Or even plan a few days at the beach to make it a vacation. People DO leave their babies for a few day to take a trip, and the babies survive.

I tend to do better with facts than with anecdotal (people’s stories) evidence, so I will share what I learned about RAI with you, in case it will help. RAI is very soluble in water. And the ONLY place in the body that utilizes iodine is the thyroid. So the RAI dose we take either gets planted in the thyroid, or it is excreted from the body (urine, saliva, sweat) within two or three DAYS. While we are eliminating any excess RAI, we are given special “handling” instructions: double flushing, using throw-away eating utensils, etc. This is to prevent other people from being exposed to unnecessary radiation of any type. Radiation exposures are cumulative in a lifetime. Today’s sunburn gets added to last year’s chest xray, gets added to your time on the airplane and so forth…..

RAI has a half life of 8.1 days. What that means is that after 8.1 days half of the dose that made its way into your thyroid is gone. After two weeks, three quarters of it is gone. After three weeks, seven-eighths of it is gone. And so on. Scientists sometimes create an arbitrary ending of a radioactive substances “life” as five half lives. So after 40.5 days (just a bit over a month, or five weeks) the RAI is, to all intents and purposes gone.

So, the recommendations that your doctors give you will be based on this knowledge.

Right now Alexis, you are really sick. And if the meds don’t work, your life is threatened. Your children need a mom. And not just any mom. You. So don’t plant yourself into a corner (saying you don’t want X — in this case RAI). Focus on how to make it work for you if that is your only choice. It’s the pits that you might only have one choice — not really a choice after all. But if it can make you well again, you need to grab it and go for it with gusto.

Sending hugs.

[catstuart7]

#1171666

Alexis so sorry to hear about the methimazole not working out! About surgery I thought I had read somewhere that they can use iodine Lugol’s (?) drops to shut down the thyroid beforehand. I wonder would it work for you? I sure hope you find a solution that works for you.

[ncpatches]

#1171667

Prayers for you adenure. My Dr told me when we were discussing my shoulder surgery and numbers, that there is something they give people so they can have emergency surgery in situations with graves, but that mine, of course, isn’t an emergency, so I’m on the high dose of ATD to try to get it as right as possible, hopefully to avoid postponing the surgery.
If it was only for a few days, couldn’t you express and refrigerate some milk? Also there are ‘milk banks’ where other lactating mothers contribute to help other mothers in situations like yours. There’s a possibility. But you have to realize that once a child has taken nothing but a bottle for a period of time, it’s hard to get them to go back to the breast, takes much more work to get milk from the breast, the bottle is easier, but you could still express and bottle and your baby will still get the benefit of your natural milk. I breast fed one and bottle fed one, they both thrived. I wanted to breast feed the 2nd, but had to be back at work to support my 2 babies. You got some good advice, just you being MOM is more important than method of feeding, although I’m sure it would be disappointing for you not to be able to breast feed. Taking care of YOU and being there for them, is much more important. ((HUGZ))

[adenure]

#1171668

The bitter sweet part of all this is that (in the 7 days), both my TSH & Free T4 have returned to normal- TSH is 1.46 (it was .01 with the normal range being .35- 4.00). My Free T4 is .9 (is was 1.92- normal range .81- 1.54). So, my next question is, how long will these numbers last off the methimazole? What’s my window for surgery? Does anyone know? Yes, I have been emailing my doctor over the weekend to get my thoughts out to him- so I plan on talking with him come Monday, but waiting is hard.

Alexis

Yes, I will do whatever I have to do to stay normal, even if I have to wean my baby. My 1st son was bottle fed after a month of nursing. So, I will survive and so will he, this I know. It’s just hard. But, one day at a time and trying to stay positive.

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