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in reply to: UPPER EYELID SURGERY TODAY #1174189
Hello everyone,
It is post op day day #5 after my upper eyelid surgery. The purpose is to lower the retracted lids, to cover more of my eye. It has not been a smooth post op course. I had a lot of pain, not expected at all with these procedures.
Turns out I had a corneal abrasion on each eye, one much more painful than the other. Took about 3 days to get that resolved, but putting on one contact lens over the abrasion. Apparently there were rough surfaces on the upper eyelid, plus one suture poking my cornea. Super painful. There is a lot of swelling still,despite having head of bed elevated and lots of cool compresses.
I don’t know the outcome of this yet, we are hoping that the lower lid will allow at least one of my eyes to stay closed while I sleep. Although Graves’ was terrible, I have found TED more life altering that GRaves’. And the lasting effects seem permanent. I would not wish it on anyone.
Shirleyin reply to: Well, here goes! #1173509To Angie,
I sent a PM to you, suggesting you post your own thread about your upcoming surgery. There is a lot of good advice and support on the forum. Several people have had a thyroidectomy in the recent past. Kimberly’s suggestion is very helpful too, to use the search engine.
You’ll read a lot about what to expect both before and after the surgery. So glad you are moving forward on this, so you can begin to get your life back. It is a long process, but it will work.
Your teenagers might appreciate reading about Graves’ too. There are good references to explain what it is like, not only for the person who has it, but for the family members.
Shirleyin reply to: UPPER EYELID SURGERY TODAY #1174185Sure do appreciate all of you. Thank you. Lots of unexpected pain so more later
in reply to: Dependent on Hormone Pills #1174135A good idea to review the following, which are the guidelines for posting references on this site:
6. Facilitators have the ability to edit or remove posts that contain spam, inaccurate medical claims, inappropriate links, information on so-called “alternative” therapies*, or derogatory language towards another poster. Posted links must come from a well-established, peer-reviewed medical journal (New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid, etc.) or from a recognized medical association or governmental entity (American Association of Clinical Endocrinologists, American Thyroid Association, National Institutes of Health, etc.).
It seems that it is very important for you to continue to find references that contradict choosing RAI for a treatment. They are not very helpful references for all the readers on this board, for they do not meet the above guidelines.
All of us have our own preferences for one treatment over the other, and sometimes other medical issues dictate or rule out one or more of the treatments.Aside from the ongoing dialogues on RAI, I am wondering how YOU feel, since your TSH, T3 and T4 indicate that you are in a state of hyperthyroidism. Has the whole subject of RAI come up in your world because you have not been responding to the ATD’s? Or are you taking them now? Have you had liver function labs done along the way? In general,
I am hoping that you feel ok, and that your heart rate is in an acceptable range.
Shirleyin reply to: Well, here goes! #1173491I think you two guys will have a lot of fun (?) comparing notes!
Shirleyin reply to: New to the forum and In the Army #1174172I am hoping you hear from other service members. And thank you for your service. ****Glad you got an accurate diagnosis and treatment.
Arizonaguy (I am not checking back to be sure I have the name exactly right, but he posted a few minutes ago) also just had his RAI today. Maybe he has been in the service. Even if not, you have a lot in common, with both of you having RAI.
Shirleyin reply to: Well, here goes! #1173489Interesting. Glad you have this experience behind you.
When you say “my doctor” do you mean your endocrinologist, or the people in nuclear medicine? Didn’t the people who did the RAI give you any guidelines or information at all?
But, as you say, you have decided to follow the Canadian guidelines. They seem extreme and overcautious to me, but that certainly cannot hurt you, and the fact that you are doing what you have decided to do is very empowering for you. Do keep writing, tell us how things are going.
Shirleyin reply to: Dependent on Hormone Pills #1174128Hi.
Sounds good. You are making your choice based on your own personal choice plus research and consultation with your endocrinologist. There are a few people who have ben on ATD’s long term. Kimberly has been on them for several years, I am not sure how long now. I am sure she will be informed on any current research on this topic. I imagine there will not be long term studies, though, for taking ATDs’ long term is pretty current thinking. And the precautions of using them for just a short period of time only, for the purpose of getting to a safer euthyroid place for the purpose of choosing either RAI or a thyroidectomy, have been replaced by some endocrinologist as a valid option of treatment. I am not sure if “long term” use has been defined, but given the nature of Graves’, I imagine it means lifetime use, just as it is with thyroid hormone for RAI and surgery. As you probably already know, labs, and liver function studies, especially LFTs’ at the beginning, are necessary.There is a possibility of experiencing a hyperthyroid state again with ATDs’.
If this happens, you will again be faced with the choice of RAI or surgery. But there is no point in thinking about that now. I hope your endocrinologist agrees to work with you on this. Not all endocrinologists do consider this a third long term option, for the historical treatment in the past is that the purpose of ATDs’ was to get us away from the dangerous hyperthyroid state so we could have a permanent treatment.
Good luck on beginning the ATD’s.
Shirleyin reply to: Question – Tapazole #1174152No, it has been a long time since I had it, but for some reason, I always took it in the morning. Probably no reason!
ShirleyHI, welcome to this great forum. You’ll find some good friends who have posted recently who are also planning to conceive. You’ll probably hear from them.
Well, your hypothesis about the causal relationship of eating seafood on a cruise and having diarrhea, may possible be a faulty assumption. I’d entertain it as a possibility. Having seafood is not associated with loose stools. A greater possibility is the usual food contamination at some point, similar to traveler’s diarrhea. BUt the important thing is that I don’t think you should base your thinking and planning of what you eat around this experience.
And we absolute need iodine in our life, and so do our thyroids. So glad you are not going crazy with this.I hope the facilitators weigh in on this with some good references. But, generally speaking, there are times before certain scans and tests when low iodine diet is recommended.
I think you can eat sensibly, along with your husband. Maybe a dietitian can help you with a low cholesterol diet, but there should also be some reliable references from the American Dietetic Association.
I really don’t think you need to focus on a low iodine diet for yourself, but I am planning on Kimberly or Bobbi providing good information for you, rather than just my opinion.
Where are you in your treatment? Taking ATD’? Beta blockers? Are you seeing an endocrinologist? That is another very good resource for you to ask about diet.
Shirleyin reply to: Dependent on Hormone Pills #1174126Up to you. But I hope your choice is not to remain hyperthyroid. Maybe you will choose surgery (I did, and many others did) Maybe you will choose ATD’s. Kimberly and others did. YOu have chosen not to do RAI. That is fine.
I wish you the very best in your decisions.I think some of your fears and apprehensions are based on poor information. But it is your information. You have made a choice not to do RAI. So have others made that choice. Nice that we have three treatment options.
I suggest you explore one of the other two with your doctor, make a decision, and move on with your life. That is pretty much the goal of all of us. It is very hard to be hyper, it is hard in multiple ways. I sure hope you feel better soon with whatever you decide.If it is important for you to know about the standards of care in the French medical system, and if you would like to know the standard of care in France for Graves Disease, I suggest you explore it in an academic approach, so you receive valid information.
Shirley
in reply to: Well, here goes! #1173487Hi Azguy, yes, I think you have received much good advice.
I am so curious about the Canadian guidelines you referenced, that I plan to write to them to ask if they are their current guidelines.I live just below the border from Canada on the west side of the country. I have a couple friends who are MD’s in nuclear med in Canada. They completely disagreed with these guidelines, so I am wondering if they are still current, and/or if it is a geographic difference (which happens.) Anyway, I am surprised, for as I understand it from my Canadian friends, the Canadian Health Service is much more careful with expenditures for some procedures, than the U.S. system. But these guidelines are in great contrast to that.
Best wishes tomorrow. Do what you need to do for yourself, and get the rest of your information from Nuc. Med tomorrow. As gatorgirly and others has said, the endocrinologist is not the right resource for information about RAI. If you had more time, you could have contacted them ahead of time, but you will be just fine receiving the info tomorrow.
I look forward to hearing from you again! Maybe even tomorrow!!
Shirleyin reply to: MY TERRIBLE TIME WITH TED-a review #1174103Thanks to all. My wishes are minimal. I just want at least one eye to stay closed at night. I am not very encouraged that it will.
Thanks again
ShirleyGood response, Bobbi!!!
This is ShirleyMicki, I had a thyroidectomy over 5 decades ago, in my 20’s. I got TED with a vengeance in the past 2 years. I wrote a post about it just a couple of days ago. Take a look at it. From the extensive reading I have done, it seems that there is a percentage of Graves’ folks, who get TED. There is speculation that many people have very mild eye symptoms, probably more than has been reported.
But those of use whose lives are really impacted by TED, have moderate and in my case, severe TED.I don’t think you can count on any of the labs you mentioned, telling you anything one way or the other. Except, recently, it has been shown, as Kimberly mentioned, that they might be helpful when deciding to stop ATD’s, see if remission is a possibility. The antibody labs are in their infancy, and most are super expensive, and some insurances won’t even pay for them, for IN MOST instances, they are not necessary for diagnosis or treatment of Graves’. Sometimes, they can be helpful in distinguishing Graves’ from Hashimoto’s, I believe.
Shirleyin reply to: 3 months in -feeling good #1174139Hey, Laurel, that is so great!!! I sure am happy for you. I am having more work on my eyes with a surgery this Wednesday. Maybe after that, we may even meet some day!
Shirley -
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