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in reply to: Synthroid Recall #1175820catstuart7 wrote:mariaboo wrote:Why would I want to take anything at this point? If you have your thyroid removed after RAI, do you still have to take meds?
YES! You need thyroid hormone to live. You won’t die right away if you don’t take it but in time you would become increasingly ill. Do an internet search on people who’ve tried going without – their stories will convince you. I don’t know anything about this recall but hopefully your doc should.
Mariboo, YES, YES and yes. As the above post states. We have to have thyroid hormone in order to live. Everything you read in the other posts is accurate. If you did not take it at all, you would die, but not for a while, but when you died, it would be for that reason, unless you had something else going on.
It is highly the docs won’t know a thing about it!If anyone is interested in checking their Synthroid, record the stock #’2 provided in Kimberly’s post, call your pharmacy, and they can check to see if they have those stock numbers in their supply. It is very likely the pharmacy/and or pharmacist does not know about it, either. Mine didn’t.
Shirleyin reply to: Starting PTU today or tomorrow #1175840Amy, just sent a PM
I am not sure how much my upper eyelids are lower. They are still healing, I have not listed those procedures on my data below.
I know many people who had successful lower lid elevation surgery. But I wasn’t one of them. I have grafts from my hard palate, and on retrospect, not a very good surgeon. But others who have had the same procedure, had great results.
Again, cause I have a very severe case of TED, I suspect my experience does not reflect yours. And…): No, neither eye closes completely at night, and I do have to tape them closed. I probably need an orbital decompression in the eye that has never had one, and another one in the eye that did have one. Right now I am sick of surgeons, and surgeries, so am taking a break from making these decisions.
Shirleyin reply to: Starting PTU today or tomorrow #1175832Hi Amy, I did great on PTU. If you want the name of another good endo in Seattle PM me. I had surgery, wanted surgery, had a lot of good reasons, plus my own preference to have surgery. Since your endo does not have a legitimate reason relating to your health I think he is out of line big time for not assisting you with a referral to a surgeon. I also worked in surgery at UWMC for 20+ years, so I can use my contacts for anywhere in Seattle , find a good surgeon for you to speak to.
(My mom died on Chistmas day, also.”
Shirleyin reply to: Replacement Hormone after TT #1175870Because, right now, you still have thyroid hormone floating around (although no more will be made because of your total thyroidectomy)
If you began the thyroid hormone right away, (think about it) you ALREADY have too much (as you said you are hyperthyroid now, I am not familiar withe 3+ number, I am only familiar with lab values…..) so why add more to it?You are still pretty post op, and you will be tired, primarily because that is how you feel after surgery and anesthesia.
My own experience is that after my surgery, it was about a month or so before I began my Synthroid. Depends on labs and how you feel.
Shirleyin reply to: Bulging eyes #1175800I suggest you see an ophthalmologist, telling your history, asking, if you don’t know, if you have had mild TED. It is an oculofacial doc who does these procedures. They are all over the place. Go to a couple, get some opinions on upper eyelid surgery to correct this.
ShirleyYou are welcome, oahz.
THere is no way for anyone to answer this question except your insurance provider. I think I gave you quite a bit of useful information for you to collect for questions. Probably a good idea to do that for the sixth doctor.
Ask them the pros and cons of his/her suggestions, and the pros and cons of the other suggestions you have had from other docs.
Shirleyin reply to: Well, here goes! #1173551Hi AzGravesguy!
That is wonderful! It has been so great to see you evolve over the past few months! You probably have done this, but take a look at your first posts! You have accomplished SO MUCH! Happy about the clown pants. I know that is a part of getting back the you whom you know. Just very, very happy for you.Your posts have been very helpful to others, hope you never leave completely!
ShirleyHi, I have a LOT of cooking to do this afternoon, so not a lot of time.
Thought I’d address a few of your questions.
All from my own experience.
6. After you fully recover, you can do anything you want to do. I began to swim and jog 3+ weeks after surgery. I’d do what the surgeon says, cause they know what the did. But the global answer is you are golden to do anything you have always done after you heal.
1,2 and 3
Which wall? That depends on what the surgeon sees on the orbital CT, and they will get an MRI if needed. Generally, the orbital CT gives them the info needed. Because the population of this forum has TED thyroid eye disease, the rationale for what walls to do depends on the degree of fibrosis of the six eye muscles, the degree of orbital fat, and the deficits we have. None of this seems to apply to you, so I would ask each surgeon why they choose a certain wall. If they have a choice, I’d guess they would do lateral wall, cause there are fewer nerves there, including the optic nerve, to be careful of. It also depends on what they like to do and are good at doing.Lateral wall-I had the lateral wall removed, lots of folks do, there is no hole in my head, the CT’s you referenced do not look at all like the CT’s I have seen, which show the muscles, orbital fat, etc etc. Another good question for the doc.
5. No. You’ll have a general, all the swelling has to go down post op, and you won’t know exactly the measured outcome until about 2-3 months later.
3. Not sure, ask him.
4. See lateral wall above. It will probably be a heck of a lot better than it is now. Lots of “normal eyes” have different measurements, they just don’t know it.8. Our TED lids are retracted as part of the disease process. Ask the doc, but it seems to me that your lower lid is retracted cause of your proptosis,
so ask if is likely it will accommodate to your retracted eye. They may/may not know.
7. The orbital walls provide a place for our eyes, I guess that is the purpose of them..
Gotta cook, two complicated recipes, welcome to the forum.
Yes, Kimberly is right, it will be interesting for you to hear from us, but if you ask these specific questions of the surgeons, you probably will be much more informed.
******not all surgeons do the same procedure, and do not expect total concensus.
Shirleyin reply to: Tremors, what to do? #1175760Hi K, when you do talk with/see your doc about the tremors and how crappy you feel, add to your list the question that Naisly mentioned, and has been mentioned on this post several times. As if you can divide your ATD dose when you take it. That gives you the flexibility to play around with it to see if it makes a difference for YOU.
Azguy has written some great notes to you. He is “giving back” so much now, that he sees a bit of light in his own life. Which is exactly what this wonderful forum is all about.
Yes, your anxiety and concern about home and health insurance is reality based, that is for sure. His comments about insurance are very enlightening and interesting for you to remember. I know you are not there right now, but he has some good points for this situation.
AND, June 13 is 1/2 year away. Lots can happen, including the new health care world that will slowly be enacted. There is a lot unknown about that right now, but it can’t be anything but good for you. Also, in six months, I am hoping you feel better re Graves. Which will help with decision making.
I am sure you and your husband never thought you would be in this position with your financial and health life. I suggest hanging on to Azguy’s thoughts about insurance and no insurance. He has slugged through this whole deal uninsured.Immediate need for you? I sure hope you can get some response from your endo. As someone said in some post, when you first begin ATD’s and have hyper situation, labs every 2 weeks, plus CLOSE AND FREQUENT communication with the endo about your symptoms, are the right way for things to happen. What is your heart rate?
Shirleyin reply to: TED and muscles going back to normal #1175770Hi Jules,
WEll, it is a puzzle that fibrosed muscles have become UN fibrosed. And, is this associated with no double vision, or do you have enough vision left to tell? Apparently the un_fibrosed muscles are in the eye that the neurosurgeon did the crani on that severed the artery that caused your blindness? Certainly causing the blindness is most likely unrelated to the eye muscles and their changes.
You know so much. Did you look at the CT’s yourself? Based on your experiences, having followed all of your blog, I want to be sure YOU have made the same observation (:It will be interesting to see what other docs say.
I am still having trouble believing it, unless you saw the baseline orbital CT and a recent one. My money is on YOU!
Shirleyin reply to: Tremors, what to do? #1175754This is part of being hyper, and a diagnostic sign of having Graves’ in the very hyper stage. Not sure if you are on/not on beta blockers and ATD, but if you are or arent, as Naisly said, you need to contact the office, get labs today, get the results today. Actually, I remember now that you are on meds, but don’t recall which ones, so I suggest a phone call, your doc/endo will most likely increase a med, and ask you to get labs. HOpe you have called by now~! (:
Shirleyin reply to: Help with understanding test numbers please #1175736ewmb wrote:Thanks for the help. I have not had the appt. with GP yet. I have the lab values. T4 12.8 top is 12.5 on this lab. T3 uptake 31.2 top is 37% on this lab. Free thyroxine index 4.0 3.9 is top on this lab. TSH 4.633 4.5 is top on this lab. So I am not way over on any of these values but still can’t figure this out. I read your link but I am post ablation so did not think it applied to me too much. “Hi ewmb, you are right, the values are pretty much ok. Sounds like you have a marvelous GP. That is so great. I am glad you will see him soon.
I am thinking, because you are in the middle of menopause, that much of what you are feeling and experiencing can be menopause related. Menopause can be very difficult for some women, and weight gain, frequently goes with the territory.
It is really easy to attribute weight gain to hypo, and there is that correlation for most people. But it is very hard to tease this all apart when experiencing menopause. Not sure what you mean when you say you feel hypo, does this apply to feeling more tired now and then, and is this a lot different for you?
Or are you sleeping less well, because of hot flashes, etc.I am sure you will not tweak your med by yourself, and that you mean working with you doc, but it is wise to do that with your doc.
If you/GP/endo decide to increase your thyroid hormone, remember that it takes a long time, at least three months, to have much of any idea if it has made a difference, and for the labs to reflect it. YOu may notice that you feel better, and that is the first hint that this might be the right thing to do.
Remember, that before all the graves’ business, and for most people on the planet, our bodies do the job of regulating the right amount of hormone for us. HAVING SAID THAT, there a ton of women, who as time goes by, in their late 30’2 40’s 50’s, get a little hypo, and end up needing and taking thyroid hormone.
The best of the best to you, and do write again!
Shirleyin reply to: searching for eye mask #1175743Hi catstuart, I found the website Dry Eye Zone very helpful. They have a choice of different types of goggles, and eye covers that you might find helpful.
Check it out. I got a couple choices for my eyes that don’t close at night, but they really did not help with keeping my eyes closed. There is one with a moisture chamber, which I really liked, though.
Shirleyin reply to: Graves’ and anxiety. husband making me sick? #1175707Karen, you are right on target with your reaction and your feelings. I cannot imagine, under any set of circumstances, having my husband making appointments for me. You are not wrong. The combination of having a husband with this degree of control of others, plus Graves’, results in exacerbating how you feel. But you are also justified. From what you say, the whole subject of your husband, and his need to control others, is a subject that needs to addressed at a future time.
But, in the meantime, there are some posts to husbands, and I think Kimberly had a good reference (or it might even be on the website) for family members.
In any case, since he is interested in your medical life, it seems to me that Graves’ is what he should be reading about.All of your appointments can wait, and you can make them yourself.
You indeed have had some crappy medical experiences, and everything you have described, has been traumatic, and resulted in so much unnecessary stress for you. A mild suggestion for you, in the future, get some second opinions on all these proposals for surgery.I have had breast cancer twice, had chemo twice. My mother had esophogeal cancer (also died on Xmas day) and she told me she was DONE with any interventions. I would not dream of telling someone else what to do, and I fully respected her wishes. I am so sorry that your mother-in-law had this experience with her son. How hard for her.
But right now, realize that your thoughts and feelings are right on target.
I hope the garbage can was metal, for they make such a nice noise when thrown!I actually don’t recall where are with your ATD’s and beta blockers. Knowledge is power. ARE you getting copies of your doctor visits and of your labs? It is very helpful to do this, for they are YOUR medical records. about you. I totally understand the totally hot feelings you had. I had’em . They are terrible. Then, at one point, I became hypo, and although it was hard for me to believe, I thought being cold all the time no matter what i did was equally bad as being hot.
*You will get better, you get back to being you, and in the future you will be able to help someone like you who comes to the forum for the very first time!
Shirley -
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