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in reply to: Just Been Diagnosed #1169410
Hi, welcome to this site. It is great. I am so happy that you do have a diagnosis, for it is the first step toward your path to health, and wanting to resume your normal life. It is really terrible for a person to remain hyperthyroid and untreated, so your diagnosis is a gift. So, yes, you will be able to do all the activities you used to do, and yes, you will feel like you again, and not crazy and moody. But it takes a while.
I don’t have a lot of time right now, but wanted you to have a fast response to your post. In a brief summary, your will probably be taking an ATD (anti thyroid drug) and maybe a beta blocker if you have a fast heart rate. Then you will probably feel much, much better. Next, you almost always have a treatment of continuing on ATD’s, having RAI (irradiating your thyroid) or surgery, to remove most or all of your thyroid. In the first instance, you have labs, see how you feel, and continue on ATD’s. There IS a possibility of becoming hyper again, then you do need to consider the other two choices or have the ATD dose adjusted. With RAI and surgery, you end up taking thyroid, the amount depends on how you are feeling, and the labs. That is a BRIEF overview. For much more detail, put some of these words in the search box. And, look on the front webpage of this site for the article discussing the guidelines for treating and managing hyperthyroidism. I think, too, you will get a LOT of reassurance, affirmation and support by putting the words "hyper, hyperthyroidism" and related words in the search engine of this bulletin board. Sometimes there is a compelling reason to have the surgery only, but is rare, and usually co-existing with other conditions. Almost always, it is a personal choice. All of us on this board have chosen one of these options for varying reasons.
Regardless of your choice of managing you thyroid, this condition will always stay with us. And, referring to the rest of your life, you will go back to being you again, with all the activities you have been doing, and you will not feel like a crazy person. Do read the article,
**It is best to be followed by an endocrinologist who is familiar with Graves’. It is a long time relationship. It is possible, once you get to a steady state, primary care docs can follow you, but best for an endo at the beginning of this journey non of us want to take.
You have some eye symptoms, so it is my thought that you should have an initial baseline appointment with a neuro-opthalmologist. You might just have small symptoms as you have stated, but sometimes TED (thyroid eye disease) can get pretty severe.
All for now,
ShirleyHi Barb, you are most welcome. I know how much it meant to me to hear from to others about all my surgeries. And I have two more coming up, as I mentioned.
Well, if you can get on the schedule, get it done in the early part of September, you might be able to take your vacation if it doesn’t involve lots of strenuous exercise. Be sure to ask all these questions. I did drag my feet about having this surgery, cause it was December. Of course, I did not want to do it, and it took a few days for me to believe that Ireally needed this surgery.
Get your questions ready. Ask them them about the degree of urgency to do the procedure. Ask them about your vacation. Ask them about flying if you will fly after the surgery, as I recall there was a waiting period. Keep writing, I am happy to cheer you along with this. I dreaded it and i was scared. All the fears were unfounded, especially when I really believed I had a serious problem.
ShirleyHi Barb,
If you put:
my name, orbital decompression,pre-op and post-op in the search engine you can read a lot about orbital decompression. As I recall, I wrote day by day for a while.
To briefly answer your last question, yes, if the pressure is not relieved on the optic nerve, permanent blindness is the result. You do not need to be scared about driving, working or driving-IF you have the surgical intervention. If you don’t, there is valid reason to be concerned about all of the above.
I am thinking they might put you on steroids to relieve the pressure (and it will) temporarily, to prevent permanent damage to the optic nerve, and that is a good thing. That was also my experience.
I had the same symptoms you did. YOu really don’t have a choice of doing anything else.
Briefly (and there are so many good references on this site about this, too, plus your docs.) I understand how much it means to hear from someone who’s "been there.
Here are my suggestions, and I might be forgetting some of them, so check the search engine.
Purpose of OD-to make more room in the orblt, relieving pressure on the optic nerve. Also many people have it done to make more room for the eye, when it is really bulging out. They do this by trimming the "walls" of the orbit. Orbit is the "hole," or the cavity that contains the eyball, muscles and nerves of the eye.
Preop-set up your bed so you can be in at least a 45 degrees head up, more is better. Try to sleep that way for several days. It greatly reduces any swelling and bruising. I put pillows and blankets UNDER the mattress, so the entire head of the bed was elevated.
The surgery-it did not hurt at all. I think some people were more uncomfortable than I was, but probably because they did not continue to sleep with their head elevated. It is uncomfortable when there is a lot of swelling.
Day of surgery- It really is a relatively short procedure, about 60-90 minutes. You will probably have a general. You won’t remember a thing. I was hungry after the surgery, and stopped for a hamburger on the way back to the house (a little bit of a dumb thing to do, only because I probably should have gone straight home, gone to bed with a cold pack on my eye. I emailed this site, so you can look for that post.*******cold packs are wonderful. Put about six washclothes in a ziplock bag with ice. You dont want a lot of pressure. or ice itself on your eye, but the cold washclothes feel marvelous.
Day 1-I walked around the house, walked around the block, spent the rest of the day in a chair or in bed. Had some bruising.
Ate anything I wanted.
Day 2 forward-just kept getting better and better. I could tell by then how much I WASN’T seeing. The leaves on the trees were more distinct.If you work, I think it is a good idea to take 2 weeks off, minimum. The eye should not have extreme pressure, try to sneeze with your mouth open if you need to. The more you have your head up and use cold packs, the less swelling you will have.
The less you do of those two things, the more swelling (and discomfort and bruising) you will have.Before the surgery, I had a HUGE loss of peripheral vision that I was not even aware of, until the visual fields tests showed it.
I was seeing colors more muted, but was not very aware of that, either. However, my eye was getting more and more uncomfortable and a little painful. After the surgery my visual fields were full, colors were bright and i could see the leaves on the trees very distinctly.
Hope this is a little bit helpful to you. They are right to stress the seriousness of this. You’ll need to move ahead and plan the surgery in a reasonable period of time, say 3 weeks or so.
I did have someone with me for 5 days. Was wonderful, having the washclothes ready, good food, and you really need to be careful about bending over and putting pressure on your face.
Shirleyin reply to: Update from lilsispatrick #1062244Hello, thanks for writing. Sorry you have not had any responses, but you are getting one now! (:
I am writing to your comment about no treatment for double vision. Not sure how much you explored this, but there is a marvelous surgery for double vision. It is called strabismus surgery. Usually an eye surgeon does it. Frequently, they have a large pediatric population, for this is a common procedure for little kids and babies when needed. I had this done on both eyes. I had terrible, life changing, debilitating double vision-which is now GONE! The surgery and recovery time is easy, and I strongly suggest you explore it.
I am so sorry you have had such a difficult time.
Shirleyin reply to: TED people come in please…… #1061321No, I have not. BUt just give a call to the office and him and leave a message with your concern. Is it something that came up suddenly? If so, you should let him know. Maybe someone else can give you a more objective thought on your eyes.
Could it have always been that way> ANyway, do call about it.
Shirleyin reply to: Post partum graves? #1169453Hi, sorry I missed your post.
I had Graves’ after baby. But Graves’ is Graves’. I do not think because it is or isn’t post partum Graves’ it makes any difference at all. it is probably wishful thinking on your part to think that it will get better or resolve. But maybe refreshing this post will prompt more responses.
Do you have Graves’ symptoms to go with your suppressed TSH? I am assuming you know them all. Usually, when we have too much thyroid racing around, it is a pretty miserable experience, and can be very dangerous, depending on your heart rate and BP.
As you said, you can’t have a scan while breast feeding. I am quite sure that many people who get a dx of Graves’ do not have scans. If we have all the symptoms, tremors, fast heart rate, being hot all the time, increased appetite, and feeling like a crazy person, plus the labs, you should probably be treated. Again, I don’t recall your other post as I am writing this one, but seems to me you can definitely take one of the anti thyroid drugs while nursing. I sure did.
I ended up having surgery, while I was still breast feeding. All went fine.
ShirleySorry I missed your post. My doc always orders TSH T3 and T4. Maybe you can ask him why he does /does not?
Generally, when all is going well, you and the labs are in good shape, I think it is probable that it is not necessary. But if either you and or labs are out of whack then these labs give more useful information.
shirleyin reply to: Grave’s Part II. Will it never end???? #1169442Welcome, you can write and write as much as you need. Welcome to this wonderful board with great facilitators and
participants. I am walking out the door, but wanted to briefly acknowledge your post.
My first thought, which I am sure will be echoed with references very soon. RAI and eye symptoms do not go well together.
The new treatment guidelines do address this, basically that if we are having TED, or eye changes, RAI is not a good treatment choice, except with special guidance, and usually steroids given before RAI. Kimberly recently referred to the new guidelines, and I am not sure they are on the main webpage of this site yet.
Are you going to an endocrinologist who is familiar with Graves’? I suggest you begin to see a neuro-ophthalmologist for a good eye evaluation, then be followed by them. Who is taking care of your eyes?
I have to go, but you will get some good responses.
ShirleyHi Marian,
My understanding of what you have said, with normal range of TSH, T3, T4, and none of the usual Graves’ symptoms (I really don’t know about that part) would be that there is no reason for you to have the diagnosis of euthryoid Graves. It certainly does seem like you have TED. Perhaps I missed some information in a prior email.
The antibody tests confirm that something autoimmune relating to antibodies is happening, but they are not really diagnostic for hyperthyroidisism, nor are they a basis for any treatment.
In summary, if you (I, or anyone) has TED, that is what we have, and the pathway for this is what you have read already. Good management and careful observation if you have TED, with surgical procedures available when we are sure we are in the cold or inactive phase. Or, if we have Graves hyperthyoidism, treating it with ADT’s, beta blockers if needed, then follow up the rest of our lives, with the treatment we choose, of continuing with ADT’s. surgery or RAI, labs and thyroid replacement.
I think if we refer to some of the references Kimberly has provided, plus what I have learned, it is clear that many endocrinologists do not routinely order antibody tests. If they are high, (and your insurance pays for them, for many companies won’t) it confirms what we already know. That we have TED and/or Graves’, that we have an autoimmune disease. I look forward to clarification and corrections as needed to what I have written.
ShirleyThe previous response from Kimberly is "right on." I don’t a lot of time at this moment, but briefly, here are some comments from my knowledge and experience.
1. The IV steroids "work," and your symptoms will decrease, but it is temporary fix. Usually used to decrease the swelling in the orbit, and the potential or actual pressure on the optic nerve.
2. As other posts by the facilitators and some TED people including myself, it is hard to identify when we are in the "cold" or inactive phase of TED. It is based on length of time, our own subjective comments about our eyes (saying that "they have not changed much for a while," as opposed to "they seem to change every week.) And the objective measurements of our eyes buy the doctors you need. In my case, I was followed by one eye doc to measure diplopia (double vision), take some measures to help it, which is usually prisms, although they were not a magic fix for me.) And, a neuro-opthamologist, who does different measurements, primarily visual fields by a machine (not the wiggly finger kind) and other measurements for color identification.Ideally, all surgery should not happen in the active phase, or should be done in the cold or inactive phase. That is because they cannot rely on measurements to do corrective and helpful procedures, if they are changing all the time.
The one reason to do any procedure in the active phase is if there is pressure on the optic nerve.My active phase was about a year and 1/2. I did have to have an OD in the active phase for the reason stated above.
Double vision was hellish for me. I had strabismus (eye muscle) surgery, which was absolutely marvelous for me. Then I had upper eyelid surgery to lower them. That was ok, but I have a continuing issue of not being able to completely close my upper lid. My personal thought is that it is a complication of the OD. NOW, my next three procedures are another attempt to lower one eyelid so that it will not drift open at night, and palatal grafts to my lower lids. I have way too much corneal exposure.
I don’t think most people have the degree of severity of TED that I have had . I hope not. My TED appeared almost 50 years after I had a Graves diagnosis. At that time, I had a thyroidectomy, which I chose, and was very pleased with.I may not have covered all your concerns and questions by talking about my experience. Have to go now, look forward to more posts. This is an amazing and wonderful site for Graves’ TED.
ShirleyJust a comment about eye muscles. What happens, is that the process of antibodies attacking the eye muscles, is that they become fibrosed (thicker, not able to expand and contract as they should.) Thus, vision is compromised by varying degrees of double vision, depending on which muscles are affected, and how much resulting in double vision (diplopia.) They lose their elasticity, and at the same time, become larger, creating pressure around the eye, a mild result being bulging of the eye. Or a more serious factor is when there is simply not enough room in the orbit for all that was intended to function there because of the swelling, then there can be pressure on the optic nerve (called optic neuropathy.) If this pressure is not relieved, it can result in blindness. That is why, if someone really has TED, it is a good idea to have a neuro/eye doc involved, to continue to check your visual fields. Diplopia can be monitered by a different doc, an eye surgeon who does strabismus surgery (way down the road in the inactive phase, if this is needed. In the meantime, they can prescribe prisms, which sometimes helps with the diplopia.
A similar thing happens in pulmonary fibrosis, where the lungs cannot expand and contract as they should.
Your question about eye exercises is an interesting one. My experience is that the fibrosed muscles are not able to expand and contract to degrees, so that in general, I don’ t see how eye exercises would help. Interesting subject.
ShirleyHi, i have been dealing with TED for a little over two years now. I have not been very active on the board lately, cause I have been in the Midwest (Iowa) and also getting second opinions at Mayo Clinic and the Univ. of Iowa about the next two proposed surgeries. Unfortunately, all agree that palatal grafts to the lower lids must be done, because of the large amout of corneal exposure I have from retracted lower and upper lids. The corneas are at high, high risk for corneal abrasions, and as long as this situation exists, even if I needed a corneal transplant, the same problem would re-appear because it never left. I dread these surgeries.
My comments regarding your eye symptoms follow:
-if you use many eye drops, try to use some without preservative. Over six times a day.
-if you continue to have eye symptoms, the endocrinologist is not the doctor to take care of your eyes.
You need to explore and find a good neuro/ophthamologist to follow you, if you really have TED.
– this is a different auto immune process entirely than Graves’. It is my opinion that supplements will not impact positively or improve the course of TED at all. However, I have heard that people tried to take flax seed oil, to provide more lubrication in the eyes, but it made no difference at all in my experience. You are already taking cod liver oil, so that might be enough oil every day?Bobbi gave a very accurate description of TED. As she stated, there is one compelling reason to have surgical interevention at any time during TED, and that is if your optic nerve is being compressed.
In my experience, I have had the worst of everything TED. The strabismus (eye muscle) surgery made my life worth living again, after crippling diplopia. But that is way ahead of the game of where you are.Take it easy, do notice your eye symptoms. I suggest you do realize that if you do have TED, this is not for the endocrinologist to manage. It is completely out of their field, other than to suggest eye drops for dry eyes.
Ihope all your eye symptoms are mild or disappear.
Shirleyin reply to: Remission vs. Cured #1061232I agree. Unfortunately, I don’t believe there is a cure for Graves’. Otherwise, we’d ALL be on that train! Seriously, there is treatment. I sure hope you get in remission and stay that way. Good to have labs over time, always, though. In the non Grave’s population, the thyroid hormone needs change over time, and the body audits that, and keeps up with the need.
Then there’s us! We nave to regulate and evaluate our thyroid needs by now our body feel, and the labs.
Shirleyin reply to: Hi everyone I am new here #1061253Hi Suzanne, I am not sure how common it is, but it seems common to me now! I have Graves’ when I was 21-22 years old, and got TED (which I had never HEARD OF!) when I was 74 years old. And I got (and still have ) TED with a lot of eye issues. I have had five eye surgeries in the past year(counting each eye as a separate surgery.)
Hope you never get TED.
shirleyin reply to: Surgery-Post Op recovery times/return to sports #1061256Agree!
And I meant to mention to you and your daughter that I am so so grateful for you both that you ended up with good people following your care! AND that it did not take the next four years for a doc to THINK of Graves’. It is still way too frequent that this happens. When it does, it wrecks havoc on people, their families. Good for you!
Shirley -
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