[wewo77]

#1059279

Hi all,

Although I just joined today, this forum has given me a great source of support while I was researching my options after being diagnosed with Graves’ this April 2012. So grateful to have found your personal experiences and triumphs to help me through understanding what I was dealing with and how I could go about seeking help to get better.

I am a 33 yo female living in Ontario, Canada and mother to a happy & energetic 21 mo boy. I started getting ‘hyper’ symptoms (but I didn’t know it) soon after I stopped breastfeeding when he was 7.5 months. I started losing weight rapidly (my mom friends kept asking me what I was doing? was it exercise? nope. was it diet? nope. “wow, you’re just so lucky you lost all the baby weight” hmm. so I did

I really didn’t think anything of the weight loss until I saw pictures of myself from a friend’s bbq last summer. My face was thin, my shoulders were bony, and it didn’t look like I had an ounce of muscle on my body. To the regular folk, I looked ‘normal’ but this was NOT normal to be skinnier than I was in highschool. I was happy to be in ‘skinny clothes’ but deep down, I worried. I was 130 lbs pre-pregnancy, and gained about 30 lbs pregnant. I am not weighing 110 lbs.

I asked my younger sister and my mom to get their thyroid levels tested as well and 2 weeks ago, (after all the tests) my mom was also diagnosed with Graves’. I’m heading to her appointment later today to review the latest results and likely she will be starting on tapazole as well. I’m glad I can be there for my mom but I wish it wasn’t for something like this.

How I found out I had Graves’:

I went for a physical just two weeks before going back to work last December, and my GP called me immediately after getting my labs to say you have to go an see a specialist. Long story short: Thyroid ultrasound (no nodules), Radioactive iodine uptake scan, numerous blood tests and 2 endo’s later I was finally given my diagnosis. I also started noticing mild TED symptoms, first very watery eyes than itch and dry. My right eye also seemed bigger than the other and I saw an ophthalmologist to take baseline measurements in May. The TED seems to be halted right now, so not a huge concern at the moment.

I was put on methamizole 10mg x 3 times daily in April and I was on it for 3 weeks at that dose. My labs by the end of the month showed all my levels normalizing/in the normal range but I started breaking out in hives all over my chest, back, legs. My endo ordered me to stop the tapazole asap until I saw an allergist. I could no longer take tapazole based on my reactions, she said. So two weeks later, I was onto PTU, 50 mg x 2 times daily.

I was on PTU from May – June, but my labs started showing elevated liver enzyme levels to the point where it was 5 x’s higher than normal levels. My endo ordered me to stop taking PTU.

do we see where this is going?

After getting the good news that my T3, T4 levels were normalized on Tapazole and PTU, getting the boot right back to where I started was extremely discouraging. I didn’t know what else to do.

My endo walked myself and my husband through the next 2 options. She was really pushing for RAI since she said I had a ‘small window of opportunity’ since my levels were in the normal range, but soon would be creeping back up. After lots of discussion on the effects of RAI (and we are hoping to have a 2nd baby in the near future) – it just wasn’t the option for me.

My endo warned me that surgery wait list would be long and not sure how long it would take for me to feel symptomatic again. I said that it was ok, I would wait it out because I felt it was the best option in my situation. Luckily for me, I was able to see a well-known surgeon within weeks. Tomorrow is my pre-admission appt – which consists of 3-4 hours of meetings with different people on my day-of-surgery team.

Surgery likely won’t be until September but they said it’s good to get the pre-admission out of the way. I’m scared to death of going under the knife as it will be my first time. Too much Grey’s Anatomy scenes going through my head but I do know that I am so lucky to have a surgical team available and putting me on the list with those with serious cases. But I can’t help think of my baby boy and how maybe I should video myself singing and reading to him. just in case.

So there’s my journey so far- I’m looking forward to feeling normal again as I have not felt myself for a while now. Any insight on thyroidectomy prep (emotional and physical/nutrition) would be greatly appreciated.

Nervous nellie,

Wendy

[Kimberly]

#1173833

Hello and welcome to the forum! There are quite a few regular posters here who have chosen surgery as their treatment option. I’m sure they will chime in here, but in the meantime, you can use the search function to search for “surgery”, “thyroidectomy”, etc. to read about their experiences.

Wishing you all the best!

[snelsen]

#1173835

Wendy! You are going to have SO MUCH SUPPORT on this forum. From marvelous people who will be your new friends! REally. Follow Kimberly’s suggestions, and also I have a couple names for you to use in the search engine.
Adenure (on the forum, her name is Alexis) She is a young mother, like you, and if you read her thread from the beginning, I think you will get a smile on your face, knowing that you have made the right decision for you, and you will march toward health, probably faster than with an RAI in your situation with having kids, etc. You will ready exactly what the post op experience is like (easy.) AND she also had sky high liver enzymes, had to change her ATD.
Also, I have a degree of concern about your eyes, and since you have symptoms now, there is literature out there to give you pause about RAI. But that is not an issue now. Cause you made your decision to have surgery.

I had the surgery, I have written about my experiences, too. I was 24 with a 6 or 7 month old baby boy with colic, and I continued to breast feed. I was a MESS! In every way possible, including your experience of being thin, and not diagnosed right away. It was hell. I took methimazole (Tapezole, I think is the brand name, you can check it but does not make much difference.) I had (and needed help for a week, and two weeks is better. My husband was a med student, and pretty much out of the picture for helping. My student neighbors and my mom helped a lot, cooking, taking the baby between feeds, etc.

Also lhc11 or lch11, has posted a lot about her experience with her thyroidectomy, it is another helpful post. Several people in the recent past have had the surgery, but these two come to my mind first.

You will do well. You will be fine. Graves’ sucks, there is no other way to describe it. Alexis has written recent posts about how she feels now, and finding the right dose of thyroid hormone. But the really big thing is that
you are on the path to recovery. And there is no other way to get there except with following the treatment path.

all for now, welcome welcome welcome again to the forum!
Shirley

[adenure]

#1173836

Hey Twin!

Heehee- your story is much like mine. I was diagnosed with Graves after my 4th baby was born; he is now 8 months old. I had all the symptoms- weight loss (13 lbs in a month), tremors (although not too bad), shakiness, insomnia, anxiety, panic, fear- not good! I started methimazole 5 mg. a day for 7 weeks. It got my thyroid stable, but elevated my liver enzymes 8 times the normal amount. So, I had to stop my ATD! My endo. wanted me to do RAI as he felt it was a “no brainer”, safer, less invasive. It didn’t sit well with me though, plus I wanted to continue breastfeeding and be with my family. I also didn’t want to wait for my thyroid to die, I just wanted it done. I guess that is my personality!

So, fortunately for me, my thyroid levels stayed euthyroid the 6 weeks I waited for surgery. I had my labs done every week to be sure. I had my thyroidectomy 8 weeks ago and am very grateful I did. I had a super surgeon and have recovered very well from surgery. I am on the Synthroid dosing mystery path right now. But, that’s okay- better than the hyper path any day! I started 100 mcg 2nd day after surgery. Had labs done 6 weeks later- TSH was 6.35 (free T4 & T3 were in range though) so, I was upped to 112 mcg. 2 weeks ago. I still am not 100% me- I’m not going to lie, it’s not easy. I still feel a little “woozy” floaty/ off feeling sometimes, my sleep isn’t great, but not as bad by any stretch when I was hyper. My heart rate is in the 60s again. I’ve actually started working out a little again- biking, swimming, walking. All the panic, anxiety, tremors, shakiness are all gone- I’d say about 99%. I still worry sometimes, but I honestly think it’s from not feeling 100% yet and wondering when that will come. But, from what I hear, it will come eventually- just takes patience until the replacement hormone is dosed properly.

So, congratulations to you for making a decision to get well and going for your pre-op!!! A great step in the right direction. Things will get better, but it takes time, time, time, and so much patience. Not easy.

It sounds like you have a great surgeon; that is #1!!! I flew all the way to CT from CA to have a surgeon that my mom has worked with do my surgery. She knows him well and I just felt comfortable going with someone she knew and has worked with. He did a great job. I, like you, worried about being able to read to my boys again (we also homeschool); my big worries were my voice, breathing, and swallowing! I can do all 3 just like before- yay! My voice was weak for 3 weeks and tired easily, but it’s fine now. I only took Advil for pain. When you take your first sips and food, take your time to coordinate; I didn’t and almost choked the 1st time 😮

As far as surgery prep, I took SSKI potassium iodine drops for 7 days to shrink my thyroid and draw blood away from it (I did have to temporarily wean my baby for that time- lots of pumping and dumping!!!). After surgery, I took Tums 1000 mg 4 times a day the 1st week, 3 times a day the 2nd week and twice a day the 3rd week as a precaution for the inflamed parathyroids. My calcium levels are fine now; fortunately, my parathyroid were not damaged. My surgeon did a subcuticular stitch- about 2 and 3/4 inches. If you have any other questions, I’d be happy to help as much as I can.

Alexis

I never tried PTU as methimazole was considered the “safer” of the 2 drugs as far as the liver goes. My endo. was okay with my trying it if I wanted to, but didn’t recommend it. I wasn’t about to wait around until I went hyper again to find out if PTU was safe for me or not. One source says it’s a 50/50 chance if one raises the liver enzymes, the other will as well.

[wewo77]

#1173837

Thank you all for your support and encouragement!!

This is scary stuff.

[Author]

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