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in reply to: I think it’s back :( #1064858
hi Lilly, Lillly! I had a couple more thoughts.
Synthroid and/or any ATD should be taken first thing in the morning, with a glass of water. Wait 1/2 hour before eating. This consistency will make the lab values more reliable. The half life, and the way the drug is absorbed, really makes a difference. It should be on the bottle to do that. If you absolutely cannot do that, must have coffee with 1/2 1/2 (which I love) try to be consistent with whatever regimen you choose, but the suggestion above, empty stomach, glass of water, first thinkg int he morning is the most reliabel thing to do.
And, when you see the endo, ask for a referral to an ophthamologist who is familiar with Graves’ and TED. Also ask him/her to dictate a report to the one you you end up going to-have your records sent there.Re weight. I found that the hyper energy that I kinda loved, as well as hated, is not the energy we want. After my thyroidectomy, I gained the weight I lost being hyper, which was a ridiculous amount, and definitely was muscle wasting, then ended up about right, maybe 5 lbs over. Hard to evaluate, cause I got pregnant, and I gained 40 lbs c each kid.
My weight is fine, now, but like Kimberly, I learned that keeping a log is a very humbling experience, and kept me honest, but surprised, at the extra stuff I ate. One bad habit I had, was to finish what the kids did not eat if I liked it……….
Shirley
Kimberly, thanks for your empathy @ the dumb flight.in reply to: I think it’s back :( #1064856OH YES! I TOTALLY AGREE. USE SYNTHROID, IT HAS BEEN ROUND FOR YEARS, HAS MANY DOCUMENTED STUDIES BEHIND IT, AND THE DOSE IS CONSISTENT BY THE MANUFACTURER. MANY MANY EVIDENCE BASED STUDIES DOCUMENTING THIS.
I missed my flight, the only flight to Sun Valley today. Had to pay $100 change fee for tomorrow. There was a breakdown of our "new" but not entirely without problems, light rail to the airport. Then security was a double nightmare, even @ 1100, then I watched them close the flight and give away my seat. I guess 20 years from not it won’t make any difference……..
My eyes are watering, as usual, but it is not from crying, it is from good ole’ TED!!!!!!in reply to: I think it’s back :( #1064854Hi, I have to run also, bus, train, plane. Just wanted to ask if you re going to an endo, and if your dose has been changing during 12 weeks, it could be a problem. The TSH and T4 labs should be drawn AT least 2 months apart, three is better, otherwise they are not a good reliable indicator to change doses. Sorry, maybe I will have time to write tt the gate if Seatac still has free wifi
in reply to: Overwhelmed #1064926Meant to mention that Bobbi has written some great and reassuring posts about GD and TED, along c Kimberly and Ski.
in reply to: Overwhelmed #1064925Hi Mish, yes, it sounds familiar! ALl of it. I have all of what you have, terrible sensitivity to light, cant find sunglasses dark enough, am tempted to use an umbrella, cause the sun shining toward my eyes, cause a blind spot, so am contantly shadling my eyes with my hands. Ask for samples of eye drops when you are. After much trial and error, I have found that Soothe XP is my eye drop of choice, but I also use the big sack of samples for the eye doc. I found going to the eye doc very reassuring. Why?
Because I wanted my vision checked a lot, with no problems that were missed with my eyes. It is painful for me to look up, and straight ahead. Especially up. My eyes tear a lot for the first few hours every morning, less so during the day, but I am always with a kleenex to dab them. Basically it is not fun. There is an end in sight, they stop getting worse.
I use gel ad lubricant at night. I have explored every option of getting larger sizes of either gel or lubricant, but not possible. I don’t think ordering online saves anything at all.
Ask you eye doc to refer you to a neuro-ophthamologist, too. I suggest you also look at the posts about TED on this website.
I have a lot of them, and there are some great ones from Kimberly and Ski about TED. But first things first. It does sound like you have TED (thyroid eye disease) but you will know more after your doctor appointment.Just a comment about your first visit to the endo. I did not think from your post that you were unhappy with him. It sounds like you are at the very beginning of this GD, maybe tEd, and that he took some time to tell you this, and put you on some appropriate meds. Regarding getting appts with endo, ALWAYS make the next appt, perhaps the following one, too while you are in the office. Have your calendar with you. I suspect, as you take these meds, you will begin to feel more normal.
I had (and most of have had) every symptom you have described. The irritability, the extreme intolerance to heat, the whole dar thing. and I never wanted to go to bed, I was too hyper. Be sure to record your pulse, it is one sign that your motor (you) is revving to fast, that is why you are taking the PTU But it takes a little while, cause you still have too much thyroid circulating on your body.
This looking ahead, and we all want to do it, but at the end of the day, you probably will have a thyroidectomy, which I had, and many on this board have choses, or RAI radioactive iodine, which others on this board have chosen. But this is not a decision you are even close to making at this time. I am so glad you have found REASON for how you feel. It is real, it is legitimate, and the dumb disease takes a while. But you will get better.
Maybe your husband might appreciating reading my post, or others on this site. Also, an air flight controller, a man, has recently written. Maybe it would be helpful for your husband to read his posts. This vision thing is really tough, and to have it when you are hyper as well is even tougher. Welcome to the club none of us want to belong to. But there IS an end.
I have not been hyper-feeling for decades. And I finally see some reason to hope for a better resolution to my eye problems.
I understand.
Shirley.in reply to: Looking for Doctor Recommendation in NYC #1065004DUH! I tried it, worked perfectly for AACE site. I guess I missed the prompts the first time. I did try it for my area, plus my home town in Iowa. I recognized most of the names in Seattle, but interestingly, not any of the names who have been recommended for thyroid dysfunction, including my endo, who is wonderful. Most ofthem did list thyroid dysfunction as one of their specialties, though. I recognized some of them as primarily docs who do almost all diabetes in their practice.
I think it is a good tool, though, when you are new in an area. Better, at least, to be learning more about endocrinologists and their practice specialties by asking others, or asking the office.
Thanks, Kimberly.
Shirleyin reply to: Looking for Doctor Recommendation in NYC #1065002Kimberly, I tried that website, just to try it, and could not get to names of docs, specialties and/or locations. The site seem s to be limited to MD’s as far as I could determine. Would you give it a try? It seems like such a useful resource for people~ Shirley
No simple answer to your question. I hope that you will have a visit/discussion with the doc who ordered the labs. If you do look it up, you find that it can mean something..or nothing. It is age related, symptom related, and lots of other stuff.
Complex question. Pretty much same answer to your next question. The facilitators will do a better job answering, but basically, the TSH is suppressed, could be that for several reasons. Depends on your symptoms, if feeling hyper. The lab ranges vary a little bit through out this country and internationally, but generally, TSH range is 0,4-5, or very similar to that. ARe you seeing and endo? Do you have another appt? Maybe if you write some more about yourself, perhaps a bit of history? I did not check before I answered this to see when you joined, but I can assure you this is the best place to get ssupport for thyroid issues. I am just another person with TED and thyroid issues, not a professional by any means. But if you are joining our "club," I suggest you find an endocrinologist familiar with thyroid issues. That doc might suggest a rheumatologist. I sure am sorry you have the labs without any knowledge to go along with it. It will be a long weekend, but hope by the beginning of the week you can talk with the doc who ordered them, for there probably were some good reasons, based on what you told him about how you were/are feeling! I am sure you will hear from others, just wanted you to have a reply, even if not full of answers!
Shirleyin reply to: TED & Pain in head #1064951Hi Sue, I have rare headaches, probably less than one a year, and not severe. i have not heard of or read about, this symptom being associated with TED. Bobbi’s comments seem right on, and from my layperson point of view, my ownn experience, and what I have read, the two things are not related. TMJ does cause that, or you may have a headache whivch might respond beautifully to one of the meds designed for cluster or migraines.
Best wishes with the additonal problem, hope it does not occur often, and you find a resolulution to it~
Shirleyin reply to: New to this Site-Have Graves TED #1064960Hi, I am also retired, have been dealing with TED approaching 1.5 years. It is a very difficult disease to have.
From my knowledge, although the TSI is an indication that we have TED, it is not one of the variables that is used to determine when we are finally in the cold phase. That decision is made by measurements by eye docs over time, usually a neuro opth doc to be sure your optic nerves are ok, and measuring your visual fields, etc. and another opth, in my case, I was referred to one who ultimately would do strabismus surgery, and I had careful measurements there, prisms did not help me with my double vision. To have those measurements stable, both by what we notice, and by their objective findings, that is when we are "ready" for eye muscle (surgery) to help correct the double vision. In my case (and oh my we all are sure different as we march down this miserable road of TED) my TSI (done at my request cause the docs don’t rely on it at all in making progressive decisions about treatments) is much higher a year and one half later (400) but I seem to be stable, my vision is the same old double when I look up and ahead, eyes water constantly, have to blot my eyes all the time, I use tons of eye drops, and there are no sunglasses which are dark enough for me. SO NOT FUN.
But i wll be having eye muscle surgery pretty soon, probably eyelid surgery after that, and I will continue to post what is going on with me.Hi Blessings!
THANK YOU so much for your response! So glad Kimberly changed the title of my post. I feel really good about being "ready" for the eye muscle surgery. I was very apprehensive about having it too soon, but have begun to believe that I probably am in the cold, fibrosed-as-much-as-possible stage. The measurements have been consistent for about six months now.
I am very interested in the Medipac tape. Did you have to order it online, or could you find it in a large drug store? The prices were over $50 online, and I suspect that is much more than I need. Fromtwo your post, it sounded like you had an OD in the active phase to protect your optic nerve? So did I. But as a result of that surgery, I had a side effect of being unable to close my left eye, mostly a problem when I sleep. So that is why I have been looking for every help possible in taping it.
Two more questions for you. Were/are you very sensitive to light? Did it improve at all after any of your surgeries?
Did you have lot of tearing, watering of your eyes? Has that improved at all? Both are big problem for me. I am almost ready to resort to an umbrella, for the visors and floppy hats are not enough.
Thanks again, Shirleyin reply to: Medical Marijuana #1064969Well, here are some more thoughts! To be clear, and I know you realize this already, but IOP, glaucoma, is a separate entity that TED. There are several kinds of glaucoma, and I suggest you confer with an eye doc who specializes in glaucoma.
In larger communities, there are glaucoma clinics. It should be pretty easy to find a good glaucoma eye doc.For the rest of your question, I refer you to the site below. There is a lot of stuff on the net @ glaucoma and marijuana, but I think this is the most reliable. I hope you hear from others about this. I do know the glaucoma drops are very effective, and there are numerous evidenced based studies to support this. Anecdotal experiences are not always worth relying on, cause other variables have not been controlled. Not to mention the dose. Anyway, here it is, for your consideration.
Just a small comment about the eye muscle surgery. If all of the world were below me, on the floor and the ground, my vision would not be a problem. That is cause the muscles that allow me to look down, read, etc., have not been affected by TED.
In my case, the muscles most severely fibrosed (much larger, aren’t elastic anymore) are the inferior muscles.
so the eye muscle surgery for me, will be to move the inferior muscle, to allow me to look directly at someone, and look up at least 40 degrees more than I can at this time. So for me, most of the muscle moving will be on the inferior (bottom of the eye) muscles. I am excited to have this surgery, and will be sure to post all post op progress.
Another person might have the superior muscles affected, which limits the ability to read, look down at the ground, etc. etc.
So the surgery is based on the muscles which have been damaged by the antibodies. This can include the muscles that allow us to look to each side of our head. I have instinctively learned to turn my head to see sideways, but for a while, I did not realize that my visual field was not full. Not too handy when looking both ways for cars, so people need to be very aware of that.in reply to: methizamole? #1064972As Bobbi says, remaining in a hyperthyroid state is really tough on our bodies, and dangerous.
The two anti thyroid drugs, Tapazole, (methimazole) and propythiouracel (PTU) are used as they are described-ANTI-thyroid drugs, ie, to decrease the amount of thyroxin which is being produced. Too much thyroxin causes hyperthyroidism. The drugs decrease the ongoing large amount of thyroxin, which is what causes a hyper (too much) thyroid state.
Surgery or RAI cannot be considered until the hyperthyroid state is decreased. When taking either drug, labs, including liver function, should be done, especially in the first six months. This complication is very rare, but it exists. This rare incidence occurs with both drugs, but should not be a reason to not take them. As a matter of fact, there is a new black box warning for PTU, just issued in May by the FDA.** It says that in rare instances, liver damage can occur. This is not new information, and it is a rare occurence. The big message here, is for the doc to do labs, including the liver function labs, when you begin the drug, and while you are on it.You definitely should be seeing an endocrinologist who deals with thyroid disease. You are NOT too young for thyroid surgery (I was 24 when I had mine) But the first order of your health is to be in the hyperthyroid state as short a time as possible, and that is accomplished by taking the antithyroid drugs.
This is a great site, and I am sure you will hear more from the facilitators, and they can also amend or correct what I have said if needed. Sure glad you found this site, and I wish you the best of luck getting a second opinion. Be sure to find an endocrinologist, when you call, tell them you have your labs, that you are hyperthyroid, that you would like the first available appt.
**http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm209023.htmHi, of course you are concerned @ your job and your vision. I went the same road you did, being told I needed numerous paitd of glasses, when the real problem was TED.
To talk only about vision for a minute. I suggest that you find a good neuro-ophthamologist, get a baseline exam. All through this TED experience, I continue to go to him. They do visual fields, plus carefully checking your optic nerves.
I have been anxious waiting UNTIl I can have strabismus surgery, or eye muscle surgery. I have had my eyes measured all along by another eye doc who does strabismus surgery. But we can’t have that until our eyes are as damaged as they are going to get. All people I know who have had the surgery, have had significant improvement, if not outright resolution, of the double vision. Because our eye muscles are fibrosed (thicker, do not expand and contract as they are meant to do when we look different directions) by the antibodies attacking them they will not get better on their own. What the strabismus surgeon does, is to move the insertion and origin of they eye muscles so that we can regain normal, or almost normal vision, and get rid of the diplopia. My best gaze is downward. I cannot look straight ahead, or up without double vision and discomfort. So the main move will be on the muscles at the bottom of my eyes, although the oblique (looking up sideways and down sideways) are a little bit affected. I am counting the days and the minutes until I can have this surgery!
I had had to wait until my eyes are no longer changing (as determined by many appointments over the last 1.5 years.)
So-for TED, you need a eye doc who is a neuro-ophth doc, and that doc would be able to recommend you to a pediatric ophthamologist (the only folks who do strabismus surgery, you don’t want anyone else.) After both appointments, plus your history (of how you see your eyes changing a lot, or not so much anymore,) you would be ready for strabismus surgery.
I will be happy to tell you of my experience, for I hope to have this done as soon as possible. The past two years have been total hell with TED. I understand about job, for I finally did resign because I could not read all the moniters at work. I am much older than you, so retirement was an option, but I sure hated to quit work.
I am encouraging you to re-consider the eye muscle surgery, for that probably is your ticket to improved vision.
When I first went to the eye doc who diagnosed the TED by looking at me, plus having an orbital CT (have you had one? that will tell which muscles, and how much, they are affected.) he held up two fingers and five fingers. He said that this whole process would take as much as two years, and I could have as much as five surgeries. Because I DID have optic nerve damage, I had an OD orbital decompression, which is done to relieve pressure on the optic nerve, and also for cosmetic reasons and medical ones, when eyes are really bulging out. I am ready for more than one strabismus surgery if necessary, for they do the best they can with the measurements to place the muscles to help the most. Sometimes it requires a repeat. I am fine with that. After that, with all the adjusting, eyelid surgery helps our poor retracted eyelids, which is also a part of TED for some people.Re having and endocrinologist for Graves, it definitely should BE an endocrinologist, who follows you carefully, with labs TSH and T4, plus being in touch with your symptoms. Are you ok now with your thyroid? Feel neither hypo or hyper? It is the endo who should be following all this, not the eye guy.
Re CSO, it is true that this condition happens, mostly in males, right in your age range, and that it can resolve.
I imagine the retinal specialist did the appropriate tests to give you that diagnosis. I rarely recommend Wikipedia, but it does have a nice summary of CSO, you may know all of that already. But is true that the CSO symptoms can confound the picture of TED.
I think I have written enough. My heart goes out to you, and am so glad you are back with us. I don’t know what I would do without this board. Having said that, as you said, you have big things to think about because of your job.
To my knowledge, surgery is the treatment for strabismus, double vision, not radiation, and would want to learn much more about that subject. Strabismus surgery is done all the time on little kids. It is a relatively simple surgery for the right surgeon, and I am happily counting the days and minutes until I can get it done! I have waited two years to get to this point!! -
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