[shakira7]

in reply to: Puffy eyelids since july #1181058

Hi lalcomputers, thanks for your reply. When did you visit your second ocular surgeon? Was it after your thyroidectomy which you had done 6 years ago or was it before? Do you see any progress or changes, if your eye issues have been more than a year?

I will rule out RAI for my option.
If ATD no longer works, then I will consider thyroidectomy.

[shakira7]

in reply to: Puffy eyelids since july #1181057

Hi everyone,

Hope you’ve all been well.
Oct 23 – I went to see another opthalmologist whom my friend has been consulting for over 20 years. He confirmed me that I do not have a TED symptom so far. He asked me to come back in an year to check again. He also knows my current endocrinologist, who works a few blocks from his clinic.
I asked him about my upper eyelid that is puffy as well as the blepharoplasty. He doesn’t know why they are puffy, but he suggests I wait another 3 years from now. (*I was diagnosed with Graves in Sept 2012 and started Tapazole 5mg/day.) He told me he is conservative, and he said using an incision method (blepharoplasty) while my eyelids are inflammated, is not a good idea. It can possibly delay from healing, and of course, I do not want that either. He said that they should cool down eventually.

Oct 25 – Follow-up with my endo. My TSH is back to its normal range, 1.55
He wanted to stop me from Tapazole 5mg/every other day…however, I reminded him how I went back to hyperthyroid when I stopped the Tapazole in April…relapsed in 3 months, in July. So he told me to stay on Tapazole for another 3 months. I suggested, how about I take 5mg every 3rd day from now and see if my TSH remains normal.

My endo is very pro-ATD treatment and he doesn’t want to go with RAI/thyroidectomy unless I show symptoms.

I asked him about my upper eyelids…and he thinks it’s due to this whole thyroid issue. He said they should cool down eventually. He then joked at me, “You should be an endocrinologist, only for Graves Disease patients. But you won’t be able to make a living out of that. Do you why? Cause in my case, I only get Graves Disease patients, average 1 per week.”

Yes, I feel like we can all be endocrinologist. Don’t you think that way, too?

I also feel like, when it comes to Graves Disease, I feel like I am the endocrinologist for myself.
Is it just me or do you guys feel the same way?
I feel like I tell him how I want my thyroid to be treated.

Today, I went to see my G.P. and she noticed, too, that my upper eyelids are puffy. She actually referred me to an internal medicine doctor in the same clinic (FYI, I’m in Canada, so this is all covered by my provincial health care.). She feels I should get a second opinion with another doctor.

Deep down, this eyelid issue upsets me a lot, however, I try to keep up my sense of humour and try to laugh a lot, both at work and with my friends outside of work. I remind myself, that I am not a covergirl, I do not work for a model agency where my physical appearance will give me a paycheck. I also remind myself that I am a very appreciated employee at my full-time job where I work in an office. My coworkers and my boss appreciate my work ethic and my friendly personality. Therefore, my eyelid looking puffy is not going to put my job at a risk, cause I’m not a fashion model.

Since it’s going to be a long wait until my eyes remain stable, I’ve decided to go on a backpack travel next year during my vacation. That will keep me busy planning my itinerary and doing researches on the cities I will visit.

Thanks again everyone, for your support.

Shakira

Graves Disease since Sept 2012
Tapazole 5mg a day from sept 2012 – march 2013, TSH became 6.4
april – june 2013 stopped Tapazole and became hyperthyroid again, TSH 0.02
Tapazole 5mg /every other day from july – october 2013, TSH returned normal
Tapazole 5mg/every 3rd day since last week of october.

[shakira7]

in reply to: ** Words of hope and needing good advice … please ** #1179529

Hi Carito,

How have you been doing since your last post?
Did you decide to stop the Methimazole?

In my case, I started off with 5mg Methimazole on Sept 25 2012 and I stopped it on April 3 2013, when my TSH reached 6.4. I actually called my endo, freaking out at my weight gain, and he told me to stop.
I regret having stopped it, since I had a relapse 3 months later.
My TSH dropped down to 0.02 again, and so my endo put me back on Methimazole 2.5 mg a day (5 mg every other day.)
Had I remained on the Rx and perhaps lowered the dosage to 2.5 instead of stopping in on April 3rd, I would have maintained the normal range, I think.

Since then, my TSH is slowly going upward, however, my Antibodies still need to go down a bit.

Let us know know how you’ve been doing.

Take care,

Shakira7

[shakira7]

in reply to: Puffy eyelids since july #1181053

Hello everyone,

Thanks so much for replying me with your experience.
Yes, I’ve postponed my blepharoplasty until Oct 2014, hoping things would calm down by then. Thanks again for your advice.

Question for PattiMeg and everyone
Would a Methimazole 2.5mg/day risk a rapid heart rate when a patient goes for a surgery under the anesthesia?

@ChristinaDe,
Are you on Synthroid or on Methimazole?
I am still on Methimazole 2.5mg a day (I actually take 5 mgs every other day.). I question if my Graves Disease treatment needs to be re-evaluated, which is why I have an appointment with an internal medicine doctor in November, in addition to a follow-up with my endocrinologist. My endo wants to treat my Graves Disease with ATD as much as possible and possibly avoid putting me on a Synthroid which I will need for the rest of my life.

Given that the RAI treatment puts patients on a higher risk to TED, I am not planning on going with RAI.

@PattiMeg,
Did you have a RAI treatment before your eye issue began?
I’m so sorry to read that you’ll have to go through another eyelid surgery.
I really hope your 2nd surgery will also be the last one for you.
I have an appointment with an opthalmologist on Wednesday to see if there are any potential signs of TED.
My right upper eyelid is puffy as usual and both eyes have under eye bag around.

@Kimberly,
How long have you been on an ATD for? I’m guessing you do not experience any side effects, am I right?

Shakira7

[shakira7]

in reply to: Puffy eyelids since july #1181049

Hi everyone, it’s been exactly 2 weeks since I posted this message, and I’m afraid I don’t see any major change on my puffy eyelid. It tends to look more puffier in the morning, especially when I sleep for long hours. It looks a little better in the evening, however, the puffiness is STILL there.
My parents were in town last week, to visit me. My mom even noticed that, from the side, she sees my eyelids are puffy.
On Monday, the 16th, I went to see an opthalmologist.
He is not a neuro-opthalmologist, but the ratemymd.com has a very good review of him, and some even feels he is the best opthalmlogist in town.
He confirmed me that, although he doesn’t know why my eyelids are puffy, he doesn’t see any signs of Thyroid Eye Disorder.

I have decreased tremendous amount of sodium in my diet, no more marinated cabbage salad in my dinner menu, and no more of buckwheat noodles. I also picked up the wedge from Sears to lift up my head level of my bed.

Yet, my eyelids are still puffy. I don’t see any signs of eye protusion, but I don’t see any improvement of my puffy eyelids either.

@ChristinaDe, I think I am in a similar situation as yours. My right side eyelid is puffy since August, and I really hope this goes away eventually. How are your eyelids?

Depending on how this puffy eyelid evolves, I am looking into blepharoplasty, to have the fatty part of the upper eyelid removed. They are starting to look like frog’s eyelids. Ugh.
I would rather deal with weight issue than to deal with eyelids which I have very little control of.

I have a follow-up with my endocrinologist, however, I got another appt with a different endocrinologist, who has an excellent review on ratemymd.com. It’s in February 2014, however, I think it’s worth seeing someone else and get a second opinion.

I am trying to keep my mind in peace and trying to be positive, thanks to this forum and the support I am getting from the readers.

Shakira7, hoping to get her normal look back.

[shakira7]

in reply to: Puffy eyelids since july #1181047

Hello SueAndHerZoo, ChristinaDe and Shirley,

Thank you all 3 of you for getting back to me.

@SueAndHerZoo – yes, I am really glad that I found this forum and to realize that I am not alone in this. It really upsets me, too, that I have to live with this “illness” for the rest of my life, however, I try reminding myself that I can still work, I can still live a life just like others who do not have thyroid issues.

@ChristinaDe – Thank you for sharing me the info. Tomorrow, I’m going to call an opthalmologist (my friend gave me her dr’s number), and see if I can get an appt – if I’m lucky, I’ll get one in december and if not, it will be probably in jan 2014. If he doesn’t specialize in TED area, then I’ll ask him where I can go and get my eyes checked. I saw a video on YouTube from a patient who has undergone an eye surgery somewhere in Virginia area. Wow, her doctor really did a great job. I wish I have the $$ and the time off from work to fly over there to have her doctor fix my issue.

@Shirley, Christina, and SueAndHerZoo – I realized that it’s not just the fermented cabbages that are high in sodium but the buckwheat noodle also has 38% of sodium / the rice noodles come with 18% sodium…OMG. I have been living off on these noodle and fermented cabbage salads since July on a daily base. On wkends, this would be my lunch and dinner…then I’ve been making roast beef, chicken, ground turkey dishes using a barbecue marinade which has 38% sodium, for my daily lunch menu, since july.
In another words, I’ve been doing a sodium-diet for the past 2 months. Ah, I don’t know what I was thinking, and not checking on sodium level on the nutrition labels. I wanted to save some $$ from grocery bills, which is one of the reason why I’ve been living off on these food.

Anyhow, I completely changed my diet since Saturday – no more marinades and fermented cabbages. No high-sodium food on my plate.
I should be getting the pillow wedge from Sears on Wednesday.
I will give myself a few weeks and see if there’s any change in my eyelids.

@ everyone,
I was so depressed yesterday dealing with this issue, but I reminded myself to not spend my day locked inside my appt and worrying. Staying like that won’t do any good to my soul, so I went to gym to work out and then I went to see a movie. This morning, I went to try a dance class that my friend teaches. I felt so good, and I’m glad I didn’t remain inside my appt all wkend over this puffy eyelid issue. However, I can totally see how TED can really effect one’s mood and mind, since I’m already freaking out with puffy eyelids with no signs of bulging eyes. I hope, with all these medical technology developing, that there will be a solution to treat, not just reduce symptoms of Graves disease and also a way to cure TED before eyes get puffy / before eyes start to bulge. That is my wishful thinking.

Thank you everyone for your support.

Shakira7

[shakira7]

in reply to: Methimazole question #1174812

Hi Amy,

My endo gave me a 5mg prescription from the start. Yes, the Methimazole comes in 5mg pill; if I were you, I’d ask the endo to give you a 5mg prescription. That way, you don’t need to go through splitting the 10mg in half.

Hope this helps!

[shakira7]

in reply to: Chances of developping TED? #1174614

Hi Shirley,

Thank you so much for your reply and sharing your experience.

So you’re an RN? WOW. I admire every RNs, it’s such a demanding job. I wanted to go into nursing, however, I’ve come to conclude that it’s not for everyone.

I scheduled an appt with an eye doctor next week.
My vision has been fine, but i think it would be a good idea to get checked up.

Yes, I agree that this is an awesome website. I’m really really grateful to have found this forum; it’s been a great support for me ever since I was told that I’m hyperthryoid.

Thank you, Shirley.

[shakira7]

in reply to: Does RAI require you to be off from work?? #1174451

Thank you, snelsen! Yes, I’m looking forward to my new job, as I’ve already worked with them before.

[shakira7]

in reply to: From hyper to hypo so quickly? #1174563

Hi Leslie,

Nice to virtually meet you.
I’m a newby to Graves disease since mid-September.
I’m very glad, too, to have found this forum.

Yes, the Methimazole is a very strong drug; my endocrinologist only prescribed me 5mg per day, as a start. He is aware of my fear of becoming overweight.
I’ve always been around 112-114lbs and I’m 5 feet 2.

It’s been exactly a week since I’ve been on 5mgs Methimazole, and I feel the difference.
I don’t feel hungry like I have been for the past several months.
So, I think my metabolism started to slow down.

I started to reduce my food intake as a result, and I am working with a personal trainer, a dietician, and a naturopath along with my endocrinologist.

Are you also experiencing weight gain as a result of becoming hypo?

Ah…I wish the treatment only fixes the TSH / free T4 levels and leave the metabolism the way it is, meaning let it stay high, so that I can continue to eat whatever I want.

Take care, Leslie.

Shakira7

[shakira7]

in reply to: Does RAI require you to be off from work?? #1174449

Thank you, everyone, for sharing me your RAI experience.

My endo told me he’d like to start with ATD first, so I’m on 5mg Tapazole since last Thursday.
If this doesn’t work out successfully, then he said he’d send me to get the RAI treatment.

I was concerned about all the treatment options and its consequences / side-effects, mainly because I’m starting a new job in 2 weeks. Since the job itself is a great opportunity for me, I really didn’t want anything to be an obstacle, like my Graves disease treatment.

So far so good. Given it’s only 5 mg, I have no side-effects, and no more palpitation. I’m also taking some natural herbal medicine simultaneously; buggleweed and some other plants that are proven to be helpful for hyperthyroid.

I’ll see how my next blood test, in 5 weeks turns out.

Shakira7

[shakira7]

in reply to: Blood in phlegm #1174458

Thank you, Kimberly and Carito, for your suggestion; today, I rushed to a walk-in clinic. The doctor told me she’s not worried about this, but if I am still concerned, then I can see an ENT.

@Carito, thank you for your concern; i only started the Methamizole this morning, so I don’t think it comes from the medication.
He only prescribed me 5mg per day for the next 6 weeks.

[shakira7]

in reply to: gluten-free diet for weight gain #1174416

Hi WWW12,

Nice to virtually meet you, and thank you for sharing me your experience.
Like I told Carito71, it makes a great difference to me to have found this forum where I can exchange message with others who’s going through the same thing.

I am meeting with my endocrinologist tomorrow afternoon.
It seems like it’s been a long wait, since I saw him 2 weeks ago, for the 1st consultation.

I’ll see how things unfold tomorrow.

Take care, WWW12.

[shakira7]

in reply to: gluten-free diet for weight gain #1174417

Thank you, Carito71. These are great information.
I am in the process of giving away anything that has gluten; pasta, flour, oats…etc…to my friends.
I live in a big city, so I’m sure I’ll be able to find gluten-free food.

Take care,

Shakira 7

P.S. – This time, I’ll just press the Submit button, only once.

[shakira7]

in reply to: Elevated enzyme in blood #1174442

OMG, I think my computer went a little crazy :o, when I hit the button “Submit”. Sorry for the repeated same msgs.

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