[LKBallenger April 1, 2013 at 8:35 pm Post count: 20]

#1059802

I was recently told that I have the antibodies that are positive for Graves’ disease. For the last 6 years my blood tests have shown that I am hypothyroid. I have been and am currently on thyroid replacement medication (synthroid). I have never been hyperthyroid.
My symptoms are all in my eyes…….dry eyes, swollen and retracted eyelids as well as double vision in the morning.
I still don’t have a definitive diagnosis. I meet with my doctor on April 10.
Anybody out there hypo with Graves’ ophthalmopathy?
Also wanted to put a “shout it out” for Kimberly. Thank you so much for facilitating this!

[KimberlyOnline Facilitator April 2, 2013 at 11:14 am Post count: 4294]

#1177698

Many thanks for the kind words! Interestingly, thyroid eye disease used to be called “Graves’ Eye Disease”. But the terminology has changed in recent years, because it is now recognized that patients with other issues (particularly Hashimoto’s thyroiditis, and even hypothyroidism that is not due to Hashi’s) can also have eye involvement. Some patients actually start with the eye issues while their thyroid levels are still normal.

Another situation that can occur (although it’s much less common) is that Graves’ antibodies can actually block thyroid hormone production, when the more usual course is that these antibodies *stimulate* thyroid hormone production and cause hyperthyroidism.

Hopefully, you will get some additional direction on the 10th…definitely keep us posted!

Take care!

[LKBallenger April 2, 2013 at 11:54 am Post count: 20]

#1177699

Dear Kimberly,
Thank you for your quick response. I just got done viewing your talk “10 ways to look and feel great”. It was very helpful. I will definitely be looking into some of the products you mentioned.
I was a latisse user for about 1 1/2 years before my eye symptoms. It took me almost a year for it to get diagnosed as TED. I was wondering if the latisse caused the eye problems……sounds like the brushes may have been the culprits. I also have tried eyelash extensions which I totally regret because they are so hard on your lashes.
My second opinion eye doctor did test my mycomean glands (sorry if I am slaughtering the spelling). They were not functioning properly. At one time I thought I was using lotemax drops but I thought those were steroid drops. Or is lotemax a brand name and I just need to get the drops with oil? What do you think about the refresh gels and pm ointment that are OTC?
One last question…….my TSI is 553 H. Do I need to be alarmed about this number? Is the higher the number, the more involved the eye problems?
Sorry, one more question…….are you familiar with Elaine A. Moore who wrote Thyroid eye disease, understanding Graves ophthalmopathy? I’m reading and doing a lot of research and want to make sure my sources are good.
One more thing, LOL, my doctor suggested putting me on hormone replacement therapy (estrogen/progesterone) to help with insomnia, my sad emotions, and osteopenia. I had my ovaries removed 8 years ago due to the BRCA1/BRCA2 genetic mutation……..yes, I have both mutations……..I ended up getting dealt a pretty bad hand when it comes to genetics I have avoided HRT due to possibly increasing my breast cancer risk but was considering it to try to get off the Benadryl and ambien. I read it Elaine Moore’s book that “estrogens are a known environmental trigger for autoimmune thyroid disease. Because estrogen can influence the course in autoimmune disease, worsening symptoms, the use of estrogen supplements can contribute to symptoms of GO.”
How bad is just staying on the Benadryl? Even though it may contribute to the dry eye? Sorry didn’t mean to go on this long…..l….

[snelsen April 2, 2013 at 12:20 pm Post count: 1909]

#1177700

I am flying today. Will respond to you post when I get home and canusemy computer
Too much to say fromiphone
Shirley

[smtucker April 2, 2013 at 1:36 pm Post count: 74]

#1177701

Wow. BRCA+ and estrogen do NOT mix! Lots and lots of literature on this. Do some reading here:http://www.facingourrisk.org/
This is a wonderful non-profit and discussion board for BRCA positive people.

Oh, and welcome. Sorry to rush into the “other” stuff but my neck hairs stood on end as I read your original post.

*susan*

[LKBallenger April 2, 2013 at 2:39 pm Post count: 20]

#1177702

Thank you Susan. I appreciate any and all input!

[KimberlyOnline Facilitator April 2, 2013 at 3:55 pm Post count: 4294]

#1177703

Hello – Sorry for any confusion, but I’m a fellow Graves’ patient and not the “Kimberly” in the 10 things video! Glad to hear that you liked it, though…it was from our 2012 San Diego Conference and received a great response.

I’m not familiar with the details of complications coming from the BRCA1/BRCA2 genetic mutation, but it sounds like Shirley might have some info to share on that. Hopefully, she will arrive at her destination safely and chime in here.

On the TSI, many docs do use this to measure the course of thyroid eye disease, but it’s not a perfect correlation. For example, one of our volunteers who was in the middle of multiple TED surgeries shared that she had a TSI in the mid-400s. Hers was almost identical to mine at the time…and my eye issues have been more mild so far (although definitely bothersome).

Different brands of eye drops seem to work for different patients…you might ask the doc on the 10th for any recommendations. This presentation from our 2011 conference in Boston on dealing with dry eye might also be of interest:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/watch?v=xat5SBU_1_c

Benadryl can definitely have an impact on dry eye, so you might try a few days with/without it to see if you can tell a difference.

Take care!

[Naisly April 2, 2013 at 4:11 pm Post count: 143]

#1177704

Quote:

For example, one of our volunteers who was in the middle of multiple TED surgeries shared that she had a TSI in the mid-400s. Hers was almost identical to mine at the time…and my eye issues have been more mild so far (although definitely bothersome).

That is because you have a thyroid. TSI will attack other tissues once the thyroid is gone. Most people on ADT’s do not have many eye issues and if they do, they are usually not severe, at least not severe enough for eye surgery. And as your levels normalize, so will your eye symptoms while your on ATD’s

LKBallenger Many Graves patients are Hypo before they end up Hyper and this can go on for years.

[KimberlyOnline Facilitator April 2, 2013 at 4:26 pm Post count: 4294]

#1177705

@Naisly – Actually, this individual developed her severe eye issues while on ATDs, and later chose thyroidectomy as her treatment option.

Although there is a higher risk of eye involvement with patients who choose RAI as their treatment option, any patient can experience severe TED, even those on ATDs.

[Naisly April 2, 2013 at 4:32 pm Post count: 143]

#1177706

Kimberly, this is why I used the words:

• Most
• Usually

As I said, as you normalize on ATD’s, for most, the eye issues will improve because your TSI is lowering.

[ChristinaDe April 2, 2013 at 5:55 pm Post count: 115]

#1177707

Some people have eye issues before they have thyroid symptoms. Those folks have their thyroids & are receiving none of the thyroid treatments or hormone supplements. A Graves’ eye specialist discussed this in one of the videos on the Foundation’s Facebook page. There just don’t seem to be any absolutes with Graves’, especially regarding the eyes (his words). Complicates everything.

[LKBallenger April 2, 2013 at 6:18 pm Post count: 20]

#1177708

Oh how I wish I could get off of my “Bennies” as I like to call them. I’ve tried before and I will be up all night.
If the HRT (estrogen/progesterone) won’t exacerbate the TED and I am on them short term…….meaning once my eyes are not in the active state……I am willing to give it a try. What I am wondering is if the estrogen will help or hinder the eye problems? Thanks all for the input! Laura

[snelsen April 2, 2013 at 9:25 pm Post count: 1909]

#1177709

to Laura
I am finally home, wrote a long post, then for some reason it went away.
I think I’ll call it a day soon, it has been a long one. I am glad you have an appointment soon, so I have given you some thoughts for your questions during that appointment.

1. I have concerns about you being advised to take a hormone combo of estrogen/progestin. There are many evidence based studies,the most extensive one with a huge sample of the population is the Women”s Health Initiative, which concludes without a doubt at all, that there is much more risk in postmenopausal women taking both hormones. It has been a Standard of Care for several years, now to prescribe estrogen only. I suggestion you review this with the doc who prescribed them, suggest you get 2nd opinion on this.

2. Briefly, in TED, our tears are not as lubricating, and this is what your doc was talking about. Not a bit unusual for TED people to have dry eyes.
The meibomian glands (or tarsal glands) are a special kind of sebaceous gland at the rim of the eyelids inside the tarsal plate, responsible for the supply of meibum, an oily substance that prevents evaporation of the eye’s tear film. Meibum prevents tear spillage onto the cheek, trapping tears between the oiled edge and the eyeball, and makes the closed lids airtight.[1] There are approximately 50 glands on the upper eyelids and 25 glands on the lower eyelids. The glands are named after Heinrich Meibom (1638–1700), a German physician.

4. Elaine Moore writes well and is easy to read. At one time, she posted on this forum because she had Graves’, just like the rest of us.

Subsequently, she has published many books about many subjects.
Her backgroundShe is a medical technologist, so she worked in a lab, and lab tests are familiar to her.
However, I have concerns about anyone who is writing books inferring authority on so many different subjects, including kidney disease, Parkinson’s and more I cant think of right now. And thyroid disease, as you know. I think I’d prefer to get my information respectively, from nephrologists, neurologist, and endocrinologists and rheumatologist, neurologists, for these issues. There are many people with PhD’s and MD’s in immunology and endocrinology, and they would probably the first to tell you that there is a lot to be proven and known in any of these fields.
So, the statement in her book is to be questioned with healthy skepticism. I wonder what citations she is referencing, to document her new revelation.

The quote from her book:
” I read it Elaine Moore’s book that “estrogens are a known environmental trigger for autoimmune thyroid disease. Because estrogen can influence the course in autoimmune disease, worsening symptoms, the use of estrogen supplements can contribute to symptoms of GO.”

Time to go to bed.
This is a great website. I do not know what I would do without it.
Shirley

[LKBallenger April 3, 2013 at 10:35 am Post count: 20]

#1177710

Thanks Shirley,
I will be talking to my doctor. I am planning on talking to a doctor that specializes in autoimmune diseases as well. I just really need to find something to help me sleep that doesn’t dry my eyes out. My friends give me lots of suggestions but since I am without ovaries the usual things just don’t help. I am thinking the Benadryl verses the Estrogen is the lesser of two evils. I just wish this TED would go away! Have a great day and thanks for posting. This blog lets me know that I am not alone…….

[LKBallenger April 4, 2013 at 9:21 am Post count: 20]

#1177711

Good morning! I was wondering if anyone has tried Nasonex to reduce eye symptoms? It was one of the recommendations in the “10 things to help you look and feel better”. The thought is that it can be locally verses systemically delivered. When delivered nasally it seeps through the orbital bones to help calm down the muscles of the eyes.
Also does anyone know of any oil based OTR eye drops that don’t contain preservatives? I use the night time ointment but that won’t work for the day….it’s like putting Vaseline in your eyes! Thank you much!

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