[adenure]

#1059107

Hi all,

I talked with my endocrinologist today. He stands by the Graves diagnosis. So, here are the options:

1. Try PTU. I was really surprised by this one. After 7 weeks on 5 mg. of methimazole daily, my liver enzymes were pretty elevated (200’s & 300’s with normal range in the 20’s). Fortunately, after stopping the meds., my enzymes returned to normal. I told my endo. that I thought methimazole was the safer of the 2 as far as liver issues and he said that wasn’t the case (?). I’m not so sure about this option though.

2. RAI. That is my endo’s suggestion. He asked the nuclear doctors, and yes, there is a chance of breast cancer if I get RAI while still lactating. They will not treat me until I am dried up and not taking up iodine in my breast tissue. He said he’d give me the dry up meds. for a month and then we’d wait 2 months and go from there. I never really wanted RAI, so I’m not super convinced there.

3. Surgery. He said to me and my husband that he knows this is what I’m leaning towards and he said he will support me in that decision. He did say that I have a good window now since my thyroid levels are normal, but it isn’t his first choice.

4. Wait and see; he thinks I’ll go hyper again at some point- might be a few weeks, a few months, maybe longer, but he said he can’t give me a time (makes sense). He’s not opposed to seeing if this is a sort of remission. But, the danger there is that if I go hyper and PTU doesn’t agree with me, then my surgery window is gone. If I don’t wean, then RAI won’t be possible right away either.

So, those are my options. What do you all think about trying PTU after liver issues on methimazole? Is that just prolonging the inevitable of a definitive treatment? Should I just stick with my June 12th surgery date since my thyroid levels are stable? I really don’t want to do RAI.

Alexis

[adenure]

#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

[catstuart7]

#1172206

I’ve been following along pretty closely, so I’ll share what I would do if I were you. Of course I’m not you so of course take what’s useful to you…

I would take nothing at all, continue to nurse the baby, keep getting regularly monitored. Then when/if the levels go up again it is entirely possible I will have already finished nursing the baby or have done so long enough for enough essential antibodies to be passed over to him. Try PTU with careful monitoring and continue nursing if still doing so. If PTU doesn’t work, then wean the baby if still nursing and get RAI while deliberately taking the risk that I will be untreated until dried up. But that worst case scenario assumes that the levels would rise very soon and PTU won’t be tolerable. If it were me I’d take the gamble that that won’t happen. But only you know if you’d take that gamble. I hope that helps!

[adenure]

#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]

#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

[LaurelM]

#1172209

Hi!
My first go around with GD was after my first baby. I was 8 moths postpartum when diagnosed. I was put on methimazole at a pretty high dose at first which taped down pretty quickly. I was able to continue nursing. My daughter was 13 months old when I became pregnant with our 2nd and I develped hives. She self weaned about a month later. Because of the hives and the pregnancy (either would have been sufficient) I was switched to PTU which I was on for a very few weeks of my first trimester. I didn’t keep much of it down due to morning sickness.

What I’m trying to get to is, in consultation with your doctors, it may possbile to nurse safely on the ATD. And, if you don’t tolerate the PTU, you can then wean or choose surgery if possible. My endo wanted me to continue nursing as he felt it was better for both me and our baby but I also know that if medical circumstances had required definitive treatment he would have guided me through the decision.

I don’t know if that was helpful. I hope it was. I know it’s an unsettling place to be in.

Laurel

[adenure]

#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

[snelsen]

#1172211

HI, what a roller coaster ride you are one!
This is what I hear, responding to your questions and thoughts.

1. I understand your concern about having elevated liver labs with the PTU.
My understanding is that methimazole was the first option ADT now, because it has been found that the incidence of liver involvement and low WBC (white blood counts) and or agranulocytosis, is less with methimazole.
Also, if a woman is pregnant, PTU is prescribed. cause is some soft evidence that methimazole does enter the placental blood stream.

I think your own feelings about that are enough reason to stay away from PTU. I would do the same.

2. I did not know about the increased incidence of breast cancer and lactating.

But again, you have never wanted RAI, and now you are put in the position of risking becoming hyper if you don’t take an ATD, of having potential complications of you do take the other ATD, and ending up with RAI which you really have never been inclined to do in the first place. Plus, you do have a choice, and there is not compelling reason for you not choose a TT. That
has never been an issue.

3. From all you have said and written, surgery is still your first choice. You have a scheduled date, you are in a good position to have it now. I believe once you make your decision, you have total support from everyone.

4. I would very reluctant to wait and see. I think you feel the same way. So many unknowns, with the real possibility of being hyper (and from the way you feel, it is not known, but you may be moving a little bit that way right now? But not enough to close a window for surgery.)

And, your questions at the end of your post pretty much reflect the consistency of how you have felt all through this very stressful time. You want surgery, you want it done, to move on with your life. I think this is reinforced by the real issues with the potential of having to stop PTU for the same reason you had to stop methimazole.

I think you already read that I chose surgery, had a great experience, and was in a similar situation with a new baby and breast feeding. I think the other thing I feel about RAI, even now, is I would choose TT because I would not want to risk having a repeat RAI. The whole episode of being hyper for me, was awful. I never want to feel that way again.

YOu have a lot of people suggesting different choices. You really do have a challenging set of circumstances!! Gosh.
Shirley

[hhchong]

#1172212

Hi,
I am getting surgery on June 26th…so, I think my advice to you is obviously weighted towards surgery

For me, I knew that RAI was not an option. I would like to have children in the future and just did not like the idea of putting radioactive medicine in my body. I also have TED, so I did not want to risk making my eye symptoms worse.

I spent two years trying to regulate my levels with methimazole. The frustrating aspect of this process for me was that my body would just react to the medicine differently throughout the year. Having to titrate the dosage constantly was just taking its toll on my tolerance/patience with Graves, not to mention my body. I would go from a TSH of 0.001 to 32! I don’t know if you had this experience?

I am definitely nervous and scared about the surgery (I’ve never had surgery before), but I am excited about just getting on with my life. I know with RAI it can take time for your thyroid to burn out…I think at the end of the day I prefer surgery because I know I’ll have to take a thyroid supplement off the bat and I can just focus on the work I’ll have to do with my doc to get to the right dosage.

When I decided surgery was the route I wanted to go, it turns out I had to wait about 2 months so I could work on getting my thyroid levels normal with my doc. I’m on a pretty high level of methimazole now and it doesn’t feel great! So, my advice is to just do what’s right for you and if surgery is what you want to do, take advantage of this time period where your thyroid is normal.

If you decide to do surgery, I woud love to hear about your experience since I will be going into surgery a few weeks after you!

Thanks!

[paleblue]

#1172213

If I were you, I’d probably go with the surgery, b/c I think that’s what your gut is telling you.

If I were me, I’d wait. You don’t want to take PTU while your levels are normal either. So I’d wait and see. There are a good many women who have a hyper thyroid after having a baby, and it goes away for good after that–my cousin is one of these women. I would have to see if that was my case. I say this b/c I have had 2 people in my family have the surgery–one it was a breeze for–the other not so much.

Your added complication is that you can’t take the methimazole. That’s the tricky part. And then the breast feeding is another factor. I think that is where you and your values come into play. There is no perfect answer, which is good in a way b/c that means there is no wrong answer. You are doing what you are supposed to do by gathering information and listening to your hunches. You’ll make the right decision. Wishing you all the best.

[adenure]

#1172214

Thank you both for your replies I am leaning towards surgery. I know that moms often get hyperthyroid postpartum, but the type that resolves itself is caused by postpartum thyroiditis and not Graves. I had an uptake scan to know with certainty which it was. Thyroiditis percentages are less than 4% on the uptake scan and the thyroid barely takes up any iodine & it takes a long time to get a picture of it. My percentages were 19% & 34% and my uptake pictures were easy to take within 2 minutes. The technician said with thyroiditis patients, it can take up to 10 minutes to get a picture.- so my endo. says that it is not thyroiditis. Believe me, I wish it was. Part of me is tempted to wait and see what happens, but I know that if I go hyper again, my treatments will be limited due to my inability to take methimazole. I could try PTU, but I’m reluctant. If I had liver issues on one, it seems like it would be more likely on the other- I don’t know. Surgery would be out if I go hyper, and that leaves RAI. I know for some it works quite well, but I have a hard time being comfortable with RAI. It’s hard. My husband still is hanging on to the idea that it’s thyroiditis. My endo. though is definitely 100% sure it’s Graves.

Surgery is scary, and I am worried. But, my thyroid levels are in a very good place right now so, I have a window to do this. hhchong, I was only on methimazole 7 weeks (5 mg.) and I leveled out right away after my first blood test at 7 weeks after starting the meds. Of course, along with those lovely thyroid levels were some very elevated liver enzymes- so that really stunk. I was a mess that night as I was told by the doctor on call to stop taking the methimazole right away. But, I have maintained normal levels for a month now. My endo. gives me a few weeks maybe a month. He said I could go longer, but he is sure this is Graves. So, I’m reluctant to wait until I start to go hyper. Some have suggested I do that with the idea that maybe I won’t go hyper for years and years- but with only 7 weeks of ATD’s… I don’t know. I worry about the horror stories I read online and complications, but as my husband says, stop worrying about the “what if’s”. My surgeon is an ENT who specializes in thyroid cancer surgeries, so I feel pretty confident in him. I guess as confident as I can about surgery. He is knowledgeable about Graves too. I’ve had one surgery where I was under general anesthesia before (sinus surgery 3 years ago). I did pretty well with that. Hopefully, I will do okay with this.

hhchong, what prep. meds are you going to be on? I’m supposed to start potassium iodine drops and my betablocker on Tuesday (7 days before the surgery). My heart rate is good, but I guess it’s a precaution for surgery. I’ve never taken a betablocker, so I’m nervous about that. My endo said I can take 1/2 a 25 mg. of Atenolol. Tuesday is kind of my day I have to decide as my endo said that the potassium iodine can “fuel the fire” of hyperthyroidism if taken too long- so if I take it, I kind of feel like, that’s the decision and I need to move forward with the surgery. Nerve wracking.

Alexis

[hhchong]

#1172215

Hi Alexis,

In prep for my surgery, I have to
– Take a higher dosage of Methimazole for 5 weeks
– 10 days prior to surgery I have to take 60mg/day of Propranolol (betablocker) and Lugols drops.

If it’s any consolation, when I was first diagnosed with Graves I had to take 30 mg/day of Propranolol and I actually felt it helped me – I did not experience any adverse side effects.

Hope this helps!

Good luck with your decision. It is really hard not to think of the “what if’s…” but I am on a few boards and all the people who’ve gone for the surgery never seem to regret it, while I’ve read many posts of people who have had RAI and have regretted it. Though I think being off medicine for months would be potentially quite dangerous…what I’ve learned from my experience is that Graves is very unpredictable…even when you’re on medicine.

Take good care,
Holly

[ncpatches]

#1172216

Alexis, I was on beta blockers for yrs, for mild high BP, before Grave’s, never a problem, BP stayed perfect. When I went Hyper and lost 60 lbs, didn’t need it anymore for BP, but was put back on it for the palpitations and it worked fine, but you can tell if it wears off and you’re due for another dose, because of palps, need to keep regular dosing. Keeping your heart rate stable is very important, it helps prevent cardiac issues. If you’re having irregular heartbeat, i.e. palpitations, you need to have something to control it and beta blockers have been around forever and are very safe for the vast majority of people. Obviously, this is my personal experience with beta blockers, but ‘I’ wouldn’t be afraid of them, due to their track record and my own use of them.
Hugz!

[Bobbi]

#1172217

Just a note of comment: heart palpitations are not necessarily a sign of irregular heartbeat. A doctor would need to diagnose whether or not there is a problem. Check something like the Merck Manual of Medical Information, and you will find that palpitations are defined as “awareness of one’s heartbeat,” and that such awareness varies from one individual to the next and that it often does not result from some underlying disease. It can be a sign of underlying disease, but it doesn’t necessarily, or typically. Periodically people have unusually strong contractions of the heart that they can feel. These occur for a variety of reasons. Hence the need for a doctor to diagnose things. I’ve always thought the palpitations that I noticed while hyper were more a result of my heightened nerve reactions to everything. But again, consult your own doctor.

[adenure]

#1172218

I haven’t had any heart issues since having my thyroid levels normal (thankfully). I do notice it do faster 90’s- when I’m anxious. For example, when I get the email saying my bloodwork is in for the week!!! Only lasts a little bit though.

I’m starting to be comfortable with the idea of surgery; now I’m debating on the surgeon here and the surgeon in my mom’s area that she’s worked with a lot. I’m hoping the surgeon my mom knows can take me soon. He was able to take me last week & this week, but I wasn’t ready to make the decision then & I’m not prepped- so, I’ll hear today hopefully about when he could see me. Hopefully I’ll have a decision made solidly today and will move forward with that.

When do you normally start thyroid replacement after surgery? My endo said he’d do a blood test 2 weeks post surgery, but my mom’s surgeon said most of his patients start 3 days after surgery. Levothyroxine (generic) is what my endo normally prescribes, but I kind of want to try the Nature Throid (dessicated thyroid). What are your opinions on that? Should I start with the levothyroxine and see how it goes for me first? I’m 120 lbs. & 5′ 4″- what is a normal dose usually?

Alexis

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