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in reply to: EYELID SURGERY, ANYONE???? #1063203

Jake, YOU ARE GREAT!!!! THANK you so much for answering. I am running out the door (to play scrabble for the first time in my life.) Incidentally, have you heard of anyone having a stint to protect their hard palate??????????? ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” />
This is the first time I have used one of those funny faces.
I will later. I am still feeling very apprehensive about the graft site! I love Thai 4 star!
Shirley

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in reply to: question about methmazole #1062549

Hi Suz, yep, Kimberly is right, we are not medical professionals! However, I think it is critical to do what Kimberly suggested. Get copies of every lab, sign whatever medical release of information form there is to sign, at every office, specify that they be mailed/faxed to you.
Regarding your meds, how you feel, and action to take, here are my thoughts.
1. You certainly SOUND and feel hypothyroid, I know the feeling of being (what I call) pathologically cold, very, very well! So your endo needs to know that.2. Call today, tell them that you have significant changes in how you feel, try to insist the the endo call you back. Sometimes you really need to be very proactive and aggressive about this, unfortunately. The gatekeepers are difficult to get through. I wish you luck with this. And if you can’t get through to them (can you email) tell them you are frighteningly cold, and wanted to notify him of this change, because you know he plans to taper, then stop your methiamazole. Ask if he wants to reduce or stop the ADT. He has to know this info from you (as you vainly try to communciate with the office) so he can decide. As a fellow Graves’ patient, without being a medical professional, it seems logical that your remaining circulating thyroid hormone is pretty much gone, and you have too much ATD on board.
(I am NOT talking as a medical person, just one with some common sense……(: It’s the same thing you think.

3. I suggest you absolutely do the same procedure for having all records for your personal file-with your cardiologist.
If you do not already know and fully understand why you are on pradaxa, I suggest you ask him/her what the indications are for you being on this drug. Also, the cardiologist needs to hear from you, especially that you are having one symptom of hypo. Check your pulse, give that information, for he/she may want to decrease your metoprolol even more. Cause you have been taking it for when your were hyper, with a fast heart rate.

Just suggestions, I sure hope you can get some good communication going today!
Shirley, fellow Graves’ person

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in reply to: Graves and now Hypo have a question #1062554

Hi again, Jules.
I am sure there is not connections with taking hormone replacement for Graves’s so you are "normal," and affecting TED one way or the other. Certainly it is important to manage the Graves’.

I have had TED for two years, and all the ramifications of it to the max, as you have read from my emails.

From you email, it does not seem that you are taking two thyroid meds, but only Synthroid, which is a very good idea to stick to Synthroid. From your last labs, it looks like you were really hyPO with TSH 33.18. When you get regulated, you will feel so much better re Graves’, and TED is a separate issue.

With TED I suggest you see a neuro-opthamologist, can’t recall if you are or are not. I imagine the steroid drops and injections will not last too long, but you will feel relieve when you are on them.

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in reply to: EYE DROPS AND LUBRICANT #1062557

Thank you, Jules!
My docs are not so generous! If I get two samples, I am lucky. BUt some of them sting, and I am looking for a drop with lubricant in it, if it exists. People in the EYE office don’t have a clue. Seems they would have heard/ learned something!
Steroid drops sound soothing, wish I needed them….
Shirley

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in reply to: Total Thyroidectomy coming soon… #1062624

Hey, that’s GREAT!!!!! Having been there, and done that, I know how you feel. It is such a relief to have made a decision, and have it behind you. I do have a suggestion. When you talk to your endo, ask about the probability of residual circulating thyroid hormone circulating around for a couple weeks. Check it out, for i am wondering if you begin Synthroid this soon, that you might have too much hormone on board, and feel hyper.
Best, Shirley

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in reply to: important question #1062590

I have no idea. The whole goal of taking supplemental thyroid hormone, is to replicate what bodies do for everyone, when things are working well, or normal. When, for some reason, we end up with Graves’, and are hyperthyroid, it is a dangerous state to be in, as well as unsustainable in all ways. That’s why we take ATD’s and beta blockers for rapid heart rates.
Sounds like you have been there, done that, and now you are taking Synthroid, either because you had RAI or surgery.

So, when you feel like you always did, you are basically back to normal, with the exception that you need to take your Synthroid properly, in the morning, with a glass of water, on an empty stomach, and not eat for 1/2 hour, not take supplements for 4 hours, which DO interfere with the metabolism of the drug.

Back before Graves’. you could do anything you wanted to do, assuming that all other systems were go, and you were a heathy person . When you are on a Synthroid dose of 112 mcg, and you feel fine, you can do anything you want to do. YOu re normal!
You can exercise, it is fine. We do need to be aware of how we feel, though, for we may need more or less hormone at different times of our lives. Remember, if we did not have Graves’, our bodies would simply adjust to our needs, and you would never be aware of it, or ever think about your thyroid or pituitary. Think about it with another system. Our kidneys do their job, send urine to our bladder, we urinate, and we don’t think about it at all. BUT if we can’t go, it becomes a problem, and the medical reason needs to be diagnosed.

Sorry, since I really don’t understand your question, I just decided to have a general conversation about Graves’. As a further example, I had surgery many decades ago, with a bit of thyroid tissue left, and I was back in the normal population for many years. But much later, I got super tired and sluggish, definitely hypo by how I felt, and by labs, and began Synthroid. Then, after finding the right dose, all is ok again. So speak up if you have concerns about how you feel, thinking you could be hypo or hyper, otherwise, live you life the way you want, and be followed by labs now and then.
Shirley

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in reply to: Total Thyroidectomy coming soon… #1062621

Good job!!!! I am sure the stress you were experiencing with your unknown decision…is all gone! You will have a good experience! Mine was great, I loved the definitive outcome in as short a time as possible. It was sure right for me!
Once the decision is made, it is TAKING ACTION! And that is empowering!
Shirley

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in reply to: Total Thyroidectomy coming soon… #1062617

Hi, until you hear from people in response to your post, I suggest you use the search engine again, put in RAI. I recall several discussions about what to do afterward with contact with others. From reading the posts of others who have had RAI, (I chose surgery) I do not recall anything about 30 minute exposure for 30 days.

Either Ski, Kimberly or Bobbi have addressed this in other posts, and of course, what the docs say, enters into this conversation.
Having said that, I think that post RAI precautions are out of the medical knowledge of BOTH the endo and the PA. It makes me think they went on the web to find out info that they knew nothing about? It seem very odd that they are providing this information. You should get that information from the radiologists. That is the only thing that makes any sense to me!

So, if you get this before the offices close today, call the place that does RAI (if you know where that is,) ask how for the post RAI instructions regarding contact.

The other thing you need to weigh (as I realize you are trying to do!) is what to do next. You are prepping for the surgery, you feel confident about the surgeon, and you have learned that you will have another wait because of the SSKI you are taking preop Another thing to think about is to ask yourself if your aunt’s thoughts are clouding your own decision making for yourself.

So those are some of my thoughts. All of us have made this decision, all for our own personal preferences, and/or because all the options were not available because of geography.
I sure wish you luck with the rest of your day YOu will feel SUCH RELIEF when you are dealing with a "known" rather that the conflict you are experiencing right now!
Best, do write again
Shlrley

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in reply to: Strength Training #1062602

Well, I am thinking that your incident with the torn meniscus while cross country skiing is just something that happened.
It’s easy to do, for the skis don’t release like downhill. I did that a couple times over my years of recreational cross country skiing. Had a couple meniscectomies, they are easy to recover from, and one or two times with a physical therapist should help you do any strengthening you need to do.

My experience with trainers reflects Kimberly’s comments. They have not been good, and I did not feel, at least in my own experiences, that they really knew very much and charged a ton of money. I’d use that money for more lift tickets instead! I suggest you get a referral from your doc for post op PT, plus some exercises to strengthen your legs. And if you can get another PT referral for arms and shoulders, learn a bit more, you’ll be golden. Plus some rapid walking. I have free weights sitting in my kitchen, they are not used enough, but you can go to a class at the Y and learn how to use them for biceps, triceps, etc.

It sounds like you are really doing very well, and of course, getting in shape for skiing makes sense. But what happened to you, happens to a lot of folks! When that ski goes sideways, it is not a pretty sight for a knee-and it is so easy to catch an edge!

Glad you are in a good place with Graves’!
Shirley

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in reply to: Newby #1062608

Hi Joni~ unfortunately, I am a PRO at TED! Been there, done all if it! Including Solu-Medrol IV. Tonight I don’t have time to write a lengthy response, and tomorrow is pretty crowded, too! But I will write back. In the meantime, you can put my name in the search engine, see what I have written along the way. It may not address all your thoughts, though.

I had a wonderful response when I had the steroid. DV went away. But it came back. As you know, and Kimberly said, it is an anti-inflammatory. I would think that it does not reverse the fibrosis that is occurring with the eye muscles, but it is possible during the active phase. That is when I had all my steroids, for I also had optic neuropathy, so they definitely relieved the pressure on my optic nerve. I am EXTREMELY GLAD that you are seeing a neuro-ophth doc. Along with that doc I was followed by a strabismus doc (pediatric eye surgeon who "did" adults with Graves’. I did have strabismus surgery, and that really did help my DV and make life worth living. Much improved. But the wait until the cold phase, or inactive phase, can take FOREVER!

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in reply to: Total Thyroidectomy coming soon… #1062614

Yes, do come to the conference in Boston in the fall! I went for the first time and it was MARVELOUS~
Shirley

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in reply to: Total Thyroidectomy coming soon… #1062611

Hi, I had a a SUBtotal thyroidectomy. The thinking a long time ago, was exactly your thought. Remove most of the gland, leave a little bit, and there will be much less hormone circulating, followed by a good possiblility that you will end up euthyroid. This worked very well for me, and my story is similar to yours. Had baby, had all your symptoms, breastfeeding, working, blah blah, hot, weight loss, eating like two sumo wrestlers…etc. Following PTU and beta blocker, I had the surgery when my baby was about 8 months old. I continued to nurse after the surgery. In my case, I was euthyroid for amost 40 years, then became a little hypo, began Synthroid, all was well again. The two bumps on my road have both been in past two years.
I developed TED, with a vengence, and am still having surgeries to revert back to pre TED. The other bump is when I agreed to reduce my Synthroid (very gradually, 2 months between at the very most) because my TSH is consistently suppressed. The endo and cardiologist thought that it would be better to have less hormone circulating (osteoporosis and slight increased risk of afib)
However, it put me into hypo hell, my labs did not budge, and I was stunned to realize that being hypo is as hellish as being hyper. We are gradually increasing back up, my labs still have not changed, and I feel much better. )Except I am still ridiculously cold all the time.)

But I have from the recent conference, and the other facilitators, that the standard of care now is to remove the entire gland, wait for the stored circulating homone to dissapate, then you "know where you are" when beginning Synthroid replacement.
I have not had RAI, but to me it resembles the thinking of a thyroidectomy, for if the does is "not enough." then there is sitll some hormone circulating. Other people can speak to that better than I can.

My experience with the surgery? Easy. Slight tender neck. Felt better hyper wise, immediately, did not go hyper (cause in my case some gland is left) My biggest regret is that I went back to work too soon. Between baby, husband in med school, me going to school and working, this was a GOLDEN opportunity to take a break from everything~ To actually have time to myself, my baby and my life. Didn’t do it!
I cannot say anything negative about choosing the surgical option. It was right for me. I did not consider ADT’s at all.
Shirley

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in reply to: Newly diagnosed Graves #1062661

Hi Connie Jo,
Of COURSE you are overwhelmed! I am not sure if you will find someone on the board with that particular combo, but you might try writing myasthenia gravis in the search engine, see if anyone pops up. You can also search the archived posts.

I agree with Bobbi’s thoughts about not waiting so long to treat your hyperthyroid symptoms. It is a very good idea to get a 2nd opinion, and when that permission is granted, I suggest that when you call to make the appointment, be sure to tell them you have been diagnosed with Graves, you are hyper now, and have not begun treatment. That is enough information for the voice on the other end of the telephone, for they are usually not medically trained at all. But I suggest you ask for the "first available new patient appointment" (their jargon.)

Another advantage of treating your hyperthyroid state, is that everything will seem more manageable and less overwhelming to you when you re less hyper. At least that sure was my experience being hyper. EVERYTHING was overwhelming, I was snappy, irritable, anxious, hot, crazy hungry, with a racing heart. Not fun.
I know that your endo and neurologist need to consult with each other.
Meanwhile, it seems that you have done some research on both MG and GD. I am glad you found this website, it’s a good one.
A very good reference for MG is the NIH site, http://www.ninds.nih.gov/disorders/myas … gravis.htm

I had a couple good friends with MG who have had it for over four decades. Now I have not kept in contact with them, but there MIGHT be a good supportive website for MG. Check around.

Regarding Graves’, really, it is manageable, albeit darn frustrating sometimes, for it takes a while to get back to the normal you. But we all are doing it, and in varying stages of the process. Look forward to hearing from you again.
Shirley, another Graves’ person!

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in reply to: Driving and Ted …Conflicting Advice..cont… #1062671

Hi sutan!
Holy Moly, I am sure sorry that you have had these experiences! I may not have mentioned that after my emergent OD, I was unable to completely close my left upper eyelid. (I did have an ENT and eye surgeon together for the OD>) Of course, the fact that it was ok before the surgery and not after the surgery, was relevant to me, but not to them. They said they could fix it later.

Re eye muscle surgery, or strbismus surgery. I have spoken with at least four people who have needed more than one of these procedures to "get it right." One of them had the same disappointing (and dismaying) results you had after her first one, DV was much worse. I was very prepped to expect that there might be additional strabismus surgeries to get it right. And, like everything else with this damn disease, you have to wait AT LEAST 2-3 months to know the final result. Really, you cqn’t rely on much regarding results just a few weeks after the surgery.

Since I just had my eyelid surgery, I can’t comment on the outcome yet. When you look at me, eyes are NOT symmetrical, and I have given up on that, I think. Same deal, when muscles are cut and changed, it takes at least 2 months to know result, have all healing occur and swelling completely disappear. After my eyes are totally settled down, I do plan to get prisms in one eye to help with the DV. It is the doctor who did the strabismus surgery who will prescribe the prisms. THeir techs are great, take an hour with me each time.

Generally, all docs avoid the driving discussion. It’s like the elephant in the room. When everything was at its’ worst for me, and I had no idea that my vision was decreased because of pressure on my optic nerve, I DID have an accident, and it was my fault. It will be on my driving record for 5 years! I was devastated.
I am driving now, on surface roads and in the daytime. I don’t drive at night when it is dark and wet (Seattle.)
Probably the biggest hindrance to driving now is the SUN! I am super photophobic, and wear sunglasses, sometimes two pair, and athe biggest visor hat I can find, to block the glare. When I walk down the street it looks like I am saluting all the time, for I am using my hand to block the glare.

Sorry this ls so long. Want to send it before it gets rejected!
Shirley

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in reply to: It’s 10 years ago #1062683

Hi Antoinetta,
Hey,’what’s going on? I completely understand hyper hell, as almost everyone on this board can relate to! Probably your experience can help someone else? Now, I am assuming you are on the molasses slow road to getting you, your labs and the right dose of hormone replacement all in place, which WILL HAPPEN! Every darn thing about Graves’ and TED takes toooooooo long, for we rightly want results and feeling normal again as soon as we can!

Keep slugging away! I am fairly new, joined over a year ago, but I did go to the marvelous conference last fall. Bobbi posts fairly regularly, plus Kimberly and Ski are wonderful. I have heard about Jake, but I don’t recall a post from him for the past year.
Shirley

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