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in reply to: What questions should I ask the Ophthalmologist? #1176764
Hi JIQ!
I TOTALLY understand! I did it all. Horrible light sensitivity, wore a visor and sunglasses, the wrap around kind, even in the house—in Gloomy Seattle…..in the winter! The glare is terrible. That is why the wrap arounds. Yes, you can check out what kind of a surgeon he is, the one who will do the OD. Sounds like you ended up in the right place with the right doc, but ask lots of questions, tell him you ARE willing to have both eyes done at once. He/she may not agree. This is not a walk in the park surgery. The outcome is good, some people take a longer time recovering than others. As I said, it will double, at least, the OR time. So glad you have lots of help and a good support system.Usually, they want to wait around 3 months before the double vision surgery. IT takes quite a while for total healing from OD. and they need to know the can depend on the measurements when they move muscles. NOTHING happens as fast as we want it to happen.
I HATED the double vision. I could only look straight down. So lower and side muscles were very affected. I could not look straight ahead at all.
Re terms for doctors, some oculofacial plastic surgeons may be the same as themselves as plastic reconstructive surgeons. And, ask the surgeon you see who will do OD if he does do strabismus surgery. Generally, they don’t, but he might. I encourage you to go to the ped eye surgeon for that.
Shirleyin reply to: What questions should I ask the Ophthalmologist? #1176761Hi, sorry for the delay in response. I knew I had a little time. When you “get” to the questions about post op experiences of OD, strabismus surgery and eyelid surgery, do check out my posts. I wrote a lot about post op OD, for sure.
I had the same question for you that Nancy did. Are you having strabismus surgery for double vision (diplopia.)
You did not mention it, but I would like to be sure. Since you have done fair amount of reading, I imagine you have already learned there is a definitive order for the corrective eye surgeries. And they are all done in the inactive, or “cold” stage, with the exception of OD, which listed below in #1.I’d take note of the comments of Kimberly and Nancy.
1st surgery-
OD’s if they are needed and indicated. The major and only reason for
and OD in the active, or hot phase, is optic neuropathy, which is pressure on the optic nerve, when if not relieved, can, and will, result in permanent blindness. So the OD is done to relieve the pressure, caused by extra orbital fat and the bulk of the fibrosis of the eye muscles, which, in turn, happen because we have TED! Otherwise, proptotic eyes are more exposed to light and air, and sometimes so bulging that the eyelids will no longer close.
Or, the impact of TED, which is a medical condition, justifies OD for that reason. There are folks who have milder TED, they may have some protrusion, but life is good and they don’t care. So they elect not to do OD’s. It can be on one eye or two, depending on the protrusion.A comment here. There is a logic to the sequence. To do strabismus surgery first, correcting the double vision, makes no sense. Cause when the OD is done, the eye/eyes will be in entirely different locations. Same for eyelid surgery. Strabismus is moving the eye muscles to correct the diplopia. So, of course, get the eyes where they are going to be, first.
Next, if needed
#2-strabismus surgery. I had mine done by a pediatric ophthalmologist, as Nancy also mentioned. In my experience, this was a super simple procedure to recover from, and my results of single vision were immediate. Wonderful.Next, if needed, eyelid surgery. Retracted upper eyelid surgery is pretty simple, you could go out to lunch with someone when you leave the day of surgery place. No pain, a few ointments. And of course, the purpose is to lower the upper eyelids. Lower eyelids are a bigger deal. Cause they are retracted, we want them to go back where they belong, but everything, mainly gravity, is working against that goal. If this is proposed to you, and/ or if you have contemplating have this done, there is a long long time between the first two procedures, so we can discuss that some other time if you are interested.
Questions and helpful stuff.
1. Experienced surgeon who is happy to tell you how many procedures done a year.
2. A surgeon who is happy to provide a name or two who has had the procedure, and of course they will check with the person to see if they are happy to share their experience. I have already done this a couple times.For OD
1.How long do I need help? (you get the best information from people who have had the same surgery)
2. May I read and have the post op instructions AHEAD OF TIME? I realize there may be additional information.
3. Do you do two eyes at once? Most docs won’t, for you are entirely blind and helpless with both eyes covered, and you will need help a lot longer. And OR time is a lot longer. Better one at a time.Write again if my post generates more questions, I am happy to chat on the phone, too. PM me if you would like to do that. Tomorrow is a pretty good day for me to do that.
Shirleyin reply to: Synthroid Dosage Increase #1176774goal is to make you JUST RIGHT! It requires a bit of fiddling around till you find the right amount. Before Graves’, our bodies knew how to regulate our thyroid hormone needs very well. Now we/you/endo are trying to take over the job. That is why it is never ending. We change, our needs change, and that is why we keep track of how we feel, and have labs now and then.
So-not to make you hyPO, that is for sure, cause it is increased. And not to make you hyPER, either, but to get you to the point where you are feeling pretty darn good. Then life is good.
Shirleyanother short note. Seems there is are recurring theme for you and your wife to profit from our thoughts.
The posts have kind of begun with generalities, now moved on to statements and facts that disagree with what you have been told by your endo.If you do any reading, or consult with another endo, I think you find that everything Alexis says, and Laurel, too, contrasting RAI with TT, is right on the money. That is what I was trying to guide you to explore.
This is a beginning for you. Learn to question. Learn that your next job is to question your doctor about what he has told you. Or, go with a list of questions to another endo, see if they differ in their explanations.
As has been repeated many times, here, we are NOT doctors. But if you do a little reading @ RAI and time it takes to get regulated, and RAI and pregnancy, you both should question what your endo said. I have never, ever heard any doctor, or any study, stating an RAI is faster than surgery. It is the opposite.
And the issue of a scar from the incision, is pretty much a total non-issue.I encourage you AND your wife to read these posts, and generate your own questions from them, and seek more answers.
*In this whole Graves’ path, or in ANY medical health care encounter please consider doing the following. And do it.
1. REquest copies of all records, visits, labs. If you can access this info electronically, all the the better. Otherwise, have them send as a PDF or mail them to you. The patient needs to sign a medical release of information form, requesting records be sent to themselves. If you are told by ANYONE that they cannot do this, that is wrong. We are entitled this by HIPPA, and it simply makes sense. You probably keep records of your visa bills, income tax, etc. Same thing. You need to refer back to them, and check them for accuracy.
I had a TT, and you can find out much info about it. I was back to work full time in 2 weeks. I do not recommend that. It’s too soon full time, and it is nice to take advantage of time off when you feel pretty good and can do some fun stuff, too. Regarding my incision, I have won $1 bets with people who I have challenged to find it. (:It is almost like “studying” to read Laurel’s and adenure and other posts, but I think it is worth your time, in the best interest of your and your wife.
ShirleyHi Tim, I was referring in my post, to encourage you to explore more, to read more, and to ask more questions.
Kimberly has followed up with everything that I was concerned about.
1. There is not much logical or medical reason to tell you that RAI is faster, if your goal is to have a family. It is more of a slug all the way, for the reasons she mentioned.
2. RAI is not temporary, as Kimberly said, it is as permanent as a thyroidectomy. She explained it nicely.
3. Since your wife is on anti thyroid drugs, I am hoping that you both have been educated on the drug and the labs associated with it, as Kimberly referred to in her next to last paragraph.
4. I think Kimberly has the references to the guidelines she mentioned in her last paragraph. I suggest you ask her for them so you and your wife can read them.I do think a 2nd opinion from another endo would be helpful for you. Based on some of the concerns mentioned in this post. Ask questions, go back to the one you have with these topics. Challenge and learn and clearly know and understand.
To be clear, if your wife responds well to ATD’s, and you decide to go that route and get pregnant, be very well informed on all of those implications. Probably from a high risk gyn doc. Lots to know.
ShirleyHi Tim, I was referring in my post, to encourage you to explore more, to read more, and to ask more questions.
Kimberly has followed up with everything that I was concerned about.
1. There is not much logical or medical reason to tell you that RAI is faster, if your goal is to have a family. It is more of a slug all the way, for the reasons she mentioned.
2. RAI is not temporary, as Kimberly said, it is as permanent as a thyroidectomy. She explained it nicely.
3. Since your wife is on anti thyroid drugs, I am hoping that you both have been educated on the drug and the labs associated with it, as Kimberly referred to in her next to last paragraph.
4. I think Kimberly has the references to the guidelines she mentioned in her last paragraph. I suggest you ask her for them so you and your wife can read them.I do think a 2nd opinion from another endo would be helpful for you. Based on some of the concerns mentioned in this post. Ask questions, go back to the one you have with these topics. Challenge and learn and clearly know and understand.
To be clear, if your wife responds well to ATD’s, and you decide to go that route and get pregnant, be very well informed on all of those implications. Probably from a high risk gyn doc. Lots to know.
ShirleyBriefly, cause I have to be at Children’s Hospital at 0530 tomorrow am, and that is NOT my early morning style!
You are new to, you and your wife have time to think about things. Nothing is tomorrow or next week/month urgent.
As a PATIENT, not a professional, and there are folks on this board who have been in the same position you are in right now, I suggest to you that I disagree with the endo saying that RAI is the quickest way to move toward your goal of planning to have get pregnant and have a child. I suggest you use the search engine, plug in pregnancy, see what pops up. Having a thyroidectomy probably meets your goal of getting this all settled, and moving toward planning for a family. After RAI, it takes much longer to know where you are with your thyroid hormone status, and to being with replacement. After TT, it is much more definitive. I suggest you ask these questions to your endo, and I suggest you get a 2nd opinion on this subject, and also consult with a high risk neonatologist sometime and get their thoughts on this matter.In the meantime, good for you for getting on this right away, and even more great that you have a diagnosis. Being hyper is hell, as your wife ( and you probably know) is hell. She will feel better, and after a period of time, you will move ahead to a normal life. Really. Glad you found THIS site. There is a lot of crap on the internet.
Shirley, good night now. and welcomein reply to: Personal Experiences Going Hypo Post-RAI? #1176704It is my experience that TED and being hypo are totally unrelated. People get TED when they have been euthyroid (normal levels,feeling great) for years and years..or months and months. Like anything else, coincidences occur.
Gatorgirly, have you and your docs also considered that the two are unrelated? There is not literature, I don’t think, relating being hypothyroid (which both instances in these two posts, is intentional) to TED. I’d thing the largest correlation one could make is that the incidence of TED is higher in Graves’ people than the general population. It I am entirely wrong in my thinking, knowledge and understanding, please send evidence based references on this topic.From my own experience, being very cold, being constipated, and having other GI issues, and being unbelievably tired, were the hypo symptoms I had.
They went away with an increase in Synthroid. We had purposely been trying to decrease my Synthroid because my TSH was always suppressed, with accompanying T3 T4 changes. But this experiences, except for the hypo symptoms, is not similar to yours, different situations.
Shirleyin reply to: New problems with eyes #1175184Hi
1. IT is important for you to understand why the eye doc and ENT doc want to schedule this surgery (i am sure it is an OD or orbital decompression. ) Did they say it was because of pressure on your optic nerve? Please ask them this.
Symptoms (from your end) are decreasing ability to see the color red, and decreasing vision over all. this is usually determined by these signs and visual fields tests frequently done by a machine called the Humphrey visual fields testing (looking a blinking light in different areas.)2. Please ask this.
(I am saying this, cause I have had had TED for three years, and NEVER EVER has any of my five eye docs and neuro/ophthalmologist doc EVER been interested in my thyroid labs. BUT then, I never said they were high, as you did. Generally speaking, they are unrelated to the decisions of how and when to treat TED. UNLESS, AS KIMBERLY SAID, YOU ARE IN A HYPERTHYROID STATE AT THIS TIME.Kimberly’s quote:
“If you aren’t talking about eye surgery, but rather that your Graves’ has returned and is causing hyperthyroidism again, you have the same three treatment options as before: another round of RAI, surgery, or anti-thyroid drugs. Definitely make sure that you understand the pros and cons of all thee options.You are correct that the preference before doing *any* surgery is to get thyroid hormone levels stabilized in order to reduce the risk of thyroid storm. If that isn’t possible, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to reduce this risk.”
And I guess I want to know why you mentioned your thyroid labs. ARE they high? Not clear here. Maybe all of this is a huge misunderstanding and the docs should talk with each other.
One of the most important things here, is THE REASON you are having the OD. If it is for optic neuropathy, it needs to be done soon. Because you can lose vision permanently if there is continued pressure on the optic nerve. It would be critical, and if you are hyper, the endo and surgeons can work together to reduce any risk. If it is elective, for proptosis, bulging eyes, if there is some good reason to wait, you can. It’s never a good idea to have surgical procedures when we are hyPER. But, as you well know, I am not a doc or your docs. I am trying to give you some thoughts to ask your docs about, pronto.
Do write again, just read your post again, and I am thinking I now understand that the reason for your OD is proptosis only, based on your statement,
“By mid December my eyes were a mess watering all the time, sensitive to light, swollen, left eye bulging. I was able to see an Opthalmologist in January and as soon as he looked at me he said I was going to need decompression surgery.”So I think most of my post about optic neuropathy is probably not relevant.
In summary, it sounds like your endo wants another set of labs to see where you are before surgery is scheduled. I really apologize for the length of my post, most of which is probably not relevant. Seems some good communication is due to your from all of your docs.
Shirleyin reply to: I’m ready to take the bridge! #1176722Hi Karen, I agree with all that has been said. I do suggest that you express concern about having your Tapazole abruptly stopped. Certainly agree with you that you need thyroid labs, plus the other labs that would be relevant to ITP.
I have taken care of, and currently know quite a few people who have had ITP.
I don’t know if you are seeking information about it, and at this point, it seems like that it was mentioned by your primary, with little information to back it up…like LABS! So sorry he did not think to get them done when you were there. I suspect it could be a side issue, but here is a reliable, and reassuring site with information about it.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001562/I TOTALLY know how you feel right now. Been there. Being menopausal, hyperthyroid, with your red spots, plus you just feel like crap. Tough, really tough. I wish your husband would read your posts, too. They are eloquent, and express exactly where you are and how you feel. Any way you can get a ride to/from lab? Is there a doc you can call, even the primary one, and ask him to order a panel of labs, thyroid, and others (certainly RBC, platelets, etc. This is called a CBC. But I am sure he knows all that.
I REMEMBER CLEARLY walking outside during a blizzard in Iowa, with temp hovering around 5 degrees, in shorts and a halter top. I was finally comfortable. I was also crazy hyper, and the heat was making me crazier. I get it, I really get it.
How are you feeling tonight? Will you be able to sleep. Dig out a fan, if you have one.
I understand from your posts that these spots are NOT bleeding, as I think someone thought they were, in one of the responses. If your doc has mentioned the word “Petechiae” that is the medical term for tiny red spots under the skin. If you want to read a bit about the, go to a Mayo Clinic website, there an overview there.
++**seems to me that a big concern for you is the abrupt cessation of your Tapazole. I recall that you are in a sparsely populated in upstate NY, but do not recall if you have seen an endo, and/or if the primary has initially prescribed the Tapazole. He should know not to abruptly stop it without more information and labs, I’d think. And, if you are taking a lot of aspirin and NSAIDS, I am hoping that a doctor can prescribe a different med for your migraines. You know from your mom, that you will be ok if you have ITP.
Everything, cause you are hyper, makes your real health problems more real.
I bet Azguy had some good stuff for you. Will you be able to get labs, or be seen tomorrow? I agree with others, that perhaps going to an ER is an option, but I also feel that you need continuity of care, not a shot in the dark, with multiple symptoms in an ER. Most likely, they will tell you to follow up with your regular doctor, But it might be a way to get some labs done.
If, however, your heart rate gets rapid, over 100+, and you are hyperthyroid, I think you should go to an ER.I am hoping you get some help from your husband, and some good medical care soon. Can you get to an internist? All of this will be better in the future, but this is the NOW, and all of us care about you right now. I hope you get some sleep tonight, sleep deprivation makes all much worse. ARe you sleeping?
Shirleyin reply to: Anxiety Leave us Alone! #1176643(smiling) in reference to TV, try getting a small radio you can reach by your bed, and find an NPR station, then push the “sleep” button, it will play for around 40-50 minutes, then shut off by itself. Bet you will go to sleep!
Glad you saw your doc, waiting for the lab seems a good thing, and then you will know more. It absolutely does take at least 2 months to get labs that reflect you, and for you to evaluate if you are gettin too much or too little.
Yep, I don’ t like any of this, either!
I hope you catch up on your sleep this week, sleep deprivation makes everything worse.I think you’ll be happy with your TT. the numbness and tingling will go away, pretty par for the course right now. so is fatigue and lack of how you usually feel (if you can even REMEMBER!) but I am referring to the anesthesia, takes longer than you think to get energy (not the hyper kind)
Shirleyin reply to: Not new to thyroid issues, but new to site #1176670To Wendy.
I suggest that you go to a neuro-ophthalmologist, get a good diagnosis for your eyes. If you call, be sure to take your other records, a copy or report of the MRI and your labs. You HAVE TIME to know what you have, to understand it, and to make a right decision that is the right one for you (with your TED, or thyroid eye disease.) It does sound like you have a firm diagnosis.As Kimberly says, radiation for TED is pretty controversial, with most eye docs choosing not to include that in treating TED. My neuro/eye doc was very much against it. IT seems like no doc has taken the time to explain the entire course of TED to you. There are GREAT references on this site for it, but VERY BRIEFLY, there is an active phase, where basically no real treatment can be done, except to do things to treat the SYMPTOMS. Like sunglasses, eyedrops, a patch on an eye if double vision is too bad. THe active, or “hot” phase can last from about a year to 18 months or so. It is active, cause you eyes are continuing to change from one day/week to the next. After a while, they stop changing, and you are ready for the surgical procedures, if you need them, for your eyes. Totally depends on how much your life and vision are being affected. So the big worry about TED is losing vision, which happens to very very few people. There is mild, moderate and severe Graves. I had severe, most people do not.
Re smoking, what Kimberly says is right on. Smoking hurts TED, makes the symptoms worse sometimes. That is in all the literature. Good for you for cutting down. And you should ask about radiation and smoking, I am just a patient, but I think there are some real concerns in that area.
For what it is worth, I had no interest in having radiation for my eyes. And no docs in my area do it. I sure wish you good luck in your search. Remember, do not let yourself get pressured to do something you do not clearly understand, including understanding your TEd.
To jaqueinquotation-be sure to note that Kimberly mentioned that this study was:
1.SMALL-a very tiny study.
2. DONE IN AN AREA THAT WAS SELENIUM DEFICIENT
3. IT HAS NOT BEEN DONE WITH CONCLUSIVE INFORMATION IN AREAS THAT ARE NOT SELENIUM DEFICIENT.
4. It was for MILD TED only.IF DO DECIDE TO TAKE SELENIUM, YOU CAN REALLY HURT YOURSELF, AS KIMBERLY SAID, if anyone thinks more is better. It is not.
Glad you love your surgeon, and I am sure you will love your eyes afterward!
Shirleyin reply to: Help, desperately please if anyone can.. #1176463Hi rae,
I think everyone here can relate to bad day, Graves’ and relationship stuff.
And, as things went south when you tried so hard, and did so well, perhaps another way to look at this, with the tincture of time, is question if you really wanted a partner who would stonewall conversations, and have secrets. I realize it is probably too early for you to think about this, but it might be helpful to really list the pros and cons of the person and the relationship. AND!
when doors close, other doors open! As long as it is known that you are associated with someone, it kinda closes the doors for other opportunities and perhaps another person sometime. Anyway, something to think about.You did a great job, that is super … Really, with time, (and we all think it is way too much time…) you will be “you” again. Yep, this is true
The best of the best to you. Sounds you are a wonderful future companion for someone out there somewhere.And, if it never happens, you can still be super very happy and single, as I am (: If it is not the right person for you, it simply is not right. I met a ton of nice men, but not the right one at the right time.
Shirley
in reply to: Well, here goes! #1173564Hi, I am so sorry that this is happening. You have been through so much, and you (and all of us) thought you were basically DONE with all of this, and back to a relatively normal life.
Of COURSE you are worried and scared about having a brain scan. I have been referred for a couple of them, and both showed absolutely nothing, except that “for my age” my brain “looks really good.” Whatever that means. So this might be an overkill order by your GP, but on the bright side, you will learn about your brain!Whatever that means.
Having unknowns is very concerning. It is hard to live in limbo without answers. I am hoping the answer is simple for you.But, from what you have said, perhaps you better push a little harder re RAI and your thyroid. If you were told it was gone, yet someone else says it can be palpated, that raises more questions. I did not have RaI< so don't know if it is present and dead, or present and sometimes producing too much thyroid hormone, perhaps 'cause the dose wasn't high enough? Good questions for you to ask. You have been so helpful to legions of people on the forum. Of course, we are all here for you! Keep in contact with us.
Shirleyin reply to: How much Methimazole is ok when Breastfeeding? #1176636Bobbi, your post is a bit unsettling, for it seems you have jumped to conclusions that are incorrect. Especially #1, which may have affected the rest of your comments.
1. Your comment on her post that she had Graves’ for months and months is not accurate. It is wrong. I think you did not read it correctly. She has had Graves’ only a MONTH. She was already seeing an endo, and she decided to get a second opinion from another one. (In addition, her baby is being followed with labs and check ups.)
2&3-Yes, she was told that her labs indicated that she did not have a normal thyroid level. She was told by a NP. She was new to the practice,and did not even SEE an endo. This is not good medicine when the provider does not even see a new patient, when she went to an endo for a 2nd opinion. She was not able to question anything at the time, for she did not know anything until she received her phone call. There are a lot of variables to consider, which, if she had seen the endo for a 2nd opinion, one big variable is that she has been on MMI only a month.
4. FACT- of course she knows there is some crossover in breast milk. THat is why her baby is having good care, and having labs drawn. His levels were within normal limits.
And, it is a pretty blanket statement to say the the NP is qualified to make a judgement call to increase the MMI by 400%. But more significantly, she went to have a consult with an endo, as a new patient, and she did not even see one! I’d be very bothered by this, as she is.
5. I read your facts ,but I did not see your evidence based, references, or any reference for anything your said.
I don’t think any of us who replied, are making a judgment call at all. We have not told her what to do. We wrote about our experiences, and Alexis and Kimberly did provide valid references. You did not. Of course she needs, and plans to follow up on this with some endo, and what we have written provides questions for her to ask.
Shirley -
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