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in reply to: Living with both Graves and Hashi. #1063643

That’s interesting! The relationship makes sense. I reluctantly agreed with the endo to try to reduce my Synthroid last year, for my TSH was always below 1, other labs indicated hyper-and it put me into an extreme hypo state last summer, with no change at all in thyroid labs. Hypo is its’ own hell, just as hyper is, I discovered. And I did not even have the benefit of less double vision! Of course the goal for all of is to be neither hypo/hyper/ and have no double vision. For me, the life changing event for less double vision was the strabismus surgery last September. With Graves’ am TED, I have learned to settle for "better than before when it was so bad."
Shirley

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in reply to: TED and high eye pressure #1062921

Hi Susan, now that you have a diagnosis of glaucoma, the treatment your eye doctor is prescribing makes perfect sense.
YOu can check with him again, but GLAUCOMA incidence is unrelated to TED.
However, transient, or short term IOP (increased intraocular pressure,) can be related to TED, and that is why they check for it.
So, glaucoma IS increased pressure in your eyes, but it does not follow that having increased pressure in your eyes means you have glaucoma. So it sounds like your eye doc is telling you that it is a coincidence, and that you do have glaucoma.
There is a familial tendency in families. People who have glaucoma generally take eye drops to keep the pressure down, and that is a long term thing. Again, it sounds like you learned a lot last Friday about what you have. Ask your eye doc to explain the two differences the next time you see him, or call him. It is important that the pressure is relieved, and the eye drops will help do that.
Shirley

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in reply to: Living with both Graves and Hashi. #1063640

To echo Bobbi’s comment. I do think your situation is worth talking with your endo, or perhaps, getting a second opinion. It is always good to have a fresh view. It is not like there is one answer to most medical issues. And this is very complex and making your life hellish. In the past, I have known two people with Graves’/Hashi/TED. Both had your experience with trying to regulate Synthroid. In both cases they elected to have total thyroidectomies, and the outcome was so much better for them because of decreased complexity of trying to regulate Synthroid dose. I have lost track of both of them, for they were casual acquaintances. But I remember they said it was life-changing in a very good way.

I do think, however, that your Synthroid dose and TED are unrelated. TED has a natural course that it goes through, varying in severity and length. I am not sure how much you have read about it. But the main thing with TED is that it is an autoimmune disease that makes antibodies that directly affect the eye muscles and eyes. Double vision is a result of the degree of fibrosis of the eye muscles, making them unable to expand and contract when we look different directions. As you probably know, it goes through a course of active phase, while eyes are constantly changing, and then finally, the inactive, or cold phase. At that time, depending on how your eyes and vision are impacted, the usual progression of treatment is OD (orbital decompression,)strabismus surgery (eye muscle surgery to change the position of the muscles, to decease double vision as much as possible,) and eyelid surgery, to attempt to get your eyelids back to the way they were before TED. I’ve had the first two, moving toward eyelid repair in a week. Not sure where you are with TED, but wish you the best.

It is very discouraging, and very hard for you to have all three situations!
Shirley

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in reply to: If you had RAI #1062897

That is FOR SURE! As Ski says, "EVERYTHING thyroid takes more time that we’d like!" I will refer to your post again and again, Ski, for I get very impatient with all of this!
Shirley

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in reply to: Not understanding some symptoms #1062907

Hi ewenme,
I thought about trigger finger also. (My last job in a hand surgery center.) But because she mentioned "fingers" and only at night, I dismissed it. Maybe it is a good idea for her to see a hand surgeon if this persists. Good thought.
Shirley

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in reply to: Want to have baby #1063012

to dbitz and smj78

A couple thoughts to debitz @ the beginning of this post re hypo and getting pregnant. I am not sure if this should begin a new thread. A facilitator can move it if it needs to be moved. Take a look at RAI posts, or RAI and pregnancy posts. Check about the time after RAI that you should not try to conceive. I believe it is closer to 6 months. Somewhere on this site, there is a discussion questioning being slightly hypo and getting pregnant. I don’t know anything about that. There may be some EVIDENCE BASED studies out there, there may not be. Every now and then, I hear that someone drank butterscotch shakes to get pregnant, and it worked! So sometimes these things are very coincidental and anectotal. But from my personal experience with being hypo, is that I would not wish EITHER being hypo or hyper for anyone. And from a healthy you perspective, I think this assumption should be discussed with your endo AND OB doc, combined with labs and how you feel.
Seems more reasonable for you to be "normal" with your thyroid when getting pregnant, ie, controlled withe right dose of Synthroid, which reverts you back to a normal thyroid endocrine state that you have been all your life, and before GRaves’.

To smj78. In one of your posts, you mentioned optometrist, which is why the following comments encouraged you to go to an opththamologist. So I think there was a difference in terms, so that is not an issue anymore. In another post, I believe your endo told you:

"I’m worried about the eye issues too, but I did have the endo say that who’s to tell I would not get worsening of the eye issues anyway. I’ll feel better after hearing what the opthamologist says. My issues are puffiness at the moment. No vision issues and they don’t appear larger to me. "

Prior posts address conversations of TED and RAI, so they are good references. And when you see your eye doc you can discuss the incidence of TED with that doc.

Realizing your major interest is a treatment choice for Graves’, and getting pregnant, I just wanted to share my own experience with TED, and suggest that your endo might be mistaken in telling you that you will not get worsening of eye issues. I am not sure any doc can guarantee that.

Some of us have mild TED, and some of us have full blown TED. From my own experience, and from the literature and posters on this board, I do think that the answer is slightly different than There is small percentage of people who have Grave’s who do get TED, The degree of eye involvement is all over the map, with many of us having very slight symptoms that do resolve. But it is possible to develop TED [b:1lcgpvpi]YEARS[/b:1lcgpvpi] later. In my case, it was decades later,and I have the other extreme of TED, with all the symptoms, doctor visits and surgeries.

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in reply to: Not understanding some symptoms #1062903

Have you been on the ATD (anti thyroid drug) and beta blocker for a month, since diagnosis? Are your Graves’ symptoms improving? Is your heart rate down? Maybe call the endo, ask if you can play around with the dose of beta blocker, see if the finger spasms decrease or go away, see if your heart rate stays down. When you begin either of these drugs, they are frequently tinkered with to get the right dose. Of course the most important thing are how you feel, the labs and the Graves’ symptoms decreasing.

A long time ago, quinine was given for leg cramps. It cannot be prescribed for that now. BUT, buy some quinine water, tonic water, drink a glass of that toward evening, see if it helps your finger spasms. Worth a try! I have suggested this to others who used to depend on quinine for leg cramps, and it worked. An easy safe thing to try.

Welcome to the boards. You will like this site a lot.
There are plenty of folks who have had RAI, some very recent posts about it. You might find them helpful to read, since you are planning to have RAI.
Shirley

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in reply to: Seven months into Graves #1062913

Just a quick note right now. WElcome! YOu will love this site. I suggest you use the wonderful search engine, browsing other posts, and simply reading all the posts that interest you on the current topics.
Tell us where you are now with Grave’s’, how do you feel, what symptoms do you have, are you seeing an endo. are you on ATD (anti thyroid drugs) have you decided which treatment you will have, ATD’s. RAI or surgery? All of this is addressed here, and you can read the experiences of others. Did they find you had Graves’ by labs when you were in the hospital? Do you, or they, associate Graves’ with the acute episode of vomiting and nausea? Did you hallucinate from drugs? Mental confusion can also occur when your electrolytes are way out of balance, as I am sure they were from your excessive vomiting until you got buffed up with IV fluids.

Have you read about Graves’? Do you understand it better now? Do you think you have had it a long time, undiagnosed?
See, you have lots more to write about!!! Again, tell more about your situation now.
Welcome again,
Shirley

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in reply to: TED and high eye pressure #1062918

Susan, I am feeling a lot better and less concerned, knowing your doc has been doing these exams. I was super worried @ your optic nerve, if none of these baselines or tests had been done. He sounds like a good eye doc. When you see him on Friday, ask him to write down his diagnosis of the cause of the increased eye pressure if it is not TED. The laser concept is something I do not know anything about. In any event, I would ask a lot of questions about laser treatment and TED, if they are compatible.
I hope that you IOP is WAY down on Friday and this can be a non-problem. Ask him what he is considering when he has made his diagnosis. And do ask him to look at your optic nerves in his exam, tell you all that he can.
Incidentally I think we discussed this before, but do sign a medical release of information form, have all dictated note,s labs and test results, including copies of your visual fields, sent to your home. It is your right to have your own records, and immensely helpful to look at them at home. It is terribly hard to absorb verbal information in a short visit.

Sure do look forward to hearing from you after your visit on Friday!
Shirley

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in reply to: TED and high eye pressure #1062916

I want to be very clear that because of the color red being less distinct, the decreased visual fields by machine testing, and other testing in the neuro-op docs office, I had prednisone (oral) to reduce the swelling, was check a couple times a week (meaning optic nerve was checked.( I then had an emergent orbital decompression, to save my vision. It made more room in the orbit, relieved the pressure on the optic nerve,and saved my decreasing vision. If pressure on the optic nerve increases, and remains for too long, vision is lost forever. Again, this is MY situation, but certainly an experience for you to be aware of.
Shirley

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in reply to: TED and high eye pressure #1062915

Susan, read my note first, then, in direct answer to your question if increased eye pressure related to TED, yes, it can be due to crowding in the orbit, (Glaucoma is associated with increased eye pressure, but not related to TED at all.) IF the eye drops your doc gave you were prednisone eye drops, they were given to reduce swelling in your eye, that is good. I do hope that you have more opportunity to explore anything having to do with laser treatment ,a nd get a second opinion on that subject. At this moment, that worries me, without you having a good explanation, and perhaps a second opinion. Second opinions are good things.

Susan, sorry I did not get back to you sooner. My server was down. A lot of what I have to say is dependent on what you mean when you say "eyesight not very good." see the questions below at end of email.
Here is my experience,and here are my thoughts. Of course it is good that you are going to an eye doctor. But would you consider asking for a referral to a NEURO-OPHTHAMOLOGIST? Please do this. I would love to have you see this doc as soon as possible. Maybe even the same day. During my TED experience, I was seen by a neuro-op doc very frequently. He has sophisticated machines and other aids to check vision in more precise methods than a regular eye doc. ANd it is critical to do so. As we progress with TED, it gets crowded in the orbit (opening in the skull) where your eye is. With TED, the muscles fibrose, enlarge, and increased orbital fat develops, and it gets CROWDED! This creates pressure, that can make our eyes bulge out, but ALSO press on the optic nerve. This is very serious, for if the pressure is not relieved on the optic nerve, it is possible to lose sight permanently. This was my experience, and I had to have (and was happy to have) an OD orbital decomression to relieve the pressure on my optic nerve, which is called orbital neuropathy.

I want to emphasize that this is an entirely different subject than glaucoma, which does have increased IOP (intra-ocular pressure) and the treatment is vastly different. (I tried to make the last sentence in BOLD and it does not work.)
Remember that I am just someone who has had TED. NOt a medical profession in TED.
So all I say is from my very own recent experience with TED. Plus a fair degree of knowledge which I have learned along the way. I WAS followed carefully by a neuro-eye doc.

Testing was complex and technical. Visual fields were always tested by a machine, not a wiggly finger. There were tests I took to identify colors, especially. My visual fields showed that I had decreased vision which was getting worse (in other words, not full vision, I had "blind spots at the top of my vision and to the extreme left. WAs I aware of this? Not really. Another sign that there is compression of the optic nerve is if the color red is less sharp. Also, if you look at tree branches and leaves, and they are less distinct, that is concerning.

If you would like to take this post with you to your doc for your next appointment, I think that might be a good idea. At least, for a reference for you, if not to show to him. If my concern is unwarranted, all the better!
Shirley

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in reply to: Upstate SC// Advice? #1062937

Hi Ruth, welcome to this great site. I am sorry that you have (probably)had undiagnosed Graves’ for such a long time! Unfortunately, this can happen, especially with women, all the symptoms are blamed on general anxiety. It is sad, when a simple lab of thyroid studies would spot the problem right away. BUT now you are diagnosed, and soon to see an endociniologist. THAT IS VERY GOOD!

As Bobbi said, you symptoms are familiar. I might add that they are CLASSIC for Graves’.
I think it will help you a lot to use the search engine to read about the experiences of people who have had surgery.
I don’t The first step is for you to see the endocrinologist. I imagine, when you do, you will be put on an ATD (anti-thyroid drug) and IF your heart rate is fast, you may be put on a drug to slow the rate. It is from a class of drugs called beta blockers. That is the typical first step. He/she may or may not give you an overview of the whole process in the first visit.
I am going to give you some beginning thoughts to the questions you asked and topics you mentioned.
As Bobbi said, you can use this board to find out if there are any support groups in your area. And-this support discussion board has been my lifeline all thought my Graves’ and TED (thyroid eye disease, which in a few people, their eyes are affected and need some treatment.) It is a rare complication of Graves’.

There are three options for ongoing treatment. Surgery is one. THe other two choices are RAI (radioactive iodine) or ratiation to the thyroid. And some of us have chosen to continue on ADT’s. This option of ADT’s has worked very well for some people.
Regarding thyroid nodules. They are quite common in a lot of people. You can ask about that, but your immediate problem is getting you to feel better, get your Graves’ treatment plan started.
After RAI or surgery, you (and almost all of us who chose one of these options) will take thyroid hormone the rest of our lives. The goal of that is to get the amount of thyroid hormone circulating in our bodies which is normal for a body who has not had Graves’. This is determined by how you feel, and by lab tests.

As Bobbi said, and if you look at past posts on this board, weight gain/loss can happen with Graves’. There several excellent posts on this website on discussions about weight. Surgery will not make you gain weight. After surgery or RAI (the goal in either case is to stop the gland from producing thyroid hormone)
you will have labs tests to determine the amount of Synthroid you will take. You are watched carefully, for the goal is to have you avoid "going hypo" after the surgery or RAI. With ADT’s, there is a slightly different path, for you have labs and report how you feel so that the ATD can be regulated to keep you in that "sweet spot," neither hypo or hyper. And that is the goal of all three treatments. There are some addtional labs you need to have monitered if you are on ADT’s, and I am sure the endo will tell you about that. There are some side effects of ADTs, so additional labs are necessary.

Regarding your clotting issue. That is a discussion for you to have with a surgeon. Choose a surgeon who has a lot of experience with doing thyroidectomies.
This is a lot of information for one post. This site has some information for you to read on the home page which might interest you Do write after you have your appointment with the endo
Best to you, Shirley

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in reply to: Fluctuating TSH levels #1062969

I would like to be sure that you are taking your thyroid replacement hormone correctly. If there is variance in how you do it, the labs may not reflect your real state.
1. Empty stomach in the morning with water.
3. No food for 1/2 hour.
4. No supplements for 4 hours.

Is this what you are doing? If there is a lot of variance, because of where and how the drug is absorbed, you "can" be taking a different dose every day if these parameters are not followed.
The other thought I have is that perhaps you should wait longer than 6 weeks for your lab draws and dose changes. This whole darn process can take such a long time! But each dose should be given a good chance to make to fully reflect what your metabolism is doing.

This is just one thought I had. It may not apply in your situation at all.
I DO understand! I have been on the same merry go round. But-when I waited 3 months between labs, it made a big difference for me in a positive way.
Best wishes to you. Sorry you have not heard from anyone before tonight!
Shirley

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in reply to: What to do if the state wont help or your insurance plan? #1062954

I wish the very best for you. I realize this is difficult, time consuming and sometimes discouraging. But keep pluggin away for your health. It just has to happen that you receive a steady stream of appropriate dose of medication.
Shirley

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in reply to: Want to have baby #1063008

I think so too. How wonderful that you have an endo who is listening to you, addressing your concern. Agree with your plan.Your concern that RAI could make your eyes worse is a valid one. Find out as much as you can. ALWAYS good to have baseline exams. Then you and docs can tell when things might be changing.
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