Forum Replies Created
-
AuthorPosts
-
in reply to: Hello again, and another post-TT update #1180494
Hi Amy. So sorry to hear you’re struggling post TT. That really sucks. I hope for you that the increase in Levothyroxine and the further iron tests help. I was increased from 50 mcgs to 100 mcgs within 4 weeks post TT and I’m glad he did that. I even suspect I should be a little higher since I’m feeling a bit sluggish and putting on weight (although that is not a real concern…would rather feel good and worry about weight gain later).
I hope your doctors can get you to a good place. I’m sad for you, but hopeful.
Best wishes, karen
in reply to: Strabismus surgery experiences #1180488Thanks for starting this thread. Shirley, thanks for answering! I’ve had disturbing double vision now for about 8 weeks that’s been corrected by prisms (with 2 adjustments). Once my TED goes inactive my guess is I’ll be a candidate for this surgery. Unless this self corrects….is that possible? Great to hear that the surgery is relatively easy.
Thanks! Karen
in reply to: Sue’s TT – July 16, 2013 #1180371Hi Newbie! For 9 days out you’re doing great. Don’t stress about the scar unless it gets red, hot, or oozes….it’s amazing how quickly it will heal. Even after 8 weeks I feel a little twinge or pull every now and then. Our necks were sliced open…what can we expect! Haha
I still take a calcium supplement on my own because I’m menopausal and have some early osteoporosis and figured it couldn’t hurt. Tingling and coldness in extremities are classic low calcium symptoms (right here I need to add the usual..I’m not a doctor clause!).
you’ve still got weeks maybe months of ups, downs, and changes to go thru but I can say that, for me, the worst experiences post TT are a breeze compared to the horrible hyper, methimazole, experiences before TT!
I loved being home too…hard getting back not the swing at work…. Enjoy the good days and the sleep!
Cheers,
Karen
in reply to: Sue’s TT – July 16, 2013 #1180365Hi Sue. That’s great news. Love your attitude…positive with a sprinkling of reality! I hope this good feeling continues for you…
Karen
in reply to: Post TT T4 numbers #1180451Hi Talley,, I’ll try to answer your questions but let’s both hope someone who understands labs better than you and I weighs in!
With or without our Thyroid you will always have Graves’ as long as you have the Graves’ antibodies swirling around your body. Antibodies are measured by two other tests (TSI and TRab — don’t ask me what they mean!). The Graves’ antibodies attack your thyroid, or your eyes, or your shins and do bad things to them. So even without your thyroid, you still have Grave’s since it’s an autoimmune disease.
Your questions about T3, T4 also confuse me. My Endo doesn’t check T3 when patients are post TT but I’ve read that it should be checked to make sure your body is ‘converting it’ correctly (?). This is where things like Armour and other drugs can come into play if that’s not happening. So the Synthroid is a synthetic version of the hormone that used to be naturally secreted by the thyroid. So that dose needs to be regulated to make sure it’s not too high (hyper) or not to low (hypo). You can still clinically be hyper or hypo without your thyroid if your Synthroid dose is not correct…hence the need to check TSH and T4.
Your next set of labs should be a good comparison to see if your body is using up the stored (pre-TT) hormone and adjusting to the new synethic levels.
Isn’t this fun! I too hope that real soon I can stop worrying about all this…unfortunately for me, I’ve now got a bad case of thyroid eye disease that is another annoying, scary, frustrating journey. And being menopausal/older makes the fun just that much funner in a not so funny way!!!
Take care…Karen
in reply to: Post TT T4 numbers #1180449Hi Talley. My Endo doses off TSH. My TSH went up to 24.9 (very hypo) within 3 weeks after TT and my T4 was in normal range. Since I was so hyPO so quick my dose was doubled to 100 mcgs (or .1). So it’s not necessarily true that TSH can’t change quickly…mine did. I can understand why your doc might want to adjust your dose…your TSH is very, very low…still considered hyper.
But we’re all different and what’s normal for me might be different for everyone else. You could also be so used to being hyper that it might feel normal to you. That’s a tough call on the dosage…sounds like its time to see your Endo. My surgeon released me immediately to my Endo for dosing….now that your surgery is done not sure what the reason could be for your surgeon being involved in your maintenance. Interesting….
Im not a doc but your labs would clinically appear to indicate you are still hyper. I’m coming up on 8 weeks post TT and feeling pretty good but suspect I might need one more dosage change at my next labs in 3 weeks. My TSH got so high so quickly I’ll probably need a little bit more. But who knows! Most folks I’ve followed on this forum indicate that the average time to feeling ‘good’ is 3-4 months.
I hope you get some answers soon….Karen
in reply to: First day of Levo…… what should I expect? #1180430Hi Sue. My Levo was started day one after surgery at .50 mcgs. I insisted on my first labs at 3 weeks (instead of the ‘normal’ 6 weeks) and was found to be hypO already (TSH was 25). Was upped to .100 mcgs and feel pretty good. Definitely knew I was hyPo and didnt like it. My guess is he might raise it a little bit after next labs in 2 more weeks.
Not sure what you are googling and finding for Levo but my understanding is that it’s just a hormone supplement and the drug itself has no side effects. The feelings are related to the hypo, hyper, etc. not the drug. I could be wrong. One of my core reasons for going the TT route was to get off all the meds with all their side effects.
Your dose does sound a little high from the start but maybe that will keep you from going hypO. It never ceases to amaze me how every doc treats every patient with the same disease so different. Which is a good thing!
Best wishes,
Karen
in reply to: Sue’s TT – July 16, 2013 #1180350Hi Sue. Sorry for the confusion about the plural of steri strips. It’s usually just one long one…. About 3 inches. I didnt bother wrapping mine for showers, but as Shirley mentioned I did not let the water pound on it. Mostly stood with my back to the water stream and would cover my neck with face cloth whenever I turned around to wash front (haha). They are very tough. Mine never budged for 11 days.
Be ready, the fatigue will set in big time over the next week. You will feel fluctuations of energy so don’t overdue it or the crashes will be harder. Your body has gone thru a major surgery and needs time to recover. Easy for me to say in hindsight!
best wishes, Karen
in reply to: Sue’s TT – July 16, 2013 #1180342Regarding the incision site. I went home with no bandage, just the steri strips and they stayed in place, even with showering, until I went back to surgeon 11 days later. No bandage was covering the steri strips. Only used the cloth ice packs for 1 or 2 days. No real swelling or bruising at all.
Talley mentioned silicone scar patch…never heard of that. I’ve literally put nothing over or on my scar in 6 weeks other than sun screen, never messaged it, and it’s literally almost gone. Not kidding. I have to look hard to see it. Every surgeon has a different technique but mine said,,,don’t bother with all those creams, etc since it will run its course and fade away on its on time.
I forgot about the breathing machine in the hospital. Little plastic thing I took home with me. Used each hour and it helped with making sure the lungs dont get congested since you are tentative about coughing, even though you can’t hurt anything.
Sue, how’s your voice? Mine never changed except right after intubation tube was removed..a little hoarse.
To answer your incision question,,, under the steri strips are dissolvable sutures that will disappear by the time you see your surgeon.
Sleep and rest and sleep and rest…let your family spoil you!
Take care,
Karen
in reply to: Sue’s TT – July 16, 2013 #1180341Regarding the incision site. I went home with no bandage, just the steri strips and they stayed in place, even with showering, until I went back to surgeon 11 days later. No bandage was covering the steri strips. Only used the cloth ice packs for 1 or 2 days. No real swelling or bruising at all.
Talley mentioned silicone scar patch…never heard of that. I’ve literally put nothing over or on my scar in 6 weeks other than sun screen, never messaged it, and it’s literally almost gone. Not kidding. I have to look hard to see it. Every surgeon has a different technique but mine said,,,don’t bother with all those creams, etc since it will run its course and fade away on its on time.
I forgot about the breathing machine in the hospital. Little plastic thing I took home with me. Used each hour and it helped with making sure the lungs dont get congested since you are tentative about coughing, even though you can’t hurt anything.
Sue, how’s your voice? Mine never changed except right after intubation tube was removed..a little hoarse.
Sleep and rest and sleep and rest…let your family spoil you!
Take care,
Karen
in reply to: One of “those” days. #1180412Shirley, you’ve been such a rock for all of us on this forum. It’s makes me angry and sad to hear about your eye issues and the jerk who said those things to you. I’ve never heard of this issue. Can you get in with one of these big eye institutes so they can help you? Having your eyelashes pulled..jeez and ouch.
Gotta say, GD was bad but this TED stuff has me terrified. Double vision is very bad, back to specialist tomorrow to hear more bad news I’m sure. I watched all the GDATF YouTube TED videos last night and couldn’t sleep it was so disturbing.
Would love to meet all of you. I’m on the east coast but will travel anywhere. Hopefully many of us can meet up at the next conference (when is that?)
Hugs, Karen
in reply to: Sue’s TT – July 16, 2013 #1180333Welcome home! Holy cow what an experience. I feel bad telling you mine was such a breeze. I’m not sure how I would have handled that long of a delay. I’m sure that added to your anxiety.
I did use ice, however, the hospital sent me home with a cloth covered packet that can be refilled and kept the area dry. I agree with your doc that you don’t want to use anything that melts or gets damp because you want those steri strips to stay as long as possible. Surprised they didn’t send you home with something since they are standard hospital issue.
Yes, was nervous to cough or clear throat and that was the only thing that sort of hurt,,,but still did it only when necessary.
No Vitamin D for me. Just told me to take calcium, which I still do as a precaution. I take a calcium supplement that also includes Vit D. But was not told to do this by doc. I was sent home with Vicoden, which I only used once.
My hospital experience as so very different from yours. I had zero disruptions during the night. Was able to go to bathroom across hall on my own. I loved the leg stimulators they had hooked up to message my legs as a precaution to blood clots. I didn’t have to walk to OR, they wheeled me from pre op since that’s where they set up my IV. So sorry you had to go thru all that at Yale nonetheless!
Get some rest and eat whatever you can. You can’t hurt anything by swallowing or coughing or clearing your throat.
Hugs, Karen
in reply to: One of “those” days. #1180406I think you deserve a good whine or maybe a good wine!! It’s OK and to be expected. We aren’t super-people..things get to us and bad days happen. I bet tomorrow will be better and if not maybe the next day. I hope you have a good day soon…. When all else fails, read Boomers posts and I bet you’ll crack a smile!
Cheers,
Karen
in reply to: what is happening to me??? #1180307Hi and welcome. You’ve found the right place. All of us are patients and all of us have questions and concerns. All have Graves in common but each has a slightly different journey or outcome. I’m almost 6 weeks post TT and starting to have real eye issues (coincidental timing..not because of the surgery). I gasped when I read the recommendation from our endo about a steroid shot under the eye. Holy cow! That’s scary. I see my surgical ophthalmologist on Thursday and plan to ask about this. I too hate needles. My opinion…don’t do that unless a ophthalmologist who specializes in GD and TED is the one recommending it. All the reading I’ve done on this forum, I’ve never heard anyone mention eye shots.
I’m sure you are nervous. I know what you mean about double vision. Mine is getting worse by the day and its very scary. I wish you the best. We’re here for venting or cyber hugs or whatever you need!
Best wishes,,
Karen
in reply to: Sue’s TT – July 16, 2013 #1180327Good luck tomorrow Sue. I’ll be thinking about you! You’ll do fine. Hopefully you can get permission to drink water past midnight. Being hydrated is important and helps you with the anesthesia (and the needles to start the IVs!). Sounds like you have a solid plan.
You will probably feel like super woman a few hours after the op. Trust me…it’s a fake feeling…it’s the remains of the anesthesia. Just take it easy, try not to overdo it, and in no time, you’ll be finding your new normal!
Hugs,
Karen
-
AuthorPosts
