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in reply to: Please help choosing a right eye doctor. #1170395

Hi, I am sorry you have TED. i have it too, and it is tough to have. Since you are pretty new, I am not sure how much you know about the path of TED. There is a lot of information in the forum, but sometimes it is hard to dig out when you want it RIGHT NOW. I understand.
So-the short version of TED. There is an active (hot) and inactive (cold) phase. Basically, the active phase is when your eyes are changing all the time, usually not for the better, and unfortunately, there is not a lot of permanent treatment at this phase. No surgical treatment can help us during the active phase, for the measurements are always changing. We have to wait until the cold or inactive phase. There is one exception to that statement I made about surgery in the active phase, and that is in the next paragraph. We can try to help ourselves with the things that are driving us crazy (double vision, dry eyes, scratchy eyes, burning eyes, light sensitivity etc.) We can do this with eye drops, ointments, gels, sunglasses, warm compresses.
You are in the active phase.

Regarding your doctors, you have had very good referrals. Definitely continue going to the neuro-opthalmologist, for they do very important tests, to be sure your vision will not be permanently damaged by the pressure behind your eye on the optic nerve.

*Exception for surgery in the active phase- In all probability, the neuro/opthal referred you to the oculoplastic surgeon, just in case the tests show that your optic nerve is having too much pressure (called optic neuropathy) This is done by color tests and visual fields by the neuro/opthal/
IF this occurred, you would need surgery (OD or optic decompression) in the active phase, to save your vision and relieve that pressure. This is pretty rare, and only folks with severe TED (like myself) are in this situation. It was the neuro/opthal doc who diagnosed it, referred me to to the oculoplastic doc. And I did have that surgery in the active phase.
In answer to your question, do continue to see the neuro doc, and I imagine you will see the oculopastic surgeon on an irregular basis unless you need emergent surgery. (IN the inactive phase,you might be having more surgery from the oculoplastic surgeon.)

I do suggest you check around, and find a pediatric surgeon who “does” strabismus surgery. It is usually a doc who also “does” graves patients.
This is the life saving surgery for me, for it corrected my nightmarish double vision. BUT in the meantime, they check your double vision carefully, and they (and you) will be able to tell when you have moved into the cold phase.
**AND their measurements provide information that will help you by prescribing prisms as a temporary measure to help correct the double vision.
They help most people, they did not help me much. I am worried that I am exceeding the length of the posting, so will send this. shirley

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in reply to: Are my watery eyes due to Graves, or could I have an allergy? #1170359

There was a question about tape, for taping eyes. I use Mepitac, which is very, very expensive, but wonderful. Ordered it online.
However, I just had another idea that I will explore tomorrow. There used to be a pink tape that was used in beauty parlors to tape hair down, cause it did not hurt at all when removed. I am going to look into that tomorrow. What I found tonight is that it is called Scotch hair set tape. I’ll report again after I find it and use it.

I have had plugs in tear ducts in the past. They did not help me at all. The doctor charged $500/each to install, and it was not a complex or even sterile procedure. Later they disappeared, were not in the ducts anymore. They were in the lower ducts.

For Emmtee-I know you plan to see a doctor, but I am not aware that a headache is associated with any TED symptoms. Perhaps it is. But my daughter has migraine headaches, and they are only on one side of her head.
Could you have them, along with everything else? (i:

Shirley

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in reply to: Two Questions- Stress and Rituximab #1170334

Hi, I wanted to tell you that I tape my eyes, too. I am going to type just a few random thoughts, cause the past day and next few days are crazy for me.
I had double vision, too. Please don’t fear the surgery for double vision!! Look forward to it with great happiness. It was wonderful, easy, and I now have single vision. It is called strabismus surgery. Thyroid eye disease goes through an active phase, where eyes are changing, then an inactive phase, that is when you can have corrective surgery for the double vision

I am very light sensitive too. Sunglasses, plus a large visor really help. the glare of the sun, or even bright light, makes my eyes water. With this dumb disease, our tears re different, so they don’t cling to our eyes like they should.

There a really good tape that is expensive, call Mepitac, for eyelids. I ordered some. I hope someday, not to have retracted lids. Most people have very successful surgery for that. Mine has not been as successful as hoped, but I plan to have them fixed with future surgeries.

This is a personal thing but I wish I HAD taken Rituximab. You have done the right research on it, yes, it is still at the beginning, but if i had it to do over again, or could do it now (too late for me) I would. As I said, that is just me. I had methytrexate, which did not help at all. Also had Solu Medro IV
There is a doc at Casey Eye Clinic in Portland who has given it to some patients. As you said, the studies are very small at this point.

I just have to go to bed, but wanted to acknowledge your post, and I said I would write again. Probably won’t hear from me again until Saturday afternoon This is my birthday week, and getting crazier by the minute. Off to bed to tape my eyes!!!
shirley

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in reply to: dont know what else to think #1170373

Hi, I know you realize I suggested a neuro opthalmologist (not neuro ortho, which is bone stuff.
I am sorry for the loss of your dad. I suggest you consider that his illness and dementia were unrelated to a thyroid disorder. If you do believe they are related, I suggest you have this conversation with a well informed health professional with whom you have a relationship. Certainly losing a parent is very stressful.

Having Graves’ is not that uncommon. A lot of folks have it. It is like a lot of other stuff. When you have a runny nose, you blow your nose. when you break a bone, you have a cast and it gets better. When you have Graves’, you treat it, and take the steps to be well again. It is easy to be impatient about it, for when we are hyPER we are impatient about everything!

Graves’ is treatable, even if it a lifetime thing we have, and you have to take it step by step. You have the right idea to move forward, have a good endo **take your meds, be a good reporter to your doctor. As you have your
meds, you will feel better, and life will look much brighter to you.

I am glad you have a future appt. with the orginal endo. Start out again, get treated, be well and stick with this forum. It is reliable, not sensational, and lots of good folks are here to walk through each step with you. We are fellow patients, not doctors, but there is a place for both in our lives!
Shirley

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in reply to: dont know what else to think #1170370

I am not a doctor, not prescribing! BUT , historically quinine was used very successfully for muscle cramps. It is another of those meds, which was a malaria med, and the side effect of helping muscle cramps was noted.
However, this is discouraged in today’s world.
My solution? I buy tonic water (which has quinine in it) the same tonic that goes in a gin and tonic. It really helps me from occassional muscle cramps.

Re eyes? Try to get an appt with a neuro opthalmologist for a good baseline work up for your eyes. They are the best. I have found the best eye drops (for me) are Soothe by Bauche and Lomb. Kinda hard for your regular eye doc to help you with weird feeling in your left eye. But it is wise to have a baseline good eye exam, which is helpful in the future if you have further eye changes. MANY people with Graves’ have a few eye changes, then they go away.
Stay on your antithyroid drug. For sure. It is intended to move you from a hyperthyroid state to a euthyroid (normal) state with your thyroid hormone. Your doc will probably want labs pretty regularly during this time.

You are correct, Xanax is very easily addictive. Use it judiciously. I imagine when you are less hyper, all things about your world will seem calmer, and will be easier for you to take a look at what your options are. Graves’ i snot something we want, but it is something we have. it is manageable, treatable, and you will get there, too. You have probably lost 12 lbs, cause you are hyperthyroid. Stress is stress, and some people gain weight with stress, others lose it. But you have the underlying aspect of untreated (until very recently) graves’.

the labs that matter the most, are TSH T3 and T4, along with how you feel.
the antibodies generally do not determine treatment, they confirm that you have an autoimmune disease.

Might be helpful for you to read about Graves’, the active, or hot phase, then the inactive or cold phase.
Shirley

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in reply to: Two Questions- Stress and Rituximab #1170332

Quick note. I TOTALLY understand everything you said. If you read ANY of my posts, you will see my history of TED at the bottom, plus a lot I have written about it. I am too tired to write to night. I need to (yes, that’s me) tape my eyes so that I might get a little sleep. I wear sunglasses everywhere I go. I can talk about methotrexate, Rituxin, and all the rest of it….
Maybe I can get to the computer tomorrow afternoon. I will also send a PM (personal message to you)
Shirley

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in reply to: Confusing lab test results #1170349

Great replies! Isn’t this site wonderful? I hope you begin to get your life back. I am sure you will. So glad your GP is nice and sympathetic. Thanks, Bobbi, for the explanation about tears and further comments on labs. The tear explanation is very helpful for all of us with TED>
Also CC’s thoughts. Now you are armed with lots of things to think about.
If you have not gone to your appt. yet, I encourage to ask him/her to explain Hashimoto’s too.
This is a long struggle, but you will be better when you get the
“Sweet spot,” which describes the right mix of meds. i don’t think the block and replace method is used very much in the U.S.
Have the docs talked to you about treating you with ATDs, RAI or thyroidectomy in the future?
Shirley

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in reply to: Confusing lab test results #1170345

Your symptoms are very typical of being hypothyroid, that is for sure (I’m not diagnosing, just they are symptoms that we read when we learn about hypo and hyperthyroidism and Graves’.

In the recent past, one of the facilitators wrote a very nice synopsis of the thyroid labs, and what they mean, and their relationship to each other. I THINK it was Kimberly, but it might have been Bobbi or Ski. I will try to find if after I post this note.

Re antibody results, other than telling me that I do, indeed, have an autoimmune process going on, I don’t pay much attention to them.

It is the TSH T3 and T4 PLUS YOUR SYMPTOMS that determine changes in your medications. i took a quick look at one website that is long and involved, regarding the biochemistry of these labs, but copied one sentence only for you to look at and think about. You are correct in your thinking that T4 is elevated in Graves’ but Graves’ does not mean only hyPEthyroidism.
I think the question to ask you endocrinologist (yes, I suggest you get a second opinion, also) is if you are hyPOthyroid, despite the fact that your TSH is in the accepted range. Remember, the LOWER the TSH, the more hyPER you are, as a general rule.

“Clinically, T4 measurements have long been recognized as an aid in the assessment and diagnosis of thyroid status. Elevated T4 values are characteristically seen in patients with overt hyperthyroidism, while T4 levels are generally depressed in patients with overt hypothyroidism.”
Of course, they mean as an aid to TSH, T3 and your symptoms.

I do think I am getting over my head with this, for I an “just” another patient with Graves’. And I learn from my endo, who is wonderful (after going to three docs who were NOt, and would not listen to me or really care.

But from my own experience, I know exactly how you feel being hypo, just like I felt. In my case, the thyroid dose has been lowered, and had to be increased. And we went pretty much from how I felt, for the labs did not budge that much.

Glad you are being treated for your cardiac status.

I suggest you do make an appointment with a good eye doc who is familiar with thyroid eye disease (TED.) It certainly does affect eyelids. But my eyelids retracted, did not get droopy. If your eyelids are drooping, a good eye doc is a good person to have on your team.

I wish you very much good luck with this. From what you wrote, it seems that you are taking an antithyroid drug and a thyroid supplement at the same time? I would ask that question, too.
Welcome to the forum. I know you will hear from the facilitators, who can add to, and correct if needed, what I have written.
Shirley

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in reply to: Looking for some info and support please #1170336

Hi, so glad you found this board/forum. i am compelled to write a quick note to you now, and perhaps more later. I’m walking out the door in a few minutes.
To begin-if you have not done this, I suggest you begin to keep you OWN medical record file at home. You need to complete a medical release of information form, or whatever they call it where you are. This is a form you complete to request that your (I suggest) labs and the notes of any visit you had to the doctor be sent to your home address. The labs should have the ranges next to the lab results. You will be much more informed that way.

Do you have an opportunity to find an endocrinologist? If you need to get a referral, ask the doc who is most likely to make the referral. Do everything you can to find an endo who works with Graves patients.

Sometimes it is helpful to say where you live. And there are some references in recent posts by Kimberly telling you how you can find endos in your area.

I am just a fellow patient here, not giving advice, really, but it sure does seem to me that you have hypo symptoms, no matter WHAT the labs say.
It is not clear to me if the way you feel now, is the way you have felt from the very beginning of when you began the thyroid hormone. And this is one of the reasons you really would profit from seeing a good endocrinologist, armed with your history and your symptoms.

For eyes-because you have Graves’. I suggest you make an appointment with a neuro opthalmologist for a baseline work up of your eyes and their symptoms. In the meantime, eye drops, lubricant at night might help.
You can probably do your own experimenting with allergy medicine, take it faithfully, see if any of them help.

It seems you need a sympathetic, compassionate and knowledgeable doctor, to help you slug through this, and whatever the cause, help you feel better.
The skin on your shins is another sign that all your stuff is Graves’ related.
Having said all I’ve said, do you have any chance of seeing a good endo? It sure sounds like the doc you see is not helpful for you at all. You want to feel better.
Shirley

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in reply to: Eyes do not close-need all suggestions, especially for sleep #1170226

Thank you. I appreciated being checked in on! I have to do something.
Last night a miserable night followed by a miserable day. Haven’t gotten any aids I ordered yet. Eyes hurt a lot. Probably no trip to Mayo until later spring.
Shirley going to bed just cause eyes hurt, it is only 8pm

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in reply to: Eyes do not close-need all suggestions, especially for sleep #1170224

Thank you! This is a marvelous site. I feel I have new friends every day!
It is reassuring to me that you thought you would be like this the rest of your life, and with more help and consult and procedures, you are better than you were!
Do you mean Mayo in Minnesota? I guess there is one in Florida. Minnesota is more doable for me, for i go back to Iowa every year.
Shirley

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in reply to: Getting Through this.. #1170055

Theresa is echoing everything I already said about having your own medical records, and getting labs drawn before visits, but she said it better, and with more suggestions and detail. Nice post, Theresa. this is a song I sing all the time on this board.
Shirley

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in reply to: Getting Through this.. #1170054

I hate it a lot, too. It really helps to get regulated and feel more like our old selves. It is very difficult to feel patient, or fair, or nice at all, when we are hyper. Believe me, I was none of those!

I don’t know how reassuring this is to you, but it sounds like you are getting very good care and management from your endo. Really! You are right, it probably is asking too much to ask her to discuss the relationships of estrogen (the main ovary hormone) to thyroid hormone. But the basic issue remains the same. We need to get back to the way we were, which is euthyroid, or normal, neither hyper or hypo.

All premenstrual symptoms, and that whole ball of wax, is dependent on a lot of stuff, especially your age, as you know (i don’t recall if you did mention it) and how you have been all of your life.

My daughter is 46, and she wants to kill everyone (not really, of course) when she is premenstrual, and is much more emotional and cries more easily. This is off the subject of this board, but recently she tried primrose oil, and said (and her family said) she was much less labile and emotional. The whole family wants her to continue it !! She is 46. She sometimes thinks she is perimenopausal, and she may be at that age.
I guess if you really want to know your estrogen level, you can ask someone for that lab. But it seems that you have enuf lab learnin’ on your plate right now!!!! And it does sound like your providers “know their Graves” so that is good. i think their level of knowledge is pretty good. And, you can get a lot of support from this board on the bedside manner part of it. You can do your part at the visit, by having all your info, symptoms and questions ready.
My endo is nice, but I really don’t expect much more from him except to really know his stuff. I know how Graves’ goes, from reading and from my own experience. it was very reassuring to me to read that there were tons of other people out there who had these experiences, and all that the textbooks say, which reflects how we are.

Really, it does sound like you are getting better and better. It takes time! And we don’t feel patient.
Gotta make my bed so I can get in it! good night.
Shirley

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in reply to: TED and my wedding #1170175

I read the reference provided by Kimberly re selenium. There is not much evidenced based information that encourages the general population to take it or need it. And there are certainly some issues with taking too much

It is my thinking that selenium deficiency in this country is very very rare. I encourage you to discuss this with you doc, and of course, if you do decide to take, it, as gatorgirly says it is MICROGRAMS not milligrams.
I’m not much interested in taking it, and i don’t.
Shirley

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in reply to: Getting Through this.. #1170052

sorry, i had the same old cursor problem I sometimes have, so just send the last post.

You will get through this, you will get better. You will, you will! If the labs are too overwhelming, maybe try to learn about one of them at a time, and consider taking someone to the visit to take notes, and have your list of questions before you go. If you look at your older posts, you will be impressed at how much you have learned already! Go girl.
Shirley

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