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in reply to: Recommended Reading #1065766
Are you looking for info about TED, or only Graves?
in reply to: EYE LUBRIDANT, EYE DROPS #1065785I really appreciate all the responses! As we know this site is a marvelous complement to our lives. Thank you AZROSES,
you experience really helped me. A hearty thanks to Ski, Bobbi and ewmb.
To summarize all the helpful posts, and to help others:
-yes, I know that anything over the counter cannot have a prescription anymore. Many of my friends were shocked when claritin became over the counter.-Samples and coupons. Good point! I will be more proactive when I an in the doc’s office. When they give me one, I will ask for 10!! I’ll also explore online purchases, see if there is any advantage to that.
Masks, gel masks, etc. I will explore all that. I tried to tape eyelid, that just did not work for me.
Plug-I fogot to say that I already have them. Can’t really say there was a profound improvement, but they do help.I am SO SO anxious to be in the cold phase. I am hoping eyelid surgical procedures can help me with this. I have also head of a gold implant in the upper eyelid, don’t know much about that.
All for now, I am sure I missed some of the suggestions, but I will keep this topic to review. I will take good care of my corneas!Hi, I have this feeling that you will be REASSURED by going to the ophthamologist, not more scared. Generally, the unknown is much more frightening that something you can deal with. And certainly there is a possibility that this may be a non-issue.
I hope your hyperemesis resolves soon. What a drag.
Shirleyin reply to: Eye questions #1065820Thanks, Ski, I will proceed to those steps. Forgot to ask (and I will also ask the surgeon) if eyelid repair might be appropriate now. The reason I am saying this, is that My OD was necessary, even though I was in the active phase..to protect my optic nerve, relieve the pressure on it. BUT I could close my eye just fine when I had marked protrusion. Now I have no protrusion, cannot close my eye. So it is definitely not because exopthalmus. I suspect it is damage to the VII cranial nerve during the OD. It took a while to get that from the surgeon, however, he finally said that is what caused my problem. If that is the case, this could be a permanent situation. Not happy about that.
in reply to: Decisions, TT or RAI #1065878I had a thyroidectomy. I was totally happy with my decision. One thing I liked a lot was the relatively instant gratification I got from the surgery. I found the recovery easy. I lived in Iowa City at the time. There is a university hospital, it was easy to find a surgeon who was familiar with the procedure. Usually you can get good referrals from docs in your area. I think the facilitators on this site also referenced a website to find a surgeon.
Shirleyin reply to: Newly diagnosed–help! #1065895Hi Joy, I am glad you have found this site and the bulletin board. Here are some of my thought and experiences. I think you are doing everything right. You did not feel well, you went to your doc. Good for him/her, thinking to do the thyroid levels. It got jumped on right away. It could have been easily missed for a while.
I am a grandma. My grandsons are twins ages 9 1/2. They really do wear me out. I simply cannot do the kind of play that I did with them a few years ago. My kids are older parents, ages 47, 49, and the kids wear them out, which is almost reassuring to me. I am currently hyper by labs, but super tired all the time. And COLD! Neither thing goes with hyper.
It is really difficult to learn about Grave’s. I am an RN, have worked for 50 years, but this whole world of endocrinology, Graves and TED is pretty new and difficult. I tell myself frequently, that if I had not ben immersed in this disease (for one year, this time), I would have NO IDEA what it was like to experience it. That is why this website is a real lifesaver. I am sorry you are in this "club," I don’t want to be in it either, but here we are. Even when we see an endocrinologist and get some explanation, we do not understand how this can impact our lives.
It is pretty common to have to wait for an appt. with an endocrinologist. Until you do, the beta blocker seems to be making some headway with your pulse. I suggest you call your regular doc who prescribed the beta blocker, leave a message of your pulse rate. The initial dose may have been very conservative, so you would HAVE a pulse, and not fall down on your face!
My history briefly. Hyperthyroid after a baby at age 24, REALLY toxic, ended up, for good reason with a thyroidectomy in the late 1950’s. Five decades later, I developed TED. Not that many people end up with the eye issues. It has been life changing in a bad way. this website has been a lifesaver for me.
Thought you would like to hear from someone near your demographic, although much older!
Shirleyin reply to: How to hide loose skin after OD? #1065898Here is my experience. I had a VERY bulging eye. OD 2/2/10. I think the important thing is to expect the post op period, as far as measurements go, and plans for future eyelid surgery, at least three months. The big thing is that measurements need to be consistent over time, so the corrections they make are based on information that is not still changing. In answer to your question, my eyelids do not look a bit different after the OD. I do not have baggy skin there.
The main difference between your experience and most of the experiences of people on this blog, is that they did not have any surgery prior to the OD. I am "just" another person with TED, no expert at all. IT sounds like you are in the cold phase, lucky you. So I guess the "take away" from my experience is that I think I looked great after the OD because I elevated my head and used ice therefore no appreciable swelling or bruising. And that my eyelids were not baggy after the OD and look just fine.
They have been droopy (upper eyelid) for years, and when I am in the cold phase, I look forward to the muscle surgery and an eyelid surgery to hike the upper lid up a little bit. Best of wishes with your OD. I think you will be super glad you had it.in reply to: Am I Not Doing Enought For My Graves? #1065949Another issue to consider while being maintained in a slightly hyper state is an increased chance of cardiac complications. This increases with age, but it does not mean that you have to be OLD. Another topic to discuss with your doc.
in reply to: Surgery Complete! #1066278Hi Sue, both drugs are levothyroxine, and there are some others. The basic thing to know is that it is preferable to continue on the same brand, rather than randomly switching. A nice explanation of this is on medicinenet.com
I presume TT means total thyroidectomy, but I am sure she will clarify this. I had a thyroidectomy, and it was a very good decision. You will hear from many others about this, but the most important thing is to get referrals about which surgeons do them regularly. That is the biggest thing. There are some really good posts about this, so browse around, probably looking for thyroidectomy, not total thyroidectomy. Just a terminology thing, but I think most people have referred to thyroidectomy.
After I had mine, all symptoms of hyper were gone, and I did not get hypo. I should mention that I had a SUB total thyroidecomy, so they left a little bit of thyroid gland on each side, which cranked out just the right amount of thyroid for many decades. Finally, I was a little hypo, and started on Synthroid.This site is a marvelous reference, I am glad you found it. Many years later, I developed thyroid eye disease (TED) and this site has helped me deal with THAT!!!
ShirleyHi Jasmin,
I am responding to your interest in knowing the experience of people who had a thyroidectomy. I was very toxic
(hyperthyroid) after the birth of my first child. Hyperthyroidism is the same thing as thyrotoxicosis, and boy did I feel toxic!
I lost weight, had a rapid (160-180 heart rate, ravenous hunger, never slept, extremely hot all the time, and was basically in overdrive all the time. Never wanted to go to bed. Super hyper. Maybe I will invent a new word! Hypertoxicosis!
I was on PTU, it really helped, but the moment I went off it, all symptoms came back. I then had a sub-total thyroidectomy. This is one record I don’t have, but I THINK they left a small amount of thyroid gland on either side. Not sure what the standard of care is today.
Anyway, I could hardly wait for surgery! My experience with the surgery was great! I had a thyroidectomy when I was 24 and my child was 5 months old.
Everything went smoothly, minimal pain, and it did not take very long for me to become euthyroid (neither hypo or hyper.) I think it was about two months, and immediately after the surgery, my heart rate decreased, and I felt better.
It is definitely good to find a surgeon who does this surgery. I tried to use the Thycal site that Bobbi recommended, but I was not able to find names of surgeons. But I am sure it is my novice navigation skills.
I chose my surgeon on the recommendations of the endocrinologist. He was great.Hi, thank you for your response. I don’t smoke, and I am not hypo. I would LOVE to take an action that would limit the course of TED, but I know everyone would like that. I have been receiving too much levothyroxine for many years. But of course I began taking it in the first place after a subtotal thyroidectomy for hyperthyroidism. After many years of being euthyroid, labs said I needed a bit of the med. But I was kept in a hyperthyroid state for many years, probably cause too much med. TSH always .003, .02, area. Curerntly reducing the med, also take cytomel. I really don’t think it makes any difference.
I am always cold, always tired, but this does not fit with my labs.
On top of all of that, I have TED. I find TED almost too much right now. Being so photophobic, having acute double vision, feeling almost spacey when I walk b/c of vision issues, is a lot of stuff. I sure appreciate this site. I wonder if two years from now, I will have been in the cold phase, had my strabismus surgery and the eyelid surgery? Seems like hot phase is going on FOREVER!!!!just sent a pm, let me know if you received it.
in reply to: OD surgery date set ! yee haw! #1066228Hi, thank you for your thoughts. I get so discouraged waiting for the COLD phase. I do think you will sail through your OD>
As I said before, elevation and ice worked for me. I wanted to say one more thing about elevating the head of the bed.
I ended up not using the blocks I bought to raise the head, for I was not sure if the wood legs at the foot of the bed would take the pressure. Instead, I fold numerous quilts and comforters, plus some extra pillows, and put them under the mattress. I actually liked this a lot, for I could decrease the elevation, but still have HOB (head of bed) up a little bit. I got my blocks at Bed, Bath and Beyond in Seattle. You can buy them separately. BBBeyond has ice packs that are "soft" the feel like fabric on the outside. I liked them much better that the plastic ones without the soft feel on the outside.
I don’t know what your surgeon will say for post op instructions, but I was supposed to "massage my eye for 15 seconds five times a day."
I know how you feel about making decisions! I think you will be very pleased with yours, and this limbo we live in is very difficult.dat
Wow. FOUR YEARS! I can’t imagine three more years of TED. But I better include it in my thinking, just in case. Did you know you were in the cold phase because your measurements and vision did not change? I am a little unsure how that is decided.
ShirleyGood morning. Mant9. I think you will really appreciate this discussion board. I suggest making a list of things you need to clearly know and understand, that are on Bobbi’s post, plus the questions below. I am a patient with TED and Graves, also an RN who worked in a hospital for many years. But I a just another patient, making some comments that may be helpful. But my comments below are really addressing and suggesting some questions for you to ask. You sound like you are someone who will pursue the information you need to get the right decision for you.
Here some questions to ask the cardiologist. And I am wondering if you had ever been to a cardiologist before December.
1. Ask about the difference between tachycardia (rapid pulse, which is associated with hyperthyroidism in a small number of people..) Ask if you have (chronic) afib or tachycardia
There is a difference, but it is best that you talk to your docs, and/or, you can look up the definitions of both.
2. Then ask about afib. Ask if it is a competely different cardiac problem than the fast pulse. However, it is true that the incidence of afib is a bit higher in hyperthyoidism. Ask the cardiologist if you have "chronic afib."
From your post, I think that the cardiologist wants to do an ablation?
I am suggesting that you talk to the cardiologist, maybe taking someone with you to take notes. Same with the endo.
3. Ask if the two will confer with each other about your situation. Or maybe the already have?
4. Begin now to sign all the release of information forms that are required for you to get copies of all the dictated notes from both docs.
What is your pulse rate? Is it 140-160 now? That is very fast to have all the time. Has the cardiologist ever cardioverted you for a rate this fast? Is if fast all the time or does it come and go? Might be a good time to check it throughout the day.
shirley
Iin reply to: OD surgery date set ! yee haw! #1066224I am soooo happy for you. My OD was five weeks ago. I looked better immediately, my eye was not bulging out of my head. It was great. The two things that helped a lot were having the head of the bed elevated, and using ice pack. I had OD because there was pressure on my optic nerve. I am probably still in the hot phase. I sure hope I get to the cold phase pretty soon. IT’s been a year since diagnosis, but my declining vision was attributed to "needing new glasses" for far too long. Tearing, dry eyes, diplopia are what I am having now, and I am so happy that you will be done with all of this soon. Strabismus surgery is something that I will celebrate when it is time to do it.
Please write again of you have any other questions @ OD. I spent a lot of energy being very apprehensive, and it was energy wasted!!
Shirey -
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