[adenure]

in reply to: Achy and paranoid… O.O #1176245

Stacy,
I just want to let you know I hear you there on worrying about aches, pains, and anything else that comes my way! I’ve tried to be better about it, but especially when my thyroid hormones were whacked out, I was convinced any bad or sick feeling I had was some terrible illness. I even pushed my doctor to get a CT scan of my brain bc I had light headedness, woozy, off feeling for a good 4 months post thyroidectomy and the entire 8 months I dealt with being hyper or being on ATD’s. I was convinced there could be something seriously wrong! Turns out there wasn’t. I agree with what everyone else has said. Maybe give it a week or 2 and then go to the doctor if you’re not better or sooner if you get worse. It’s most likely a cold or flu though. Hang in there.

[adenure]

in reply to: breastfeeding moms, can you continue after surgery? #1176160

SSKI drops- potassium iodine. Here is a link. Note the next to last paragraph:

…Because potassium iodide has significant risks associated with its use, particularly in breastfed infants and newborns, mothers should avoid using it if at all possible.” Dr. Thomas Hale- he is a noted physician in the area of studying medications and breastmilk. He has classified medications based on their safety for nursing infants (L1, L2, L3 & L4 classifications). He has done extensive research and studies; so, he is one to be trusted.

http://www.infantrisk.com/content/potassium-iodide-radiation-exposure

Again, ask your pediatrician to be sure.

[adenure]

in reply to: PTU vs MMI & pregnancy vs. the vast & terrifying world of the internet #1176176

Hi Enid,

I understand your fears. I’m not a big pill person either. I took methimazole while hyper, but had to stop bc the methimazole messed with my liver enzymes pretty bad; fortunately it was caught with liver labs 7 weeks into it and all is well now. I had a thyroidectomy 6 months ago and am doing pretty well.

I have never been through pregnancy on ATD’s (I was diagnosed after my 4th baby was born). However, I do have a good friend who was diagnosed with Graves after her 1st baby was born and she continued to have 3 more children while taking either methimazole or PTU over the next 10 years off and on. All of her children are healthy and fine. I do believe that PTU is recommended for the 1st trimester and methimazole is seen as okay for the 2nd and 3rd trimesters, but obviously, do get your doctor’s approval before doing any of the above.

If it were me, I would try the PTU for at least 2 months to make sure all was well with the medicine and my liver before trying to conceive. Last thing you want is to find out PTU is causing you liver issues while you’re pregnant, have to stop it, and not have an option to keep your thyroid levels in check bc you can’t take methimazole, have RAI or surgery (because of being in the 1st trimester). If the PTU does cause liver issues, it’ll probably be in the first months that you are on it and having a liver panel lab work up will detect it easily enough. Once you’re safely taking PTU (if you decide to do that) for 2-3 months, then I would think you could look towards conceiving with confidence. Then, if your doctor allows it, and you choose to, you can go back on the methimazole for the last 2 trimesters. You can also breastfeed on either of the meds. as well.

If you’re really dead set against PTU, you could consider surgery or RAI. But, from what I understand, you are supposed to wait 6 months to ideally (my lactation consultant friend that I mentioned up above said) 1 year to conceive. If you opted for surgery, it would probably be recommended that you’re hormones are balanced out on Synthroid after surgery before conceiving (same with RAI). For me, it took 4 months to have my levels balanced out post surgery (1 dose change). Actually, it took 2 months for the numbers to be right on the paper, but it took 2 months on that dose for me to feel better.

If you’re looking to conceive sooner than later, it seems that giving PTU a shot is the answer. I really would give my body some time on it though to make sure your liver agrees with it and your hormones are stable on it before conceiving though.

[adenure]

in reply to: breastfeeding moms, can you continue after surgery? #1176156

Shirley,

I completely agree. Breastfeeding is amazing, and it is completely understandable why we moms will fight tooth and nail to continue nursing through the most difficult times in our lives! So many don’t understand it (especially those who have not nursed a baby). Yes, a baby needs a healthy mother first and foremost, but if it can be accomplished while breastfeeding, we’ll figure out a way! It’s more than just food, it’s a connection, and (as I told my mom), I have enough crappy hormones zipping through my system, I want to have the good hormones from breastfeeding going through my mind and body! Oxytocin is a big “feel good” hormone and relaxer that those of us with Graves really need: to relax and feel good! I wasn’t about to let go of that aspect of it if I didn’t have to!

Yes, pumping and dumping was hard. It was hard breastfeeding my little guy for his nap and knowing that after that nursing and snuggle time, I would not be able to nurse him for 7 days . Wondering if he’d want to nurse again after that week- along with the stress of prepping for the surgery and trying to stay calm for it (all the while off my ATD’s and hoping my hormones would stay in check). It was stressful. I pumped and dumped every 3-4 hours for 7 days. But, it was so very worth it.

[adenure]

in reply to: breastfeeding moms, can you continue after surgery? #1176154

Hi

Yes, I breastfed after surgery. I took the SSKI potassium iodine drops for 7 days before my surgery. My pediatrician told me not to breastfeed during that time (I know Shirley did though). My pediatrician said that the drops do effect the baby’s thyroid, but that it is unknown whether it is temporary or could have a lasting effect. So… I pumped and dumped with a hospital grade pump for 7 days- ugh! I did it though and was able to breastfeed after surgery and, 6 months post surgery, I am still breastfeeding my now 13 month old! So, yes, it can be done!

Like Shirley, I never went very hypo at all. I was started on 100 mcg. of brand Synthroid on day 2 after surgery. Six weeks later, my labs showed a TSH of. 6.35 ish, so I was upped to 112 mcg. 2 weeks later my TSH was down to .78 or so and 2 months later around .69. So, I never really went very hypo at all and my supply was not effected. The general anesthesia DID essentially dry me out completely for 24 hours (at least it felt like that!) But, I just pumped and nursed a whole lot for a day and nursed constantly after that and was fine. It isn’t easy, but if nursing is important to you, you can do it. Shoot, you’ve braved the Graves journey thus far, you can handle the surgery and the breastfeeding (even if you temporarily wean for the SSKI drops). That was, admittedly, a very difficult week for me. It was really sad as I didn’t know what would happen, but my little pumpkin was very happy to be breastfeeding again after that week, and it was a wonderfully amazing moment to be nursing again. Good luck to you!

[adenure]

in reply to: That didn’t work out… #1176131

Wow! I am sorry you dealt with all of that! I hope your doctor can get you back on track to health. I had the same liver issues with methimazole (although I didn’t deal with any other issues). I stopped the methimazole right away and fortunately stayed euthyroid long enough (6 weeks) to have a thyroidectomy. Are you going to choose surgery or RAI since the ATD’s don’t seem to be the right route for you? I didn’t opt to try PTU after the liver issues on methimazole since PTU has a worse track record for that. I hope that your New Year will be at least a little bit better! Good for you for listening to you body. Who knows better than the one living in it right?!! I hope you feel better slowly but surely. I keep putting out the idea of acupuncture out there. It really helped me get more centered and relaxed; if you can do it (complimenting western medicine, not in stead of necessarily), it’s worth a shot just to get some balance back. I think our bodies, to an extent, can heal themselves. The acupuncturist told me the body can heal itself of most things EXCEPT tissue damage. She by no means said that a person should do acupuncture instead of ATD’s, RAI or surgery, but said that it can help a lot with getting well again.

[adenure]

in reply to: Diagnosed in July, had RAI, on Synthroid, feel crazy. #1176092

Hi Bernadette,

I just wanted to chime in and give you some support. First, you are not crazy. Just because you had RAI and are on Synthroid doesn’t equate to a magic act “poof” all better type of scenario- which, sadly, some doctors would have us believe. I had really bad anxiety when I was hyper. I was on methimazole briefly (7 weeks), but I had to stop bc of adverse effects on my liver (elevated enzymes 8 times normal). I had a thyroidectomy 6 months ago. I STILL had bouts of anxiety (although not as bad) after surgery until the Synthroid was dosed correctly AND I had spent 2 months on that dose. I was fortunate that I only needed one tweak. I started at 100 mcg and was upped to 112 mcg. 6 weeks later. Two weeks after my dose increase, my numbers were fine, however, I did not feel fine. It was really nerve wracking. I still had some anxiety (mostly a “constricted breathing” feeling), light headedness, kind of off feeling, headaches- almost daily, and insomnia. However… about 2 months after being on 112, pretty much all of the above symptoms have subsided. It’s not perfect, no. Not pre- Graves “me”, but I am well enough to care for my family, homeschool my 4 boys, exercise, and enjoy my life again.

I would try to give the Synthroid a little more time. Get your thyroid hormone balanced and then give it at least a few months there and see how you feel. My TSH is around .68 I think and my free T4 is in the upper normal range. I don’t know my free T3 as Kaiser doesn’t offer that test.

Also, have you looked into some alternative treatments too? I tried acupuncture while I was going through the recuperation and having issues with the symptoms I mentioned above. Acupuncture really just helped me relax a whole lot. I never felt so relaxed and calm in my life. When I went into my appointment, I sat there and cried explaining everything I was dealing with. An hour later, I was so calm and profoundly peaceful- it was pretty amazing. If you can do it, it might be something to look into. Try to treat yourself to something to put a little fun in the day- a funny movie, frozen yogurt- little things can help too. But, hang in there and find the doctor who will help you. I’m kind of in the same boat. We’re switching out of Kaiser to Blue Cross after the new year. So, I have to find a new endo.! I’m in San Diego and am hoping to find someone great. The one I had at Kaiser was pretty good, but there are more choices with doctor and providers with Blue Cross. So, the adventure begins…

[adenure]

in reply to: new to hyperthyrodism and graves disease #1176025

Hi,

I agree with Shirley. I would start the methimazole as soon as you can. You have been diagnosed with hyperthyroidism and your labs do reflect that. The methimazole will get you going in the right direction and help you to start feeling better. It will definitely help your heart rate as well. When I started methimazole, my heart rate hovered around 100 and could get up to 120 walking around the house. Once I started methimazole, it went back to my normal resting, in the 60’s. I was on 5 mg.

When you have your labs drawn, ask to have a liver panel just to check your enzymes. Sometimes (rarely) methimazole and PTU can cause your liver enzymes to rise quite a bit. That happened to me and I had to stop the methimazole at my 7 week labs (I didn’t have the typical symptoms of elevated liver enzymes like sore throat or dark urine or jaundice or fever). The medicine is powerful though as my my thyroid levels were normal within that time. I had a thyroidectomy 6 weeks later (about 6 months ago) and am doing pretty well now (I’m on Synthroid).

Good luck to you.

[adenure]

in reply to: Diet & Graves Disease #1175376

I don’t think food has much to do with it, although certain foods can help our bodies be healthier and heal better. But, I wouldn’t blame Graves onset on food. I think genetics and stress tend to be the triggers. For me, it was child birth and stress together along with the physical stress of a bad reaction to an antibiotic Whammo! I always ate pretty healthy, but I try to do even better now. I had a thyroidectomy 6 mo. ago and getting Graves made me realize that I need to try my best to take care of myself and not stress so much about things. I’m working on it… I really like fresh vegetable juice. Wish I had a juicer! I go to Robek’s and get a freshly juiced beet, apple, orange, spinach, kale, celery, parsley- you name it- combo. So good.

[adenure]

in reply to: Going to get RAI in a few minutes #1175970

How are you doing so far? Congratulations on taking a big step to being well again! Stay strong.

[adenure]

in reply to: I Definately have GD ;-(…. #1175963

Hi,

I’m sorry about the news. I know how hard it is to hear. I cried the whole way home after my scan results (I was really hoping it was postpartum thyroiditis), but I just wanted to say that once you find the right treatment, you will get better. I was on 5 mg of methimazole for 7 weeks before having to stop it bc it caused liver problems for me (which is now totally fine- no long term problems). They figured out I had problems with methimazole from liver labs. I had a thyroidectomy 6 weeks later and am now 6 months post surgery and doing pretty well!!! I did not gain any weight on methimazole nor have I since my surgery. I take Synthroid everyday and live my normal life. It’s not perfect, but I’m much, much better now than I was before. I work out and do hard cardio 5 days a week for 30-40 min., eat healthy, sleep pretty well for the most part and am grateful to be well again. I get tired more easily I guess than I did before, but it forces me to slow down, which isn’t a bad thing. It will be okay.

[adenure]

in reply to: Kaiser San Diego, CA? #1175941

Hello!

Yes! I am with (until the end of the year) Kaiser, San Diego! How about that coincidence! I was diagnosed with Graves a few months after joining Kaiser and was very fortunate to have a great general practitioner who ran the right tests and diagnosed me quickly. I was referred to a very good endocrinologist who helped me, communicated well, and got me well again through many ups and downs! I will PM his name to you. I only saw him and anytime I had a question, I emailed him and he responded that day by email or phone. He worked with me as far as the way I wanted to handle my treatments and always took the time to talk with me.

I am changing back to Blue Cross Blue Shield at the beginning of the year because I like being able to have the ability to choose to go to any doctor/ facility that I want – not just for me, but also for my entire family. What I will say about Kaiser is that you CAN find a good doctor who is thorough. I had great doctors who always were willing to run tests and were very good at communicating. The online, kp.org, email system is great. You get your labs emailed to you within 48 hours and everything is really easy and accessible. It’s not bad. I really thought long and hard about switching out of Kaiser, but like I said, I wanted the freedom to not need referrals and also to have a wider choice of providers. But, I will say that my experience, for the most part, has been very good with Kaiser- general practitioners, endocrinologist, pediatrician, and ER doctors/ nurses.

Alexis

[adenure]

in reply to: Doctor won’t run CBC and Liver tests while on Tapazole #1175429

Well, that stinks! It might be that it isn’t necessary or doctors are willing to wait for symptoms and all, but I’m glad I got those labs run!

Catstuart, you’re right. I had NO symptoms at all that my liver enzymes were as high as they were. I had a very normal baseline right before starting methimazole. At my 7 week labs (after starting) my enzymes were 8 times the normal amount. I had no fever, jaundice, dark urine, sore throat etc etc… Needless to say, the doctor on call told me to stop the medication that night and get liver labs again 3 days later to make sure the enzymes were coming back down (which they were). Then I had labs a month later (they were back to normal) and an abdominal ultrasound.

If I had waited for symptoms, I hate to think what they would’ve been after more time on methimazole. I know I’m not the likely case, but it happens. I’d ask my general practitioner if your endo. won’t do it. The liver is important; most problems from ATD’s, when caught early enough, reverse themselves- but, who wants to be the one who might end up waiting too long? To me, it doesn’t seem like a big deal to test enzymes. I don’t know what the cost is involved, but it’s probably less than something like TSI.

[adenure]

in reply to: What are your experiences with Methimazole? #1175265

Hi!

I took 5 mg of methimazole a day for 7 weeks. The great thing was that it got my thyroid levels normalized in that time. My hair thinned out a whole lot, but other than that, I didn’t have any noticeable side effects. Unfortunately, I was part of the 1% that has liver issues with it. My liver labs showed enzymes 8 times the normal amount even though I didn’t have symptoms like sore throat, fever, jaundice, dark urine etc… Obviously, I had to stop taking it right away. The good thing was that the methimazole got my levels right so I could have surgery and get better! Yay for that! I would just recommend that you ask to have your liver enzymes done with your thyroid labs just to be safe. Good luck! Also, my liver enzymes went back to normal and all is well now; I had an abdominal ultrasound too to be sure- all is fine there.

[adenure]

in reply to: Nursing Mom going to need to treat Hyperthyroid, Anyone else in this situation? #1175206

Hi!

I don’t know what year it is from. I asked my friend (she’s a LLL consultant) and she forwarded me this info. She did tell me, however, that an L3 is not necessarily bad. A drug is often labeled L3 simply because enough testing has not been done to give it the L2 label. My LLL friend has 4 children and she also has Graves Disease. She had her 4 children and nursed them all for many years while she was on PTU and methimazole off and on over 10 years time. All her children are healthy and well.

I really do understand your dilemma; it was very depressing and stressful for me. The only reason I had to have surgery right away is because I had to stop the methimazole right away because of my liver panel labs- literally 8 times the normal amount and my liver enzymes were normal before starting the meds. So, that was a HUGE stress. I was so, so fortunate that my levels were normalized in those 7 weeks I was on it and stayed that way to allow me to get surgery. The ONLY reason I got the uptake scan was to be 100% sure before having surgery. I didn’t have the uptake scan before starting the methimazole. My endo was 95% sure it was Graves based on my labs & antibody testing. I would give the methimazole a chance, have a TSH baseline of your baby done and testing every 3-4 months of your baby’s TSH to make sure everything is okay there. Do ask for liver labs with your first set of labs after taking methimazole. I had NO symptoms of liver problems, yet the enzymes were as they were all the same. Again, I’m fine now; an ultrasound of my liver showed all to be well too. If you start the methimazole (within the dosage specified in the documents and with your pediatrician’s approval), you can continue nursing without any problem. Maybe you’ll go into remission. I must say though, that I feel better with normal levels now, post surgery, than I did with normal levels on methimazole– especially as far as anxiety goes. Good luck to you! Let us know how you’re doing!

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