[shakira7]

in reply to: Off of ATD – How long can Graves remission last? #1184888

Hello everyone, thanks for your replies.
emmtee: So did you get your TT done? how did it go? Yes, I am going to say NO to RAI option, or else, I might have to consider finding another endo.

scanders: I hope you can get by for a long period of time without going back to ATD.

Kimberly:
I agree with you…seems like this is really a case by case. I wish I can find an endo like yours who were able to put you on a 2.5mg per week. I was taking 5mg every 5th day…and my first endo (before he retired) kept telling me it’s too small that it won’t have any affect.

I am happy for you that you didn’t experience a relapse.

Like I said, my main concern here…is not so much of relapse…but not going to TED ever again.
No one knows how much I suffered with TED.

I’ll try to remain positive.

[shakira7]

in reply to: Methimazole …how long can you take it? #1183616

OMG, I must have been falling asleep last night while I was replying to this forum. So sorry to have posted 3 identical msgs!! No, it’s not my hyperthyroid that made me go crazy. lol!

Hi Alisa, thanks for sharing your stepmother’s thyroid journey. I’m so glad to know that your stepmom has been on Methimazole for 16 yrs.

I should have my lab result towards end of next week, since it’s the Easter weekend. If I don’t hear from the clinic, then it’s a good news. I hope they won’t call me…cause that means my TSH is running low & that my dosage (5mg every 5 days) would need to be increased.

[shakira7]

in reply to: Methimazole …how long can you take it? #1183614

Hi there,

Welcome to the community!
I’ve been on Methimazole since Sept 2012, when I was initially diagnosed of Graves Disease. I started off with 5mg / day until April 2013 when this dose made me become hypo. I stopped until July, when my lab test showed that I went back to hyper. I re-started taking 5mg/ every 2 day. 3 months later, it was reduced to 5mg/3 days and so on. Since Sept 2013, I’ve been on 5mg/every 5 days, and my TSH has been stable so far.

However, my most recent period made me get worried. The amount of blood was decreased a bit, and I’m still 43…perhaps not a menopause sign (?). I remember “reduced period” was one of the symptoms I had before hyperthyroid was confirmed. So I called my endo, he sent me a new blood test requisition. I am now anxiously waiting for my results.

I’ve also lost 2 pounds, but I contribute this to my “diet” since Jan 2015 – no transfat, no sugar, no processed food…and stay with paleo. I would guess this made an impact someway to my body system.

If my lab results say that I’m hyperthyroid again, then my endo is supposed to increase the amount of Methimazole.

No, I haven’t experienced any side-effects.

So, to answer your question, as long as you don’t have side-effects, I guess you can be on methimazole on a long-term.

Hope this helps!

Sharkira7

[shakira7]

in reply to: Methimazole …how long can you take it? #1183613

Hi there,

Welcome to the community!
I’ve been on Methimazole since Sept 2012, when I was initially diagnosed of Graves Disease. I started off with 5mg / day until April 2013 when this dose made me become hypo. I stopped until July, when my lab test showed that I went back to hyper. I re-started taking 5mg/ every 2 day. 3 months later, it was reduced to 5mg/3 days and so on. Since Sept 2013, I’ve been on 5mg/every 5 days, and my TSH has been stable so far.

However, my most recent period made me get worried. The amount of blood was decreased a bit, and I’m still 43…perhaps not a menopause sign (?). I remember “reduced period” was one of the symptoms I had before hyperthyroid was confirmed. So I called my endo, he sent me a new blood test requisition. I am now anxiously waiting for my results.

I’ve also lost 2 pounds, but I contribute this to my “diet” since Jan 2015 – no transfat, no sugar, no processed food…and stay with paleo. I would guess this made an impact someway to my body system.

If my lab results say that I’m hyperthyroid again, then my endo is supposed to increase the amount of Methimazole.

No, I haven’t experienced any side-effects.

So, to answer your question, as long as you don’t have side-effects, I guess you can be on methimazole on a long-term.

Hope this helps!

Sharkira7

[shakira7]

in reply to: Methimazole …how long can you take it? #1183612

Hi there,

Welcome to the community!
I’ve been on Methimazole since Sept 2012, when I was initially diagnosed of Graves Disease. I started off with 5mg / day until April 2013 when this dose made me become hypo. I stopped until July, when my lab test showed that I went back to hyper. I re-started taking 5mg/ every 2 day. 3 months later, it was reduced to 5mg/3 days and so on. Since Sept 2013, I’ve been on 5mg/every 5 days, and my TSH has been stable so far.

However, my most recent period made me get worried. The amount of blood was decreased a bit, and I’m still 43…perhaps not a menopause sign (?). I remember “reduced period” was one of the symptoms I had before hyperthyroid was confirmed. So I called my endo, he sent me a new blood test requisition. I am now anxiously waiting for my results.

I’ve also lost 2 pounds, but I contribute this to my “diet” since Jan 2015 – no transfat, no sugar, no processed food…and stay with paleo. I would guess this made an impact someway to my body system.

If my lab results say that I’m hyperthyroid again, then my endo is supposed to increase the amount of Methimazole.

No, I haven’t experienced any side-effects.

So, to answer your question, as long as you don’t have side-effects, I guess you can be on methimazole on a long-term.

Hope this helps!

Sharkira7

[shakira7]

in reply to: Stressed and needing a pep talk … #1182881

Hi flora,

Yes, my life right before I was diagnosed with GD has been a turmoil.
I’m talking about 5 long years; things were just falling apart in my life & I don’t even know how I managed to get through those yrs.

You are definitely not alone here.

Shakira

[shakira7]

in reply to: Eyelid retraction correction surgery #1182609

Shirley, thank you so much for such a thoughtful word of encouragement!!
This forum has been my key resource & support ever since I have been diagnosed with GD in 2012. Honestly, I don’t even know how I went through all this without losing my mind.

Yes, it was quite a challenge for me, especially because most average opthalmologists don’t seem to be able to detect the TED symptoms. I found my oculoplastic surgeon through one of the reputable TED surgeon whose name came up on this forum. I immediately contacted his clinic, and he was very generous to give me a referral of his friend (oculo-plastic surgeon) with whom he did the residency & who works a lot closer to where I live. His friend turned out to be very nice, approachable & the entire clinic staff were very helpful.

BTW, I bought them a box of chocolate last week, and I could see a big smile on their face!

In addition to my TED condition, was the toxic workplace where we would constantly get reprimanded, harassed for getting sick, having a medical condition, having to goto a doctor’s appointment & taking a sick day leave…even worse, getting pressured to work from home to someone who was about to go on a maternity leave.
I work in Canada and this is a well-established, well-known company in its sector…and this dpt treats their employees like some illegal immigrants working under the table.

In any case, it’s all going to be in the past very soon.

Yes, I am partially nervous about my new job – what type of coworkers & managers will I meet. However, I know the job itself will be must more stimulating than what I’ve been doing for the past 2 yrs. I will focus on the positive energy.

Shirley, that’s wonderful that you still get your invitation to your workplace parties!! Yes, it’s great to stay in the loop & hear about what’s going on work while you are not there.

Most of all, yes, of course, I will remain in this forum to encourage other fellow members going through the same health condition.

Thank you again, Shirley, for your kind wishes!!!

Shakira

[shakira7]

in reply to: Eyelid retraction correction surgery #1182607

Thank you, Kimberly!
My eyelids are doing much better this week, but I still have to make sure the water doesn’t get inside my eyes when I wash my hair.
Although it’s not completely healed yet, it feels great to have my original look back. I’m sure everyone reading this, who had/has TED know what I’m talking about.

YES, I got the job offer today and I gladly accepted it!!!
I start in 2 weeks.

I can now sleep in peace this weekend.

[shakira7]

in reply to: Eyelid retraction correction surgery #1182605

Thank you, Gatorygirly and Kimberly!

Yes, I had my eyelid retraction correction surgery done yesterday.
It wasn’t a big surgery; i think the surgery itself lasted maybe 30 mins?
I felt a bit dizzy after it was done and a minor pain when I got home; other than that, it was alright.

Since yesterday, I look as if I were beaten up. I’ve been putting ice pack around my left eye every hour. It looks a little better than last night, and I look forward to looking like a normal myself soon.
The eyelid area is swollen from the surgery, which I hope, will sink down, too.
My left eye now looks like a sleepy eye, completely the opposite of pre-operation where it looked like I was staring at something.

I’m so glad my doctor gave me 2 weeks to recover, cause with one purple eye like that, I would have felt uncomfortable going to work.

Gatorgirly, yes, at least the HR has been helpful regarding my medical leave. I submitted my med certificate directly to HR, and bypassed my boss. Although she knows all med documents are highly confidential, she cannot keep it private and she would share her employees’ medical info with her colleagues. I was so relieved that the HR told her, that they would be the only ones who will receive my med documents.

I have a follow-up with my doctor next Thursday, and in the meantime, the nurse told me no gym, no violent activities (It’s too funny he used the word “violent”), and no water around the left eye area. He told me, if I don’t feel comfortable, it would be safe to just go into a hair salon and ask them to wash my hair. He was probably the nicest nurse i’ve met so far, very very patient-oriented & accommodating, which made my operation process very pleasant. It makes a huge difference, especially when you are going for an operation. Overall, the clinic members were very nice, so I’m going to bring them a box of chocolates for being such a wonderful people.

One of the place where I went for a job interview called me today (thank got they didn’t call me yesterday!), for a reference check. I gave them 2 references, but not my current boss.

Alright, I’m back to ice pack massage now.

Thank you again for your support, and I will keep you posted!!

Shakira7

[shakira7]

in reply to: Eyelid retraction correction surgery #1182602

Hi Gatorgirl and Kimberly,

Thank you to both of you for your reply. I’m sorry I haven’t had a chance to give my updates, but things have not been going well at work.

I finally got my potential surgery date: 24th of this month.
I’m still waiting for my documents that I need to sign and make a deposit payment…to be officially confirmed, but I’d say it’s 99% confirmed.

I still haven’t announced this to my boss.

I checked with the doctor, and this surgery is covered by provincial health care plan. It is due to medical reason, not cosmetic. Thank god.

Gatorgirly, my workplace is not nearly as nice as yours at a college. I believe people at college are much more nicer and humane.

I cannot disclose my medical condition to my boss, cause she uses it against you later on. A colleague quit in March due to her abusive behaviour. My buddy just found a new job so she is outta here in 2 weeks, cause she found this place very stressful and the boss very difficult to work with.

I am, in fact, in search of a new employment, which is why I’ve been silent since mid-June.

The HR dpt emailed me that I just need to submit a note from a doctor saying I cannot work for whatever reason & expected return date to work to someone in HR. Yes, my doctor advised me to be off for 2 weeks, due to the bruising which takes upto 2 weeks.

Given my workplace is very toxic, I plan on announcing this to my boss, most likely by email with a brief message. Whether I tell her in person or via email, she will freak out, especially since my colleague is leaving.

To tell you the truth, I recently got the upper management & HR involved, for the boss’ abusive behaviour towards me. They don’t seem to be doing much, and at the same time, this boss very upset at me.
Therefore, they may very well suspect that I plan on leaving this company.

According to provincial labor relation law, I am entitled to take my sick days off from work due to medical condition. There isn’t much the boss can do about this, other than trying to bully me to work from home with a laptop…which, of course, I will refuse.

I will email her about 1 week prior to surgery, once I make my deposit fee.

Most likely, she will try to fire me for being off from work (for whatever reason, she doesn’t really care), especially when someone just resigned.

I have 2 job interviews scheduled next week; I really hope at least 1 of them offers me a position, so that I can continue to work elsewhere after my surgery.

If she fires me before I go on surgery, which is my main concern right now, then I guess I’ll be unemployed as of August. It’s not sth I want, but I guess I have no choice.

I have been doing a great job, so I am curious to see under what reason she will decide to terminate my employment.

One of my eye looks really bigger than the other one, because of the eyelid retraction. I’m wondering if that’s why I get asked often, “What’s wrong? You look upset.”…although I am not upset (???).
Therefore, I don’t think I can wait longer on this surgery.

My story got a bit side-tracked, sorry about that.
Dealing with my medical condition in a toxic workplace has not been helpful.
I am just hoping to find a new job asap.

Thank you guys, for the support.

Shakira7

[shakira7]

in reply to: Eyelid retraction correction surgery #1182599

Hi everyone,

I found out that if I take up to 10 days off from work due to medical reason, I won’t fall under short-term disability. Thank god. I work in the disability claim dept where we have access to the staff claims; I would hate to know that my colleagues are going through my medical claims.

My only concern is, the surgery will be performed in a private clinic that does cosmetic eye surgery. If anyone googles up this clinic, they will know that it’s a private clinic for cosmetic plastic surgery.

As long as my surgeon writes on a note that this is for a medical reason and not a cosmetic reason, can the HR deny this?

My surgery date will be confirmed in late July, for early August date.

Because my boss is very difficult with employees taking sick days, I only plan on letting her know a few days before my surgery. On top of that, one of my colleague is leaving our team in July for a better job. So we will be under-staffed in August.

Does the boss have the right to ask me to postpone my surgery?
This concerns me a bit.

I won’t tell her what type of surgery I will be having; I’m only going to say it’s for surgery & my doctor tells me to take X amount of days off from work.
She doesn’t know I have GD, and I do not want her to know about this.
Especially if it’s an eye surgery, I can get accused of trying to take sick days for a cosmetic surgery.

I plan on giving the doctor’s note directly to HR.

I really hope that I won’t end up losing my job over this eyelid surgery.

Hi gatorgirly,

Yes, 10 days seem generous for eyelid retraction surgery. However, I this I will go with my doctor’s note, as I don’t want to risk having to go another surgery by returning to work earlier than his note…especially with the stressful working atmosphere at my current job.

I just hope my boss won’t provide me a laptop, asking me to work from home while recovering from this surgery…unless my doctor feels it’s safe to do so.

After this surgery, I am going to look for another job.

Thank you all,

Shakira7

[shakira7]

in reply to: Eyelid retraction correction surgery #1182598

Hi Kimberly, no worries about misunderstanding.

Hi gatorgirly, yes this surgery is covered by my provincial health care – I’m in Canada, so although they aren’t as fast as US, at least I don’t have to pay anything out of my pocket.

I would much prefer not to go on any type of disability either, as it seems like 2 wks is too long. I will ask my doctor if he can shorten it to less than a week, so that I can use my regular sick days.

Yes, I would love to read your surgery and recovery blog. Please feel free to send it to me via PM.

Thank you all,

Shakira7

[shakira7]

in reply to: Graves’ Disease & Soymilk #1182485

Hi Ms. Graves,

Really?
I’m a lactose-intolerant, so I cannot drink regular milk. I’ve been drinking soy milk and so far, I haven’t had any problems. I’m on ATD (5mg/every 6 days), and my thyroid level has been in the normal range since last September.

However, I’ve cut down any food with high sodium and I’ve been avoiding processed food and seaweed.

My diet heavily relies on whole food, and I can feel the difference. I feel good, and I enjoy the food I make.

Be well.

Shakira.

[shakira7]

in reply to: Puffy eyelids since july #1181069

Hi Kimberly,

Quote:

Hello – I absolutely believe that my swelling is Graves’/TED related. I also have eyelid retraction, dry eyes, and light sensitivity. TED has a whole variety of associated symptoms, so maybe the ophthalmologists meant that you weren’t experiencing bulging or double vision, which are the worst of the symptoms? Hopefully, both docs had good knowledge of Graves’ and TED…if not, perhaps a 3rd opinion would be helpful.

One doc at our Chicago conference mentioned the importance of bringing photos to your initial eye consult, *especially* photos from when you were much younger. He actually showed some actual examples of people who didn’t *look* like they had major TED issues, but when he showed photographs of when they were younger, you could see a huge difference. Perhaps this would help?

Well guess what?
I went to see an oculo-plastic surgeon this morning, a 3rd eye specialist that I consulted. I brought him my pictures of before, when my eyelids were not swollen & when I did not have undereye bags.

He diagnosed a very mild TED in my eyes. I am too young to be considered “aging” as the cause of my eyelid swelling. He also noticed a very mild eyelid retraction.

I was told to come back in 3 months, since he would like to see how my eyes progress, although he highly doubts that it will get any worse at this point.

Kimberly, you were SOOO right about this, to bring my pictures & to seek a 3rd specialist. I actually felt so relieved, that finally, I found the right doctor who knows what he is doing and who knows well about TED.

It seems like most opthalmologists are not able to diagnose this problem unless your eyes are protuding.

I also started taking selenium since January, and although I’m not sure if it’s due to that, but it seems like the swelling seems to have slightly reduced.

I thought I was going to get depressed when he told me I have very mild symptoms of TED, but I actually felt relieved to have found the right specialist who is within the city I live…no need to fly over to US.

Thank you so much, Kimberly, for your advice.

All I’m waiting now, is my doctor’s ok signal one day, that I can go ahead and do the blepharoplasty to get rid of the fat accumulated around the eyelid.

[shakira7]

in reply to: Can bloodshot eyes be about TED? #1181982

@gatorgirly, thank you for your advice. I only went to see an optometrist to get his Rx, so that I can possibly see an ocular-plastic surgeon who was referred by another ocular-plastic surgeon who performs orbital decompression & other TED-related surgeries in US.

The problem is that it’s too expensive for me to fly to US for such treatments, especially since this type of condition requires multiple visit meaning each visit, I’ll have to add flight tickets and bed&breakfast/hotel fees. He was nice enough to give me the name of another surgeon who is in Canada.

I plan on asking this surgeon to let me have a complete orbital exam and I will also bring him my picture of before I started noticing puffy upper eyelid. As for the red blood vessel in the conjunctiva, it doesn’t hurt nor get itchy nor feel dry…just a fine line in red that concerns me, especially since I’ve got puffy upper eyelids going on. It’s been bothering me a lot, however, I find it strange that not a single soul around me notices that they look swollen, except for my mom. I guess they didn’t know me when I had my normal look.

Gatorgirly, I wanted to ask you, if you don’t mind; how long after the swollen eyelids did you notice eye protusion? Also, how long has it been since you’ve notice a change in your eyes? I’m just trying to find out if everyone with TED waits through the 18-24 months of active phase or if there are lucky ones who only goes through this for 6 months.

@Raspberry, I’m not sure if you were able to find a specialist near/within your town, if not – I contacted a couple of large clinics in US that specializes in TED (like that big medical centre one in Ann Arbour). You can ask them for a referral of someone closer to your hometown or anywhere where you can drive a reasonable distance.

This issue has been preoccupying my soul for the past 6 months, ever since I’ve noticed a puffy eyelid…and lately, I’ve joined a meditation class in order to not let myself completely absorbed with eye issue.

If Aladdin’s magic lamp and Ginnie appears and ask me what is my no. 1 wish that she can make it come true…I would, for sure, tell her that I really want my normal eyelids back. Nothing else won’t make me happy, but getting my normal eyelids will definitely make me happy.

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