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in reply to: In a rush? #1169577

I am simply saying what I think, and my own experience. Yes, I think that is pretty radical. I would not want to do it. When I had Synthroid tapered either up or down, it was by very small increments, with a solid two months between labs. I had significant changes in labs, plus how I felt, from 125mcg to 112.
Shirley

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in reply to: TED and my wedding #1170165

Hi Ange,
My initial thoughts are that it seems that photographs are looming as the most important issue here. And I understand that you may want pics of the others in the wedding, and that can evolve on the day of the wedding. But, for starters, when you get your wedding dress, or whatever you plan to wear when you get married, do go ahead, get some early photos. I say this because this is important to you (and/or your fiance.)
You don’t really have any guarantee for anything about your life in two or three years, and I do encourage you two to get married as you have planned to do. It really will be ok.

There is no way to predict how your TED will evolve. I am sure you will get some responses from people who had scratchy eyes, and they bulged a little bit, but that is all. You may hear from others (I am one of them) who have a pretty darn severe experience with TEd.

It is easy for someone else not involved with this situation to minimize it, and I don’t mean to do that at all. But I sure do hope that you both decide to proceeed with your wedding, feeling really good and happy about it. It really is not possible to predict much of anything in this area, and I hope it will begin to recede in its’ significance. And your idea to take them a few years from not is a possibility, also.

I am so sorry you (and all of us who have TED) that there are no finite answers. But there really aren’t.
i hope you receive a lot of encouraging answers, and happily move ahead with those invitations!
Shirley

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in reply to: Back to square one… #1170134

Maybe he actually wants to set up good and clear communication???? Maybe.
Glad you like him. It is hard, as a patient, when doctors make referrals, we rarely know the back story, if they are best friends, or they owe someone a referral as a favor, or if they genuinely do know which surgeon is the best choice based on the proposed surgical procedure in question.

When you go today, be sure to sign a Medical Release of Information form, requesting that all labs and visits be sent to you for your home medical file.
This release of information is needed, because you are requesting your own personal information, and offices legally cant release it without your permission. On some occasions, someone will print out the labs, no big deal, if there is a reliable relationship between patient and provider. But best way to make this happen is what I have suggested.
I encourage all patients to do this with all doctors.
I look forward to hearing from you after this appointment.
Shirley

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in reply to: orbital decompression #1169706

Eye muscle (strabismus) surgeries=100% great.
My eyelid surgeries, well, there is a small difference meaning improvement, in how far down they come, ie, little less retracted. But I cannot completely close my upper left eyelid. Big problem. drifts open at night, I have to lube, drop and tape it shut.
My lower eyelid surgeries? After much research re success rates, I chose palatal grafts. One eye is great. I don’t see much improvement in the other eye, and I think the surgeon made a mistake. took too much tissue (down to the bone_) and it is not healing well. Work in progress.

I am entering three years out from TEd. Light sensitivity, tearing of both eyes, and dry eyes, plus nighttime drifting open of one eye for sure, plus maybe the other one. I feel very compromised by this disease. Having said that, I spoke with three people who had marvelous outcomes from palatal graft to lower lids.
Most chose it instead of artificial material, because of rejection rate, plus the eyelids tended to fall back down after a year or two.
Shirley

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in reply to: Uptake scan numbers? #1170137

As you already know, techs are a poor source of information, except, perhaps their job description and what they do on their job. Do you have a follow up appointment with someone who ordered the test? Probably best to discuss with that person. Do write again.shirley

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in reply to: Back to square one… #1170128

I would like to echo portions of what others have already written in their posts.
My thoughts:
-I cant agree with a comment that he is a surgeon and he must have good reasons for what he said, and was thinking of your particular situation. I am more inclined to think he does not like to do, want to do, or is not confident doing, this procedure. Probably a gift to you that he does not want to do it.
-he is a surgeon, and therefore has very little reliable knowledge about RAI, and has no right to explain an entirely different procedure to you that he does not do, and does not represent.
-he may not do very many thyroidectomies, or does not like to do them.
-I see nothing in what he said that showed any interest in you.
-I question his knowledge about thyroidectomies for Graves’, for part of the pre op preparation is to take potassium iodide (usually) 7 days before the surgery.
It is given to people who are hyper, but proceeding with surgery, to reduce thyroid hormone production and reduce the vascularity of the thyroid gland.
Frequently, if the person is already hypothyroid, the need to do this decreases.

I am happy to provide a reference for the above if you are interested.

I encourage you to check with your endo about surgeons who are known to be familiar with Graves’, and who do at least 50 procedures a year (learned that at last year’s conference, but it makes good sense.)
(I cant get the cursor where I want it to go, and part of the screen is covering up my post!!!)
I wanted a thyroidectomy for exactly the same reasons you do, and it
perfectly. I wish you luck in your explorations!
Shirley

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in reply to: Seeking Volunteers to Test our new Bulletin Board! #1169789

Guess imissed this post!

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in reply to: Early peri-menopause and Graves Disease #1170073

hi, it is probably a very good idea to have a thyroid panel done, too. TSH T3 T4. sometimes our thyroid dose needs to e adjusted up or down. So I would do that the very first thing if you have not had labs recently. It is good that you are following up with your doc, but try to get these labs done first so you have more to talk about. You mY find that your thyroid hormone status may be related to other symptoms, but as you said, that is the puzzle you can begin to figure out with your doctor, I am guessing you are in Great Britain? I would begin with the thyroid information , then proceed to specialists if you need to do that with your gyn symptoms. as you know, 35 is early for peri menopause, And all this female hormonal stuff can be related to thyroid status, usually hypo.
do write back when you have more info.
shirley
sure hope you get some relief and information soon.

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in reply to: looking for answers #1170102

Hi
Rebecca,
so glad you have finally received good care, had your surgery. You have accomplished a lot since you first wrote. With all your experiences, you are already helping other people on this forum, and that is wonderful!
do keep writing. everything about Graves’ is slower than we want it to be. remember that you might be a bit more tired than usual after your surgery.
hirley

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in reply to: Just diagnosed with TED… SCARED #1170084

Hi abde1, of COURSE you are worriednand and scared! all of this Graves’ stuff is a complete unknown until we experience it.
Then, a few of us are confronted with TED. Bobbi did a great post of describing the course of TED. If you put either the word TEd or my name, Shirley, you will see many posts of my experience with TED. You will also see the procedures I have had at the end of my post. It helps so so much to speak with others who have experienced and lived with TED.

I’d like to add a couple suggestions regarding having good care.
1. It is wise and reassuring to establish care with a neuro opthalmologist. This doctor will follow you, do a thorough baseline exam. usually these doc are very nice, and take a little time to answer your questions. they check your vision with a teat called visual fields, to be sure that the pressure on your optic nerve is ok. On rare occasions, there is too much pressure on the optic nerve, and a surgery needs to be done to relieve that pressure. this happened to me, but it is a fairly rare occurrence.
2. I was also seeing an eye doc who measured my double vision every 2 months or so.
It os very useful to have these measurements as we slug through TED, for it helps establish when we are ready foe any surgical procedures of they are needed.

I hate to overload you with too much information right now, but do write with more questions.
I had, and still have, very dry eyes, and am very sensitive to light. I use a lot of eye drops and lots of lubricant. I wear sun glasses all the time.
we do get through this, and if you end up with double. Vision, the surgery for that is great.
shirley

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in reply to: thyroxine absorbtion #1169671

Hi I interpret that to mean supplements. Not food. There is no way I will wait to eat bfsk or omit dairy. I have not done anything different. So I guess consistency is the wisest thing to do regarding lAbs. I will be interested of other responses

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in reply to: What to ask surgeon re thyroidectomy? #1169947

DARN! I just wrote a long response, it is lost. Hate it when that happens. In summary, I am happy for you, and I know your post op course will go well. You may be a bit more tired than usual. I think you have learned so much. I suggest you keep copies of your labs, and get copies of your visits. It is nice to have your own personal file. Remember, for a while there will be a bit of thyroid hormone running around after your surgery. It won’t take long for it to be gone. YOu are now keeping in touch with your body, and finally you have found good docs who are addressing all your physical needs. You are now on the road to feeling better than you have for years. But it is a road, and everything endocrine takes TIME! and Hashi is another factor.
I suggest you learn the range norms for your lab, they are usually written on the lab slip, but then again, you re in Jolly Old, and I am not sure if NHS is in the electronic world for patient access yet. It certainly is spotty in this country, and most offices are not set up electronically for patient access yet.
Have a good sleep.
So glad you are moving forward with this!
Shirley

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in reply to: orbital decompression #1169702

Just a quick note back to you. This is a great place for good information and for support. Of course, now I understand your situation. I have very severe tED also. It has been a rough two years from hell. No other way to describe it.
I had one OD, and if you look it up, I think I chronicled most days of the post op course. There are some really helpful thoughts that you might appreciate reading. One of the biggest overall thoughts i want to tell you now, is that the post op can be fairly easy, comfortable and ok. Two of the biggest things to do to make that happen, are elevate your head of bed, and use cold compresses a lot. i think I elaborate on that in my posts. I am super tired, even though I think I am three hours earlier than you are (I live in Seattle0 so will sign off for now. My OD was very successful, saved my vision, and eye back in my head. You can see at the bottom of my post all the procedures I have had done in the past two years or so. I am still post op from the last one
good night, Shirley

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in reply to: orbital decompression #1169700

I think he spoke at our conference last year. You are at a wonderful place, which has cutting edge well known docs in TED.
Regarding your eyelids–do you mean that they are SWOLLEN? OR RETRACTED? THe eyelid surgery I am familiar with is surgery to lower the upper eyelids (to cover more of the cornea like normal eyes) and lower eyelid procedures, which are more challenging, involving either a graft from the hard palate to the lower lids, or an artificial graft. But in any case, any eyelid intervention or surgery should be done AFTER your OD. For your eyes will not protrude as much, and the measurements for eyelid surgery will be completely different that the ones taken pre OD
shirley

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in reply to: Orbit Radiation or decompression #1169694

Hi, well, I suggest you ask the doc to amplify the information you have about RAI for your eye issue. It is very serious to have optic neuropathy, and the goal is to reduce the pressure on the optic nerve as soon as possible, for permanent blindness can occur if this is not relieved. I think of this as an emergent, right now or pretty darn soon intervention.

I had the same experience, and had an OD for this reason. But I am scratching my head, and puzzled that radiation is even a choice for you. My understanding is that radiation takes a while to have the desired effect, and my thinking is that it is not possible to determine the amount of time it would take with radiation; and what I learned from my own experience, is that you need to have an intervention in a near timely manner, an the sooner there is more room in the space to accomodate your eye, the swollen fibrosed muscles of your eye, the better, to relieve the pressure on your optic nerve pronto, with and OD.

What were you told about radiation as an option?
shirley

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