[shakira7]

#1060271

Hello everyone,

I am in front of 2 options – continue my treatment with ATD or go for a TT. Due to my swollen eyelid, RAI is not an option for me.

What should I expect if I decide to opt for TT?
It’s my understanding that everyone experiences different side effects and reacts differently to medications, but I thought I’d still ask.

I went to see an internal medicine doctor last week, to get a 2nd opinion about my Graves Disease treatment.
BTW, I was surprised to learn that an internal medicine doctor treats hyperthyroid patients. Although she was running behind the schedule, it was worth the wait – she was very knowledgeable, and moreover, she listened to my concerns very seriously.
My current endocrinologist prefers to keep me on ATD and then stop once my TSH is stabilized. He already tried this in April, and as soon as I was off Tapazole, within 3 months, I became hyper with TSH 0.01 (from 6.4 in April to 0.01 in June.)
He never checked my WBC count, and I only learned that my WBC is running low below normal range, at the general check-up test done by my family doctor. This is why I am looking for another specialist who can possibly replace my current endo, cause I’m concerned that he is not enthusiastic.

In any case, this new internal medicine doctor suggested that I go for thyroidectomy. I have been thinking about this as well, since it seems like the ATD works well when I’m taking them; but as soon as I stop, I become hyperthyroid. She doesn’t suggest RAI, since my eyelids are swollen, and she is aware about the risk of developing TED. She also mentioned that there are several types of Levothyroxine, so that I am not obliged to stay with Synthroid, if I were to choose TT.

She sent her Rx to an ENT surgeon who has an excellent reputation in the city where I live. I got an appointment with him in early January. He does mostly thyroid cancer patients, so I am not sure how soon I will be able to get the surgery appointment next year. I hope he will agree to remove my thyroid, and not try to convince me not to do one.

Please feel free to share your experiences with me, if you have a moment.

I have to admit that, as soon as I walked out of my appt with the internal medicine doctor, I felt a relief – finally, there is a doctor who listens to me and who is open to other options. However, once I got the appt scheduled with the ENT surgeon, I felt a bit scared. I have never spent a night in a hospital in my entire life, and just the thought of getting the thyroid surgery is a bit daunting.

Thanks everyone!

[SueAndHerZoo]

#1181681

Hi there.
I was diagnosed with Graves about 7 years ago. I was on ATD’s for most of that time except for an 18 month remission. Once I came out of remission and had to go back on ATD’s it seemed I had to keep increasing my dose to keep up with the thyroid. All the medication changes and the “rollercoaster” that goes along with the fluctuating hormones were making me an emotional wreck so I talked to my endo about a permanent solution: surgery. he suggested RAI but I didn’t like that idea since that requires a fairly long time to get to a consistent level and I wanted stability ASAP. He referred me to a surgeon, I had a consult, and she agreed I was the perfect candidate for a TT.

I had it July 16th and have not regretted it once. I have posts on this forum journaling all the details of my surgery and how I’ve been feeling the four months since then but if you have any specific questions, feel free to ask.

Sue

[shakira7]

#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.

[SueAndHerZoo]

#1181683

Yes, I was on short term disability after my surgery. I had told my employer I would be out between 2-3 weeks, and I ended up taking four weeks and continued to receive a paycheck, uninterrupted. The week I went back I only went in for four hours a day. I know lots of people go back sooner but this time frame was perfect for me.

Good luck with your appointment in January!
Sue

[snelsen]

#1181684

Hi, so glad you went to the internist. So you know, an endocrinologist is an internist who has decided to take an extra two of training in endocrinology.
The same thing for endocrinology, allergy and some more I am not thinking of.
Here’s a brief description of the training.
http://medicine.unm.edu/endocrinology/fellowship/index.html

As you have experienced, sometimes we have to find the right “fit” for our docs, and doing active listening and “hearing” as well as knowledge. Internal medicine doc definitely study endocrinology, and rotate through that service several times during their internal med residency. I do know that we see endo a lot on the forum. I also know a lot of internists, and also family med doc can manage Graves’ later on, when all this treatment stuff has settled down.

Super glad you went to her. I am sure that the sec’y did not read the report correctly. And her fund of knowledge may have been none at all. She works in a surgeon’s office! Glad you provided more information. I understand the dilemma, and surgeons, and most specialties, want the paperwork first to be sure the appointment is appropriate for them and for you.

A general surgeon, who “does” TT’s, is very common also. I had a general surgeon.

Here’s a suggestion. Call the office and ask them to call you if they have a new patient appointment cancellation. (First appointments are scheduled for a much time than following appts. Believe me, with the holidays coming, three sets of them, I am very impressed they had a slot for you in January!
Time will go fast.

Re short term disability. It is my personal opinion that you have no chance of getting it. I went back to work full time 2 weeks after the surgery. It was a dumb thing to do, and I should have gone part time for a few days. But you could probably take a MOL (medical leave of absence) if you don’t have sick time accrued. Each thing requires paperwork from the doctors office, and their opinion. In my case, I had a baby, and it was great to have other people take him, and generally have people bring some meals, do the laundry, that first week.

As Alexis said, she chronicled her TT. And someone recently just had one, and has written extensively about it, before and after. I think you will find both VERY reassuring. I think I recall who it was, but after i post this , I will write back with her name.
Glad progress is being made!
Shirley

[SueAndHerZoo]

#1181685

snelsen wrote:

Re short term disability. It is my personal opinion that you have no chance of getting it. I went back to work full time 2 weeks after the surgery. It was a dumb thing to do, and I should have gone part time for a few days. But you could probably take a MOL (medical leave of absence) if you don’t have sick time accrued. Each thing requires paperwork from the doctors office, and their opinion. In my case, I had a baby, and it was great to have other people take him, and generally have people bring some meals, do the laundry, that first week.
Shirley

I’m curious, Shirley, why do you think she won’t be able to get short term disability while she recuperates from surgery? I had planned on using vacation time to recover but my HR Director said “are you nuts???? Don’t waste your vacation time, go on STD!” So he called his assistant, she got all the paperwork going, I had my surgeon fill out a form, and it was a done deal. When I went for my follow-up visit with my surgeon three weeks after surgery she asked if I wanted to go back to work or if I wanted to stay home a little longer so I said “one more week at home, and then back half days for a week”. She sent the “return to work” order to my office and the checks kept coming.

Did you have a different experience?
Sue

[shakira7]

#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

[snelsen]

#1181687

I suspect this is a case of semantics. I was referring to the ADA Federal act, the Americans with Disability Act. The same disability that veterans apply for, and permanently disabled people.

I am guessing, but do not know, that short term disability is referred to as a medical leave where I worked.

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!

From my personal experience with a TT, I wish I had taken three weeks off, gone back part time for part of the next time, before full time.
I got a lot more tired than I expected to be, a lot longer than I expected to have fatigue.

Preop, I had one pre op visit, short, before the surgery with the surgeon, and a brief physical was required, but I had had so many brief physical, there was one within 30 days which they used.
Shirley

[shakira7]

#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

[snelsen]

#1181689

It’s the TSH that needs to be corrected to safe level.
TSI and TraB tests are done to confirm a diagnosis of Graves’-or maybe Hashimoto’s, if there is any doubt. Some insurance companies won’t pay for them, some will. TSI/TRaB tests are not used for treatment.
Kimberly can answer this subject with more knowledge than I have.

Re parathyroids. The goal is to leave all four parathyroid glands. The surgeon will be very careful to do that.

Yep, there is a union at the hospital where I worked. I have retired now. The union was a union for nurses.

You have come a long way in getting control of all of this, and one day, it will not loom as the elephant in the room that rules every waking moment, and you will feel much, much better.
Shirley

[shakira7]

#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

[Kimberly]

#1181691

Hello – In terms of preparing for surgery, they key is to make sure that thyroid hormone levels are in the “normal” range if at all possible. There are other options (beta blockers and potassium iodide) that can be used if it’s just not possible to get levels down — but the preference is to get thyroid hormone levels stabilized prior to surgery.

The one study that I’ve seen that looked at antibodies, anti-thyroid drugs and surgery had similar profiles in terms of getting the antibodies to decline. I’ve heard some speculation that thyroidectomy might bring down antibodies more quickly, but have not seen any research to confirm this.

It sounds like short-term disability is all over the map, so you would need to inquire at your individual place of employment. I’ve never taken this leave, but I do recall from prior jobs that my employer required you to use up all vacation/sick time before going on STD. It sounds like Sue’s experience was different, though.

Take care!

[shakira7]

#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

[Kimberly]

#1181693

Unfortunately, every country in the developed world has some type of issue with their healthcare delivery system. You’ve no doubt heard we are having a couple of problems here in the U.S..

Obviously, this is a decision that you will need to make for yourself, but if you are planning to stay on ATDs longer-term, you will want a long-term relationship with an endocrinologist.

Hopefully, others will chime in here, but many patients who go through thyroidectomy are able to go back to their general practitioner for routine testing, once they go through surgery and the various adjustments needed to find the “sweet spot” dose of replacement hormone.

[shakira7]

#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

[Author]

Posts