[shakira7]

in reply to: Can bloodshot eyes be about TED? #1181977

Hi everyone,

I went to see an optometrist, to have him fill out an Rx for as well as eye exam. He kept telling me, “You don’t have a TED. I can tell people if they have it or not. You don’t seem to trust your doctors, if you’ve already seen two opthalmologists who ruled out TED, and you’re still trying to get an MRI/CT scan testing done.”
OMG, this guy had such an attitude and all he wanted to do was to sell eyeglass, given he works at an eyeglass store.
I totally ignored everything else he said, and I pushed him to give me the Rx I wanted. In the beginning, he told me to go back to the opthalmologists and let them send me to get the MRI done, since he can’t send me to one.

I had to really bring out my diva attitude of “I don’t care what you say, and you will give me the Rx I need.” (I didn’t tell him this, but basically this was my msg, he he.)

He told me that the redline across my conjunctiva is a blood vessel…it’s supposed to be there.

So, 2 opthalmologists (both are reputable in my town), 1 optometrist and my endo…all of them say that I do not have TED.

In mid-March (or maybe earlier), I will ask the ocular-plastic surgeon to send me to those testings.

[shakira7]

in reply to: New to Graves’ Eye Disease #1181963

Hi Beverly,

I’m so sorry about your recent diagnose with TED, however, I’m relieved to read that your opthalmologist’s prescription has been improving your symptoms. It looks like you’re doing everything you can, to help reduce your symptoms.

I’m also of an asian descendant, and I’ve been dealing with my swollen upper eyelids since Sept 2013. It’s funny you mentioned avoiding salt, cause last summer I ate a lot of food high in sodium (soba noodle, rice noodle…etc). Then I noticed my upper eyelids swollen, so I thought it was the salt that caused this edema.

I’ve not officially been diagnosed with TED, but I suspect I have mild symptoms. I’ve been eating 3 brazilian nuts/day and me too, I use a wedge pillow. I think brazilians nuts have been helpful.

I totally hear you about the stress level that can trigger these conditions. I’ve always had issues with “stressful” jobs, so I’ve been in a position that is less demanding since last year, too.

I live in Canada, but please feel free to share with us your concerns and questions. I joined this forum in sept 2012, when I was first diagnosed with GD, and I think this is a great forum where I got to “virtually” meet other GD patients, although I wish I got to know them on another context a lot more “fun” than GD, ha ha.

In any case, take good care of yourself and thank you for sharing with us your experience. Be well!

Shakira7

[shakira7]

in reply to: Can bloodshot eyes be about TED? #1181971

Hi Raspberry,

Since November 2013, I’ve also noticed a red line on my left eye, one red line. I’ve been more obsessed with my swollen upper eyelid since Sept 2013, so I haven’t paid much attention to this. However, I booked an appt with an optometrist this Friday, for an eye exam. I’m going to ask him about this, too. I’m actually going there to get an Rx to see an ocular-plastic surgeon who has some experience in diagnosing TED & doing blepharoplasty.

From what you’ve written, I think we’re in a similar boat. I don’t have any proptosis or eyelid retraction (BTW, I’m an asian-descendant, so i’ve got no eyelid…ha ha.) I have the swollen upper eyelid and an undereye bag, and now I’m a bit concerned about this red line.

In Oct 2013, I saw 2 opthalmologist who claim that they know about TED; they both confirmed me that I don’t have TED, however, none of them know why I have this swollen upper eyelid. One of them actually told me, it might be “aging”…to me who’s still in my mid-30s & look much younger than my age (thanks, doctor).

Although I hope you do not have TED (nor myself), I’ve been told that we need to see a neuro-opthalmologist or an opthalmologist who is familiar with TED. Kimberly, one of the moderator suggested that I bring a picture of myself before GD, and show it to the specialists.

Let us know how your check-up goes, and I’ll do the same.

Be well!

Shakira7

[shakira7]

in reply to: Hi from Russ, dating a gal, found she has Graves. #1181967

I agree with Raspberry. She’s a very lucky gal to have you, Russ!

[shakira7]

in reply to: Chances of developping TED? #1174616

Hi everyone,

After obsessively taking pictures of my eyes since sept 2013, I’m noticing that my eyelids have not changed since the first time I freaked out back then. The only TED symptom I have so far, is the swollen upper eyelids; so far, no dry eyes, no lid retraction, no bulging eyes, no light sensitivity.

2 opthalmologists who told me they know what TED is (cause I tried explaining them about it), however, they don’t see any symptoms. – this was back in oct 2013. One of them flat out told me he doesn’t know why the eyelids are swollen, the other one thinks it’s part of aging (I’m still in my 30s…)

It’s not that I don’t trust doctors, however, I still feel that I have a mild symptoms of TED, even though I’ve not yet been diagnosed with it. I can’t think of any other reason as to why my upper eyelids got swollen since last summer.

I still look at myself unhappily in the mirror, hoping when/if I will ever get back my normal eyelids.

I’ve been taking 3 Brazilian nuts/day, put ice pack on the eyelids every morning. Not sure if these are supposed to help.

Also, is it true that tomatoes, eggplants and potatoes can worsen TED?
I hate tomatoes, so I can live with that. he he.

After an extensive research all over the internet, I found a reputable ocular-plastic surgeon, trained in US, who does a lot of blepharoplasty, and he seems to know well about TED, according to his profile. I am trying to get an Rx to see him, hopefully in February.

If my eyes remain like this, then I think a blepharoplasty would be sth I’ll look into, to, at least, get rid of the fatty upper eyelids.

Does anyone know what are the risk, if I do blepharoplasty too early?
I’ve heard about scars not healing fast.

In any case, I won’t push the ocular-plastic surgeon to do sth he doesn’t feel it’s a good timing.

[shakira7]

in reply to: Decision to make btw ATD and TT #1181702

@ Raspberry: you’re 100% right about the consequences. good news is that my ultrasound came out very normal, zero nodules.

@ Kimberly and Shirley:
For now, I’ve backed out of TTX. I don’t even have the energy to go after a 2nd ENT surgeon, since it’s such a hassle in Canada to even get a hold of a specialist…unless you have lots of $$ to see a private doctor. I’ll save that option for the future, but thanks, Kimberly, for your suggestion!

The ENT surgeon knows my current endo. Small world. He reassured me that my endo knows Graves Disease and that he knows what he’s doing; he doesn’t think I need to shop around more for another endo, since my treatment has been going well.

This morning, I went to see my endo.
– My ATD treatment is going very well. TSH 2.43
– WBC, liver – they’re all looking good, in normal range.
– Methimazole 5mg/2 a wk since Dec
– Methimazole 5mg/every 5 days for the next 4 wks
– He won’t consider RAI as my treatment option due to my swollen eyelids.

He first suggested that I stop Methimazole, to which I objected.
To his suggestion of 5mg/1x wk, I suggested to go with 5mg/every 5days.
I expressed him how I’m terrified to become hyperthyroid again.
He okayed.
He told me the following:
– If I go into a remission and then relapse, he’ll put me back on ATD.
– By doing this and having me remain on ATD off and on, this Graves Disease is eventually going to die out.

Now, does anyone believe what he just said, about the part where eventually, the Graves Disease is going to fade out after years of ATD dosage?

I would love this to happen, but it sounds too good to be true.

[shakira7]

in reply to: Anyone on Methimazole and experience hair loss? #1181630

Hi everyone,

Thanks for all your responses and sharing with me your experience regarding hairloss.
I started taking an ‘Evening primerose oil’, 1 softgel a day since I posted this message; it seems to help.
I lose less hair each time I wash & brush when they are dry.
Also, the hair seems much softer, then again, I used Aveda hair conditioner which is quite good.
I’ve been finding some interesting things about the evening primerose oil – it actually helps to slow down hair thinning and hair loss in menopausal women and women with thyroid condition.

@Vickie, thanks for your advice. I’m seeing my endo in 2 weeks, and I’ll ask him for a Rx so that I can see a dermatologist. Is there any side-effect with Spironolactone?

Ah…I have to say that this thyroid problem is really annoying.
I’m dealing with hair loss AND eyelid swelling, in addition to dealing with Graves Disease itself.

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181699

Hello everyone,

First of all, I wish y’all a very Happy New Year!!
I went to see the ENT surgeon, and he wants me to get an ultrasound done, to see if there are any nodules. If so, then he will send to get a biopsy done.
Unless there is any cancerous nodules, he prefers not to do a TTX as there are consequences that a patient needs to live with – taking synthroid for the rest of his/her life, possibly taking calcium supplements…etc.

Is it a normal procedure to send a Graves disease patient to get a thyroid ultrasound done?
Wouldn’t it be the blood test results that he should look at?

Is it common that a Graves Disease patient also has a thyroid cancer?

I was a bit surprised this morning, since I didn’t expect to be sent to an imaging centre before deciding to get TTX.

Shakira7

[shakira7]

in reply to: bulging eye and euthyroid #1181831

Hi Marlan,
I’m so sorry you are going through this. I agree with Shirley, that perhaps the first stage of operation is the orbital decompression, which is what you should be able to get by a good surgeon.
I, myself, have been experiencing swelling on the upper eyelid and undereye bag since september this year.
Do you mind if I ask you, when did your left eye start to bulge? In another word, within how many months or years have you started noticing that your left eye started bulging?
In my case, I noticed my swollen eyelids on one afternoon in september, walking home and looking at my profile reflection from store windows on the street. I thought something was different, and then I came home & compared my pictures of previous years.

Take good care of yourself, and hope you’ll be able to get the orbital decompression done as your next step.

Shakira

[shakira7]

in reply to: Maximum amount of time you can be on meds? #1181762

Hi, I started with 5mg Methimazole/day since end of sept 2012 and stopped cold turkey on April 3 2013. My TSH was 6.4 but TSH antibodies was still high.
My lab in mid-june showed I was hyper again with TSH 0.03, just like that.
Given my antibodies being high when I stopped in April with 2.6, go figure.
Then I restarted Methimazole 5mg/every other day since July 3 until end of October.
Since end of October, I’ve been on Methimazole 5mg/every 2 days.
My endo actually wanted me to stop, as my lab showed TSH, T3 and T4 stable within the normal range, however, the TSH antibody receptor is still above normal range. This is why I told him I’d like to remain on my med.
I am scheduled to continue this dosage until end of Jan 2014, and I will most likely insist to my endo that I stay on this med.

@James, wow 10 years of remission, good for you! I wish I can go on perm remission, however, I have an appt with an ENT surgeon in jan. I will see what he says.

Reading all your msgs, I am now gearing back to remaining on ATD on long term with the smallest dosage possible. In fact, depending on the lab result, I am planning on reducing the Tapazole to 5mg/every 3 days.

I haven’t yet decided if I will go with TTX or give my thyroid another chance to see if it will calm down its activity & remain calm. Part of myself wants to remain on Methimazole until the antibody receptor reaches the normal range.

The only side-effect that I am experiencing from ATD is hair loss after shower. After my hair is completely dry, I brush them and I see a huge bulk of hair on my brush. I’ve been using AVEDA product and also an organic shampoo and it seems to help a little.

I’ve been hearing about hairloss side-effect with Synthroid as well, which is why I am not completely excited about TTX.

Like everyone says, it seems like each 3 options have its pros and cons.

[shakira7]

in reply to: What Questions Do You Have About Thyroid Eye Disease (For Our Upcoming San Diego Event) #1181805

I am with Raspberry, regarding all the non-proptosis symptoms. I’ve seen 2 opthalmologist, 1 internal medicine doctor and 1 endocrinologist. None of them seem to know what is causing my upper eyelids to be swollen. When I searched online, I found a plastic surgeon who does blepharoplasty – for his potential clients, he said that those who are experiencing upper eyelid edema (puffiness), they may need to check with endocrinologist and make sure their thyroid level is stable. So, to me, it’s obvious that this is definitely linked to thryoid, and yet none of my specialists seem to agree.
For me, it’s been 3.5 months that I see a change on my eyelids.
Also, I would like to know if thyroidectomy is supposed to prevent from TED/non-proptosis symptoms getting worse.

Thank you, Kimberly, for offering us to ask questions regarding TED.

[shakira7]

in reply to: 7 month post-TT update #1181784

Hi Amy,

Thank you for sharing with us your post-TTX experience.
I have an appt with my ENT surgeon on January 7th.
I’m in Canada, so I’ll probably have to wait at least 6 months to get operated.
Plus, I’ll get bumped over thyroid cancer patients who are more of a priority case over mine.
Honestly, Canada should go private, like US, so that things move more efficiently.

That’s great that you are feeling okay after 1 month.
How long were you away from work?

You must be relieved to have gotten rid of your thyroid, no?

Take good care of yourself, and be well.

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181698

Hi Shirley,

Thanks for such kind thoughts.

Let me ask you something; even when your labs shows normal level in TSH, FT4 and all that, can you still go crazy and become easily agitated? I’m talking about the craziness associated with Graves Disease.

I may have to make a decision next spring about my employment, since a lot of changes are making me feel agitated spending 8hrs. We are very short-staffed since this months, no vacations, no surgery-related absences are allowed between dec – mar every year. Such working climate is working against my health, and I won’t sacrifice my health over some job that doesn’t even pay well.

I also seem to be a lot less tolerant with people around me, and I get easily annoyed and agitated if they get on my way.

I think, the fact that my eyelid swelling is gradually changing my facial appearance, this seems to be causing some distress as well.

Is TTX supposed to resolve this “craziness” issue, too?
I personally hope that my eyelid swelling will stop, once I get my TTX done.

Wow, you’ve been to so many wonderful places. Galapagos is a place I would love to see one day.

Once I find the right dosage, how often do people go back to their doctor for a check-up?

Once I do the TTX, then find the hotspot within 4-5 months at the most, I am seriously considering packing and travel around the world with my savings, for about 1.5 years.

I need to be off from work for 3 weeks, when I get the TTX, and I honestly can see my boss (who actually had her thyroidectomy done last year due to a cancerous nodule) & the coworkers giving me x%$& just the fact that I will be off from work for that long, regardless of the reason. Therefore, I am ready to move on to take care of my thyroid. They do not know the reasons for my medical visits, but it obviously upsets everyone, because I guess they’ve never been sick.

I’m in my early 40s, and I cannot say that I am 100% happy where I am right now. I have nothing that is holding me in my life, so maybe this is the time to do something I like, while I am still in ok-state of health.

Thanks, Shirley,

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181697

Hi Shirley,

Hope you had a wonderful Thanksgiving Day with your family.
Canadian Thanksgiving is on the second Monday of October.
It’s not as big as the one in US, but we get enjoy the long weekend & some take their vacation around that time.

My endo called me back regarding my lab result – ATD reduced to 5mg/3 days, but TSH went up to 2.38. He said the TSH can fluctuate a bit, and I just stay on ATD until my follow-up in January. I sent a request to the hospital to send me the Antibodies results.

I have to admit, that part of myself wishes/hopes I can go into permission remission with ATD treatment. You can tell me that I’m dreaming, and I won’t get offended. I think, it’s because, part of myself is a bit scared of “my life after surgery”. I have been planning to go to do some travelling next year, and I don’t know if I’ll be in good shape by my vacation. I can always postpone the travel, but I just hope I won’t be in a “weak status” for more than 3 months. After being diagnosed with Graves, I’ve decided to see the world as much as I can while I can and while I am still young. Life is too short.

What is the average period after the TTX, to get into the stable status?

Code:

So nice to get to know you, even though our common bond of Graves’ is something neither of us expected or wanted, that is for darn sure.

LOL! Very nice to know you, too! Yep, I totally agree with you, since I’m sure not a single soul on this forum had expected to be diagnosed with Graves. I didn’t even know what thyroid was until I was diagnosed with this disease, ha ha.

---

Hi Kimberly,

Code:

Some people do experience a remission following a course of ATDs. I’ve heard varying stats from 30-50%. I have not seen good data, though, on what percentage of those patients eventually had a relapse.

Only if I can figure a way out to be among the 30-50% who goes into remission permanently, or until i am too old to do any physical activities.

BTW, my right upper eyelid, the one that I’ve been complaining about since September, has been status quo. However, now my left eyelid is very slowly showing edema as well as eyelid twitching. I couldn’t find the cause of eyelid twitching that is related to thyroid condition. I don’t have any dry eye experience as of yet. (knocking on wood.)

So btw TTX and ATD treatment, I will decide in February, when I see the 3rd endo for the 3rd opinion. I wish someone can tell me what they see on their crystal ball, regarding my thyroid – which option to go.

Now that my TSH seems to be in normal range, part of myself wants to give my thyroid a second chance to see if it will “behave” well, so that I can go into remission…for good.

Thanks again to both of you.
Just like Shirley told me, very nice to know both of you, although I wish we all met through another reason, other than Graves.

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181694

Hi Kimberly,

True, US has its own issues in the health care system, but you folks at least can get the quality of service without waiting 3hrs each time you have an appt.

So, both ATD and TTX lowers Antibodies, however, ATD isn’t permanent and TTX is permanent, right?

To my surprise, I received my lab result from last Friday, the one sent by the internist.
My TSH went up from 1.55 to 2.38, despite I lowered the tapazole dosage from 5mg/2 days to 5mg/3 days since October 25.
T3 is about the same, 4.1 to 4.22 since Oct 25.

Is this normal? No, I’m not complaining, he he. It’s the other way around, I’m quite relieved, especially after a rough week last week, dealing with hospital and clinic admins / someone at work complaining about me, that I have too many doctor’s appointments recently. (which I already advised everyone about my out-of-office hours.)

I seriously got concerned that I was going back to hyperthyroid, after decreasing the dosage. I guess I’m a bit traumatized by my 2.5 months remission in april which ended in relapse back to TSH 0.03 from TSH 6.45.

BTW, the internist didn’t sign off TSH antibodies, but I actually did, at the hospital on Fri morning. It might take a few more days before they deliver this result.

I still plan on seeing the ENT surgeon in January.
Would ENT surgeon be able to provide his opinion on this? Or are they just there to do the actual surgery only?

Shakira7

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