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Hey, it really does work! (Quinine.) Your mom knew! Give it a whirl. What part of the country do you live? Are you able to go to the conference?
I am in Seattle, I am going. First one. Have had thyroid issues and eye issues big time the past two years.
Glad fog is lifting. We have ALL been there, I sure have. I am super old now, no fog, it can happen!
Tired, good night!
ShirleyRe leg cramps. The standard drug for that used to be quinine, but it is not available anymore. BUT, here is a safe and easy fix for you to try. Buy a few bottles of tonic water (which is basically "quinine water" I have very rare, but very painful leg cramps or spasms. I find this works well, sometimes in a few minutes. If I had them more often, I would probably take a little swig every evening, see if they go away. When I have them, I HAVE to get up, bear weight on the leg, seems to be the only thing that helps me. Sounds like the cramps were present before the meth?
ShirleyYes, it’s normal for hyper. I still remember it. Bobbi gave such a good explanation! The heart RATE (beats per minute) you are having now is within the normal range. A fast heart rate is usually regarded above 90, for normal people, which we hyper folks usually aren’t! If it keeps getting higher and higher, like 120, over a period of time, you are in overdrive, should call your doc.
Shirleyin reply to: potassium iodide drops #1064632we are strong! We are women! We think for ourselves. Gosh, genuineruby, cheers to you! My post re working related to some deadline that came up, but this is a whole different plane and situation. That does sound like the right decision for you, especially given the circumstance of your co-worker’s brother, and the feeling that you would have to rush back to work.
I am sure you will sleep well tonight!
shirleyin reply to: Surgical Consultation is Scheduled #1064613Hi gatorgily, thought I would add my experience to the other posts.
I pretty much walked your path, made my decisions, never looked back. After reverting back to hyperthyroid, toxic state each time PTU was stopped, I wanted to move ahead, have the surgery.I had no interest in bouncing back and forth anymore than I already had. I was not interested in being on ATD’s long term, period. The surgery seemed so much more definitive to me.
I had the ATD’s before the surgery, so of course I was not hyper when I had it. I felt very calm and settled with my decision. YOu have done your own research, and lhc11’s list of questions is great. If you read her posts regarding her post op course, that will be helpful, too.
I did fine, throat a little sore, neck a little sore, more tired for a week or two which I attribute to the general anesthesia after-effects. I really enjoyed soups, things that I did not have to chew a lot for the first week or so.
Regarding the incision, people either have the kind of skin that tends to form a more pronounced scar from the incision..or they don’t. My incision is not evident at all, unless I point it out to someone. From my work in a hospital OR, I have found that surgeons take special care when they close the surgical site.
In my experience, I felt great after the surgery, I was euthyroid for over 30 years, with no need for Synthroid. Now I take Synthroid, occasionally the dose is tweaked depending on the labs and how I feel.
I think you will do very well. Look forward to more posts from you.I developed TED many, many years later. Now I am ready for the eye muscle surgery, and really looking forward to having it.
Just a small number of people get TED, so it is a non-issue for most people.in reply to: potassium iodide drops #1064629Agree with lhc11. Try hard not to postpone the surgery! It is sooo easy to put work before everything, but they will all live, and you will be doing one more step toward better health and getting back to baseline. I also took the drop, and had the surgery, the explanations you got reflect my understanding of the indications for taking them.
Best wishes in your decision making! Do you already have sick time all arranged, etc? I am guessing that there is always the potential for a crisis at work. Hope you are able to proceed. shirleyin reply to: Support Groups – Anyone #1064622very interesting and relevant question!
I know that there are plenty of breast cancer support groups almost anyplace. I know that through hospitals and in the communities, there are support groups for other cancers, Parkinson’s, multiple sclerosis, plus drug and alcohol addiction, fobromalgia and some more I am forgetting.
I live in SEattle, and there is not a TED or Grave’s support group here. I think it takes the initiative of one of us to start one, ask their endo (or some endo to be involved.) I suspect this site has many suggestions for starting a support group. Unfortunately, I feel my plate is too full of multiple medical appointments right now to take it on. In the news bulletin for this site, there is news of groups in other parts of the country. The facilitators can do a much better job of telling you how they get started.To specifically answer your question, sort of, I think that they are much more prevalent in larger cities and towns. Without knowing, I would guess that there are more of them on either coast, but that is a supposition. I am orginally from Iowa, going back there for a visit soon, and will check around to see what is available in that state, but I think it is more community specific, perhaps.
in reply to: Tired of being tired #1064832Maybe a good idea to have a thorough physical. I don’t know about the distended abdomen and extreme fatigue. I know it is yet another appointment, but probably the right thing to do?
in reply to: Methimazole and Liver Enzymes #1064638Hi. I thought of a few things for you to think about, but Bobbi covered most of them very well.
I am wondering if you have been on a blood pressure med prior to all of this, or if the endo prescribed it as one of your three meds for being hyper. Also wanted to mention to you that from what you wrote, your fainted because your BP got too low?
Another reason for low BP, especially when you are on new anti-hypertensive meds, is to remember to drink water. It is possible to have low blood pressure, even faint, if you are "volume depleted," ie, there so too fluid in your blood volume.
If high blood pressure is something you have had before the Grave’s, there are lots of different BP meds, and sometimes the prescribed amount needs to be decreased if you go in the basement with your BP.If your liver enzymes continue to soar, your endo might take you off meth. I know you mentioned you had read a lot of concerning things about PTU, I just want to say that I was on only PTU, got along fine. It is good that there are two drug choices, both have their issues, but both are anti-thyroid drugs. The important thing is to get out of that hyper state!
Sounds like you are getting good care. Shirleyin reply to: Prednisone-What to expect? #1064720yea! sounds great. It makes such a difference when we have confidence in our docs! Glad to hear it.
in reply to: Prednisone-What to expect? #1064718Hi John, I am glad you are nearing the end of your prednisone. Are you tapering the dose? Usually, with prednisone, there is a long, gradual taper, when you decrease the dose by 5mgm or so every week. Good idea to ask that question, if you have been told to abruptly stop the drug. Before you go to the doc,maybe a good idea to talk to a pharmacist in the drugstore. This depends a lot on the dose you are taking. As Bobbi said, it is a complex drug which should not be used over an extended time, it has many serious side effects. Generally, when it is prescribed, it is referred to a "burst" of prednisone, indicating it has a beginning and end in a short period of time.
My experience with prednisone was encouraging and discouraging regarding TED. It really helped my vision when I was taking it, but when I stopped, the vision got worse again. ( I had 60mgm for one month, then a long taper.) This is because I was in the first part of TED, which is the inflammatory stage, which, as you know, your eyes are changing a lot, getting better some days, worse than others. When we react so positively to the drug, that is an indicator that we are still in the "active," or inflammatory stage of TED. After many eye measurements, the TED stops changing your eyes, then we are in the fibrotic,
or "cold" phase of TED. That is when surgical interventions can happen. I have been in the active phase for a little over a year and 1/2. Based me saying my eyes are not changing all the time, plus many measurements taken by repeated visits to eye docs and neuro eye docs, I probably am in the cold phase. Because prisms have never helped my double vision, and because the measurements of damage to my eye muscles can be relied on to make decisions, I will have strabismus surgery (eye muscle surgery) in the near future. The origin and insertion (how the muscles are attached) inferior muscle, which are very fibrosed, will be moved, with the goal of allowing me to look straight ahead with no double vision. He said that they are the ones preventing me from looking up, and there might be a 30% improvement in looking up. It is a day surgery, and a general anesthetic is used. The docs who do this surgery are pediatric eye surgeons who operate on TED patients.
But this is not around the corner for you. Later on. I will post my experience when I have the surgery, plus how much it helped.John, I need to have my morning cup of coffee, and wake up a bit. I will send some very valid references to read on TED, which really helped me a lot! Plus this site. I don’t recall right now if they can be accessed electronically. If not I can snail mail them to you at a later date.
**Read the explanation of TED on this site from the home page, and the frequently asked question. As I recall, you will learn
more about the progress and duration of TED.Have you seen a neuro-eye doc? Is that the eye doc whom you are seeing? I strongly suggest that you do that. They have a sophisticated visual field machine to check your visual fields, and they have different tests to check to be sure that the inflammation and fibrosis is not pushing on your optic nerve. One of the biggest signs of that is inability to recognize colors, with the color red being the first one to look less bright. In this paragraph, I am just telling you my experience with this.
I am one of the unfortunate people whose optic nerve was being pressed, and I did not have peripheral vision (looking to the side) in my left eye. For this reason, I had a surgery that was indicated only because of the pressure on the optic nerve, but this does not happen to most of us. IT is very rare.I feel like I am bombarding you with too much information. Sorry. Since you are a guy, and many more women have this disease, if you re interested, I will ask this man in Chicago who had TED if he would be happy to visit with you on the phone.
I got his name/number through a circuitous route of people. I called him, and it was very reassuring to me to talk to him.
I presume Bobbi will be glancing at this post first, so she can tell me if this is ok to post this info.
1. At this point, so early in this process, it seems right that your endo sees you before he orders labs.
2. You have not mentioned if you are seeing the endo because you have Graves’. Do you? That is an entirely different subject than TED.
3. You will probably lose the 5# you gained when you stop the prednisone, and your appetite will not be so voracious.
shirleyin reply to: Tired of being tired #1064826Hi Mish, several of the facilitators, plus folks who have had RAI, are better equipped to answer your questions about pre/post RAI. (I chose surgery.)
I suggest you put RAI in SEarch, there have been some good discussions, and I think that will capture them.
I think, when you hear from the other folks, that you will find that they were NOT told to refrain from pregnancy for a year. From my experience with friends who have had it, they stayed away from others for close contact for three or four days. You will get better info from the others.Re itching and benedryl! go girl! It is used as an off label sleep aid, so if it is helping you, that is great!
Do you plan to call your doc to tell him @ chest palpitations/pain and tremors? Also your pulse rate, what is it? He really reduced your propanolol a lot, and perhaps he needs to know your symptoms, so there is a dose in between 120mg and 40 mgm a day. It is also important to not have your body racing like a steam engine.
Just curious, did he mention switching to PTU? For some reason (just my own experience) my levels did not bidge with meth, but began to go down nicely with PTU.
Sure wish you well, this site is a lifesaver, that is for sure. Look forward to hearing how you are doing.
Shlrleyin reply to: Ques on dosing #1064662OH, shucky darn! (has anyone heard that expression, it is from my Iowa farm days) I certainly meant to mention the pharmacist, and did not. Thanks, Bobbi.
And Joy, I thought long and hard about saying that "eight o’clock meds" could be anywhere from 1930-1900, depending on how crazy the floor was when it was time to pass meds. But, even when it was crazy, I, like you, ran around and hung the antibiotics, ’cause that really did make a difference.
Are either of you going to the conference in San Diego? I am beginning to want to meet all my new friends on this site…Shirleyin reply to: Ques on dosing #1064658Just my opinion, I do not think it is a big deal at all. I don’t think you will be doing any harm if it off by an hour or so every now and then. Your sleep and your kids have priority in this one, I think. It will be interesting to see what the facilitator say,. If you are very concerned, and it sounds like you have thought this through, and you are not super concerned..but if are, you can call endo office and leave your question. I probably would do your plan #2 when your hours are altered a bit and not worry about it at all.
Thanks, aoip 96! I am so glad you are on the other end of all this eye stuff, and that your results were so good.
Hi Blessings, I DID get the tape. It is expensive, but miraculous compared to the tape that was tearing the skin on my eyelid and cheek! Did you have eye sensitivity and tearing BEFORE your eye muscle surgery? I have a lot of it, hoping there is at least a fighting chance for improvement. Especially with the glare of the sun, it creates blind spots. I will have eyelid surgery after the eye muscle surgery. Did you have that, too?
How did you feel after your eye muscle surgery? I do have a call in to the office, no return call yet, but I would love to hear from you about your post op course. For instance, could you tell right away your double vision was less of a problem, or did it take a couple weeks? How did you FEEL after the surgery? I had an orbital decompression, and was able to walk a couple blocks the next day. How long did you feel it was essential to have someone to help you, or is it even an issue?
Or was your vision really blurred after the eyelid surgery so that you could not even see your computer? Thanks for reading all this, I thought if I gave some concrete answers, you could better answer my multitudinous questions!
Shirley -
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