16 replies to this topic

[jodileanne]

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I am not sure what comes next regarding my eyes?
Is there any thing that I should be aware?

 

Before I found out that I have Graves Disease...
About 7 months ago my eyes started feeling REALLY dry!!!
It was nearly unbearable. I felt like some one tossed sand in my eyes.
My eyes were nearly swollen shut. I made an appointment with ophthalmology.
The eye Dr. told me that I have autoimmune dry eye syndrome. She sent me home with some over the counter eye drops and some ointment. She told me to use the drops 6 times daily and the ointment every night. She suggested that I use warm compresses a few times a week and add flax seed to my diet. She said that if it didn't get better to come back and see her and that she would need to put plugs in my eyes and possibly start me on Restasis prescription eye drops.
In the following weeks my eyes got worse... not better.

 

A few weeks later I found out that I have Graves.
I made a follow up appointment with her.
In light of the fact that I have graves she measured my eyes and checked them out pretty thoroughly. She put the plugs in my eyes. She also wrote me a prescription for the Restasis but told me not to start using it until I was cleared by my Endo because it would depend on how he was planning to treat my graves disease as to weather I could use Restasis or not. She also told me to start using the over the counter drops that are preservative free.

 

Switching to the preservative free drops really helped as did the plugs.
At first my eyes seemed to be getting better. Less dry and less irritated.

 

But the swelling is worse. Especially in the morning. Now my eyes are so swollen and tender. I had hoped that being on the Methimazole would help but it hasn't. I sent emails to my Endo and to my eye DR. but have not received a reply yet. Whats going to happen next.. What do they do to treat TED? I don't know what to expect and its causing me anxiety.

[Hyperkim]

I haven't personally dealt with TED so I can't really advise you on it. Sorry.

 

Have you checked out the 101 Thread for TED information? That would be the first place I'd check. Next I would eliminate anything in my diet that may cause inflammation. Gluten and sugars are two things that come to mind that cause inflammation. There are many things that are inflammatory. And it also depends on how the individual responds to them. Try an internet seach for "inflammatory foods".

 

I hope you find some answers soon.

[jodileanne]

I need to work harder on adjusting my diet. I will look up the foods that cause inflammation.

Thanks so much for your reply. I am finding that with Graves diet is always a good place to start.  

I am still trying to figure out how to find the TED in the 101 thyroid part of this site.

I am going to spend some time on it today.

[Misty]

Hi Jodileanne,

 

There are some good articles about thyroid eye disease on the site of our medical expert Elaine Moore, Elaine-Moore.com.

 

I had moderate thyroid eye disease that healed in about 18 months. The big things to avoid are cigarette smoke, aspartame sweetener, and dietary iodine (worst are foods like sushi, which has kelp seaweed in it.) Some people are sensitive to msg in food,

 

It's also helpful to control your allergies (for instance with antihistamine pills or eye and nose drops) as anything that stimulates the immune system will worse the Graves' (which involves our immune system working too hard).

 

I wore sunglasses all the time when I was outside or in stores, to keep my eyes protected. And as you already discovered, lots of artificial tears. And the Restasis my be helpful, so do get the OK to use it,

 

Two important things: there is no need to get surgery to correct thyroid eye disease before giving it a chance to heal on its own unless there is too much presure inside (your eye doctor should monitor this).

 

And most important, thyroid eye disease will worsen if your thyroid levels are too high or too low (overmediacated). For most people the best level is when your FT4 is toward the top of the normal range. (The FT3 will follow and the TSH will remain useless for many months, as the Graves' antibodies suppress it).

 

Thyroid eye disease was the most difficult part of Graves' for me, and I was encouraged when my eye doctor told me Mother Nature would heal it--and he was right!

 

Best wishes,

Yvonne, antithyroid meds 2002-2-005, thyroid eye disease for 18 months starting in 2002, remission and good health since 2005

[jodileanne]

Thank you for your encouragement.

[Pam_L]

I'm brings the new lab results over to this thread to avoid getting myself confused.

I am on the Block and replace...I have been on Methimazole 10 mg for 6 weeksI have been on Levothyroxine 50mcg for 4 weeksMy labs just came back. They were drawn on 8/16/13T3 58-159 ng/dL Mine is 96T4 free 0.8-1.5 Mine is 1.0

Jodi,

These explain WHY your eyes are feeling like they do right now. Your in the awkward stage that's a given when first starting BRT. Your FT4 is pretty low, and the T4 medication has not had time to build up and raise that.

 

There's really so short cut here. Adding more T4 right now could possibly overshoot your optimal levels. T4 medication is MUCH slower to adjust. It needs six weeks to show a trend, 8 weeks to stabilize, and a few months more to start undoing the damage caused by the body not being at "normal for you levels".

 

With mid range for this labs FT4 being 1.15, your not as far off as many new patients at this point, but the lower levels will cause the eyes to feel a lot worse.

 

Personally I always thought the extra pressure and aching of my eyes when my levels were too low for my bodies needs, was intensified because hypO levels cause not only increased antibodies, but swelling and puffiness of the whole body. So since my eyes were too big for the sockets.. the hypo swelling made them feel worse. I know it sure makes them look worse. Make sense ? I'm sure the official studies explain that in more official language.

 

Self care is the main game plan for TED and don't do anything to make it worse..RAI.

 

Your off to a good start, not that my opinion helps how your feeling right now, but I think knowing that might help. The link in my signature leads you to Elaine's site. Lot's there.

[jodileanne]

Thank you so much for taking your time to respond to me.
I really feel so much better after reading your reply because you understand.
When all of a sudden I can barely recognize my own face in the mirror... I don't know...
I feel like I need to vent. My 13 year old daughter told me today that this was the worst summer ever!!!
She is so sick of me being sick. I told her that the doctor is working on helping me get better.
She just keeps asking How long is it going to take?? I told her that I feel much better than I did before starting the treatment for graves. BUT now this eye thing happened and she said that she is pretty sure its making me worse by the looks of me...
It is pretty awful looking right now. And I feel like hell at the moment. Well thanks for listening... If there is any other random info that you think of sending my way ... please feel free it really helps

[HoneyMel]

Hi Jodileanne,

 

I'm right with you on this at the moment, with puffy, swollen eyes, esp in the morning, definitely worse since going hypo and I hate it. I did find a good site, with a full blog from someone with Graves and TED, a week or so ago with suggestions to relieve the swelling. Will see if I can find it again (can't remember what search I did- damn my rubbish memory!)

 

I'm using chilled teabags pressed against closed eyes under my sunglasses for 15 mins in the mornings which works wonders. I think the caffeine and the cold compress combo helps. I don't drink caffeinated tea at the moment so I ask my dad to freeze his in twos for me. Another good thing is that it forces me to just kind of relax and do nothing for those 15 minutes too - all good therapy!

 

I hope that helps you too hun,

 

Mel
X

[StCeciliasGirl]

/Very New/ warning! This is just what I've been doing before I was diagnosed this week.

 

Look at closeup of my bug eyes. This pic doesn't show the real bags (swelling) under my eyes. I use (don't laugh) Preparation H on the skin around my eyes to decrease the swelling; takes a few hours, but makes the swelling better. (Yes, the butt stuff. At least it's cheap.)

 

I always wear sunglasses, too. I'm light-sensitive (medically so), and I've heard enough other Graves users are light sensitive that I'm thinking sunglasses (dark ones, like you're blind) might really help.

 

For the immediate future re: my vision and eyes, I've ordered some refrigerated flax oil with omega 3 (particularly, this: http://www.vitacost....il-with-lignans ), and will take a tbsp or two per day, as someone in remission told me to do because I'm having eye issues. (I trust her!)

[jodileanne]

I am so glad that you brought that up about the Flax oil.
My eye Dr. told me to add flax seed to my diet back when this whole thing first started with my eyes.
I checked out the link to the flax oil that you posted. I am going to order it right now!!
I noticed it needs to be refrigerated. Is that just after opening it? How long does it stay good?
I want to try the preparation H. Does it burn when you put it near your eye? How long do you leave it on?
Do you just put a little bit or a lot?

 

I just ordered it from the link that you posted. I read the reviews and a lot of people seem to prefer that brand. They say that it is very fresh and better tasting than the others that they have tasted.

[StCeciliasGirl]

I haven't tried it yet, but I think it stays refrigerated all the time. Take 1-2 tbsp/day (which you can mix with smoothies, but I'm just going to down it when it gets here and hope to see some eye improvement!) It looks like it'll last a few months.

 

I put the Prep. H on like heavy eye cream: you can see the white, but once I apply it, I let it sit a bit, then go to bed. It seems to disappear after a little while. Sometimes I use more in the morning, too, and leave it on under makeup (or just let it sit a bit, then tap it into my skin like makeup; it's white, so it can brighten up the eye area). When it looks oily (like if I'm wearing no concealer and just the Prep H in the morning), I'll let it sit 5 mts, then lightly tap the white or oily parts with toilet paper. Sometimes I'll add some concealer eye makeup on top of the Prep H immediately if I have to be somewhere fast, and then use my fingers to "fix my eye makeup" (smear it together) when I get to where I'm going. LOL, like it's a makeup base.

 

(Works better than those cosmetics that promise to get rid of puffiness. For real.)

[jodileanne]

Good Morning

 

So I just go an email from my Endo... He told me that my labs look really good, Stay on the same dose of both the Methimazole and Levothyroxine. Make an appointment to see him in 3 months and have labs done a few days prior to seeing him. He also said that it was normal to see the RBC drop a little while being on the ADT's so not to worry much about that. Do you think three months is a little long to go with out labs or is that normal for being on block and replace???

[ccooney]

Hi Jodileanne,

 

I see you have a lot of replies already but I will add my advice.  Beginning last July I started having swollen eyes in the morning.  I went all over the internet trying to figure out why (my doctor was no help on that one) and my leg was swelling.  Eventually, at the ER someone tested my thyroid levels!!!  So it turns out I have moderate TED and also pretibial mxyedema, the third, but rare, part of Graves. 

 

From the beginning my endocrinologist recommended taking Selenium to stabilize my eyes (just the minimum daily requirement).  I would definitely recommend taking this as it is supposed to be protective of eyes, and retard further damage.  

 

My eyes did get worse however when I became hypothyroid because ATD overdose.  That is why I went on block and replace, to better stabilize my levels, which is I believe is what you are also doing. 

 

I also started taking Thyrosoothe, which is an herbal conconction.  The bugleweed in it was shown to block the action of the Grave's antibody in in vitro experiments (published in Endcrinology--a mainstream scientific publication).  So I figured that the methimazole and the replacement hormone had fixed my thyroid level problem, but that I still needed to block the antibody to reduce the swelling of my eyes and my leg (only one leg is swollen).  Actually sort of funny, because in the am my eyes are swollen, and gradually over the day recover, whereas my leg is swollen by the end of the day, and becomes normal by the morning.  I think taking the Thyrosoothe has helped my eyes a lot and my leg somewhat.  Although my eyes are still swollen in the morning, they feel less stiff upon waking.  I did ask my doctor and he was ok with taking Thyrosoothe although he was not interested in discussing it at all--even though it worked in the lab, it might not be strong enough to really help--but I think it really has somewhat.  So..if you feel your eyes getting worse, it is something you might consider taking.  It is available online and not too expensive.

 

Best wishes for feeling better--

 

 

 

 

 

[jodileanne]

I did read some thing about Thyrosoothe, I will have to check it out.

So sorry that you are dealing with the leg thing. What did it look like when it first started?

The reason I ask is because, about a week ago I noticed some thing different about my skin on the front of my legs near my ankles. 

Its like little red dots... almost looks like little red freckles? They are not raised up at all. Flat really.. 

I noticed them when I got out of the shower ... there were bright red speckles. as the day progressed they were less noticeable.

They do not itch or any thing like that... I have seen pictures on line of the leg issue related to graves. But no photos of when it first starts.  

[cd3764]

I, too, had eye issues when hypo.    In fact, my eyes were so "unbalanced" in appearance that my better half refers

to this African mask he has as one made for a Graves' patient (the eye holes are different in size)....blech

 

Anyway, you have already been given great advice about different ways to deal with eye symptoms.    I've read people

mention that the eye exercises in Elaine Moore's book about TED were very helpful.

 

Most importantly, I'd like to emphasize that waiting 3 months for labs is ridiculous.     

 

I've been taking thyroid hormone replacement since March 2010.    My doctor has her thyroid patients get labs 4 wks.

after any dose adjustments and every 8 wks. for general monitoring.

 

The 4 wks. doesn't really take into account just how long it takes for the FT4 level to stabilize after a dose adjustment

and following her lab frequency just didn't work for me.   Of course, I wanted to believe it would work because that meant

my levels would improve more quickly.

 

However, early in the meds titration process, I had labs done 4 wks. after a levothyroxine dose increase and they showed

my FT4 level just where it needed to be (high end of the range).    For obvious reasons, I didn't get another dose increase.   However, hypo symptoms started to return within 2 wks. and subsequent labs showed what my "true" FT4 level was and it was inadequate.

 

It takes 6 wks. for the FT4 level to stabilize after dose adjustments (TSH a couple weeks longer but we know that info is

useless to Graves' patients).

 

I get labs 6 wks. after all dose adjustments and recommend you do the same....

[ccooney]

Hi Jodileanne,

 

About the leg problem, it does start as a reddish rash.  I had just had a foot operation, so I thought maybe it was an infection, but my doctor said it wasn't.  Having the foot operation (I didn't know I had Graves--diagnosed right after) was probably the worst thing I could have done--it is that leg and foot which is really swollen now.   

 

I would say what you have on your leg sounds like the "Grave's dermopathy", because it is in just the right place, but is very mild.  Even if it is, it doesn't mean it will get worse.  Actually, mine went away, but then, I think because I went so hypo on methimazole, very up and down for months, it started again, and then got really bad. 

 

Since you are on block and replace, hopefully your thyroid levels are more stable and it will go away. 

 

Best wishes,

 

Carolyn

[jodileanne]

Carolyn Thanks for your reply...

 

Its good to know that it can be mild and then possibly go away.

While it is not to bothersome at the moment I really wasn't looking forwards to dealing with

the eye thing and the skin issue at once.

 

I hope the swelling goes down for you. Graves affects our lives in so many negative ways.

But one of the positive things that Graves has done for me is that it brought me to this place

where as I have met kind strangers and found support which I greatly appreciate.

Just when I start feeling like I am alone with my struggles I get a message from some one

who struggles right along with me.... Some one who understands.  So thank you...