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in reply to: Had my surgical consult #1174732
I guess you could also look at the flip side in the “catastrophic” situation. If you were hyper, you would need the ATD’s to keep your levels normal and it’s possible that pill wouldn’t be available either. Again, obviously a very unlikely situation and basing our decisions on fears isn’t usually a good idea. But, think of all the health issues that require continual medication whether it be Graves for those who aren’t in remission, those with out thyroid due to Graves or cancer, people who need insulin bc of diabetes, people with oxygen tanks etc etc… From what I understand though, Synthroid is the 4th most popular drug in the USA as far as how many people take it. One would hope that, even if we had to do without for awhile, it wouldn’t be for a long amount of time. Fortunately the 1/2 life is 5-7 days, so your body stores it up.
Emily, good luck to you with your surgery! That’s great that you’ve made the decision and are going to move forward with being well! I too am an active person; it was hard not being able to do much besides sitting on the couch all day to keep my heart rate at a safe rate! It is good to be able to live life, be active, exercise, and go about my day now and not worry about my heart rate or muscles getting weak/ sore. Let us know how it goes!
in reply to: Had my surgical consult #1174728Hi
I understand all your feelings as I’ve had them all. I had to choose surgery or RAI bc I couldn’t take the ATD’s due to liver issues on them, but that was the hand I was dealt, so there you go I guess. I understand your fears of some crazy catastrophe and not being able to get medicine and all of that; I’ve had those thoughts as well. Knowing I have to take a drug to live IS scary! But, truth is, there are a lot of people in that situation for one reason or another. It’s not what any of us want, but it does happen.
As far as getting another illness that isn’t compatible with Synthroid, I don’t think that’s possible. Levothyroxine/ Synthroid, from what I understand, doesn’t have any issues with other medications. I supposed it’s possible that you might have to take Synthroid far enough apart from other drugs so that it is absorbed properly, but I don’t think there is an outright incompatibility.
Like you, I never wanted to go back to hyper land again. Scary stuff that I never, never wanted to go through again. Like I said, my hand was forced to make a decision between RAI and surgery. I probably would have tried for remission, but I don’t know. It seems like some people are very fortunate with remission, even for many years, but then hyper symptoms come back- maybe not true for all, but it seems to be so for the majority. I knew it probably wouldn’t get any easier to have the surgery as I get older. Apart from Graves, I’m a healthy 38 year old woman, so, I had even contemplated surgery before I knew I couldn’t tolerate the ATD’s. Everyone is so different, you just never know what your body will react best to. Take some time to think it all over, talk with other surgeons if you can and then go with your gut. The post surgery journey isn’t easy, but it is much easier than being hyper! And, it is good to know that I will not go hyper again.
As far as the eyes, I haven’t dealt with that and am hopeful I won’t. But, I know that on this board at least, 2 people have dealt with TED after have been being treated for Graves and having normal levels for years. So, although maybe not common, it can happen. Good luck to you and let us know how you’re doing and what you decide.
Definitely a 2nd opinion. Another doctor might also order a radioactive uptake scan which can confirm Graves.
My numbers reflected hyperthyroidism and I tested positive for antibodies & had a percentage above normal for the uptake scan. I understand the symptoms you’re feeling. I had terrible anxiety and was scared to be by myself. I’d start to have a minor panic attack every time I was alone (even in the shower if my husband was in the house! I made him sit on the toilet seat so I could shower without panicking!) Geez!!! I never had issues like that before getting sick. I had minor tremors, elevated heart rate- my worst being 120 when walking down the hall. Initially I was told by one “lovely” doctor that I needed to relax, he sent me home with a paper bag (to blow into when I was anxious) and wanted to give me xanax. Yeah…. no.
Fortunately, I did get a doctor who did blood work and figured it out so I was very, very fortunate to only have been really sick for 2 months. Then, I got on the path to being well with ATD’s and then eventually surgery 4 months ago. I now shower on my own- , take care of my 4 boys, homeschool like I did before I was sick and am able to enjoy life again and feel normal most of the time. Sometimes I feel a little off, but it’s probably from adjusting to life without a thyroid and being fairly new to Synthroid and all that. Plus, really, it was a traumatic experience (as odd as that sounds) to go through all the weird emotions and symptoms of being hyper- I think part of me has a little residual of that every once in awhile- weird. But, like I said, now, that all is back to normal pretty much, I’m doing WAY, WAY better and feel pretty good most of the time.
Good luck to you and let us know how it all goes.
in reply to: Questions for surgeon. #1174748You might want to ask if he uses an RLN- Recurrent Laryngeal Nerve- stimulator to help prevent damaging your vocal chords. Not all surgeons use it, but it might give you some peace of mind.
Also, maybe ask what kind of closure he uses. Subcuticular stitches are good (helps with the scar).
in reply to: Does everyone gain weight with a TT? #1174692Hi!
I had my TT 4 months ago and have not gained any weight. I’m hoping it stays that way! We’ll see I guess. I eat healthy most of the time and exercise 4-5 days a week. Everyone usually goes hypo to one extent or another after surgery until your replacement hormone dose is figured out (which takes time- 6 weeks for each dose change until labs accurately reflect your levels). So, you could go hypo after surgery for awhile. I had one bump in dosing and then my levels evened out. I was fortunate in that I never really went hypo at all. My TSH was 6.35 after 6 weeks on 100 mcg, but my free T4 & T3 were normal range. I was upped to 112 mcg. and my TSH is now around .68. Do I feel great? No. I don’t. Do I feel much better than when I was hyper? Absolutely! I don’t feel terrible, but I’m not quite the same as before Graves. Maybe it will get better- I hope so. I get some headaches and am down sometimes, but otherwise, not too bad- I sleep pretty well for the most part and 98% of my other symptoms are gone- no heart palpitations (heart rate is now 62), no tremors, no anxiety- sometimes an eensy weensy bit, but not much really. So, all in all, a good decision to have the TT. Good luck!
It is weird, but I know that sometimes while our bodies are trying to figure things out, the numbers don’t always make sense. After my thyroidectomy, my Free t4 was in the upper range of normal and my Total T3 was midrange normal, yet my TSH was hypo- it didn’t make sense at all. My Synthroid was upped and 2 weeks later, everything leveled out to normal. I think when our bodies go through a major change- even if it’s just adding a medication to our daily life, it takes some time for adjusting. When my medicine was upped my free T4 actually dropped a little even though the dose was increased- doesn’t make sense exactly, but I guess the body needs time to get adjusted to whatever we do to it. Maybe get another set of labs in a month or 2 and see if things have evened out. I wouldn’t worry too much right now.
in reply to: Diagnosed with Graves 4 days ago. #1174590Hi!
I was one who had problems (liver issues) with methimazole, so I had to choose RAI or surgery after being on methimazole for 7 weeks. I chose surgery for various reasons. I have 4 children, one of which is a breastfeeding infant & I wanted to continue nursing. I didn’t want to be away from my family and I didn’t want to wait out RAI and see what happened. I just wanted it done and over with- I guess, in part, it’s my personality. I really think it depends on the individual, your personality, what your “gut” tells you, what your doctor is willing to let you do (if your a good candidate for surgery- stable thyroid levels, over all generally healthy, access to a good surgeon who does a lot of thyroidectomies).
I understand where you’re coming from; I chose surgery based on a lot of the same concerns you have. But, RAI works very well for many people I think, just like surgery works really well for others. Admittedly, if I had a family history of cancer, I would steer clear of RAI. Because I was breastfeeding, the nuclear doctor did tell me if I got RAI while my breasts were lactating (I would have had to wean and dry up and then wait an additional 4-6 months to be safe & then they’d send a tracer to make sure my breast tissue wasn’t taking up any iodine), there was a chance of getting breast cancer from the RAI in my specific situation, but they couldn’t give me a percentage. I just wasn’t comfortable with it, but I think for a lot of people, it’s probably pretty safe.
Whether you have RAI or surgery, you’ll be at the doctor changing meds. every 2 months until the hormone replacement is figured out. I was fortunate- I started on 100 mcg of Synthroid day 2 after surgery. Had my labs 6 weeks later, was upped to 112 mcg. and then another lab 2 weeks, then 4 weeks later. 112 mcg. seems to be the right dose. Everything is in a good place range wise. I don’t feel 100% myself (ie- pre Graves), but I feel much, much better than when I was hyper! So, I’m hoping the headaches that come and go and the sporadic insomnia will go away too at some point. I’m hopeful bc even though I had 2 bad nights of sleep, three nights ago, I slept NINE hours straight !!!!! Woo hoo! So, it is possible! Well, I hope you are able to make the right choice for you. Once you’re confident and your doctor gives you the okay with your choice, move forward and don’t look back! Know that it takes a lot of time though and patience. I’m almost 4 mo. post TT and I’m still trying to find the consistency in feel good- but, it is better & I’m hoping I’ll continue on that path!
in reply to: Generic levothyroxine dosage variation #1174625Hi Nicholas,
I’ve heard the same; that generics are “allowed” more of a variance than brand name drugs. I think that with most drugs, it probably isn’t a big issue. With thyroid replacement hormone though, a little bit makes a big difference as you saw in your numbers. I had a similar experience. I was on 100 mcg & had a TSH of 6.35. Was bumped to 112 mcg and 2 weeks later was at .79. Another 4 weeks later- at .68. I’m taking the brand name after reading various things like you mentioned. I don’t know if it really matters, but I figure this journey is hard enough, why make it harder if I don’t have to. Good luck & I hope it all works out well.
Also- I think the other problem with generics is that they can come from various manufacturers- even though you buy at the same pharmacy. So, although the same “dose”- their maybe be more of a variance not just among batches from the same manufacturer (although that’s not likely) but also between the companies that produce them or maybe different fillers which would effect how T4 is absorbed in your body. At least with brand name you know you’re getting the same amount and same fillers every time (barring some mistake in production).
in reply to: 9 days from Total Thyroidectomy #1174628Hi!
Yes, the horror stories had me in tears many, many nights. I had my TT almost 4 months ago and am doing well pretty much. Not 100% pre-Graves lady yet! But, I’m doing way better than when I was hyper, no doubt there! I’m able to take care of my family, homeschool my boys, exercise, and enjoy life again. I still get headaches and have bouts of insomnia, but it’s not as bad as it was, so I’ll take it with hopes of improvements as time goes on!
I would suggest that you really make sure you have a great surgeon; it will reduce the risks of complications by a lot. I was fortunate to have one of the top 10% in the nation that my mom happened to know and work with in the OR, so I was nervous, but confident going in. I was in the hospital recovery for 4 hours and then sent home, but most surgeons have you stay 24 hours. I had a subcuticular stitch (about 2 3/4 inches long) and 1 suture that was removed a week later. My scar looks pretty good. No drain. My parathyroids and calcium levels are fine, but as a precaution, my surgeon had me take 1000 mg of Tums 4 times a day the 1st week, 3 times a day the 2nd week and twice a day the 3rd week post TT. Tums won’t hurt you, so it probably isn’t a bad idea. I slept upright for 3 nights in a chair to help with drainage. I only took Advil for pain- no prescription meds or anything. They gave me SSKI (potassium iodine) drops for 7 days before surgery to shrink the thyroid and draw blood away from it to make it easier to operate on. This is not something you should take though for more than 2 weeks as it can make hyperthyroidism much worse.
I would say the first 48 hours were the hardest. Day 6 I felt better. My voice was weak, raspy and tired easily for 3 weeks, but I could breathe, talk and swallow right away. Just be careful with that first sip of water- slowly & with concentration! I almost choked- whoops! 😮
I started SYnthroid on day 2 at 100 mcg- 6 weeks later labs showed a 6.35 TSH, so I was upped to 112 mcg. My TSH got to normal in 2 weeks at .79 and 4 weeks later at .68 with my free T4 in the upper range of normal. I won’t lie, the first 3 and 1/2 months of figuring out Sythroid was no picnic. I had symptoms of just feeling off, headaches, insomnia- just not good. Your body’s hormone stores can last up to 2 months, but then it’s just the Synthroid in there (per my endo’s words)- so, your body is trying to make the adjustment. I still get some headaches- but not as much and not too bad- I don’t usually need any Tylenol or Advil for them. Insomnia happens- but it’s not too bad. It’s probably my biggest complaint though. I haven’t gained any weight at all. I exercise hard cardio 4 times a week for 30 min. I didn’t start that though until about 2 1/2 mo. post TT (and I was in really good shape before getting Graves). I just took 10 min. walks until I would feel “weird” floaty/ spacey, then I’d stop. It was frustrating, but it is a long, slow process to getting better completely- so you have to have A LOT of patience. :rolleyes: But, it WILL get better- it’s just not quick.
Good luck to you!
in reply to: Home from TT #1174582Congratulations on being one step closer to being well!!!! 😎 I’m glad to hear all went well. Did your surgeon suggest taking Tums (1000 mg) for the first 3 weeks or so? My surgeon had me take 4 a day the 1st week, 3 a day the 2nd week and 2 a day the third week as a precaution with the calcium levels. He said it doesn’t hurt to take Tums, so it might be something to think about- especially if you feel any tingling in your face, arms or legs (sign of low calcium). My surgeon said the parathyroids get inflamed from the surgery, but return to normal after a few weeks.
I did not have any swelling, so I’m not sure what to suggest there except ice packs will probably help along with staying upright. I slept upright in a chair for 3 nights (per surgeon’s request) after my TT.
Have you started Synthroid yet? I started 100 mcg on day 2 after surgery. I’m grateful I did as even though at 6 weeks I had a TSH of 6.35, I never went very hypo. After one bump to 112 mcg, I leveled out 2 weeks later at .79 and then another 4 weeks later at .68. If your endo. is willing, it might help with how you feel.
I hope all goes well for you!
in reply to: only Methimazole 5mg as a start #1174483Hi Shakira,
I was started on 5 mg daily of methimazole as well. My hormones were balanced quickly on just 5 mg. I started feeling better around week 2 and at my week 7 labs, my hormones were normal. Unfortunately, I was one of the 1% who had liver problems (elevated enzymes 8 times the normal range) due to the methimazole. I had to stop taking it right away and my liver enzymes returned to normal and my ultrasound of my liver/ abdomen showed everything was fine. So, even though it is only 5 mg, you can still have problems- I would ask for a liver panel/ labs just to be safe. I didn’t have any symptoms like fever, sore throat, jaundice, dark urine etc…
My levels stayed normal for 6 weeks off the methimazole while I waited for surgery (which I had 3 months ago) to remove my thyroid.
I too am a very athletic, energetic person- I’m 38 y.o., have 4 boys, work out, I weigh 118 lbs & am 5′ 4″, small frame. So, if you are similar, 5 mg. might be the right starting dose. Methimazole is very powerful. It is good that your endo. started conservatively and is testing your blood 6 weeks later. I didn’t gain any weight on the methimazole except for some that I had lost from being hyper. I was (and still am) too thin. I’m usually 124 lbs., but I’m working on getting healthy again. It’s not easy. Good luck to you & don’t worry. Haha! I should talk! I worry quite a bit! I too cried a lot when Graves was confirmed with an uptake scan. It’ll be okay.
Careful working out while you’re still hyper though. That can cause problems- muscle waste, heart strain/ palpitations. My endo had said to only walk and take it easy until my levels were normal before getting back into full on workouts. I’ve just started in the last month being able to work out about 1/2 way of what I used to do.
in reply to: Surgery or the pill? Which is better? #1174466One thing I’ve learned is that there is no real “better” bc everyone is so individual. Do your research, take into consideration your particular circumstances as far as your hormone levels, life circumstances, age, health, talk with your doctor then go with your “gut”. That’s the best advice I can give. I chose surgery for many reasons including that it just felt like the right option for me. My doctor supported me, but did not recommend it. He preferred RAI. I have 4 children including a 10 month old baby that I’m breastfeeding. I homeschool and didn’t want to be away from my family or have to stop breastfeeding. I also wasn’t comfortable with RAI for whatever reason, so I found an excellent surgeon and had a complication free surgery. That is most important- finding the best surgeon you can find. I wasn’t 100% comfortable with the first one I saw, so I was fortunate that my mom (who worked in the OR for almost 20 years) knew a great surgeon. She even asked her friend (anesthesiologist) to do my surgery as well! I was very, very fortunate. It is a big step, so you have to be confident in your choice; the one that is right for you and that your doctor supports (for example, if you’re hyper and can’t get normalized, surgery probably isn’t your best choice due to the risks of thyroid storm). Good luck!!!
in reply to: UPPER EYELID SURGERY COMPLICATIONS #1174376Shirley,
I am so sorry that this is happening to you. I’ve said it before, but you are an amazingly strong woman to have gone through all that you have been through. I don’t know how you keep on, but you do and you will continue!!! I hope and pray everything goes smoothly and you get some relief soon! You deserve it!
in reply to: Dental Work #1174370Thanks all- no, not sedation, just having a crown replaced- nothing huge. I just wasn’t sure if it was something to be concerned about if they give me lidacaine or whatever it is for that sort of thing.
I’m doing okay, Caro. Headaches aren’t as frequent, but still a bit of an issue. I just don’t feel 100%- kind of frustrating. But, I’m only 3 mo. out so I’m going to give the Synthroid a few more months before deciding if I want to try the pig hormone. Not sure what to do there as I don’t feel terrible, but not great either. I am going to start getting acupuncture though! I get a free session to try it, then once I get the referral, a year’s worth (as many sessions as I want) for only $15 for a 1 hour session (my copay). Pretty cool. So, I’m hoping the acupuncture does good things. When are your next labs?
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