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in reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181560
shugie!! Guess who lives down the street from me!!!
Dave Matthews! And he is the niecest guy in the world. I see him in the grocery store with his twins!
Shirley (:in reply to: Worried thyroid removal will ruin my singing #1181579NIH website states 0.33% permanent damage. As an RN who has worked in the operating room for years and years, I can tell you that risk is super very small. Much smaller that very common procedures that people have all the time without questioning.Sometimes, after the procedure, the vocal cords are a bit swollen, and voice is different for a few weeks. Other than immediate post op notice of this, which resolved, I do not know of any instance of permanent damage.
I had no issues. I did have strong feelings and opinions about RAI. Did not want it. But that is the beauty of usually being able to have a choice, whether our concerns are valid, just a preference, and/or “just because.”
Do what feels right for you. So, from my view (I sing in a chorus now) I did not consider it much one way or the other Had a good surgeon, figured all would be fine.By the way, so sorry you have to deal with all of this. I found thyroid eye disease works than Graves’, if that is possible!
Shirleyin reply to: All normal but feeling terrible. #1181539I suggest keeping your thyroid hormone that you are not using right now. There may be another dose change.
Shirleyin reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181555And..I certainly know how you feel. Look at my history! And years later, my eyes, are tearing all the time, they smart and burn, and i am very photophobic. My experience is very severe, and fortunately, very rare!
Shirleyin reply to: EYEDROPS TO HELP W SWOLLEN LID & EYEBALL? #1181554Hi. To review, I think I recall you are new to Graves’, had an allergic reaction (rash and hives) to methimazole, was prescribed a steroid pack for that, and it helped both things. But…you eye symptoms sound like you may have TED, thyroid eye disease. Have you seen a neuro-ophthalmologist? I suggest that. Or, be SURE you see an eye doc very familiar with TED. The first choice is best, and if you do call, say on the phone that you have active Graves, and think you may have active TEd.
YEs. Absolutely, the prednisone will help your eye. But for a short period of time. Usually used as an emergency measure to protect the optic nerve, it is is compressed int he active stage. I think your next step is to see if you have TED. Do you live in an area where you can find a neuro-op doc? A referral might help.
Steroid eye drops are used VERY very conservatively by good doc. They can cause many irreversible eye issues if used long term.
Shirleyin reply to: RIA Verses MEDS #1181481Hi Curlyred! So so glad you wrote! Welcome the club you’d prefer to not to join. But really, we are a super good group!!!! You really ARE a newbie!
First thing you need to know, is that there is no urgency for you to decide RIGHT NOW. I am wondering if you have been told you needed to choose right now or soon, or if you are trying to figure all this out,and thinking ahead. This is a good time for you to use the search engine, troll around, use key words or phrases like “just diagnosed” or “treatment.”
But, for right now, here are some thoughts for you.
The treatment steps are pretty defined in sequence, but the choices of treatment are usually up to you. And you have time to make them. First step is to get you safe, without too much thyroid hormone flying around your body, making you feel crazy, hungry, losing weight, shaking hands, fast heart rate, and all the crap that goes with being hyper. The anti thyroid drugs WILL HELP you with this. True, there is a small chance of elevated liver tests with ATD,s a very small one. If it happens, it us usually near the beginning of treatment. You doc will be , should be doing regular labs, a thyroid panel, and liver function tests. Ask if he is. Id like to think this has all been explained to you, but have learned that this does not always happen. Plus this is all new and scary, and hard to remember everything. Better to get you safe with ATDs and watch your labs. One of our facilitators, who will be back next week (two Graves conferences this next week in Baltimore and Chicago) has been ATD’s about 9+ years now. There is always the chance of recurrence. If that happens, then one of the other two choices requires a decision.
Now, I am not sure why you have been told that RAI and ATD’s are your only choice, for if you have done some reading of this forum,or elsewhere, you know that a third choice is TT (total thyroidectomy) In almost all situations, it is YOUR choice. Sometimes this choice is governed by the fact that you do not live in an area where there is a good and experienced surgeon close enough to you, who does this procedure. So, if that were the case, TT might not be the choice that you have to make. As you see on recent posts on this good (and reliable) forum, several of us have recently had the surgery, which they chose. The reasons for choice are all over the map. I have just listed one relating to TT. Someone else may have strong feelings and opinions about not wanting surgery. They prefer RAI. For others, RAI is the last thing they would do. They just don’t want to, for their own reasons, valid or not. All is ok. But we do need a treatment. And if your labs are ok, you can go along for a while on ATD’s while you get your bearings. You have time, as long as you are having ATD’s. Graves’ does need to be treated, and untreated Graves is dangerous and life threatening. That is not a choice!As you see from my history below, I had Graves a super long time ago, and had surgery. REgarding eye involvement , you do not want me as a role model! Many people have little or not eye involvement, or maybe scratchy, itchy and red eyes, sometimes a little bulging. Many do not even notice eye involvement. And, as you see from my crazy history, I did not have eye involvement for almost five decades. So can happen anytime!
I suggest you begin to arrange to have copies of your labs, you will be learning how to interpret them. And keep good track of how you feel. Not sure if anyone told you, they should have, that if you get a big rash or hives, be sure to report it (while taking ATD’s) this is true of any drug. It really is auite interesting to me that there are MANY drugs where liver involvement is a possibility, rarely are patients told about it. So good that there is more provided with this, then action can be taken.
It’s late and I am tired, so signing of now. Wanted to warmly welcome you to the forum. You already have a whole new group of wonderful friends you don’t know yet. You will get better, there is an end to this, and none of it is very fast, sorry to say.
Shirleyin reply to: Itching/Rash? #1181472Not common, one of the side effects. You should report it, and also think of any other reason for the rash. I’m not a doc, of course, “just” another poster here, I’m guessing it is the Tapazole. Report it tomorrow morning, or today is even better, because it sounds like a generalized reaction to the drug. Your doc should know this.
Shirleyin reply to: Newly diagnosed #1181419Hi and welcome,
you HAVE been having one rough ride!
You have an interesting history, sorry you have been so up and down and feel badly. From what you have said, I am wondering if the following would be helpful for you.
1. Get copies of all your labs since you first had thyroid labs taken.
2. There are some good references here on what the labs mean. On a very basic level, the TSH (thyroid stimulating hormone) is a very small number in the range listed, meaning your thyroid is being stimulated to produce TOO MUCH thyroid hormone.
3. So you know, Graves’ IS hyperthyroidism.
4. This is the way I see your history. You had the weight loss, had more energy, and when you went to the doctor (primary or endo) they did labs, the labs fit with your symptoms, and you began methimazole. Methimazole is an ATD (antithyroid drug) and you were on it to decrease the abnormal amount of thyroid hormone circulating in your system (Graves’) Apparently, one of your labs accompanying your thyroid labs, indicated that you should not be taking methimazole. There are a few serious side effects,and lab results that indicate that you should discontinue taking it. This should have been explained to you.
5. I would ask your doc why you were taking Armour thyroid. This is a thyroid replacement drug that is rarely used, and almost never, if ever, to begin to treat hyperthyroidism (Graves’) Levothyroxine, like Synthroid, is only T4, then the body converts what is needed to T3. Armour, is both T3 and T4. You need to ask your doc about this.The general pathway for treatment, is first to have the Graves’s diagnosis, then begin taking ATD to get you safe and feeling better. Hyperthyroidism is pretty serious. The ATD’s do that. Both ATD’s have some clinical (you) and lab results which can be concerning. You should have had all of this explained to you. Generally, methimazole is the first line ATD that is prescribed. Some people cannot tolerate it, or the labs show a reason to stop it. There is another ATD called Tapezole, or propothiouricil, that is also used in certain instances.
I do now know what you got switched to from ARmour, but it sounds like you now taking only levothyroxine. At this point, further decisions depend on labs, and how you are feeling. The three choices for treatment are:
1. continuing on ATD’s (this is fairly new, to be on them for a long period of time, but it is working for some people)
2. RAI
3. Total thyroidectomy (TT)
There are tons of discussion about making this decision, and the indications for doing so on this forum Briefly, personal choice matters quite a bit. Some people have strong feelings and opinions, justified or not, it does not really matter, if all choices are available to them. Other variables that matter, may be if an experienced surgeon who has done plenty of thyroidectomies, is in the geographic area where you live. In answer to your question, we are all over the map with our choices, for different reasons. Some are medical, some are personal preference. Kimberly (facilitator of this site) has been on ATD’s for a number of years. When on ATD’s one needs to realize that if you become hyPER again, one of the other choices may need to be made. Some people want to “get this over with” as soon as it is safe to do RAI or surgery. Others, want to wait a long time, hoping there might be a chance for remission (pretty rare.)
I suggest you ask you doctor what he is thinking, and to explain to you more about Graves’ and you.
I chose the surgery, I just wanted to move on as fast as possible. not having a thyroid is as worrisome as being hyperthyroid. Other than taking hormone, it has not changed my life at all. Need to adjust the dose now and then, based on how I feel, and labs.
I am sure you will hear from others. I realize the T3 and T4 I mentioned are confusing, not to mention all of this, but you will learn more on the forum, and I hope from your endo. How do you fee now?
Re food-no real rules, and diet will not “cure” Graves’, but there are a few foods, namely kelp and seaweed, which contain large amounts of iodine. I eat a healthy, balanced diet,and my thoughts are to eat anything you want to eat, with the exception that we should take our thyroid hormone on an empty stomach with a glass of water, and not eat for 1/2 hour, and not take supplements and vitamins for four hours after, cause it interferes with the metabolism of thyroid hormone.
Shirley-
you will get through this, and you have a lot of new friends.MedicAlert has stretchy guy ones.
My thought is that it is better to wear it all the time, never take it off. Regardless of age. Ya never know!
Shirleyin reply to: TT yesterday afternoon #1181438You are doing beautifully!! Remember, take it easy. I am so happy for you!!!!
ShirleyI have read your post, and the other posts carefully. Perhaps I have still missed something re your thought about Graves’, ATd’s, MMI and pregnancy.
THis is my summary of where I think you are.1. Diagnosed Graves’ for five months, taking PTU.
The big question I have that relates to my other questions and understanding of your situation is this! Are you referring to pregnancy in the future, after your TT and after you are stable with thyroid supplement? Where does pregnancy enter your current status. You are not pregnant now, are you? No, I do not think it is a big red flag to switch to MMI, unless you ARE pregnant. Otherwise, why not? You want to begin to feel better and have stable labs, so you can proceed to have a TT. I think that is your plan.2. I am wondering why you do not want to consider MMI. Why? Usually it is the first ATD recommended. There might be an additional reason for you to consider it,
cause you hate the way you feel on PTU. But how do we know what is contributing to how you feel? ***With Graves’, the big things to consider, are your labs, THE TREND AND CHANGES IN YOUR LABS WHEN YOU BEGIN AN ATD. So you should know this, and perhaps all will make more sense to you.3. Because you clearly (I think) have chosen not to have RAI and/or stay on ATD as an ongoing treatment for the time being, the progression of things, so you can get your live back, and begin to plan to get pregnant, is to have a TT (total thyroidectomy.) This can be done as soon as you are safe with your labs.
4. I had Graves’ and after my first pregnancy, most likely developed Graves’ after my baby was making his own thyroid hormone. I had a TT, and proceed to plan and have two more children.
It is not something that you care to hear right now, but other than having good care, being recovered from your surgery, having a good OB person, and a good pediatrician lined up, while you are pregnant, you really don’t need to think a lot about all the risks, other than a normal pregnancy. Cause that is probably what yours will be. At the end of my post, I have enclosed an NIH website for your reference. But for you, it is first things first. And that is knowing you have Graves’, being treated with ATD’s. moving forward when you are comfortable, to have a TT, recover from the TT, get regulated on thyroid hormone and begin planning your family.
5. It is helpful for us to really KNOW that when we are hyper, in the middle of Graves’, we are different people. Before we receive ATD’s (so we have less thyroid hormone floating around) and making us (me) crazy, irritable, worried, sad, depressed, hungry, losing weight) it is very hard to listen to anyone about anything. After I received PTU, and was less hyper, I realized how unreasonable I was about every single thing in my life. You could not tell me anything! I was pretty hostile. It was very helpful to me when one doctor explained to me that this was “normal abnormal” and it would be better. And it was. As ChristinaDe said, when we are relatively stable, and out of that crazy place, that is the time to take your time to make the next decision. So, as has been mentioned by others, it is best for you to understand the relationship of the labs to how you feel.
6. Are there other health factors that may contribute to how you rae feeling, I suspect it is all Graves’, but a reasonable question to ask.
7. Have copies of your labs and visits. Can you do this?
Lots of good thoughts, support and advice from the other responses. Sure look forward to hearing from you again. Be aware that with medicine, ther is no “cookbook” answer or treatment to most things, and certainly not Graves’. So you might get differing opinions, and that does not necessarily mean one is right or one is wrong. Of course, there are stinkers in every profession. Sounds like you have good intuition, and will avoid one if you find one. It is true that living with a person with Graves’, having Graves’s, and treating a Graves’ patient is challenging. That is why there are so many posts from family members about how difficult it is to live with them when they are hyper. I am certainly an excellent example of that.
So, at the end of the day, you will move through this with your own good decisions, in your own time.
Keep writing, please respond to me and correct whatever understanding I may have that are mistaken in your case.
Shirleyin reply to: TT yesterday afternoon #1181433SO happy for you! Great news. I also had a very smooth post op course.
Take it easy, and review the comments regarding the post-TT period. My biggest mistake was that I felt SO good, I did too much, too soon, meaning wish that I had let people do the more tedious stuff we all do, grocery shopping, laundry, cleaning the house…. It is also humbling that I was much more tired than I expected to be post op. The fatigue was a big factor for resuming my usual life. I found that sitting or lying down for a half hour in the afternoon was really rejuvenating. I’d never done that in my life. But it is perfectly reasonable and expected.
Use some of that time when you are really feeling pretty good, to do something that you have been wishing you had the time to do that is fun, or something that you need to do but never get around to it. In my case, sorting through photographs, getting rid of clothes i don’t wear. But the best thing I did was get away from home for almost 3 days to visit a friend in another state.
ShirleyGood subject. Here is some additional information from my very recent experience setting this up for myself.
I just got my MedicAlert set up. However, in speaking with them (their website was all messed up when I was trying to use it) one important thing they said was to wear it all the time, day and night, never take it off, and get a bracelet (my choice) that was very difficult to GET off. They had me measure my wrist, and the intention is to have it loose enough so medical personnel can turn over the tag and read the back, which has the information. Because we cannot choose when we might get slammed by a car or a bicycle, or have some other incident where we could not give our own health history.
Also, they have a national and international registry. I listed the things I wanted on the back of the tag, definitely including Synthroid, Graves’s, the fact that on eye must be taped closed at night (cause of TED) and that I am now on warfarin.
Shirley
In addition, there is an 800 number for docs anywhere in the world to call, that provides an expanded explanation of health problems, as well names of docs and emergency family/friend contacts.Of interest, I just got back for 2 1/2 weeks in England and France. One man got really sick, and he did have a MedicAlert, because of his severe life threatening allergies and his cardiac status. The French docs used it, and it worked very well.
in reply to: First symptoms of TED #1181357Hi,
I’m so glad gatorgirly mentioned the importance of getting baseline measurements. Over the four years since, I have written about initially getting TED, I have felt this was so very important, and i neglected to mention it to you this time. The exam should include several tests for color recognition. With TED, sometimes the first change with color (that you probably won’t notice right away, or maybe ever, without some of the exam tools, is a change in the color red (not as bright, seems more dull.) If the eye doc thinks you are at the beginning of TED, he/she may or may not do a Humphrey Visual field test (a machine) that test visual fields. Far more sophisticated that the wiggly finger test. One thing that I was very humbled by, is that I did NOT notice the changes in my eyes (a field cut (blind spot) and double vision (was intermittent, and both the doc and myself blamed it on needing new glasses.) IT was not until things got extreme, especially with the double vision, that it was life altering.
I hope you do not have TED,and if you do, most people have relatively mild experiences with it. Scratchy eyes, dry eyes red eyes, and sometimes it all resolves after quite a while. Light sensitivity is another thing with TED. Even now, I must wear sunglasses and a visor.
ShirleyBoth of us will be looking for your next post after your visit in December!
Write anytime
Shirley -
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