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in reply to: Rituximab #1172924

Tnapuvlu, Rituxin is not a cure. You will still have TED. You will still need to have good eye docs involved in your care. If you are in the active phase, this is very important. I suggest you ask your eye doc his/her thoughts on what stage you are with TED, review what aids you have used so far-there really is not much to do in the active phase in terms of treatment- only to help with symptoms, eye ointment and drops, sun glasses, see an eye doc about prisms if you have double vision. And definitely have a doc checking your visual fields. If you begin to lose any vision, or if the color red changes in any way, you must be seen. This could necessitate an orbital decompression in the active phase to save your vision. This happened to me.
Read the study Kimberly referred to. It is small, and basically, people are hoping, and in a few people it did, decrease the severity of TED.
Talk all of this over with your eye docs.
Shirley

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in reply to: New to the Site #1172945

I vote for calling the office, saying what needs to be said to get the labs, and also what you are experiencing. “I notice profound changes, sometimes I want to sleep three hours at a time.” You do have to get the attention of the voice answering the phone so the message is relayed promptly with some degree of accuracy. As Kimberly said, I hate to think you might be moving into hypo territory, but that is its’ own special hell-along with being hyper.
I am so darn sorry that this is your summer! This is all so hard

Anyone I have known has had excellent success with WW. (except Kimberly! it just wasn’t right for her.) I’d give it a whirl, cause it is taking ACTION, and it is not some way out crazy thing. Some people stay on it for life. In the future, it may not even be an issue for you, but right now, it is.!
Do join us and continue to write. This forum rocks!
Shirley

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in reply to: My Ears … #1172951

I think that you will find that nasal spray will help, if you use it consistently.
Shirley
First thing that has helped me.

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in reply to: Rituximab #1172921

Hi Jennifer, here is my experience.
I had severe TED, still do, I guess. The steroids reduced the orbital swelling as long as I was on them, but all reverted back to bad when i tapered the prednisone. AND I hate that drug! Then had methyltrexate, lots of shots, did not seem to help. Then rituximab was suggested, but I was so so sick of trying interventions that did not work, I simply did not want to take it, go to the hospital to do it, all the rest of that.
I HAD to have an OD because I was losing my vision. No choice.
Although evidence based studies are quite small, they are encouraging with using rituximab to decrease the severity of TED.
Do I wish I had done it? Yes. So if you have TED that is driving you nuts, and it is several, and your doc has gotten that approval, sounds like you are going to do it. And I am glad that you are. Maybe it will save you some of the misery that I have experienced. The fact that your doc knows about it is very impressive. He is keeping up with the very recent outcomes in that area. He has probably told you about them. Do keep writing.
Shirley

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in reply to: Feeling Harvested? #1172905

Well, probably you and your doctor know why you had the hysterectomy. We’re just plain patients here. I do know many women have very painful endometriosis, and a hysterectomy is sometimes the answer to a pain free world.

I suggest you review with an informed doctor, your thought that the thyroid antibodies related to Graves’ can attack other organs.
I think you can safely assume that your thyroid, uterus and gall bladder went into hazardous waste, and then to the dump.

YOur comment about your eyes makes me wonder if you are having eye symptoms that could be thyroid eye disease (TED.) A visit to a good eye doc who is familiar with TED should help you with this.

How often do you have your thyroid labs done? I suggest, since you are not feeling well, it is worth a call to your endo’s office, ask them to order a thyroid panel for you Perhaps you need a change in your thyroid hormone dose. I presume you are taking it every day, on an empty stomach, with a full glass of water first thing in the morning? That is the way to do it, for then symptoms and labs will be reliable.

Of course everyone on this post knows how very difficult Graves’ is. It is very very hard to have, with many frustrations along the way.
I had a thyroidectomy, too, and have been very happy with that decision. But I do have labs at least once a year, or when I feel I have symptoms of either hypo or hyper, so that I am on the right dose.
Hope this helps a bit.
Shirley

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in reply to: New yearly ish update #1172897

How nice to hear from you! I think it means so much to hear from someone who has been through all the crap and BS, and is on the “other side,” and actually having a life! Thank you, thank you and thank you again for writing.
Someone on the forum now will read your post, and have hope where there was not hope when we begin this Graves’ battle. It is very, very difficult.

Wow, you are really riding that bike! I am older than you, and decided the higher up I am from the ground, the farther I have to fall. This epiphany happened when I hit one tiny pebble on a bike trail and went sailing over a bank of blackberry bushes. Now I walk and take enhanced fitness classes, which I really recommend. Keeps me honest, and I really notice when I am out of town for a couple of weeks, and return to the class. Reassuring to know what a positive difference it makes.

I have modified my diet a bit for a variety of reasons, I guess primarily because I feel that good cardiac health has a better chance with less meat, less dairy and less fat, sugar and carbs, especially carbs that are white (flour, potatoes etc.) And more whole grains, green vegetables, quinoa, kale and chard (never had as a child)
Thank you for checking in, do it again sometime! I am sure happy for you. You have definitely been there, and done that, with Graves’.
Shirley

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in reply to: thyroid and eye disease #1172307

I couldn’t agree more. That is why I sent the 2nd post. However, I have looked at our list, and I cannot find a good synopsis of TED. I don’t recall the name of the reference you provided right now, but it had two ways to read it, different sets of pages. I read the entire chapter on TED. As I recall, surgery was not mentioned. I will go to our list again. And, if you have a ready reference, that clearly explains TED from start to finish, please send it on.
Shirley

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in reply to: thyroid and eye disease #1172305

I’ll get this book from the library. Just looked it up. This author has presented some questionable solutions for Graves’ disease. So I’ll see what was done with TED. Thank you again.

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in reply to: thyroid and eye disease #1172304

Thank you, kal…………..!!
I have been looking for a good reference on Thyroid Eye Disease. I’ll definitely check it out!
Shirley

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in reply to: New & Frustrated & Mad #1172893

Hi Mary, my two cents to add to others. My comments are from my own experience with Graves. With TED (thyroid eye disease) and with FMLA

1. Graves’ which is hyPERthyroidism. There is a lot of good info in the search box. In summary, your are receiving too much thyroid hormone, and this generally results in a fast heart rate, tremor when you hold out your hands,voracious appetite, muscle weakness, feeling hot all the time, feeling crazy, to mention a few.
I think another post referred to the treatment choices, but barring other physical issues, there are three:

A. ATD’s-which were prescribed for your right now. Almost everyone begins with this med, to get us in a safer place. Then you still have three choices.
One choice for you is to continue with ATD’. Some on this board, including Kimberly, have made that choice. She has some great posts about her experience and thoughts.

B. Surgery-this was my choice. I wanted the fastest way possible to get the Graves’ symptoms out of my life. Alexis, adenur on the posts, has some great posts about her thinking to make that choice. lch11 or lhc11 also wrote some great posts about her experience.

C. RAI-This is used in this country a lot. Many on this site chose it.
But in your situation, with your present eye issues, there is more to think about. In summary, recent studies how shown a worsening of eye symptoms after RAI with people who already have eye issues. And, if you wanted to choose that, you would need to have the endo and an eye doctor who UNDERSTANDS Graves’ and TED, working together to give you the proper treatment before you had RAI.

There are pros and cons, both personal, and physical, associated with each treatment.

2.[/b]THYROID EYE DISEASE (TED)
If you have TED, and you do have many symptoms of TED, you absolutely need to have an opthalmologist who is familiar with TED, see you on a regular basis. *****The endocrinologist is NOT the person to diagnose or follow thyroid eye disease. This is a very frustrating disease, it can be mild or severe. There are two phases, the active or hot phase(9-15 months or so), where eyes are changing, better one day, worse the next. And the inactive time, or cold phase, where permanent treatment can happen if necessary. Several surgical procedures can be done at this time, for retracted upper and lower eyelids, double vision to name a few.
I am SO SORRY your endo told you that your eyes will never get better.
That must have been tough to hear.

3. FMLA-I disagree with the poster who said that FMLA was only to be a caretaker for others. It is possible I misunderstood the post.
My experience with FMLA:
I had it three times. Twice to recover from breast cancer chemo, and once for a broken leg while skiing. I had it granted when I had double vision with TED,but I had already retired, and was working only part time so I decided to permanently retire.
The definition does say serious. But I have found HR to be wonderful and understanding, and I do encourage you to explore that route. Someone mentioned disability. That is another whole ball of wax, and is complex and difficult to obtain.

Regarding your Cushings’ diagnosis. Read the Mayo Clinic reference Kimberly mentioned. I encourage you to be sure you have a firm diagnosis of Cushings/
You really do have challenges, for sometimes it is possible that an endocrinologist who has a large Cushing’s patient population, does not have much interest in managing Graves’ patients.
Regarding your seizures, I am presuming you have a neurologist working with you on that. Lots of folks have seizures, and many have focal seizures.
The neurologist definitely should be managing that, not an endocrinologist.

In summary, my heart goes out to you, and I know the next few months will be very frustrating, but you will feel better, and get your life back. Having different metabolic physical problems, and getting the doctors to communicate with each other so you have coordinated care, is truly challenging. Do keep writing to us.
I know you know we aren’t professionals, but we sure have been there, done that regarding Graves’ and TEd.
Shirley

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in reply to: Save the Date – San Diego Conference & San Francisco Patient Education Event #1172433

Got it! THanks. Unfortunately< I cannot attend the SF event. I am on my way to Sun Valley to visit my kids on that day. (With several pairs of sun glasses for my photophobia!>)
I plan to enroll in the San Diego conference today. I sure hope there are some talks about TED! My last four surgeries were total failures, not only that, they came with complications, giving me more problems.
Shirley

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in reply to: Save the Date – San Diego Conference & San Francisco Patient Education Event #1172431

WHERE in California is the July 31 event? I read both sites, maybe I am missing it completely, but I have no idea where it is.

I am not referring to the October convention. I know that is in San Diego.
Shirley

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in reply to: Frustrated with Dr. #1172619

Hi CAro, from my view, the doctor inferring that you are “fine” yet not agreeing to provide a medical release to go back to work does not make any sense to me at all.
Perhaps I misunderstood. We’re you asking a not from the doc NOT to back to work, or a release saying it was ok with him TO go back to work?

I am sending you a PM TOO.
Shirley

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in reply to: Return to work release form #1172607

Yes, that is the way it usually works, as NLbatten says.
But it can vary. Sometimes you just need a note from the doc.
Ask your boss, or HR.
Shirley

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in reply to: hhchong- How did your surgery go? #1172573

Thanks, Kimberly, that is helpful.
Shirley

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