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  • adenure
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    Post count: 491
    in reply to: RAI or Surgery? #1173002

    pdaz,

    I would really monitor your liver enzymes carefully. Mine were elevated 8 times the normal amount within 7 weeks of taking just 5 mg a day. Not a common thing obviously, but it happens. I didn’t have any symptoms and felt normal as well- no fever, no jaundice, no sore throat. So, it was quite the surprise! I was told to stop methimazole that day which I did. My liver enzymes returned to normal and the ultrasound (abdominal of the liver) came back fine as well. I ended up choosing surgery as there is a study that show that people who have issues with one medication (liver problems) will have a 50% chance of having the same type of issue on the other medication as well (PTU or methimazole). Definitely communicate with your doctor, but I would stop the methimazole for a week like he suggested and then retest your enzymes. 3 days after I stopped methimazole, my doctor had me do another round of liver testing and my numbers had come down (not normal at that point, but heading in the right direction). As others have said before, you can live without your thyroid, you can’t live without your liver. Take care!

    adenure
    Participant
    Post count: 491

    I would see your doctor. I did have what I called “anxiety breathing” which felt like constricted breathing or others have called it “air hunger”. I was getting enough air, but it didn’t feel like it, but it was anxiety related. My anxiety was caused by Graves.

    adenure
    Participant
    Post count: 491

    Hi!

    You will feel better- definitely- but, it will not be an easy road. It takes time and patience. Make sure you have a surgeon who is very, very knowledgable about thyroidectomies and performs many of them! Ask questions, be confident in your choice. I was in the hospital only 4 hours after surgery and then was allowed to go home, but I think most surgeons have patients stay 24 hours. Two weeks is a good amount of time to take off from work. I’d say around day 6 I started to feel better. The first 48 hours are rough, but I only needed Advil for pain. My voice was weak and raspy and tired easily for 3 weeks. I think I got my voice back full again around week 6. I took Tums for calcium for 3 weeks – 1000 mg 4 times a day the 1st week, 3 times a day the 2nd week, and twice a day the 3rd week bc the parathyroids are inflamed and won’t regulate your calcium well for those 3 weeks. My parathyroid weren’t damaged at all though. I had to sleep upright for 3 nights to help with draining (I didn’t have a drainage tube though).

    Ask for a subcuticular stitch and asking if your surgeon uses a recurrent laryngeal nerve stimulator (RLN stimulator) to protect your vocal chords isn’t a bad idea either.

    I’m almost 3 months post surgery and have been on Synthroid since day 2 after surgery. 100 mcg for 6 weeks and then upped to 112 mcg. and have been on that since as it has leveled out my hormone levels.

    Are you taking SSKI (potassium iodine drops) for 7 days before surgery? That will help shrink your thyroid and pull the blood away from it to make it less vascular and easier to operate on. Gives you a nice metal taste- ick! Not a big deal though. After you come out of surgery and sip your first water, take time to coordinate your swallowing. I didn’t and almost choked! I learned pretty quickly to coordinate after that! Good luck to you & just make sure you have a great surgeon!

    adenure
    Participant
    Post count: 491

    Hi!

    You did the 1st major step to getting better! Awesome! I know it’s nerve wracking leading up to whatever treatment we choose, but once we do it, we’re doing something to help us be well again. Keep us posted on how everything goes!

    adenure
    Participant
    Post count: 491

    Congratulations! Remember that either ATD is safe for breastfeeding as well (I believe you can go up to 250 mg with PTU or 20 mg with methimazole). I hope your body stays on the up and up with your hormone levels after delivery. :)

    adenure
    Participant
    Post count: 491
    in reply to: Well, here goes! #1173513

    Hang in there! You’re doing great- love your positive attitude!

    adenure
    Participant
    Post count: 491

    Hi,

    I understand the anxiety, depression, and frustration. I never dealt with anxiety until I got Graves. It’s scary to feel like you can’t control your body’s reactions to circumstances (like constricted breathing from anxiety). Did all of this come on for you with Graves? In other words, you didn’t deal from the above as seriously as now? That would be the case for me. I think getting your levels stable should help a lot. When were your last labs? If your numbers fluctuate a lot, I definitely think that can contribute to mental stress and unrest.

    I’ve run the rollercoaster of emotions since having this illness. I opted for surgery bc I couldn’t continue on methimazole due to liver issues. Maybe considering surgery isn’t a bad idea for you? or RAI? Maybe it would be easier to balance your hormone levels without a thyroid and give you some consistency so that your body and mind can focus on getting well and back into normal instead of riding the roller coaster of out of whack hormones. I don’t know- like Kimberly said, I’m not a doctor. But, if methimazole wasn’t keeping me fairly stable, I would look into other options. It’s not easy no matter how you look at it, but we have to find the best option that will give us ourselves back. Good luck!

    adenure
    Participant
    Post count: 491

    Hi,

    When I spoke with 2 surgeons, they both said, that for Graves patients, removing the entire thyroid is the best solution. If we did not have Graves and needed part of our thyroids removed for another reason, a subtotal might make sense. Since our immune system attacks our thyroids (antibodies being present), then it stands to reason what ever thyroid you have left will be attacked by Graves antibodies- which isn’t all that much better than having the entire thyroid attacked. I had a total thyroidectomy, and I won’t sugar coat it, the Synthroid journey isn’t much fun, but it is way easier than the hyper journey. Right now, my levels are normal, but I don’t feel like my old self 100% yet. I’m contemplating giving Naturethroid a shot, but haven’t completely decided yet.

    If you get a subtotal, it is possible that you will continue to have hyper symptoms or problems after surgery. One of my friend’s sisters has Graves. She had a subtotal quite a ways back, but unfortunately she is having hyper symptoms again and is most likely going to go back in to have the rest of her thyroid removed. My surgery went really well with no complications, but I’ll tell you, I wouldn’t want to go back in and do it again! It makes sense that it’s easier to regulate your meds. if all of your thyroid is removed- especially bc you are a Graves patient. Our thyroids and levels are wacky bc of the disease. So, I can imagine balancing Synthroid with a thyroid that is being attacked by antibodies would be a challenge and may prove frustrating for you and your doctor. I don’t know for sure, but just a guess.

    If I had to do it again, yes, I would take the whole thing out as to take out the variable of a wonky thyroid (or 1/2 of one) causing me issues.

    adenure
    Participant
    Post count: 491
    in reply to: Well, here goes! #1173501

    Awesome! Glad to hear it! With Graves, you take any and every positive moment and enjoy it- sounds like you’re doing that really well- a quote that I saw once, “Life is not about waiting for the storm to pass, but about learning to dance in the rain!” You’re doing great!

    adenure
    Participant
    Post count: 491

    Hi!

    I think you’re both going through a “thyroid dump” where your stored thyroid hormone dumps into your system after RAI and causes hyper symptoms to be more pronounced for a few days or so after treatment. From what I understand, it’ll subside. I didn’t have RAI (I had surgery), but I’m dealing with crappy sleep as well trying to get the Synthroid right. I think I’m overmedicated right now as I’m sweating a lot and not sleeping well. I had a dose increase 5 weeks ago- I want labs to see if I can alternate higher & lower doses every other day. Fun times. :/

    adenure
    Participant
    Post count: 491

    Hi Shirley!

    Let us know how you do! I hope everything goes GREAT!!!! Stay strong Super Woman! 😎

    adenure
    Participant
    Post count: 491

    cmac,

    I wouldn’t exercise until your thyroid levels are normalized. Being hyper causes muscles waste (which is why your muscles feel tired/ weak when exercising or you can’t do as much as before). Your heart is a muscle too, so any exertion while hyper on your heart is dangerous. It stinks, I know. I too, love to work out, but I was unable to for many months while I was getting better. Almost 3 months post thyroidectomy now I am able to do a good solid 30 min. of hard cardio on the bike. My resting heart rate is back in the 60s (at one point it was 120 just walking down the hall!) and I’m doing better. Not 100%, but better. Take it easy while you’re body is trying to heal.

    adenure
    Participant
    Post count: 491

    Shirley,

    Big hugs to you! You surely are a stronger woman than I. I can’t imagine what you have been through, but you are quite the lady- persevering through it all! Let us know how you do and I sure hope and pray for a full recovery and relief from all you have been through. I have a fear of having TED. I have dry eyes, but nothing that some artificial tears can’t fix. Worrying is pointless, but subconsciously I think about it. Here’s to a successful surgery!

    adenure
    Participant
    Post count: 491

    Hi!

    I just want to say you are not alone. I am dependent now after my TT, but yeah, I’ve had those fears of some insane calamity happening (like the end of the world or a massive earthquake- we live in CA!) and oh my gosh, I can’t get my meds!!!!! Ahhhhh!!!! However, yes, that is pretty much fear based worry. Could it happen? Yeah I suppose so. But, so could getting in a car accident or some other tragedy happen. One thing I did know is that I wasn’t living my life, being healthy or enjoying it being sick with being hyper. So, something had to be done. ATD’s weren’t an option for me, but think about not being able to get ATD’s and being hyper- yikes, that’s just as scary to me. I guess we would eventually die if we went so hypo with no thyroid and no hormone replacement, but Bobbi is right, Synthroid is the 4th most used medicine in the USA. There’s a big market there. So, I think, barring any major calamity nationally speaking (and even there who knows) we’ll probably be okay. But, yeah I get your worries. I have irrational worries all the time- or at least mostly irrational!

    adenure
    Participant
    Post count: 491

    Hi Shirley :)

    No, I don’t get periods when I’m breastfeeding (even for 3 years like with my 3rd son!) so, that isn’t an issue right now. The headaches come and go and aren’t terrible, but just bothersome. Could be my life!!! :P But, I don’t know.

Viewing 15 posts - 196 through 210 (of 451 total)