[adenure]

in reply to: Okay. What would you do? #1172210

Thanks Laurel. I had to stop methimazole because it was damaging my liver, not because of the nursing. I did nurse while taking it. My concern is that if methimazole on only 5 mg. damaged my liver, wouldn’t PTU do the same? My endo. doesn’t necessarily think so. I know I can nurse on PTU. I just worry about starting PTU if I go hyper again, finding out it hurts my liver than being stuck without any options since surgery while hyper is not suggested and if I continue nursing (which I want to do), I’d have to wait for the RAI for 3 mo.

Still have to think it over- leaning towards surgery while I’m normal right now, but my husband wants me to wait and see what happens. That’s a hard way to live though.

Alexis

[adenure]

in reply to: Okay. What would you do? #1172208

The other thing is that even though I’m in a normal range, I don’t feel so great. I don’t feel nearly as bad as I did when I was hyper obviously, but I don’t feel like myself. My heart rate isn’t “my normal” and I still have the odd sensation that breathing is labored at times (even though physically speaking it isn’t). Of course a lot of it is probably the anxiety and indecisiveness of all of this.

Alexis

[adenure]

in reply to: Okay. What would you do? #1172207

Thank you for your thoughts; I do like to hear what people would do. It helps mull things over. I was talking with my husband and part of me is so tired from all this that I’m inclined to do the surgery and try to move forward with my life. My husband thinks I should wait as well, get my blood work done and see what happens. My worry is that if I do go hyper and PTU causes me issues like methimazole did, I won’t be a surgery candidate anymore and I’ll still be lactating (most likely as I nurse quite awhile) and doing RAI will be a good 3 months away while being hyper. Even on betablockers that long, that isn’t a good thing. So, I feel like I have this looming hyper state above me and it’s only a matter of time (from what my endo. believes). I feel like a sitting duck of sorts. I’m not a big fan of feeling like a sitting duck. My husband is still hanging onto the thyroiditis idea; I hear my endo. and his reasons and I believe him (as much as I’d like to think otherwise) that it’s Graves. He did say maybe I’ll be fine for a few weeks, a few months, maybe even 4-6 months, and that would be great— but… he’s of the mindset I need to consider which avenue I want to take. I wish I could know if PTU would be safe; I’m inclined to believe it wouldn’t be. I mean if 5 mg. of methimazole (which I believe is the safer of the 2) messed me up, it seems like PTU doesn’t stand much of a chance. I don’t know though. My endo. doesn’t seem to think the 2 meds. have anything to do with one another– not that he’s suggesting that route, but he’s not opposed to it.

Alexis

[adenure]

in reply to: Okay. What would you do? #1172205

Also… if I did decide to try PTU, I’m guessing it doesn’t make sense to do it now as my range is normal? Would I wait until I was hyper again or take it to prevent that from happening? I didn’t think to ask my endo. It sounded like it would be done now to prevent me from going hyper- but I’m not sure.

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172166

No ultrasound yet. The scan did show nodules on one side though.

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172164

Thank you- believe me, I want to do that very much, however… because I can’t take the ATD’s, if I do go hyper, my ability to control the Graves is pretty much out the door. That’s what makes this tough.

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172162

Thank you for the information. I appreciate it!

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172159

Got my labs back from yesterday (1 month off methimazole) my free T4 is the same as last week- steady & low. My TSH has gone up again- now it’s 1.28 (from 1.17 last week and 1.14 the week before). If I am off methimazole more time, yet my TSH keeps going up (although minutely), how is it that I have Graves? I emailed my endo. today with that question along with asking him about why his fellow endo’s in the office thought there was still a possibility for post partum. The doctor I talked to while my endo. was out said the patchiness in my scan and an increasing TSH would be indicative of thyroiditis. So….. if my TSH is slowly increasing week by week, what gives? I hate to be a pest to my doctor, but taking out a thyroid is a pretty big deal if you don’t have to.

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172158

I know the general surgeon’s name who does the thyroid surgeries, but I have no idea if he has a date sooner than the 12th- probably not. Again, time is a bit of the essence here as I’ve been off methimazole 1 month and have managed to stay within normal range. I don’t know how long I’ve got for that. If I start to go hyper again, I will seriously have to reconsider surgery and roll the dice with RAI and lactating I guess- but I’m REALLY hoping it doesn’t come to that. I asked for a specialist for the surgery since I thought he would have more experience than a general surgeon. Again, I don’t know that there are a lot of Graves referral for thyroid surgeries, but I do know that this surgeon specializes in thyroid cancer and seems to know his stuff. I understand his approach of “if you can avoid me, you should.” ie… if you can avoid surgery, you should due to it being invasive and having risk complications and all that, but he also said that if surgery is needed, he is the guy. There’s something about a slightly arrogant surgeon that is comforting. I’ll leave bedside manner to the nurses.

Believe me, if I wasn’t lactating, I would consider RAI, although I’ve always leaned towards surgery for some reason. Yeah, waiting 3 months just doesn’t seem wise.

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172155

Yes, I know, but I don’t understand WHY. The answer to why from my endo. was that RAI is less invasive, less variables with nurses etc and that on Graves patients, thyroidectomies are risky. As he said, “If it were my wife, sister, I would encourage her to do the RAI.” But, people do get thyroidectomies because they have Graves, right? I understand the reasoning behind having your hormone levels stable for surgery. I’m getting weekly blood work to check that and so far, my levels are normal. So, why?

Plus, it seems odd that my endo. is willing to find a nuclear doctor who will give me the RAI if one won’t due to me lactating. I mean, if one won’t do it because of the possibility of iodine pooling in my breast tissue, why should I accept it from another doctor? Doesn’t it pose the same problem regardless of who prescribes it? I don’t get it.

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172153

It was the scan numbers that he based it off of. I guess thyroiditis numbers are less than 4% where mine were 19% & then 34%.

As far as risks, I guess it’s the idea that I’m a Graves patient and that poses risks. The surgeon likened it to driving on a sunny day compared to driving in the fog. Something about the vascularity of the thyroid can make it harder to navigate or something. I would be taking potassium iodine drops 7 days before surgery to help with that I guess- along with 1/2 an Atenolol for heart rate. Although my heart rate is in the 70s if I’m resting. Lately, it’s been higher due to all this stress & anxiety about everything though.

As far as another endo., I have Kaiser. So, I’d have to stay in that office. I could go to another endo. I guess, but I’ve talked with other surgeons just to get opinions, and the few I’ve talked with say my endo. is very good. I don’t doubt that, but it’s hard to hear how I should be reconsidering surgery. I really had that in my mind as the way to go- even before I found out the methimazole was causing me problems.

When does a person usually start the thyroid meds. after surgery?

Alexis

[adenure]

in reply to: Overwhelmed, frustrated & worried #1172151

Also, when do you normally start the thyroid hormone medicine after surgery? My doctor said he’d do blood tests 2 weeks after? It seems like a long time.

Alexis

[adenure]

in reply to: Getting a total thyroidectomy in 4 weeks….naturethroid or synthroid? #1172107

Ditto! If I need surgery, I was wondering all the same things!

Alexis

[adenure]

in reply to: Shirley- Surgery, lugol’s & breastfeeding #1172057

My pediatrician told me not to breastfeed while I take the drops (if I end up needing surgery). : _ ( I’d have to wean for 10 days. I’ve tried so hard to keep breastfeeding through the scan and all of this. I really hope I won’t need surgery & it’s post partum related, but I just don’t know. I hope to talk with my endo. tomorrow. My pediatrician is a wonderful person and looked into it. She said that the drops would effect his thyroid, but that whether it’s short term or long term is not known, so she didn’t want me to risk it. I’m sad and hope I can keep a supply going for that long just pumping. I don’t have any milk stored as I used it during the 4 day scan weaning. I can’t get a let down when pumping usually so I only get an ounce or 2 pumping. I’m really down about it, but trying not to let it bother me too much since I don’t know what’s going to happen yet.

Alexis

[adenure]

in reply to: What is your (non-professional) opinion? #1172094

I talk to my endocrinologist tomorrow. My concern is that if I go hyper again (bc I have Graves), I won’t be able to get back to normal levels bc I can’t take ATD’s. I took 5 mg. of methimazole daily and my liver enzymes shot through the roof within 7 weeks. They are normal now, but my endo. doesn’t want me to go back on them. I get an ultrasound tomorrow of my liver to make sure all is well. I know surgery is safest when we’re in normal range, so I’m hoping for a diagnosis so I know what to do. They’re monitoring my TSH weekly to see if I end up inching my way towards hyper again. I don’t know. I really don’t. I would love for this to be postpartum caused, but I’m not sure anyone’s convinced it is nor are they 100% convinced it’s Graves (minus 1 nuclear doctor). I’m just confused, tired, and want an answer.

Alexis

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