[Suze]

#1060777

Hi all. This is my first post. I have had a hyperthyroid (Graves Disease) for about 10 years, and it recently spiked. I have TED which onset 2 years ago. . I have to make a reasonably quick decision whether to have surgery in October in order to have the physician of my choice. I have these questions:

For those who have had thyroidectomies;

-Besides needing to be on Synthroid for the rest of your life, what are the downsides? -Does everyone have weight gain?
-Someone once told me that on Synthroid, she gets a burst of energy when she takes the pill but then gets sluggish later in the day. Is this the case?
-If you have TED, did it help? I know these aren’t necessarily connected
-Any bone density issues as a result?
-If you are above 50, what are the cosmetic implications (i.e., does your neck look loose/sag or better?)
-Importantly, are you glad you did it?

For those who opted to stay on medication:
-Can a reasonably sized goiter reduce over time on Methimazole?
-My Methimazole doses go up and down. Can things still settle down over time (this has been a somewhat turbulent time, however, life can be that way)?
-Does the Methimazole become less effective over time?

Anything else I should be aware of long term? Thanks so much if you respond!!

Suze

[Liz1967]

#1184704

I had total thyroidectomy after six months of TED and methimazole. So glad I did. Taking Synthroid every morning is no big deal, most of us take something every day, like vitamins, calcium, birth cntrol, allergy meds, etc. Only downside for me is waiting an hour before I can have morning coffee! I feel exactly like I did before Graves diagnosis. I believe it helped TED, as it burned out less than 8 months after TT and I could begin reconstructive eye surgeries shortly thereafter. Latest studies do show a connection between TT and TED burnout. No bone density issues so far. I am 67, can barely see my scar, no sag. I am three years post diagnosis, I am done with the necessary eye surgeries, I get labs once a year, my TSH stays between 1 and 2, and my levothyroxine dose remains at 88 micrograms. I had the thyroidectomy on a Friday morning about 11, was back home by 4, was at the mall the following Monday for lunch with friends. I have had 5 eye surgeries and the thyroidectomy was easier than any of those surgeries. Be sure you choose a surgeon who does a lot of them. You want all of the thyroid tissue gone, so someone who operates for thyroid cancer is good. Absolutely no regrets.

[scanders]

#1184705

I stayed on methimazole for over 2 1/2 years, and have been off since May of this year. My endo is reluctant to declare remission just yet since my TSH is still very low, even thought the Free Ts are in range, and she hasn’t rechecked Trab yet. I seem to be pretty sensitive to MMI, so small adjustments seemed to have a big impact for me, but we were finally able to gradually taper down. Everyone responds individually to medications, and we all know that with Graves we can’t rely on lab values corresponding with severity of symptoms.

I still have a small goiter that my endo can palpate, but you can’t look at me anymore and see that there is swelling on my neck. You could see it when I was first diagnosed, if you knew what to look for. (Wish I’d noticed that– might have sought help sooner.)

My TED was severe and I’ve had OD and muscle surgery (so far). Honestly, if I’d read the studies Liz referred to at that time, I might have opted for TT. No doubt, TED has been the worst part of this journey for me. I don’t think I’d rule out TT if my symptoms flare again, either, but then, I know MMI works for me at this time, and I haven’t had adverse effects from it.

Hope that helps.

[Suze]

#1184706

Thank you Liz and scanders. I appreciate your responses!! If anyone else has their own experiences and can share, I would deeply appreciate it.

[emmtee]

#1184707

I was on methimazole for four years before my TT last November, so I can answer your questions about both. I had wanted a TT when I was first diagnosed, but it didn’t work out. I finally had it done because I’d developed a very large nodule that was suspicious for cancer, but ultimately found to be benign. In any case, it was pressing on my trachea, as well as growing down past my collar bone, so it needed to be removed. The benign diagnosis meant that I didn’t need to have RAI as well.

Thyroidectomy:

I guess you could consider the scar a downside, but it’s not that noticeable any more, and I consider mine to be a reminder of how lucky I am to have been through what I have and come out the other side. I did gain 10 lbs in the early months after my surgery, but my weight stabilized and I’m confident I can lose it.

Circadian rhythms cause a lot of people to feel energetic in the morning and sluggish in the afternoon. I don’t think this would be caused by Synthroid. T4 (synthetic or natural) lasts a long time in your system. (The half-life is about a week). When my endo reduced my dose this summer, she actually gave me the option of going down to the next dose or just staying on the same dose and skipping one day a week. Either way, it was the same total micrograms per week and she said it wouldn’t matter. I opted to skip a day, and I don’t feel any different on my skip day than I do on the others.

I haven’t had my bone density checked in 10 or 15 years, but it was very good back then. I get a comprehensive metabolic panel done pretty regularly due to kidney issues, and my calcium has always been good. None of my parathyroid glands were damaged in my surgery. I do take a D3 supplement because my Vitamin D levels have been low for years.

I’m 52, and other than my scar, I think my neck looks better than before the surgery because my goiter made it look thick. Of course, my skin doesn’t have the same elasticity that it did 25 years ago, but it’s definitely not sagging where my thyroid used to be. My scar is actually about 1/8″ shorter than it was originally, so I’m pleased with how the skin has tightened up.

I’m very glad I had my thyroidectomy. If I had it to do over again, I’d do it sooner, but only if I could have it done by the same surgeon. That wasn’t actually an option, as she was only hired by the hospital last summer. The surgeon I consulted with when I was first diagnosed wouldn’t do a TT on a Graves’ patient. (That’s one reason I didn’t have my TT back then).

Medication:

When I was first diagnosed with Graves’, I had a goiter on my right side. I did notice after some time (a year maybe?) on methimazole that it got a little smaller, but it never went away. It had never been that obvious to begin with, and only my endo and I noticed the change.

My first year on methimazole was like a roller coaster. It took over a year for me to get stable. (That’s the other reason I didn’t have my TT earlier). It took three tries (two increases) to find the right dose (which was pretty high – 60 mg) and then I only had one good blood test before something shifted and I suddenly became hypothyroid at that dose. My endo lowered my dose twice, but my TSH was actually getting higher. Finally I went off the methimazole completely for about 6 weeks. At that point I was hyper again and all my symptoms came back. I started back on the methimazole at a much lower dose, and after lowering it one more time, I was pretty stable for the next few years. We actually lowered it again a couple of months before my TT.

I don’t think methimazole becomes less effective over time. Your body does go through changes, though. In the process of making your thyroid overwork, Graves’ Disease antibodies do some damage to it, so you may need less methimazole as the years go on. That’s what happened with me. Also, your antibody levels can change. I never had mine tested. My diagnosis was based on my thyroid uptake and scan and the fact that I had all the symptoms – including eye involvement.

Eye Issues:

When I was first diagnosed with Graves’, I had some eyelid retraction in my right eye. It went away completely when I became euthyroid on the methimazole. During the period when I had to go off methimazole and became hyperthyroid again, my eyelid retraction came back, but when I became euthyroid again, my eye returned to normal.

My eyes were fine until this summer. Sometimes my eye would water profusely and my eyelid would become swollen and itchy. I’d wake up in the middle of the night sometimes with tears pouring down the left side of my face. Around the same time, I had a blood test that showed I was hyperthyroid. I had some issues getting an appointment with my endo, but I finally saw her last month and she lowered my dose of levothyroxine. Over the past several weeks, I’ve noticed a big improvement in my eye. It’s pretty much normal now.

I’ve still never had my antibodies tested, but I can see a clear connection between my thyroid hormone levels and my eye symptoms. As long as I can avoid being hyperthyroid, my eyes seem to be fine.

[AzGravesGuy]

#1184708

Hi Suze,

I had A TT after 8 years on and off of methimazole and a failed RAI.

The details of which are chronicled here:

http://www.gdatf.org/forum/topic/42783/?page=1

Since surgery life has never been better.
I now have the energy and stamina to exercise, think, and live again.
I lost almost 70lbs and maintain 12% body fat with ease.

My TED, although slight, has by all accounts gone dormant.

Getting stabilized on replacement hormones can be challenging, especially if your weight is dropping. The 215lb me required considerably more Synthroid than the 150lb me does.

Almost 3 years after surgery and now my only reminder of Graves is the daily Synthroid. The Synthroid DID actually give a burst of energy, nervous energy for about an hour after taking for the first year. It faded and I forgot about it happening until reading your post. The Synthroid insert describes it as “anxiety” after dosing and a somewhat common side effect.

My neck incision was done really low, almost on my collarbone. It was glued and taped after surgery and is no more than a thin white line today. If you’ve had a goiter for an extended period of time, the skin may not shrink back completely. I understand your concern about worsening the appearance, but IMO not having the surgery takes a much larger toll on your skin over time. I work in sales and my regular customers say I look younger now. LoL

My skin has gotten better, clearer and smoother since surgery. It is my understanding that while under active autoimmune response, “Raging Graves”, the entire body suffers. Skin, the largest organ, certainly shows the ravages of disease. The good thing is, skin regenerates, the body can and does heal.

I had serious fears before surgery but now my only regret is not doing it a decade ago when I was diagnosed and it was first offered to me. Ignorance robbed me of my 30’s. If I only knew then how healthy I could have been all along……

My opinion, if you can use your surgeon of choice..do it. Surgery stops the madness. It isn’t a magic fix but it ended my suffering 100%.

Rob

[Suze]

#1184709

Wow – thank you emmtee and AzGravesGuy for these responses. I also read the chain that GravesGuy forwarded. Thanks for that. Everyone’s responses are very informative but have also created some additional questions which I will pose to my doctor. I’ll list them here in case anyone is able to respond:

-Re recovery time from a TT, I was informed up to 2 weeks, but did not count additional time for medicine regulation. How long after surgery can I expect to be in a condition to start a new professional appointment?

-I have not yet been told not to have surgery while my eye disease is prevalent. I thought that was the thinking for RAI only. My eye dr. did say that infusions of steroids are an option for RAI, but I prefer surgery. I wonder if TED will cause me to delay. My eye dr who specializes in TED did not mention that.

-I read in Liz’s response below that you have to wait an hour or so after Synthroid in the morning to have breakfast. Is this the only way to work this?? I hope there are other options.

-A few people mention weight gain while they have Graves disease. My experience has been the complete opposite which I thought was standard. I am hoping that I can keep my diet the same after surgery and not experience significant weight gain. I hear mixed things about that.

Thanks all. Once again, this information is invaluable!

Suze

[Liz1967]

#1184710

I had the TT partly to stop the eye disease. It was very active when i had the surgery and within 8 months after it burned out. I have posted elsewhere on this forum several recent studies indicating that the eye disease burns out faster, usually within 12 months, than on methimazole. I was on steroids before and after due to optic neuritis prior to the TT. As for recovery, everyone is different. I was sleepy the day after due to the general anesthesia, felt fine on third day. I think there may be activity restrictions, i really dont remember, like dont run a marathon for a couple of weeks! I felt good immediately, better than I ever felt on methimazole. It took a year of minor levothyroxine dose adjustments, mainly because of my endo. I started at 112 and I have been at 88 for past two years. A nurse practitioner in my internists office manages it now. Once the right dose was found, I went from feelng good to feeling totally like myself. My daughter in law who does not have Graves, just a hypoactive thyroid, will not wait for coffee so she drinks it right away and just takes a bit more synthroid. Coffee interferes with absorption, so as long as you are consistent and either wait or drink right away, you can adjust your dose accordingly. I would wait 30 minutes though on food. You can also take it at night as long as several hours after eating, or if you usually wake up at night to go to the bathroom, you can take it then. With no diseased thyroid to suddenly pump out more or less hormone, your hormone level is pretty stable. Weight has only been an issue when steroids are involved. Of note, I dose only by TSH, which needs to stay between 0.5 and 2 for those with no thyroid. That was my problem the first year with the TSH too close to 4. TSH came up from nondetectable to normal at first labs 2weeks post TT.
It has been so easy since the TT. No worries about thyroid storm, agranulocytosis, vasculitis, liver issues, frequent labs and dose changes and feeling hypo or hyper. If I did not have the eye disease, I could forget I have Graves. The eye disease is plenty to cope with by itself. I eat what I want, do whatever activities I want, sleep well, do not take a bunch of supplements, basically dont think about it.

[emmtee]

#1184711

I didn’t have any active eye issues immediately prior to my surgery, so I don’t know about that, but I can tell you about my recovery.

I was advised that I wouldn’t be able to drive for a few days after surgery, and since I live alone, my surgeon had me stay with a family member for the first couple of nights after I left the hospital. I was told not to lift anything heavy or do anything strenuous for two weeks. My surgeon scheduled an appointment for me two weeks after surgery and also made one for me with my endo. She also had me pick up some Tums for supplemental calcium after my surgery (in case the parathyroids were damaged or stunned) and also suggested I might want some throat lozenges or chloraseptic.

I stayed one night in the hospital and was able to eat a regular meal for dinner that night. When I was discharged, I was prescribed 600 mg ibuprofen for the pain, and they only prescribed 20 tablets. Surprisingly, I had a couple left over and I didn’t need anything stronger. I only used my chloraseptic once.

I started taking my levothyroxine a week after my surgery. I think I was supposed to go home from the hospital with a prescription, but there was a miscommunication. Since T4 lasts so long in the body, it really didn’t matter. I never felt hypo.

My voice was weak and hoarse for a couple of weeks after my surgery. I think this is pretty standard. This hoarseness is caused by the breathing tube that they use during surgery. One of the risks of thyroidectomy is damage to the nerves that affect the vocal cords, but for my surgery they used a special breathing tube that has a sensor to alert the surgeon when they are close to the nerves.

My recovery was much easier than I expected. I was actually able to do a lot, but I would get tired easily. Two days after my surgery, I went on a short walk (1 mile round trip) and I had to stop and rest at my destination, but I did okay. My surgery was the week before Thanksgiving, and I was able to prepare two dishes and eat all my favorite foods, but I got tired early and left the party after dessert.

I’m not working now, but I’m sure I could have gone back to work (in an office job) after two weeks. If I’d really been needed, I might have even been able to work part time the second week. YMMV, but I think it’s safe to assume you could start a new job after two weeks off, as long as the job wasn’t too physically taxing (like moving file boxes or standing for long periods) and you didn’t need to use your voice too much (like teaching or giving presentations). You don’t need to factor in any time to adjust to your thyroid hormone replacement. You’ll start taking it before your body uses up its stores, so the transition is pretty easy.

I’ve heard a lot of different things about when you should take your thyroid hormone. One pharmacist told my mother that she should wait two hours before eating. The Synthroid website actually says to wait 1/2 to 1 hour. I think most people wait a full hour. Also, you should wait 4 hours before taking supplements because they’re more concentrated and would have more of an affect on absorption.

What seems to work for most people is to keep their medication on their nightstand along with some water, and they take it as soon as they wake up, or even in the middle of the night if they wake up to use the bathroom. Some people set an alarm, take their medication, and go back to sleep. You can actually take it at night before you go to bed, but it’s tricky because you need to take it on an empty stomach. If you routinely eat a light dinner early in the evening, this could work.

[MsMamaKat]

#1184712

Hi Suze,

This is my 1st time logging on & read your post, it was such an immense help just by you asking those questions. My son is schedule to have his Thyroidectomy this Thursday 9/29, after trying the medication route since he was diagnosed 11/2015. I’ve actually copied your questions to use as guide for our pre-op meeting with the Doctor. Again, thank you so much and best of wishes with your journey.

MK

[Kimberly]

#1184713

Welcome to Suze and MsMamaKat!

Regarding replacement hormone, food can interfere with absorption. Therefore, the vast majority of doctors will recommend taking it first thing in the morning and then waiting an hour before breakfast and/or coffee. Some docs will reduce this to 30 minutes, especially if you are taking a gel capsule like Tirosint.

Also, some docs will recommend taking the meds at bedtime, but that probably isn’t the best option if you eat late.

I haven’t had surgery, but I went hypo after years of taking methimazole. I leave out the meds and a glass of water on my bathroom counter every night. I set my alarm for an hour early, but then if I wake up in the middle of the night (which happens the majority of the time), I go ahead and take my meds and reset my alarm. Then I have a much happier morning.

Of course, it’s more ideal if you take the meds at the exact same time each day. But since I already take a different dose (50 mcg instead of 25 mcg) one day per week, I figure that the variability in time isn’t going to make *that* much more of a difference in my levels.

[snelsen]

#1184714

Hi.
another experience.

I think the major thing about taking Synthroid is being consistent with whatever you do. Then the only other variable might be age at some point. I do not follow the “wait an hour” rule. I generally take it, then to kitchen to make coffee. when the coffee is done, I have a cup with a little half and half. It is usually closer to 15-20 minutes after taking Synthroid. I do the very same thing every day. I am not suggesting that you do what I do, but this works for me, and it is what I want to do. Labs are rock stable for several years, never have to change the dose.

Shirley

[Suze]

#1184715

This latest round was really helpful. Thank you Liz1967, emmtee, Kimberly, and SNelson. I’m glad I found this Forum! And it seems we helped MsMamaKat as well. I’m glad this benefited MsMama – good luck to your son on his surgery! I will be interested to hear how it goes if you post about it. I am also glad to hear that at least one person, doesn’t wait too long after taking Synthroid in the morning to consume something. It would have been disconcerting to learn about this late in the game or after the fact. Now I have time to factor this and the other things you all posted about into the equation in considering my options and the timing. I will let you know what I decide to do, but it may take a few weeks. I am tentatively scheduled for surgery in late October, but have not fully decided whether to take the plunge yet. I’ll check back to reread this or other posts.

Once again, many thanks!!

Suze

[Liz1967]

#1184716

Regarding methimazole, people with TED have less of a chance of achieving permanent remission. Even without TED, only about 50% achieve remission, and some of those relapse leaving the rate of permanent remission less than half. Of those who achieve remission, some end up having to take Synthroid anyway because of the damage done to the thyroid. Levothyroxine is chemically identical to the hormone your thyroid makes. Methimazole is a drug, not made in the body, and has side effects.

[Suze]

#1184717

Liz,

So are you saying that with a TT, I have a better chance of the eye remission?

Thx

Suze

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