[shakira7]

in reply to: Decision to make btw ATD and TT #1181692

Hi Kimberly and everyone else reading my message,

Thanks for the info.

As for Short Term Disability, I checked on the intranet today. It only qualifies if I plan on being off from work for more than 2 weeks. Upto 2 weeks, yes, I have to use my personal days or vacation days, otherwise, it will be a leave without pay.

I’m not sure if anyone else had this kind of an experience, but the clinic where my new internist doctor works…the customer service is quite bad. BTW, I live in Canada, so we are talking about public health service. I wish I had lots of money to go to a private clinic.

Here’s what I’m putting up with at this clinic:
1. getting an appt with this internist that I liked, is a nightmare. for some reason, this doctor provides her schedule 1 month in advance. I’ve the clinic to call me as soon as they get her schedule, of course, they never do. So I end up calling them and then there are only few spots left or all gone for the month.

2. they do not take messages from patients and pass it on to the doctor for a reply. this is problematic – after the surgery, if I have problems with dosage, if I experience side-effects, then I won’t be able to talk to the doctor over the phone at all. they tell me I will have to call the clinic and get an appointment, which means I will have to deal with problem #1.

3. This doctor runs behind her schedule, so each time I do a follow-up, I will lose at least 0.5 day from work.

I really liked the doctor, but is this worth the trouble?
I think this is going to be a nightmare, each time I try to see this doctor.
I think I will end up searching for a 3rd endo.

My current endo, at least, returns my phones calls, if I have any concerns.

Good news is, I already booked an appt with a 3rd endo at a hospital, in feb.
He has a good review, according to ratemymd.com
He runds behind the schedule, but he is reachable, should I need to talk to him regarding side-effects…etc.

Shakira7

[shakira7]

in reply to: Graves Disease and thyroid cancer #1181717

No, I have not yet met my ENT surgeon. I will see him in early Jan 2014.
God, I hope he doesn’t tell me sth like “I will pass your file to my coworker who does less emergency cases, cause I do the thyroid cancer patients.”

I believe there are specialists who deal with vocal cord disorder or sth like that. If you can find one in your area, it might be worth consulting them.

Thanks for sharing your positive perspective on your Graves / thyroid cancer journey. I gotta be more positive about this, too.

Do you know if people who’s gone through TTX can travel overseas? I’m a little ticked off right now, cause I just finished my travel itinerary to SouthEast Asia that I was planning on doing next fall 2014, for 3 wks.
Do you see yourself travelling where the timezone changes, after TTX?

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181690

Hi Shirley,

Oh, you were a nurse!! Wow!! That’s a great profession!
I once thought of becoming a nurse, but then I chickened out in the end.

Anyhow, I asked about the antibodies, since I’ve been reading online, that if the antibodies are back to the normal range, then there is a higher chance to remain in a long-term remission after I quit ATD. My antibodies was still high 2.6 when my endo told me I can stop ATD.

Ever since I met with the internist doctor, I feel so relieved.

Thank you, Shirley, for your wonderful support!!

Shakira7

[shakira7]

in reply to: Graves Disease and thyroid cancer #1181715

Hi trlrunner,

I’m so sorry you had to go through both, Graves Disease and a thyroid cancer. In my case, my doctor’s nurse faxed the ENT surgeon, her Rx to see him for thyroidectomy. The ENT surgeon has an excellent reputation for Thyroid Cancer Surgery. Someone didn’t read the Rx, so the secretary called me “Dr xxx does not treat Graves Disease. You would need to see an endocrinologist.”
So I had to explain my Graves journey to her, to get her to give me an appt with the surgeon, not with an endo.

I’m really sorry to hear that your surgery paralyzed your vocal cord.
I wish you a prompt recovery…

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181688

Quote:

Shakira, are you referring to your place of employment? Sounds that way.

I had plenty of “sick leave” accumulated, so I used that, for one episode of illness. Another time, I got MLOP, which is our term, I think for Medical Leave Without Pay (keeping all benefits intact.) Then it was getting the form from HR, having the doc fill it out, handing it to my supervisor and HR,and it was granted.

Is this what is happening?

I have a friend, an RN, who just had a kidney transplant. She has an approved medical leave, which can be extended if determined by the docs. But is not the kind of disability where she has a placard to hang on her rear view mirror.

So I need to be straightened out!

Hi Shirley,

Yes, I am talking about my place of employment.
It sounds like you work for a unionized place, am I right? In that case, you probably have a far better working condition than mine.

Yes, I have Short-Term Disability, where I am eligible for up to 4 weeks to get a full salary, but of course, I would need to send HR all the relevant documents and they need to be approved prior to going on leave. I don’t want to use all 4 weeks, but 2 weeks for me would be good enough.

Given the TTX is maximum 1 night at the hospital, I don’t want to be off for more than 2 weeks.

The surgeon is also well-known for parathyroid surgery. I hope he can leave at least 1 of the 4 parathyroid glad, and just get rid of the thyroid gland that’s been making my life upside-down.

BTW, my doctor says that I have a peri-orbital edema, which usually happens to someone who’s hypo, not hyper. I couldn’t find a cause when I did an online research.

Also, my TSH Antibody receptor has gone lower since I started the ATD treatment, however, it’s still way above normal range – 0 – 0.3 U/L is the normal range and mine is still at 2.1.

I’ve noticed in my labs, that the TSH Anti receptor sometimes go up high despite the TSH getting higher. Ex – in Jan, my TSH was in normal range, 1.75 but my TSH Anti bodies went 3.3. When I was initially diagnosed with TSH < 0.01, TSH Anti bodies was 2.5. Is it Antibodies that needs to be fixed first or is it the TSH?
Most doctors only check TSH level and T3 T4 for labs, even my internist.
My T3 and T4 went back to normal as soon as I started my ATD.

Will TTX decrease antibodies?

I am so glad that I am dealing with my Graves in the internet era, so at least, I can connect with others in similar shoes. Part of myself is so fed up with this disease, that I fantasize of just packing and travel around the world, forget all these doctors’ visits.

Thanks for your support,

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181686

Hi Sue and Shirley,

I am eligible for Short-Term Disability.
Yes, I would like to use at least a sick day or personal day for the days I will be in the hospital. I would need minimum 1 week off from work, ideally 2 weeks is where I am looking at.
I will wait until the surgery date gets fixed from the hospital, then I will contact the hr to see how to go about.

@Sue, prior to surgery, did you have a lot of hospital & doctor visits?
I just want to have an idea as to how much time I have to be away from work.

Thanks!

Shakira7

[shakira7]

in reply to: Muscle Cramps #1181706

Hi SallyB62, I’m so sorry you are going through the pre-ttx calf cramps. I am still on ATD, so I wouldn’t be able to give you the answers you need. However, I would think that this is related to your synthroid. Have you done any labs recently? Also, I know that synthroid is just a commercial brand. There are other brands for levothyroxine, so it wouldn’t hurt to address this to your doctor.

I am waiting to see a surgeon in early Jan to go for a TTX, hopefully, and in the meantime, I’ve been doing a lot of researches on the consequences of this surgery and having to live without this organ for the rest of my life.

I hope this problem goes away soon.

Take care!

Shakira7

[shakira7]

in reply to: Decision to make btw ATD and TT #1181682

Hi SueAndHerZoo,

Thanks so much for responding to my message!

It seems like everyone who’s gone through the TTX sounds relieved to have gotten rid of this tiny organ in our bodies that’s been making our lives miserable. That is where I am heading at, since my remission lasted only 2.5 months, from April ’til June. My endo didn’t even check my TSI level before making me stop Tapazole. It was still way above the normal range, so no wonder I became hyperthyroid as soon as I was off on med.
I don’t want to go through another remission and then freak out when it relapses. In fact, I am in the transition to let him go and have this internist doctor look after my hyperthyroid treatment.

My current endo is an old man, and although he is very nice as a person, I’m not happy that he tries to minimize my concerns, like swelling eye lids, decreasing WBC count, as if he’s seen too many patients complaining about the same issue. Whereas, my internist doctor is a lot younger, and she seems very very knowledgeable and she genuinely listens to my concerns. What a difference!

I emailed the ENT surgeon, all of my blood test results since the Graves journey started in September. He is well-known for thyroidectomy for thyroid cancer patients; my clinic referred me to him. Friday, I got a call from his secretary, saying he doesn’t take Graves Disease patients, and that he will refer me to an endocrinologist. So I told the secretary the following:
– My internist doctor suggested that I get a thyroidectomy and recommended this doctor to do the surgery.
– I already have an endo, who stopped me on Tapazole in April, then I had a relapse. My GP suggested I get a 2nd opinion, and she recommended me to see this internist.

Then this secretary goes, “Ooh, I see. Ok, then I’ll give you the appt.”
So I’m guessing someone did not properly read my internist’s Rx (?).
Thank god she gave me an appt.

All is good now, so I just have to wait until first week of January to see him.

BTW, I have a question.
Were you able to go on a Short-Term Disability leave from work when you got your surgery done? Maybe I will create a separate topic just for this question.

[shakira7]

in reply to: Is ATD a temporary method to treat Graves? #1181668

hello again everyone,

I am back after a rock-n-roll week dealing with clinic secretaries not returning my messages, hospital that forgot to do my thyroid level test, doctors running behind the schedule with appointments…etc.

I saw an internist (internal medicine) today. To my surprise, she seemed very knowledgeable in Graves Disease, perhaps even more than my current endocrinologist.

Unfortunately, the hospital omitted thyroid testing, but did the rest of the blood tests…for a thyroid patient. I saw the doctor anyhow.

As for my swollen eyelid, she is sending me to do a cortisol level test. If the result rules out cortisol, then she will conclude that it is due to thyroid.

My white blood cells have decreased, probably as a result of Methimazole. Right now, it’s 4.0 and I am below the normal range – leukopenia.

She suggested thyroidectomie, as in my case, RAI can put me in a higher risk for TED.

@Kimberly, to answer your questions –
Yes, I already have swollen eyelids since September, and who knows how this is going to unfold.
No, I don’t plan on having children. I love kids as long as they have their own parents, ha ha.

In the meantime, my endocrinologist called me to reassure me that 4.0 white blood cells are not dangerous, so that I continue my Tapazole. His blood test request has always been for TSH, T3, T4, and Antibodies. This time, he told me he will send me another blood test request for white/red blood cells count. He is very very nice as a doctor, but I feel like I am telling him how to do his job.

Part of myself wants to give myself a chance for another remission, and see how long it will last.

However, if I can get an excellent ENT surgeon, I think it may end up being the best choice for me. She gave me the name of the surgeon, and I am waiting to get an appointment with him. I went online and researched his profile; he seems to have an excellent reputation among thyroid cancer patients and I hope he takes hyperthyroid patients as well.

This doctor mentioned several types of Synthroid, and depending on how my body reacts, we can change the brands should it be necessary.

In the end, it was worth waiting for this doctor for almost 1H15.

[shakira7]

in reply to: Is ATD a temporary method to treat Graves? #1181665

Hi Shirley!
Thank you so much for all these helpful information.
Wow, you know so much about the Graves Disease. I guess we all become an expert with our own medical condition.

Ok, so I see why we all start with ATD.

Deep down, I have a wishful thinking that I can get over this Graves Disease just with ATD, but I’d say that would be almost a ‘miracle’, if I ever manage to go into remission.

I will try to get my “internal medicine doctor” to agree on my plan on getting the thyroidectomie. It seems like everyone who’s gone through thyroidectomie is very happy with their decision. I guess, after going through the Graves up & down with ATD over a long period of time, they must feel relieved to have gotten rid of their thyroid gland.

Thank you again, Shirley.

Shakira

[shakira7]

in reply to: Puffy eyelids since july #1181068

Thanks, Kimberly, for being so patient with my questions and getting back to me on them. I’ve been obsessively taking pictures of my profiles since september this year, and so far, it’s the eyelids that have changed.
It will be a long 2 years for me, to see the TED active phase to be over.

Shakira7

[shakira7]

in reply to: How Did Everyone know there was something Critically wrong with their health? #1181121

Hello everyone,

First of all, thank you, AllieKatz, for giving us a chance to share our experience with Graves.

Here is how mine started, before I was officially diagnosed with Graves in Sept 2012. I have always been a healthy fitness-oriented individual who eats healthy, doesn’t smoke, doesn’t drink (except on those special occasions), etc.

– For several years before Sept 2012, I’d experienced a palpitation; I ignored this, thinking it’s because I drink coffee and I eat fast or because I exercised a lot.
– For a couple of years, I noticed that I would eat like a horse but never gain a single pound, which, of course, didn’t bother me; it did the opposite, to make me feel confident that I can eat whatever I want and never have to worry about weight gain.
– Since summer 2012, my 6 days-monthly period decreased to 3 days period, almost as if I were going into pre-menopause….at age 40, that’s a bit early I thought. I went to see a walk-in clinic, and they dismissed my case, saying not to worry, it happens.
– Since August 2012, I noticed my hair would fall out one by one, to the point where it bothered me.
– Since August 2012, I started to feel extremely tired all the time; I come home from work and I’d fall asleep for 3 hours. I have a very low-stress job, so job was not an issue. On weekends, I’d just sleep all day, and I had very little energy to go to gym.

Finally, towards end of August, I went to see my doctor, and I insisted that I get a blood test done. A week later, she called me with the result; she explained to me that I am hyperthyroid, which I had no clue what it was about. She recommended that I see an endocrinologist within a month, since my TSH is below 0.01.

Her secretary booked an appointment for me, to see an endo, the following week. When he met me, he immediately was under the impression that I had Graves Disease. CT scan after swallowing a radio-active iodine, confirmed this, and then he put me on Tapazole 5 mg a day since end of Sept 2012.

I am still on Tapazole, 5mg/3 days.

This site has been a wonderful support for me, with plenty of good resources.

Special thanks to everyone who has replied to my threads.

I am hoping to figure a way out to go into a remission with Tapazole, but knowing how impatient I am, I will most likely get my endo to listen to my decision and go for thyroidectomie.

I am also looking forward to the next 2 years to fly away quickly, so that I will be done with the TED active stage. So far, my eyelids are puffy with no other symptoms, but this, too, I’m having a hard time dealing with it.

Shakira7

[shakira7]

in reply to: Puffy eyelids since july #1181066

Hi Kimberly,

Both opthalmologists seemed quite knowledgable in TED symptoms, however, I should have brought photos of myself from last year or years before.
Yes, the eye area looks different – swollen eyelids change the entire appearance.

In your case, was swollen eyelid the first symptom of TED, and then the rest followed afterwards? Or did they all happen at around similar time?

So far, it’s only the eyelids that are swollen as well as a bit of under eye bags. I do not have other symptoms you mentioned, but this concerns me a lot, as you can see.

5+ years? Wow, I admire your patience, cause I would have lost it by now.

I watched a YouTube video yesterday – the seminar/conference by Dr Catherine Hwang, Thyroid Eye Disease
http://www.youtube.com/watch?v=OjFz0hIamU8

She thoroughly explained the entire phase of Thyroid Eye Disease, so now I’ll just have to sit and watch how my eyelids evolve.

I realized that the plastic surgery that Dr. Hwang mentioned in the seminar, is not the blepharoplasty. She refers to blepharoplasty, for fixing the eyelid retraction. At the very last phase, some patients go for Botox around the eyes.

Actually, I’m an Asian descendant, so I don’t have the double eyelid like others. Therefore, I won’t be able to tell if I ever get an eyelid retraction.

In any case, what I meant by blepharoplasty, is not the double eyelid surgery that is popular in Asia, no, but rather the normal blepharoplasty where the surgeon can remove the excessive fat that were never there in the past. – and get my original look back one day. Hopefully in Fall 2015, that would be my 3 year anniversary of Graves Disease.

Thanks, Kimberly!

[shakira7]

in reply to: Puffy eyelids since july #1181064

Hi Kimberly, thanks for getting back to me immediately.
It sounds like you and I are in a similar Graves Disease situation; I’m also on Methimazole without any side-effects. 2 opthalmologists confirmed me that I do not have any signs of TED.
So, if I understood everything well, you also have puffy eyelids, but you do not have any TED happening to you, right?

I admire your patience, as I’m honestly becoming depressed.
Everyday I wake up and notice my puffy upper eyelid not getting any better. I look at myself of last year or before, and my healthy looking face is gone now.
Thank god I do not have a husband or a boyfriend, cause I would told my them by now that I’m going solo due to my medical condition.
I have started withdrawing myself from social life, as I don’t feel good about this whole puffy eyelid issue; it’s really making me unhappy.

Seeking a counselling will not be the solution; the solution to this is getting my original look back either with blepharoplasty once things have become stable, or the eyelid goes back to its original place on its own (if it were to happen).

I’m glad I do not work with public, and I work most of the time autonomously alone in my corner. This helps, as working with public would have been the worst job for me with what’s going on now.

I’m looking into Fall 2015 – when I can possibly go for an eyelid surgery.
That’s 2 years from now, and it will be 3 years of living with Graves Disease.
If I had a lot of money, I would have gone to get one right now and then again in 2-3 years from now.

I am now understanding how plastic surgery resolves the psychological aspects of people having issues with appearances.

Thanks again, Kimberly.

Shakira7 depressed with her horrible eyelids.

[shakira7]

in reply to: Puffy eyelids since july #1181062

@Kimberly, how long have you been experiencing eye swelling? You said you’ve been on Methimazole for the past 6 years, so I thought you’ve been doing well without any side effects.
Did you notice any change or any improvement on your eyes during those 6 years? Or did it get worse?
I thought the puffy eye lids were supposed to go away within maximum 3 years.

Thanks for your compliment – it seems like, for Graves Disease, it’s the patient who need to take control of her/his own treatment, since no one has the same prognosis. Everyone has a different path. Also, there’s only 3 ways to treat this symptom.

I’ve been on this medication for about less than a year – and on a very small dosage. Yet, my eyelids have swollen.
I’ve been reading on this forum, that the puffy eyelids are supposed to cool down anytime btw 6 months – 3 years / my opthalmologist said 3-4 years.

I wonder if it’s the side-effect of Methimazole that my eyelids are swollen, mainly the upper right eyelid.
I have a new hobby now – taking profile shot of my eyes every night, like if I have nothing else to do after work.

My plan is to wait until 2016, and if nothing changes, then maybe blepharoplasty would be sth to look into.

I’ve been on a lower dosage of Methimazole since Oct 25. – 5 mgs / 3 days. I will get my blood test done this Friday, and see how my TSH is doing.

---

@Shugie53, I’m so sorry to read about your case and your eyes.
I will ask what my family doctor thinks about prednisolone 1% eyedrops, and maybe I’ll go ahead and try them.

Thanks both of you,

Shakira 7

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.

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