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in reply to: Week 3 of Methimazole–update #1174494
Hi amosmcd,
I have had 3 years plus experience with TED in Seattle. For a long time, the eye docs would test my vision, change the RX for my glasses, and it never really helped. It was all attributed to glasses. I had dry eyes, wavy vision off and on, and blurry vision now and then and was more sensitive to light.
When my vision began to affect my work, I walked in another eye doc office, to make an appointment. I did not know him. He happened to walk out to the desk, take a look at me, and say, “If you are here to make an appointment, I’d like you to go downstairs for an orbital CT scan. I’m 99% sure you have TED.
So that is what I did.I was going to several eye docs for different things during TED. One for the double vision, and subsequently a strabismus surgery. One to assess my vision, related to losing vision. He was the neuro ophthalmologist. Good thin, too, for I ended up with optic neuropathy, and had to have an emergent OD in the active phase, to save my vision. And the other doc was the oculofacial surgeon, who did the OD>
I have had a ton of surgeries since then. My TED is pretty severe. I gotten 2nd opinions in Portland and Iowa, along with my Seattle docs.Glad you are going to an eye doc familiar with TED. That is very important.
Write after the appointment.
ShirleyHi George, I am another Graves’ (long time ago) and TED (thyroid eye disease) person. This is a good site. There are a few guys on the site, you might find them if you put “male” in the search engine. As you have already learned, perhaps, Graves/Hashi is more common in females than males.
I think you have a very good understanding of your labs and of your Graves’.
You’ll find that the facilitators don’t interpret or comment very much about labs, for none of us are doctors, just fellow patients. But your assessment sounds right on to me, and it sounds like you are having great care and management for a complex medical issue.I think the big message is that you will be better, and yes, you will need to do the Synthroid dance and some labs the rest of your life. But, on the other hand, we are soooo fortunate to have it available.
Just wondering, what was your heart rate when it was high? Glad you are on the beta blockers.
I also have subclinical hyperthyroidism. If anything, the way I fEEL is hyPO.
I am more focused on my TED, which has been pretty severe.Welcome to the boards. If you can figure out how to get to the conference in San Diego, that is a great opportunity to meet and talk to docs and fellow Graves’ people.
Shirleyin reply to: Quick Orbital Decompression Post-Op Update #1174536Gosh, what wonderful news! That is WONDERFUL. I do suggest you remind yourself and give yourself permission to make a decision to work a shorter day if you go back to work and feel terrible. You had TWO big surgeries, AND anesthesia (did you have a general, presume so) and it impacts endurance and energy more than you probably realize right now.
My two cents!
Shirleyin reply to: neuro opthomalogist? #1174570I think it is wise, prudent and good medical care to see a neuro opthalmologist when we have TED. They are very familiar with TED, and some of the tests they do, especially a visual field test with a Humphrey machine, help them determine if our vision is being impacted by pressure on the optic nerve.
IT is possible to lose our vision permanently if we have optic nerve atrophy (pressure on the optic nerve.) The tests are combined with your own observations about your vision. One of the first ones they neuro/op docs and you can do by yourself, is look at the color red with each eye, see if there is a difference.
But I am speaking as a patient, and telling you my experience.
In a direct answer to your question, I think your surgeon who is going to do the OD is very wise to do this, and wants this information to know if there is any urgency in scheduling the surgery. You are getting good and conscientious medical care. And, yes, it may have something to do with your peripheral vision test, and it IS possible that there might be something wrong (as there was in my case.) I had to have an OD in the active phase to save my vision. The OD can correct this.
If you have a chance to see your surgeon again before you see the neuro/op doc, you can ask your surgeon your question. Or as him if he is concerned about your vision. All that I have said here, is in any good reference that explains TED.Shirley
in reply to: Does RAI require you to be off from work?? #1174450Hi Shakira,
Congratulations on your new permanent job! That is really great. I hope the responses you received from Amy, Kimberly and gatorgirly, are reassuring and helpful to you!
ShirleyI was also 24 years old, nursing a baby. I pumped the same day, fed him thereafter. It helps to have someone fix meals, hold the baby, do the laundry, and generally be nice. I lived in student housing at the time, and my friends took my 2 year old which was a GREAT HELP. Neck a little sore, ate everything right away, went back to work too soon (full time RN) went back in 2 weeks. That was dumb. I had plenty of sick time.
I felt fatigue, more than “me” for about 4 weeks. Hard to determine, with a baby and a 2 year old. I was always tired anyway!!!
You will do fine. I did not ever become hypo, like feeling terrible, but in about 5-6 weeks, my labs were normal and I felt great-BUT I had a sub total thyroidectomy, which used to be done, the theory was leave a tiny bit of thyroid gland. It worked for several decades, then I needed to take Synthroid.
I think you will do fine!
Shirleyin reply to: Synthroid and Alcohol #1174565No way. I can tell you from years of experience (a mojito and margarita and occasional beer in the summer, and bold cabernet in the winter) that it makes no difference at all. And, since Synthroid is a lifetime thing, I probably would not pay much attention to anyone who said otherwise! I take Synthroid in the morning, and the other stuff in the pm!
Seriously, I am not aware of any drug interractions or side effects.
Shirleygosh, Kells, that really means so much to me. THis forum has been a lifeline for Graves’ and TED. I can’t begin to tell you how much I have received from my forum friends. I do get discouraged, as you can tell. I am looking for an “end” to TED, knowing that I am as good as I am going to get. and hoping that the surgical interventions that I have had (all 13 of them) have not made my lifetime situation worse. I have not had one of them for cosmetic reasons. all are seeking better comfort or better vision, or not having to tape my eyes closed at night.
It is very important for anyone with tED to know that having procedures for appearance and cosmetic reasons, is absolutely fine. TED really wrecks havoc with our appearance. But it is also very important that the surgeons do the procedures for the MEDICAL indication of TED. Otherwise, insurance will puke it out.
Shirleyin reply to: Quick Orbital Decompression Post-Op Update #1174531Hi, thanks for the news re your bilateral OD. I wonder if doing two OD’s at once is done very often? It is very tempting, not to have to go through that twice! I am SO SORRY about the nausea. Do you know if they medicated you with ondansetron preop and intraop? I have found that is a super drug. Plus the soluble ondansetron by mouth. Anyway, I am glad you are past that.
It is interesting how different the surgeons are, regarding how they do OD’s.
I did not have my eye sutured closed, but I did have it covered with 2×2 gauze, and used cool packs on it almost constantly. And you know that I elevated my HOB (head of bed) for days and days.I read about the numbness someplace, but I did not have that side effect, and my doc did not mention it either. I was most worried a bout double vision but I had D.V. before the OD. Strabismus surgery after, which was wonderful.
So NICE that your surgeon has called your several times! Not a bit like my surgeon, that is for sure. I also had ENT doc for the medial side.
My other eye is bulging, but I have felt quite scared of having another OD>
I have had so many procedures, and problems with some of them.
**I misplaced your blog, would you PM it to me please?
I look forward to hearing from you after your Thursday appt.
Shirleyin reply to: Eye Disease after years of Euthyroid #1075538Hi, I was browsing old posts, ran across yours. I know you have not been on the forum for a while, but thought I’d write, see how your TED progressed, or resolved. Did you have any surgery? Did it end up being mild or severe?
I hope all is well with you, and TED is not impacting your life, as it is still impacting mine!!!
Shirleyin reply to: missed levoxyl dose #1174521I am sure Ski will answer, but it is my thought that you should resume your schedule, and NOT make up the dose. We’ll see what she says. I have been told never to make up doses if I miss one with thyroid hormone.
Shirleyin reply to: Week 3 of Methimazole–update #1174490Hi Amy,
I’m in Seattle, too! I have had a lot of experience with eye docs, cause I developed TED about 2+ years ago. If you’d like to chat, sent a PM, I’ll reply with my other email address and phone number.
Shirleyin reply to: RAI or Thyroidectomy #1174500Hi Maria,
as Bobbi said, there is a ton of information, plus many recent posts of folks who have documented every stage of their thyroidectomy, their decision process, etc. Adenure has had a recent experience,and did a great job describing everything. Llc11 (or lch11) had great posts.
I had a thyroidectomy, it was a great experience. My incision is not visible at all. Regarding your concern about pain and recovery from a thyroidectomy, I took a few tylenol, but had little pain, More of a sore neck for a few days. I went back to work full time in less than two weeks, which I would not advise, cause I was tired. The big thing about surgery is to have a surgeon who is familiar with the procedure, and has done a lot of them. Surgeons are generally willing to tell you this.
But since you are having your RAI this Wednesday, I do suggest you do your thinking soon. If you are unsure, it is easy to cancel and reschedule the RAI.
I think one of the most important things about having Graves’ and making decisions, is that you feel good about your choice, and do not feel “talked in” to anything. And, of course, the advice of your doctor. Be aware, however, that some docs encourage one choice because they are familiar with it from their training, and/or for reasons unknown. So ask them why the recommend a certain treatment. Many of us on the board have followed our own choices, which may differ from what was recommended. It is a matter of education, medical advice, and your own personal fears, preferences, and availability of the treatment you choose in your part of of the country.
Best wishes to you. All of have made different choices, and there is no wrong choice.
Shirleyin reply to: Could someone advise on blood results please? #1174487Hi Butterfly! Welcome to the board and the forum. Almost all of us write to discuss interpretation of our labs! You are NOT causing problems! Kimberly gave you some good all-around advice. i think you have a very good question about what to do about your ATD’s. Is it possible for you to call now, even though it is Friday, and have the endo or on-call take a look at your labs, give you some advice in this area? I’d be wondering the same thing. Be ready with your symptoms, too. Are you feeling hyPO, or hyper, or can you tell?
Your other questions about labs you can also ask an on-call this weekend. They can give you good guidelines on your other labs. If they can’t retrieve them electronically, just read them to the doc.
You are not alone here. So many of us have the same questions and concerns (and feel crappy.)
Shirley -
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