[adenure]

in reply to: I Stopped Tapazole #1177770

I agree- get labs done. Also, do tell your doctor and see what he/ she would have you do now.

[adenure]

in reply to: Gaah! More confused than ever! #1177751

It’s ideal to be in a normal range for RAI bc, from what I understand, the thyroid “dumps” its stores of hormones in your system after RAI. So, you can have a serious surge of hormones that can make you really hyper for a period of time. The less hormone stored, the less severe the dump is.

Sounds like you have a good endo. That is a plus! With RAI, you’d have to be away from your family for 8 days I think? I think that’s what I was told when I was given my options.

Glad to hear you’re on a good path. It will get better. My liver enzymes were crazy high (8 times the normal range) and they were in normal range before I started methimazole, so ATD’s weren’t an option for me. Hopefully yours will be normal and give you time to think it all through.

[adenure]

in reply to: My insurance only covers RAI #1177722

I would do what Kimberly said and consult with a surgeon. Given your mom’s history of breast cancer, you probably have a good case to bring up to your insurance company for pursuing surgery. When you talk with the surgeon, share that info. so he/ she can inform the insurance company. Also, many states offer financial help too. I paid for my surgery out of pocket. I had insurance, but didn’t like the surgeon I had to use. So, I went out of the network. The hospital arranged a payment plan over 2 years (no interest bc it’s medical). The total (in Connecticut) for everything (doctor appointments, anesthesia, hospital, labs etc) was $11,000. It might be worth trying for if you prefer a TT to RAI.

[adenure]

in reply to: Gaah! More confused than ever! #1177749

If I were you, I would start the ATD’s, get labs done in 6 weeks or so to see what your levels are and see how you feel. I did feel better on methimazole. Once you feel better and your anxiety subsides as your levels are stable, you’ll be able to look at all the options without as much fear and worry and make a good decision. I’m not saying you can’t do that now, but it will be easier to think clearly and without anxiety once your thyroid hormones are balanced. I think starting the ATD’s is a good place to start. Also, if you want a TT, you’re going to want your thyroid hormone levels stable anyways bc it will make your surgery safer. Surgery (especially a thyroidectomy) when you’re hyperthyroid is not recommended. Get your levels stable and you heart rate settled (if it isn’t right now), and then go from there.

Like I mentioned before, at my 1st set of labs, my hormones were stable, but my liver enzymes were no good, so surgery it was. But, being on the methimazole for those 7 weeks made me healthy enough for surgery- for that I am grateful! So, as hard as it is, try to be patient while your thyroid levels get stable. If you’re set on surgery, there’s probably no harm in getting a referral to a surgeon or interviewing different surgeons with planning a date. Nothing says you have to go through with it, but maybe the planning might help. I’m a planner, so that sort of thing helps me be at ease I guess.

Hang in there; it’s good your husband is so supportive. Mine is too. Without him, my Graves journey would be a nightmare.

[adenure]

in reply to: Question about your uptake scan #1177744

I was told to eat a low iodine diet for 10 days and no fish for 2 weeks before the scan. I had veggies, fruit, no-salted nuts and nut butter, grilled chicken breast, egg whites, no dairy, lots of plain food. Both my endo & the nuclear doctor told me to do that. I guess it makes sense; if you deprive your body from iodine, once you take the radioactive iodine, your thyroid will absorb it pretty quickly and make the reading easier I guess. It wouldn’t be “dark” (from iodine) from and iodine foods.

[adenure]

in reply to: New and scared – just like everyone else. #1177694

I think that’s why a lot of people opt for surgery or RAI. They get tired of going hyperthyroid again (if they achieve remission) or they worry about going hyperthyroid again! I know that would be me: worrying about going hyperthyroid again. The six weeks I was off methimazole waiting for surgery, I was scared I would go hyper and not be a candidate for surgery. I’m glad I don’t have to worry about that anymore.

[adenure]

in reply to: TT Question #1177717

Hi

I wondered that too. I had my TT 8 months ago and the only thing I’d say is that I have dry eyes (but not bad, I use the over the counter fake tear drops like Systane). I didn’t have eye issues before surgery and (apart from dry eyes) haven’t had anything else. It’s always in the back of my mind I guess, but it seems like I’m doing okay.

[adenure]

in reply to: New and scared – just like everyone else. #1177687

Hi,

I just wanted to give you a big cyber hug and tell you that it is going to get better. I was in your shoes a little over a year ago when I was diagnosed with Graves after my 4th son was born. I had all the same fears and anxiety (in part due to the Graves, in part being freaked out about the diagnosis, and also thinking I’d never be well again). I cried a lot. It was hard to be physically unable to care for my children. My heart rate would go up to 120 walking down the hall; I was a mess. I also homeschool my older 3 boys, so teaching them and caring for my baby was near impossible for the 2-3 months that I was hyperthyroid.

I too was fortunate in getting diagnosed quickly. I was on methimazole (5 mg) daily and after 2 weeks, started to feel somewhat better. 7 weeks later I had normal thyroid levels and felt good! Unfortunately methimazole ran up my liver enzymes quite a lot and I had to stop the medicine. I had to choose RAI or surgery, and I opted for surgery (that was 8 months ago). It’s not perfect, but I am much healthier and happier now! I can care for my family, homeschool, and enjoy life. My complaint is that I get tired more easily and just don’t have the strength physically that I used to have, but I deal with it without too much issue. Evenings are hardest. I need to rest more often, but that isn’t a bad thing. You know how it is with little ones, busy, busy!

When you have your thyroid labs checked, ask for the liver panel (labs) as well just to be sure that your liver enzymes are healthy. My doctor didn’t order them initially, but I asked and am glad that I did! I didn’t have any symptoms, but had issues all the same. It is not likely that you’ll have problems, very few people do, but it’s good to check.

My mom and aunt have hypothyroidism and my great grandmother had goiter, so I think the thyroid issues have a genetic component from what I understand- regardless of whether it manifests itself hyper or hypo.

I was really scared after reading all the horror stories on the web. Especially when I had to choose between RAI and surgery after stopping methimazole. I spent many nights crying in front of the computer. But, I want to tell you that I AM a success story! So, we do get healthier and treatments can make us well again. Stay strong. I found that doing something to distract me in the evenings helped. My husband and I would watch “Cake Boss” and for that 30 min. (when I was hyper and also when I was waiting for surgery- I had to wait 6 weeks after I stopped methimazole), I didn’t think of being sick.

[adenure]

in reply to: Is the Uptake Test Necessary? #1177132

I have to tell you, if that is the case, then I was misdiagnosed. I don’t have (didn’t have) exophthalmos or a thyroid bruit. Yet, I had antibodies and an above normal percentage on the scan. The nuclear doctors told me that postpartum thyroiditis scans are between 1% and 4% for the uptake (mine was above 30% I think). I had the crappy hand dealt where I couldn’t take the ATD’s to wait it out a year to see if it was postpartum thyroiditis or not (as postpartum usually tapers off at that point and normalizes again). My endo. was 100% certain based on the uptake that I had/have Graves- so I went ahead with surgery. Wouldn’t that suck if he was wrong? Oh well, what can you do? My pathology came back as Hashimoto’s. Kimberly, what’s your take? Again, water under the bridge for me, but perhaps it would help someone else.

[adenure]

in reply to: Is the Uptake Test Necessary? #1177130

I guess I still don’t get it if antibodies can be present for both postpartum thyroiditis and Graves. How does one know which is the cause if both can manifest antibodies?

As far as diet interfering with the test, I had to do the “LID” (low iodine diet) for 7 days before the uptake scan. Zero iodine- no salt, no seafood, no dairy, no eating out. I pretty much ate steamed veggies, grilled chicken breast, and raw nuts for 7 days and egg whites. Funny thing was once I was done with the 7 days, the taste of salt made me ill! Eating out for the 1st time after the scan- wow, I realized how much salt is in restaurant food!

The I-125 is radioactive, but it doesn’t destroy tissue. I’m sure the nuclear doctor wouldn’t have let me continue breastfeeding after the scan if I-125 was destructive. They were super careful about it; they had the dose specially shipped from their lab in Texas and labeled with the impurity percentage and that it was specifically for the breastfeeding mom.

I mean, it’s all water under the bridge at this point for me, but I don’t see how postpartum thyroiditis and Graves can be differentiated without the scan. Maybe other thyroiditis types can be, but postpartum manifests itself identically to Graves- including the antibodies.

[adenure]

in reply to: High TSI (700+) post thyroidectomy?? #1177478

I hear what you’re saying, Naisly. But, from a doctor’s point of view, there’s nothing they can do. I think they tend to order labs where a result will give them a path to follow (meds., some sort of treatment). I could see them saying that, regardless of TSI levels, there’s nothing they can do to change that. I guess avoiding environmental stimulants is something we should all do anyway. Stress is never good for the body- whether we have Graves or not. I try to be mindful of stress since going through all of this. I had a few warnings (getting sick with meningitis) from stress in the past, but I guess it took Graves to finally get me to listen! I would love to know my TSI level, but I don’t want to pay for it. If I ever have eye issues (knock on wood), then I’ll probably pay for it to see (like Kimberly said) what phase I would be in or if I ever got pregnant, I’d want to know too. Although, we have 4 boys and are not planning on having anymore since I got Graves after my 4th was born. Just too much on the body I guess.

[adenure]

in reply to: High TSI (700+) post thyroidectomy?? #1177474

I can see why doctors don’t want to test antibodies. From what I understand, the testing is expensive (especially TSI) and I don’t know that anything is done regarding the result- whether positive or negative. I know it’s used to diagnosis Graves initially, but I don’t know that it’s used for much else. Even with high antibodies (if your thyroid has been removed for example), what can you do about it? You know what I mean? I haven’t had my antibodies tested since surgery, although I’m curious. I could see maybe if someone wanted to get pregnant or was pregnant to see where the antibody levels are at bc of the risk for the baby, but for the rest of us, I think it would be hard to convince doctors to do the labs.

[adenure]

in reply to: Possible Methimazole/Graves’ issues? #1177514

Hi Amanda,

I just wanted to give you encouragement to hang in there and stay strong. Keep looking for an endo. who will work with you and listen to you.

Just my 2 cents… but, I had a thyroidectomy bc methimazole was causing me liver issues. It leveled my thyroid levels out, but it raised my liver enzymes 8 times the normal amount (and that was only on 5 mg. a day) in a 7 week period. So, I was pushed into deciding between surgery and RAI fairly quickly. PTU wasn’t recommended since the methimazole is considered safer as far as the liver goes. I don’t know if you’re having liver issues or not, but if it isn’t working for you and you feel like crud, I think talking with your endo. about choosing a more definitive treatment isn’t a bad idea (if that’s what you’re thinking about). Even on methimazole, I didn’t feel super great. Not terrible, but not great. I feel better on Synthroid (after surgery) than I did on methimazole. I also like knowing that the roller coaster ride is over as far as hyperthyroidism goes. I’m not saying surgery is for everyone. Everyone is different, but if you feel like methimazole isn’t working or causing you problems, and your doctor supports surgery, it might be something to think about. I just feel whole again, grounded, normal, and well. It’s not perfect pre- Graves me, but it sure is better than I was when I was sick!

I had weekly labs after I went off of methimazole bc they wanted to monitor my levels closely while I waited the 6 weeks for surgery to make sure my thyroid hormone levels stayed in range (for a safe surgery). I wasn’t on methimazole during that time bc of the liver issue on it.

[adenure]

in reply to: Saw thyroid surgeon yesterday #1177372

Hi!

I understand your dilemma about whether to do the surgery or not. When I went off of methimazole due to liver issues, my thyroid levels were stable. Friends kept saying to me that maybe I would stay stable and go into remission. Granted, I had only been on methimazole 7 weeks! But, every week I had my blood drawn and my thyroid levels were stable (for the 6 weeks I was off medication and waiting for surgery). I was only on 5 mg. of methimazole that 7 weeks and being stable 6 weeks, every once in awhile I’d think, maybe I don’t need this surgery… My problem was that if I went hyperthyroid again, I’d be up the creek since I couldn’t take the ATD’s bc of the liver issues. So, I went for it, and I’m very, very happy that I did. It did take a good 4 months to feel good on Synthroid, but I go to sleep and I SLEEP!!! I wake up, and I look forward to the day. I teach my children (I homeschool), exercise, keep up with my toddler and enjoy life. I don’t think about my heart rate anymore, I’m not anxious. It’s awesome to actually live my life and NOT think about any health issues bc I’m healthy again! Is everyday perfect? Am I 100% pre- Graves me? Not exactly. But, pretty darn close! So, for me, surgery was the way, as Shirley said, to move forward. To get on with life. For others, ATD’s and RAI to do that, but if you’re considering surgery to just be done with the hyper rollercoaster, go for it!

[adenure]

in reply to: No patience for meds. Thinking about insisting on TT #1177419

Hi Karen,

No, you’re not crazy. You’re hyperthyroid, and THAT makes us feel like we’re crazy! I’ve been there; it’s scary and you feel like there’s no end in sight and that you’ll never be normal again. I understand you 100%. I used to sit on my couch/ bed and cry because I couldn’t do anything. My heartrate jumped to 120 walking down the hall, I couldn’t be alone bc of the anxiety, I even had my husband sit on the toilet while I showered bc I was so anxious. My mother in law watched my children for the 2 months I was a mess or my husband worked from home. It was terrible. Methimazole got me back to normal for the most part, but it gave me liver issues (elevated enzymes- quite high), so I had to stop the methimazole and make a choice. I opted for surgery, and I’m very happy with my choice. I now take care of my children -all 4 of them- and homeschool them and have the energy to enjoy my family and my life again. I am so grateful. And, I shower all by myself too! Hee hee!

I do agree with your doctor that you should try to get your thyroid levels a little more in check before surgery. Surgery puts a stress on the body and cutting into a thyroid that is very vascular and hyper can make a thyroidectomy riskier for you. Also, you want your heart rate to be stable and normal (whether through betablockers or the methimazole) to be safe as well. I know it sucks waiting, but you want to be as safe as possible and have a successful outcome.

I started Synthroid 2 days post surgery and my dose was increased around 6 weeks later. I’ve been on that dose since (I’m 8 months post TT), and am doing well. It did take a good 4 months or so to feel strong and well again after surgery, but all the anxiety and hyper issues went away pretty quickly. Everyone is different, but if your doctor supports your choice, I think surgery is a good option. Good luck to you. Hang in there- it does get better, and life improves.

[Author]

Posts