[snelsen]

in reply to: Questions about Ted #1063683

Hi Elf!
What a good, realistic email! Your description of the course of TED stating that we need to "wait it out" is the way it really is. Otherewise, there is nothing that really can be done to cure it, fix it, etc. Except to protect our eyes, use eye drops and lubricant . Plus, being followed by a neuro opthamologist is critical in my opinion. If this had not happened, I would be blind in one eye because of damage and compression of the optic nerve .
Thank you for listing the course of your Graves’ experience at the bottom of your post. I have seen that before, and really like it. How do you do that?

Some questions for you now.
Did you have strabismus surgery? Did you have double vision that really altered your psychological and social world? I have had one emergent OD, because of optic neuropathy during the hot phase. I’m at the end of year two now. Just had strabismus surgery on both eyes a couple weeks ago. It has helped the diplopia a lot. My inferior muscles were affected, so looking straight ahead and/or up was so stressful b/c of the double vision.
Eyelid surgery, which you just had. What was the recovery like? Did you have upper and lower lids done? Has it helped at all with light sensitivity? Or was that a problem for you? Did you talk to several surgeons before you chose the eyelid surgeon?
Did they propose essentially the same procedures, or was there a lot of difference in their ideas about what to do?
Did you have any skin grafts to your eyelids?
Thanks, elf.
Shirley

[snelsen]

in reply to: Long time coming #1063666

Oda, that is great! Happy for you. Check back now and then….
Shirley

[snelsen]

in reply to: Questions about Ted #1063680

You already have antibodies attacking your eyes, so that is a given.

To date, the research is in its’ infancy with any intervention of any kind affecting or changing the course of TED. It is true that oral and IV prednisone are sometimes used. They are very big time anti-inflammatory drugs. I am sure you know that these steroids come with their own set of problems. I did have a course of prednisone, it helped my vision and double vision for about 2 weeks. Someone will have tie me down and knock me out to have prednisone again. Only to save my life, that is IT!

A world famous inflammory eye disease MD at the Caset Eye Institute in Portland, OR has a very snall study with a very small sample of patients, trying to alter and/or improve the course and severity of TED.

I guess I am trying to get to the point of your question relating to your naturopath’s suggestion. You might want to summarize for her what Ski said in her last post, ie, that we already have the antibodies. Other than that, have the naturopath know what your eye docs are doing, and vise versa. From what I know from allopathic and naturopathic combined classes (Univ of Washinton and Bastyr) the upper limit of Vitamin C is 2000 IU, but of course your naturopath can guide you on that. I iearned that there are side effects of higher doses, think they are listed on the mayo website, but nothing super serious like mega doses of Vitamin A.

Talk through with your doc what Ski said. There is quite a bit of logic that may suggest that boosting immune system could increase the # of antibodies attacking your eyes….

[snelsen]

in reply to: Questions about Ted #1063676

Paula, and kaylasi, too.
Ski just sent a WONDERFUL post about TED. I am only sending this on, because I currently have TED, and have described some of my experiences. Ski’s post is so good, I suggest skimming through mine, and bookmarking and saving hers, cause you will probably want to refer to it again and again!! ” title=”Smile” /> shirley
I have written reams and reams of posts on this site about TED. Go to the search engine, put in TED, and/or my name, snelsen.
In all most posts, I tell people who have TED that they should be followed by a neuro opthamologist through the entire course of TED. As you know, they check visual fields, very important to do over the course of TED. Why? Because if the eye muscles enlarge, become more fibrosed (bigger, stiffer) and you accumulate some orbital fat, the space these things take up make it more crowded in the orbit, and there may be pressure on the optic nerve (optic neuropathy) That is a dangerous situation which can compromise your vision permanently. They will also check spatial vision and test the color red. If you notice any changes in your vision or color recognition, that is the time to call to come in to be seen by the neuro-eye doc.

With TED, the comment by the endo to watch it, is not really that unreasonable. TED is not their thing. With TED, you begin a frequent and long relationship with eye docs, ones familiar with TED.
Why don’t you read some of the extensive comments on this subject, putting TED in the search engine also.

Bobbi and Ski have also written more information in this thread which is very helpful.

Re labs, meds, etc. etc. None of it make a bit of difference in the treatment, or really in the diagnosis. When you have TED, you have it. Not everyone has it as severely as I am having it. I am probably an extreme exception, since I had a lot of double vision, and I had to have an emergent orbital decompression because of pressure on my optic nerve. The other doc that followed me through the entire course, was a pediatric eye doc, for IF you have diplopia, or double vision, they are the ones who operate on the eye muscles and move them to help or even eliminate the double vision. I am in my second week out from that surgery, called strabismus surgery.
I hate TED, this site is wonderful for support.
Shirley

[snelsen]

in reply to: Questions about Ted #1063671

I have TED, finishing 2nd year, couple surgeries, lots of double vision, light sensitivity, super dry eyes but they tear all the time.
Hate it a lot. If you have TED, get established with a neuro opthamologist, who should follow you all the way through. His big interest are visual fields, any blind spots, changes in seeing colors, and they check red first. All very important.
I also went to a pediatric eye doc, these are the ones who do the eye muscle surgery, much later on, after the damage has been done, if you have double vision thqt rules your life.
Just my thought, but i suspect that your TED is not from overmedication of T3. Basically, you are making thyroid antibodies that are attacking your eye muscles. That is what they like to do.
YOu will find lots of posts and lots of support on this board.
Shirley

[snelsen]

in reply to: Is this true? #1063762

There is no evidence based research on this subject at this time.

I imagine the stresses of job, relationships. finances, family, illness, small children, occur to the entire population.
When someone with Graves’ experiences one of these stressors, then "gets" Graves’ for the first time, or has a recurrence,
he/she may feel that there is a causative factor, or relationship between the two events. There is nothing wrong with thinking that as a personal opinion based on your own experience. But without blinded studies, and legitimate research to support it,
this remains the personal experience of individuals, which cannot be generalized to the Graves’ population as a whole.

The same facts apply to diet and food. Aside from kelp and seaweed, there is no evidenced based research to radically change and/or eliminate foods from your diet BECAUSE a person has Graves’.

Of course, avoiding stress when possible, identifying the causes and decreasing them if possible, is good for any person.
Same with eating a healthy and well balanced diet. However, there is no solid research to say that either subject will alter the course of Graves’.

Since these posts are to be based on our own experience, I am here to tell you that I have had Graves’ for many decades,
have had ALL the stressors listed above, I eat anything I want (except kelp and seaweed, which I had never thought about one way or the other.) In my little study of one person, myself, I did not experience any relationship of anything to anything.
One caveat, though. After I had the initial onset of Graves’, it was EXTREMELY stressful! At the onset of TED, several decades later, I had no stressors. But I sure found TEd stressful.
Shirley

[snelsen]

in reply to: Post-RAI Gastroparesis, Anyone? #1073557

Mary Fran, I just wrote a very extensive email telling you of my similar experience, but apparently it timed out when I did not realize it, for it said I was still logged in. I will try to write again tomorrow, for I am too tired to do it again tonight.
Read my post of 9/3, it summarizes a lot of my experience with hypo and gastroparesis.
Shirley

[snelsen]

in reply to: Can GD ever go away? #1063726

Krystal, there are so many really good, recent posts from people who have had both in the past few months.
Use the search engine, type in RAI, surgery, and see what you get.
It is my understanding that the goal of both RAI and thyroidectomy is to have no thyroid circulating (as opposed to leaving a little bit of the gland to continue producing thyroxin. My experience is not typical for today, for when I had my surgery, they did try to leave a little gland left to produce thyroxin. As a result of this, I did not need any Synthroid for 30 years or so, nor did I feel hypothyroid. I felt fine. At some point, my labs changed, and at the same time, I was a little more cold than usual, and more tired than usual. Ever since then, I have been on Synthroid, followed with labs every now and then, and how I feel.

It is my understanding that we always have Graves’, but we certainly are not always hyperthyroid, the goal of everything is to get normal again. Being hypothyroid is no picnic, and I had a recent experience to testify to that! I agreed to reduce my Synthroid, for my TSH has remained suppressed for a long time, even though I felt fine. When it was reduced several steps, I felt terrible, and did not want to get out of bed, was so cold, all the signs of hypo. So we increased it, despite what the labs say.

I am looking forward to your getting a lot more emails, plus reading the prior replies.
Welcome to the board, it is great
Shirley

[snelsen]

in reply to: EYE MUSCLE (STRABISMUS) surgery-Day 2 #1063918

Hi Hoochie, will do. Need to give him a call. Am not home until Saturday noc. using computer of other person right now.
Will follow up soon, will send a PM c info
Shirley

[snelsen]

in reply to: MORE INFO ON TED #1063798

THAT is a BIG question! I have been asking it for the past 1/2 year, for I did not want the eye muscle surgery done when my eyes were still changing.
Here is my experience. It is worth it to have occasional appointments with a surgeon who will ultimately do strabismus, or eye muscle surgery, if needed. The technician does all the stuff, I made a special effort to have the same person each time. A lot of these measurements can vary from person to person, of who is doing the measurements.
So that is one arm of TED. PLUS if I thought my eyes were changing.

How did I know? I guess I knew they were still changing when I got up one morning, and the double vision was super bad, and at another part of the day, it was either worse or better. I knew when my neck, scalp and shoulder muscles were almost in spasm, because I was tipping my head back until I did not have double vision. Since my inferior muscles were affected, I could always look down, always read and use computer, but looking straight ahead and up made my eyes ache, and it is socially difficult to have a conversation with someone who has four eyes two noses and mouths, so I tilted my head back until I had one image of a person (or a car, or a street sign, you get the picture…)

The neuro-op doc does completely different measurements, ordering visual fields, not by wiggling fingers in four directions, but using a fairly sophisticated and accurate visual field machine. That tells an accurate picture (plus if you say that you think you have a blind spot, or cannot see the color red clearly) of your visual fields, which in turn moniters if you have so much swelling in the orbit that there might be too much pressure on the optic nerve.

I went cRAZY wanting to KNOW definitely, that I was out of the active, or inflammatory stage, for to me it represented moving toward the end of damage to my eyes, and having surgery so they could be improved–meaning moving muscles so I had a chance of looking forward. That is the surgery I had last week.
Ask more questions which i probably have not answered. Generally, "they" say about a year. I did reach a point where the double vision was stressful, and it did not seem to be getting worse, and I decided I must be ready for the surgery. The docs thought I probably was, but "there’s no way to really tell." they say!

Back from my post op appt just now. He asked me if I could look forward more comfortably (I can) and the measurements and I found that I could look up a little bit higher with less discomfort than before the surgery. Said that final result will be @ 4-5 weeks after the surgery, I am at week 2. That he can repeat surgery, move the inferior muscles some more.
I have the operative report, if you will send your postal address in a PM, I am happy to send it to you if you re interested.
Shirley

[snelsen]

in reply to: Has anyone else developed a shellfish allergy? #1063851

Nice post, Laurel. I read that study. Are you in Seattle? (I am ” title=”Smile” />
Shirley

[snelsen]

in reply to: Wow! Feeling good for 4.9 years #1063770

Laurel! What a welcome and wonderful post! There are people who are just beginning this "journey???" and right now it will be o good for them to read your news!
Shirley (year 2 of TEd, beginning to come to the end of it, not that it really ends!But better)

[snelsen]

in reply to: Newly Diagnosed with Graves in need of some HELP! #1063788

Hi Krystal, great advice from everyone! I have one suggestion to go along with the other great advice and support.
On your first visit, ask for a medical release of information form, check that you want all test results, labs, and visits, sent to your home, either by mail/fax whatever works for you. This is a new world for you, and like any new class, notes are nice, and it is very wise to begin a medical file for your own reference.
Shirley

[snelsen]

in reply to: MORE INFO ON TED #1063795

hi Susan, I have written a lot on my experience with TED, so maybe if you put my name and TED in the search engine’ box, they will pop up.
Short review. Graves’ MANY decades ago, had thyroidectomy at the very beginning, needed no replacement for years, then began Synthroid, got along fine always for many years. This year, a doc wanted to reduce dose according to labs, and even though labs said hyper, I wasn’t, and even though they continued to say hyper, I became hypo, felt crappy, cold and wanted to be in bed all the time, so we upped my Synthroid to 100mcg a month ago, so all is will in the Graves’ world.

BUT approximately two years ago, I noticed that vision was different, this was followed by three eye exams and three new expensive glasses prescriptions which did not help at all. I finally realized that the changes were several-my eyes watered all the time, but they were also dry, they seemed more noticeable in my head, the sun bothered me A LOT, and most of all, I found that when I looked up, I had double vision. This progressed to same double vision when I looked straight ahead.
WEnt to different eye doc, when I walked in the door, he said, "You have TED, sent me downstairs for an orbital CT, which documented this fact. The eye muscles, especially the inferior (lower) ones were very swollen, big, and this meant that they were fibrosed. This all happening cause I was making antibodies attacking the muscles of my eyes. All of this was bothering me a lot, and the double vision made it harder and harder to work (I was a nurse in a recovery room, and the moniters were way above my head, so when I looked at the moniter, I saw a mishmash of numbers on top of each other.
I stopped working, for this reason. The first eye doc held up two fingers on one hand, five on the other. He said, "Depending on the severity of TED, it will probably last as long as two years, and you may have as many as five surgeries. This takes a long time. There is an active, or hot phase, when the eyes are being damaged and constantly changing, then there is a cold phase, when they get stable with whatever degree of symptoms you are having. He said I should be followed by a neuro-opthmalogist, which is correct, and a pediatric eye doc, too, for ultimately, they are the people who do eye muscle surgery if needed. I just had eye muscle surgery last week-to move the muscles of my eye so I could look straight ahead without seeing double. NOT EVERYONE has this many problems, some do not have double vision at all. It all depends on which eye muscles are attacked, and how much. Some people get very big eyes that stare, and some have surgery to correct that, make more room for the eyes to be back in the head, sometimes for the health of the eye, sometimes for appearance reasons, sometimes because it is necessary to take pressure off the optic nerve (which is caused by all the swelling of the muscles)
It is called an orbital decompression. I had that surgery to relieve pressure on the optic nerve.
I am waiting right now to see the results of the surgery last week, cause there is still some inflammation and swelling, but i know now that there is much improvement.
As I said, I got TED years and years and years after I was hyper. It is not that common to get. It is entirely possible that you will have a "mild" case of TED, without all the issues I had, but it is important to be monitered all the way through this by docs who are familiar with TED.
Well, hope this is not too much information, but you are hearing my experience with TED. I have my post eye appt tomorrow.
Be sure to keep writing, and look at some other posts.
Shirley

[snelsen]

in reply to: Has anyone else developed a shellfish allergy? #1063849

Again I refer anyone interested to read the following reference from the Mayo Clinic.
In other words, there is no relationship to a shellfish and iodine, but anyone who eats shellfish and has the symptoms
Michabelle had, should definitely be very careful not to eat shellfish.
http://www.mayoclinic.com/health/shellf … prevention
Take what you will from the article.
Shirley

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