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in reply to: What to ask surgeon re thyroidectomy? #1169922
Hi REbecca, OF COURSE you can’t go on like this!!!!! I am so so sorry that you re having these experiences and feeling like crap. I have so much to say, but at same time, have concerns about sharing my thoughts about how you are being treated for this disease, for I am not a doctor.
I will start with your friend! What a great friend! I suggest you learn a lot from her experiences and doctors. Of course everyone may go a slightly different path with Graves’, but I so happy that she spoke up. Included in her advice to see her surgeon, which I highly recommend, I encourage you to look up prior comments on having a thyroidectomy. I chose it, and I loved having it. It seemed the very quickest way to MOVE ON and get this "effing" disease under control. I much preferred it over ATDs, which I felt strongly against because of the uncertainty, and RAI for the long time it takes to get to that "sweet spot" and get my life back. That is the way I felt. Seems to me that you should have been done with ATD’s a long time ago.
Clearly, the labs matter, but YOU and how you feel, also matter. A lot! And a good endo listens carefully to how you are feeling, along with the labs.
If there is anything I can do in the future to reassure about the surgery, along with your friend, I would love to be here for you.
I imagine it will take a while, but I encourage you to call tomorrow for an appointment with this surgeon.From my own personal view, I am not a bit willing to gamble with remission, whatever that may be, for the uncertainty is always there like a time bomb. I think remission is a rare happening.
Incidentally, I did live on England for a couple years (Bromsgrove) but I am an American living in SEattle. I am a certified Anglofile! Been back several times.
Regarding your endo. Sorry, but I do not think he is serving you well at all. Any way you can easily get a second opinion?
You have been going through hell, and things are not working for you. I think he is full of crap for having a feeling about Synthroid. That is just plain silly. there is no way he can have a feeling about it. It has been around for years and years, and I am pretty sure it is available in England, but it is more expensive than the generic levothryoxine, which is just fine.
http://www.netdoctor.co.uk/medicines/100002574.html Tons of people take generic over here, and some take Levoxyl.I am familiar with the NIH, and don’t know how difficult it is for you to find another endo.
I want to send this before I get timed out. I have just had surgery for TED, and seeing is more difficult this week, but wanted to answer you and give you hope and encouragement.
Shirleyin reply to: Pros/Cons about treatment plans #1169994Hi, I had a thyroidectomy. I did not get hypo at all, as many have described. I attribute that to very close attention to my labs, and how I felt. I was a little hyper after the surgery, but so much better than before. Labs about every 2 weeks.
When I began to feel a little tired (like how you feel if you had a bad nights’ sleep) I began Synthroid, on the low dose side, and labs about every 2 months, and did increase it, for I did not have my usual energy. I could tell when I felt like myself again, stayed on that dose for years, when I felt tired or felt like i had too much thyroid hormone, we reduced it.There a ton of people on this site who have had both RAI and surgery. Until you hear from more people, use the search box, and put both choices in, one at a time, you will get a lot of posts from people who have described their experience.
I know you will reach a good decision, and you WIll be yourself again1
Shirleyin reply to: Surgery and TED #1169075Oh, ok.
I do not think there is any relationship at all of having a thyroidectomy preventing TED at some time in your life. As you know, we are not docs, but people with experiences. But I do not agree with him. I don’t think you will find literature or, people on the board, who will state this relationship, as you have already wondered. TED is related, and more likely to occur with Graves’ people, but the whole disease is separate one, another immune disease process with antibodies that attack you eyes, the muscles of your eyes, your eyelids, etc.
From a personal experience, I did have a thyroidectomy. Developed TED over 4 decades later, and a very severe degree of TED>
I think it is my 8th surgery on my eyes next Tuesday.
Do you have any way of getting a second opinion, or asking the endo you have now much more about what he said? I would question him closely.
Is you Graves’ controlled now? Are you getting hyper again, or are you euthyroid? Sounds like you have done well with Tapazole all these years. ARe you having labs now and then, both thyroid and an occasional liver function panel?Regarding having the thyroidectomy, there are many good posts about pre op an post op recovery. Briefly, it is essential you find a surgeon who does at least 50 a year, they are most usually found in academic centers. There is not a lot of post op pain, but muscle soreness and slight incisional discomfort. Having someone to help you for 5-7 days is about right. Returning to a stressful job in 2 weeks is asking a lot. Taking at least 3 weeks off, or going back part time is much better.
It takes a while to recover from a general anesthetic, mainly you are surprised at how tired you are. But it is a short surgery.
There are so many good anti nausea pre meds now that nausea is rarely a problem
Shirleyin reply to: New Member of the Graves Club #1061977Hi Wendy Sue, I suggest you check with your doc before you use only sea salt. We need iodized salt in moderation. I am pretty sure that to avoid it completely, is not a good idea. Although you may get enough from other sources. The facilitators can weigh on this one, too.
ShirleyHi Christy, when I had my OD, I chronicled everything. Look up my name, or OD or post op day 1. To help you find it, the date I had it was February 3 or 4, 2009. I think you will find it very helpful and reassuring.
Shirleyin reply to: Surgery and TED #1169073I am certainly one of people who was THRILLED to have strabismus surgery to correct the double vision. I have written quite a a bit about it. My view on this is definitely that endos treat Graves’, but the only thing they would do regarding TEd is to refer you to an eye surgeon and a neuro/opthalmologist (maybe one visit for this doc, since your main problem seems to be double vision.) I am going to look at your original post, try to answer your ? in your post. Well, that did not work.
1. Both eyes done at same time.
2. Easy recovery, I was so please to be able to see one image
3. The muscles moved, depend on which double vision you have. There are 6 muscles.
4. Decided to have this surgery the minute it was determined my TED was stable, meaning that my eyes were not changing every week or to. In other words, they evaluate how to help you, with measuring your double vision. If it were changing every few weeks, then they would not have an accurate baseline to correct double vision
5 I was lucky enuf to feel the adjustment immediately. It was wonderful. the Double vision was ruining my life.
6/ This is all a learning process, so you can tell from my comments that i was not scared to mess with my eyes, I could not stand to live the way I was living, and regard this surgery as the most wonderful thing for people. They do it all the time on little kids.
Again-endos do not evaluate eyes.
Any respectable endo treating Graves’ is certainly familiar with hyperthyroidism, because that is what Graves’ IS!
Yes, as Kimberly said, Graves’ and TED are two distinct autoimmune disease processes. And TEd is more likely to occur, a lot more likely to occur, with Graves’ people. That is wy is called thryoid eye disease, it used to be called Graves’ eye disease.
Hope this helps Shirleyin reply to: Looking an Endocrinologist in St. Louis #1169094My opinion is that you need to be followed-now- by a good neuro opthalmologist, to be sure you have good information about your vision. I am inclined to agree with your endocrinologist, regarding your eye symptoms. they really don’t have a darn thing to do with TED. They manage Graves’.
I am not one to be encouraging about trying other methods to help my TED, but i was counting the minutes until I COULD have the wonderful surgical corrections available to me so I could have my life back. You can read my other post that I just wrote a minute ago regarding my experiences.
Shirleyin reply to: cold stage #1169098I second what Kimberly has said. You will see at the bottom of my post, my experiences with TED.
I can tell you that I walked down this same path. I was followed by a neuro/ophthalmologist through the active and cold phase of TED. Also by an eye surgeon who "does" strabismus surgery. I was measured and tested frequently, regarding my double vision. Prisms were tried, but they did not help me at all, although they help others sometimes. I ultimately had to quit my job because of double vision (read a lot of moniters and screens with lots of numbers on them)The double vision was the thing that was most crippling and life changing for me, and the strabismus surgery, when I could FINALLY HAVE IT (meaning my eyes were not changing much anymore, both by my report and objective measurements,
anyway, the strabismus surgery was WONDERFUL, MARVELOUS and helped me feel sane again. No more double vision.It sounds like you are not in the "COLD PHASE" or inactive phase of TED yet. Having said that, I encourage you to think twice about your cosmetic surgery, and get yourself to a good neuro-opthalmologist, to check your vision with visual fields, and other testing. In my experience, I had eye pressure, eye pain, and loss of vision (which I did not recognize at first on my own) and need a medically necessary OD (orbital deocmpression) to SAVE my vision. Be safe.
Most of the procedures we end up needing as a result of TED, are medically indicated. It is true that oculofacial surgeons to tons of cosmetic stuff, but you will pay entirely for anything that is coded electronically as cosmetic.
In summary, I am worried about your changing vision. Do write again.
Shirleyin reply to: SURGERY TOMORROW-palatal graft to lower eyelid #1169143Hi Kelli,
well, I have my post op appt. tomorrow. I have not seen my eye yet, for it is covered. Hard to negotiate withe one eye. It won’t be long enough for my brain to make new pathways, and then, in a couple weeks when I have the OTHER eye done, it will begin again. I am nearing the end, I hope of 7 separate eye surgeries,a nd i am definitely counting EACH eye as one surgery. It has been very hard.I have not had radiation to my eyes, but I am pretty sure if you put that in the search box above, you will read posts from people who have had this experience. Of course you are freaking out about it! I find that the more information I have the better off I am. I suggest you make a list of your questions, and be sure they answer them. I did this for everything, for example…
1. Why are you recommending radiation?
2. What other options are there for me?
3. What are the pros?
4.*what are the cons?
5. Is this a decision based on the geographics of where I live?
6. What results do you expect? When will I know there is improvement?
7. Will the improvement be temporary or permanent? Wrapped up in that question, is sometimes the purpose is to interfere with the progress of TED, which can possible decrease the degree of severity of TEd.
8, I suggest strongly that you sign medical release of information forms, available at the front desk, orhave one mailed, so that you get copies of all visits and all labs. It is impossible to remember all that is said during an appointment, and it is a whole new language and world.Best wishes to you in your decision making. If you understand stuff, I believe it is much more encouraging, rather than the total unknown. I hope others respond who have had radiation.Shirley
in reply to: Just diagnosed! #1169124Hi, I completely understand how you feel. I was a crazy person. The most life giving, reassuring thing that happened to me, was finally being diagnosed, have a reason and a name, for how I was feeling. Other people thought I was "losing it" and I agreed with them. Frequently, Graves’ is not thought of by docs as soon as it should be, and having said that, women tent to blame themselves for feeling so nuts, and are very hard on themselves for "being out of control." So, very sorry that you have Graves, but I am so very relieved for you that you KNOW something is wrong, that you know that you do not always be like this. YOu are taking the right medications, you have an endocrinologist, and are moving toward feeling better RIGHT NOW!
Maybe it would be helpful for your boyfriend to read my post, the experience of others, and the reference Kimberly provided.I do think it helps to try to put ourselves on the "other side," that is, being what used to be our normal selves, then pretend to look at the way we are now. It helps us realize why family, partners, kids, employers, DO NOT UNDERSTAND. Because, without some education and knowledge, we would not understand either.
Kimberly is right on target about refraining from making ANY decisions right now. while you are so sick, emotionally, physcially and every other way that Graves’ impacts us. This is a great site, and using the references, plus reading some old posts, will be very helpful to you and people who know you.
Do use this site a lot. It ‘s a good one, with great facilitators, and free of sensationalism and misinformation. Wel’ll help you get through this!
Shirleyin reply to: SURGERY TOMORROW-palatal graft to lower eyelid #1169138I am estatic to report that this whole deal went off better than I could have possibly have dreamed. The graft site in my mouth, which I expected non-stop pain from, does not even HURT! i have absolutely no idea why it doesn’t for there is a huge divot in my hard palate! The lower lid has long sutures taped to my forehead with a pressure dressing over that, so the graft can "take" in my lower eyelid. The anesthesia was great. I am an RN, and did work in the OR and recovery room, so I am happily familiar with the drugs, here is a short and brief summary. No general anesthetic at all. A little Versed, which is an amnesic, anyone who has a colonoscopy has had it. I call it the "forgetting drug," it is a great description. A litte fentany up front at beginning of surgery, IV (pain med, wears of really fast.) And propofol, which is a white substance given IV. The instant it hits your vascular system, you are OUT! But the magic of this drug is they can stop it put you in a twilight sleep, where you are conscious and follow directions (open your mouth now, Shirley, I need to get to your palate for the graft." and I do it. It is used in cataract surgery, strabismus surgery (open you eyes, Shirley, do you see one line or two? Do you have double vision? where?" And, of course you have no remote idea that you have done theses thing.s When the drug is stopped, you are immediately awake, and ready to go home. It is a magic drug for anestesia for short procedures, and the appropriate surgeries. It is called a MAC, moniterd conscious (not really, only when they want you to be awake) anesthesia.
Ok, any questions? I have been terrified of this surgery, but three different consults in three states confirmed taht I really needed to have it done. Sorry for typos, I have one eye right now. The best "outcomes,excellent results," come from the palatal graft. Some people opt for an artifical graft, but the success rate is not as good, the rejection rate is higher, and there are a few docs who will use ear cartilage. But in my research, and what all docs say, is the the palatal graft rate is the must successful, and lasts. Some of the other results result in lid lag and retraction in a period of time,
But, as we say on this site all the time, everyone makes their own choices for their own personal reasons. This was an EXTREMELY hard decision for me, and I truly was terrified. Now, I am ready to move on, get the other eye done in 3 weeks, maybe THEN my mouth will really hurt, with two graft sites. But I want everything with TED experience to be as over as it possible can get. It has been two years of hell.
Shirley I will write againin reply to: First Graves, now possibly diabetes?! #1169174If you read the link below you will learn a little bit. They are both autoimmune diseases.
Not being able to sleep, and anxiety are associated with too much thyroid hormone, as you probably know. Endo might want to decrease dose based on your labs and your symptoms. That does not mean you will be hypo, you might feel a lot better, something to consider.
If they think you might be diabetic, there are labs that are specific to diabetes. Did they do fasting blood sugars?
Have they told you why they think that?
So, sounds like you need to have an appointment with your doc to discuss the diabetes thing. Not sure how you felt like crap, was it hypo feelings?
Here is the link from NIH
http://endocrine.niddk.nih.gov/pubs/graves/
Shirleyin reply to: teenage daughter has Graves? #1169228Hi Hannahsmom,
it is great that she is doing ok, maybe even better? And, to be clear, your doctor did interpret the labs, telling you they are negative, which means that they are indicative of high activity of any of those test. And you can clarify all of this at the appointment next week.
Suggestions
1. Sign a medical release of information form at the front desk. Check or state that you would like all lab results and narrative reports of all visits. Then, when you get home, and say to yourself, "What did he say? I can’t remember this!
Or that!" That is the value of having a file of your (her) health records at home. It is your right, more and more people are doing it, and it a wise and careful thing to do. Do it for yourself, too. Hope you do. After you sign that, ask the front desk if they will print out her recent labs, and copy of your last visit. THey might, or might not, they might say Medical Records has to send them, but many offices will just do it for you right then.
2. Write your questions and Hannah’s before your visit, leave room for brief answers during your visit next week.
Shirleyin reply to: teenage daughter has Graves? #1169226Hi Brenda,
perhaps you need some help interpreting the print out of the labs. Once you get some health problems, it is helpful to have a beginning understanding of them. BUT, as Kimberly said, the interpretation is definitely up to the doctor. IT is a big subject. There are labs when being up or down out of the range a little bit, does not matter a lot, and there are others, where the range is really small, and the result being high or low is very important, and sometimes life threatening.
In this email, I am simply writing a little bit more about your daughter’s labs, and why your doctor said they were negative.Generally, the first number is the "result" The numbers in parenthesesis represent the calibrated range of "normal."
So, with the TPO lab, the result is 6. The range is between 0-20.
And the same with the other two.
Anththyroglobulin Ab, the result is 20, the range is between 0-40
TSI of 46% with the expected range to be 0-139%
This should help you understand why he called them negative. You can double check with the office again if you need more answers. It depends on the lab.And, some of the antibody labs results are listed negative, indeterminant or positive. In other words, no activity, unable to determine if it means activity, or high activity. As an example, here is one of my labs,and the way it is listed.
Anti-thyroid peroxidase (EIA) reference range: 11.2 [<2.0 SD negative] [2.0-10.0 SD indeterminate] [>10.0 SD positive] 0-1.9
I hope this helped a little bit.
Shirleyin reply to: teenage daughter has Graves? #1169220Hello. If you have any chance for you and your daughter to to the conference, I think both of you would like it a lot.
I went for the first time last year. Perhaps Kimberly and Ski will chime in on this post, for they might be able to tell you if there were other teenagers attending last year. I know there was a fifteen year old girl, for I sat next to her. She loved it.I sure understand how painful it is to have a child with this condition. She will be better. Bobbi mentioned that many drugs can be toxic. But the same drugs are also life-saving, and the other relevant factor is dependent on the dose. But I am not clear how the decisions have been made at this time, ie, you have said the endo is decreasing her Synthroid because of the labs and her clinical symptoms. How soon will there be a discussion on further treatment for her? As Bobbi said, it is really dangerous to be hyper with too much thyroid hormone running around. It’s hard on the heart, the weight we lose is muscle, we feel terrible. I know you have dealt with labs and levels for a long time, since she has had thyroid replacement for so long. But the symptoms are worrisome, and I am hoping that you and your daughter are not in limbo too much longer about this. I suggest you do have another discussion with the endo and your daughter about your reluctance about beginning treatment. Treatment does begin with ATD’s, and a beta blocker if necessary, to reduce the amount of thyroid hormone in her body, which is also very toxic, because it sounds like there is too much hormone. Perhaps the endo drew the antibodies for further information. I hope you don’t have to wait too long for the results. But I suggest the next time you talk to him/her, you are ready give the information on her heart rate, and all her other symptoms. I am not familiar with temporary flare-ups. But if it were my daughter, I would be asking the endo a lot of questions treating the symptoms and not treating the symptoms. Think a lot about Bobbi’s statement,
"So the main issue is to stay on top of your daughter’s condition, making sure that her thyroid status is being checked reasonably frequently. If she stays hyperthyroid too long, it can have long-lasting implications for her health."
And you are doing that. Try to learn more about anti-thyroid drugs (ATD’s) and maybe read some of the posts about how much they helped other people. Ask the endo if it is better for her health to treat the perceived temporary Graves’ with ATD’s anyway, for if she stays with these clinical symptoms, it is my thought that they are equally harmful for her if not more so, that taking the ATD’s.
I suggest you try the search engine above, typing in "teenager" or "childhood Graves" and see what pops up. I think I remember some posts on this subject.
I look forward to your next post,and wish the best of the best with her getting on the right path to feeling good again.
As you know all of this is a balancing act, with dose, labs, how we are feeling, and physiological changes that can be harmful if not treated. Then throw in a growing girl, and her own endocrine changes at the age of 14. At the end of the day, you will find the right path for her. We ALL feel that everything related to the thyroid gland takes to long to get the information, and treat.
Shirley -
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