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in reply to: Graves Disease Surgery TT #1184131
I had thyroid toxicosis (the old name for Graves) when my baby was 2-3 months old. I was 24. Had a thyroidectomy, was great. Continued to breast feed. Agree with Liz. Got thyroid eye disease 5 decades later.
The best advice is to get a surgeon who does lots of thyroidectomies. I suggest you ask. 50 year year is a lot.
Shirleyin reply to: Strabismus surgery…. #1184095Maybe it is because the multiple months of double vision was so hellish, and I had to wait for such a long time after the OD, to be sure my eyes were before the strabismus surgery. But my experience was very different from sanders, as noted above.
To focus on your specific questions….
1. I did not have the scratchy feeling sanders experienced.
2. I had the procedure in the morning, walked around a lake, 3 miles, the same day.
3. Yes to lubricant and eye drops.
4. I did not have to have any adjustment to the sutures.
5. I have been light sensitive since TED began, and MUST have fit-over sunglasses handy at all times, to this day.
6. With double vision before the strabismus surgery, it was very painful to move my eyes. Looking down at the floor was the only thing I could do without pain.
7. I had no pain after the surgery. Just a very mild, scratchy discomfort which was managed pretty well by ointment. I also had an antibiotic ointment initially.
8. I used no pain meds at all. I was euphoric, cause the double vision was gone!
Shirleyin reply to: Strabismus surgery…. #1184090Hi scanders!
Nice to hear from you!
I love this forum!
Shirley
in reply to: Thank you (recently diagnosed with Graves’) #1184086Hi Heather,I agree with all the responses. And there will be more! You are fortunate to have had good and early diagnosis, and also I think this site is a lifesaver. You are one busy person, with 3 kids! I imagine your baby boy is seriously considering sitting up by himself in the next few months.
As you have read, we are all over the map regarding how much TED and Graves’ has impacted our respective lives. It does sound like Graves’ has not impacted you life as much as it might have! I am so grateful for that!
You might be interested in exploring the index putting in words that will have you see posts of people with kids, people with babies, etc.
This is one super site!
Shirley
Yes, I was more hyper when on steroids, they are famous for that. I am a poor sleeper, anyway. I was bright eyed and bushy eyed 24/7. Walking your dog at night sounds like a wonderful counterbalance to the steroids! But it saved my vision.
That is a wonderful nickname. Wish I had one like that with an interesting history.
Shirley
in reply to: Strabismus surgery…. #1184088Hi Laura,
You’ll have to look for it, but I described my OD and my strabismus surgery. I remember that the strabismus surgery was a DREAM!!! Easy peasy! Went out for lunch. No big deal to have the adjustable sutures. Sometimes they are needed, sometimes not. I found to be LIfE CHANGING, in the most marvelous
and positive way I can describe. Even in the operating room they woke me up to look at objects across the room, and I saw ONLY ONE OBJECT, contrary to the horrible double vision I had for a long long time. I had both done at once,that is fine.The hardest part of TED was waiting to have the strabismus surgery.
I also found my one OD a very difficult post op experience. Only good thing about is, that it really did save my vision. There was a huge amount of pressure on my optic nerve. To relieve the pressure, I did have IV steroids.
So, I have nothing negative to say, and all is enthusiastic and wonderful.
ShirleyGreat post, Liz.
Jeff, some of my thinking is below.
Somewhere in the forum, I have described my thinking about my decision to have my thyroidectomy. The overriding thought was, that I wanted to get the show on the road asap. I figured if I did not have a thyroid, there was nothing to attack! But my thinking was way ahead of the standard of care for thyroid surgery, so I DID have a sub-total thyroidectomy. They left a little tiny bit on one side. This kept me happy and euthyroid for multiple decades.Sometimes I wonder if the surgeons of today, feel that a TT is easier, you have to be a bit less careful, and after the post op course, they are done with you. That ‘s what surgeons like. Rather than a patient returning to talk about symptoms and thyroid replacements, that is just not their interest or what they do. RAI was new then, and i wanted nothing to do with it. There was no information about having one if childbearing, and wanted more kid. I did all the ready of ATD (same drug they use today) and I wanted to get off that asap also. Back then, that was also the thinking of the medical community, for all the reasons Liz stated.
I have found that after my Synthroid dose was established, that I regained being a human again. Of course, the first renewal of being anything but a great roaring psychotic crazy person, was beginning on ATD.
I totally relate to all that you say about work, kids, friends and life in general. It is a total bummer in all aspects. The only thing that I can say, is that it gets better. For the surgery, you would need help for at least a week, and optimally partial help for next week or two..to do laundry, be helpful to your kids, get them places, grocery shop, and fix some meals.
Feel free to call, just send a PM, and will provide my phone #. I have done this before, it really is nice to talk to a real person.
in reply to: Breastfeeding while hyperthyroid #1184072Same situation for me. My baby was 8 weeks. I did not stop breast feeding, but did ask someone to feed him at least once a day, cause I was so tired. At the same time, I was, of course, hyper and wakeful. I think he was more irritable until I had about a week of Synthoid. My peds end began me at a smaller dose for that reason. Began at 112, then decreased to 77mcg (i think that was the dose.)
The thought of stopping breast feeding was unthinkable to me at that time, for it was going so well. Doug was ore fussy than usual, and I was more fussy than usual! One doc finally got smart and drew thyroid labs. My TSH was .00something. Been a long time! I had a thyroidectomy when he was about 5 months old, friends brought him to me to feed. All fine for many decades, no replacement at all. Now I take a little Synthroid, my labs always indicate I should have a little more. Am taking 112mcg 6 days a week, 100 mcg 1 day a week. Id rather take 100mcg every day.
Thyroidectomy was easy, always glad i made that choice.
ShirleyNot sure where you are with your thinking, Jeff. But part of your thinking should be the pros and cons (and risks) of a thyroidectomy. I am glad you submitted this, it is a great discussion
To Jeff. I am familiar with that Eye Institute, met a lot of those folks . Good people. I had not heard this. However, I am a counterpoint to this statement. I had a thyroidectomy in the late 1950’s, and developed TED in (I think 2004)
I will check that out, was it just the opinion of an end there, or was it a controlled, evidenced-based study with a large population and sample? I suggest you pursue this further.
ShirleyTo fishstix. ( love that name!)i.e. Megan! Welcome to the world we don’t want, but here we are!!
From my experience, here are some suggestions. My endo sent me to a near–ophthalmologist. I recommend this. As you may have read above to Jeff, there was a long time between Graves’s and TED for me. About 50 years!!!!
My TED arrived with a vengeance, with double vision in every direction except downward gaze to the floor with one of my eyes. Double vision is life changing , and not in a good way. I did have a course of IV steroids, as described by Laura, and the rational was to save my vision in my eyes. There was so much swelling, that the pressure on my optic nerve (optic neuropathy) if allowed to continue, would result in permanent blindness. So..the reason for the IV steroids was to “buy time,” keep my vision safe, until I could have an orbital decompression, which I did have. It did save my vision. For sure. My time is limited right now, but wanted to give a brief response. Steroids definitely have their pros and cons, but in this situation, very warranted.
ShirleyHello all, but especially vicky0306 and JenP
Vicky and Jen, you are totally “on track” by feeling discouraged, crazy, stressed, worried, and that life as you knew it will never return! Welcome to our Graves’ world. BUT the wonderful news is, that we were all there, and we are all fine. Each of us has a personal story, as you are learning, and also personal preferences regarding our treatment. In almost every situation, it is up to you. Don’t feel bullied into anything.
Regarding the beginning of all of this, you will find that the ATD’s are wonderful After you have them a little while, you WILL begin to feel like yourself,and you will be in a much safer position relative to your overall health, and will e able to think more rationally about anything and everything. Some people also take a beta blocker, if their heart rate is too fast.
Of the three options, I chose thyroidectomy, and did not think twice about it. I wanted it DONE, permanently and forever. And I actively was not interested in RAI. In my case, thought I did not know it then, that was a great decision for me, for later in life, I had two breast cancer, unrelated, but both required radiation. Lots of it. So that was also good for me.
Others have reservations about surgery and prefer RAI. And as you know from Kimberly’s note, the option of ATD is an option if you want to continue to think about everything. You will maybe find in your reading, that ATD has been, and pretty much still is, the early intervention until RAI or surgery is chosen. But as Kimberly will attest, that is what she wanted, and that worked well for her. In all these case, having thyroid labs will be part of your world, as well as reporting how you are feeling and having a good endocrinologist.
At this stage, believe you will feel better and be like yourself again. And that this is not a fun disease to have. True. Ellen’s references are good, they might be helpful. My thoughts, which really helped me understand (when I was VERY HYPER, and relatively unreasonable about everything and everyone!) are that
before I had Graves, even though I had studied the endocrine system, I had NO IDEA what a person experienced. It really is difficult for people to understand our short fuses, our fatigue, our stress, and some will not understand. For work, I tried to get a reduced work schedule, which I did receive for a short while. But dealing with HR and co workers was so stressful for me, I am not sure I would even try it again. HR people not my favorite people! (: As soon as the ATDs kicked in, I was much much more tolerable to myself and everyone else. You will find that this board is wonderful, especially to know that you are not alone, and that everyone here “gets it.” All for now, time for force myself to get a little exercise in the Seattle rain before it really dumps!
Shirleyin reply to: Success with diet changes? #1183968My experience is that diet should be what you like to eat, as long as you are already eating a healthy diet. I don’t think any “special” diet is related to impacting Graves’ one way or the other.
The only thing to mention is the foods containing high amounts of iodine, such as the wrap on sushi, (seaweed, kelp)If you think that you want to try different diets, go for it. But I imagine you will reach the same conclusion Kimberly reached. And with all the other stuff we have to deal with when having Graves’, we might as well enjoy our food and eat what we like and what is a healthy diet. My two cents!
(:
shirleyin reply to: Things my Forum Friends have taught me … #1183953Flora!
So nice to hear from you! You did a great job of reviewing the whole Graves’ experience in one post! MUCH better than my dibs and dabs that I post now ad then.One of the most important things you said, is that it take TIME, more time tan we want, to get to that sweet spot. And one of the traps of that is to do labs too early after a dose change. I think with thyroid replacement very small changes are indicated and work best. But for MMI, that is a different ball park, and frequent labs and adjustments probably will be necessary. Important to be monitored by and endo who understands Graves’ (and is not just all about diabetes!, as so many seem to be cause of the epidemic of diabetes in this country) And endo who really “gets it” and gets you, with a large dose of empathy thrown in now and then.
I am so glad you are riding your house, taking ballet and finding your old self and your life back! Your post is very encouraging to others, and it is great to hear from you!
Shirleyin reply to: Graves Disease Diet #1183937And then there is me! I have not had any of the experiences or symptoms Kimberly mentioned. I eat like I have always eaten. No changes at all. I have no triggers.
Of course, avoid foods loaded with iodine, as Kimberly mentioned.I encourage you to not to try to radically change your food intake for any reason, i.e., suddenly become vegan, gluten free, or anything else. They really aren’t relevant to Graves’.
Eat what you like (unless, of course, you have a fetish and craving for kelp, iodine cookies, seaweed, and extra iodine! (:
ShirleyHi Antony, this will be short, cause I need to go to bed soon.
Welcome to the forum.No, you are not experiencing a thyroid storm. That is a different deal.
Is your RAI recent? Sounds like you still have a ton of thyroid hormone on board, for all your symptoms relate to being hyper.I would definitely report your symptoms to the doc, for an interim decision might be made to try to juggle an antithyroid drug to help you with this.
I’m not a doc, just letting you know that this is typical of hyper stuff, and check in with your endo. Are you able to do that in the near future/ How long has it been since you had RAI. The other deal with that, is at some point, you will/may feel hypo, and will need supplemental thyroid. This is a time, when your labs and your symptoms and how they correlate is very very important.
Best to you.We have all been on this dumb road, and there is a good end result when you actually are feeling like you want to feel, the “old you.” really!
Shirley -
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