[Elisabeth417]

#1060625

I have Graves disease, had a total thyroidectomy in January, and began Levothyroxine a few days later. I was doing really well on the Levo for about 5 weeks, and then began to have symptoms of Hyperthyroidism again. My Endo kept reducing the dosage and switched me to Synthroid, but I was still Hypo. Now, I’m on half the dosage of Synthroid for my body mass, and am still verging on Hyperthyroidism. I’m baffled.

My endo has given me a kind of hand-wavy “your body is still adjusting” and then admitted it’s possible that some of my thyroid could have been left behind by the surgeon.

Has anyone had a similar experience, or heard of anything like this before? I’m at my wit’s end.

[Kimberly]

#1183708

Hello and welcome – hopefully, others who have had thyroid surgery will jump in, but here are a couple of thoughts…

Is your doc testing Free T4 and T3 in addition to TSH? That might help shed some light.

It might be helpful to document exactly what your symptoms are and check with your primary care doc just to see if there might be any other possible causes.

I don’t know what your age is (and you don’t have to share ), but in some older patients, docs will start with a small dose and gradually work up to give the body (and especially the heart) some time to adjust.

I’m a fellow patient, not a doc, but it would be highly unusual if there was enough tissue left behind to be causing hyperthyroidism. The recurrence rate of hyperthyroidism after total thyroidectomy is near zero. (Although typically, there are *small* amounts of tissue left behind, to avoid damaging structures next to the thyroid).

Hopefully, your doc is right and this is just a matter of your body adjusting, but if you don’t feel that your concerns are being taken seriously, a second opinion might be helpful. The “Looking for a Doctor?” thread in the announcements section of the forum has a few good links where you can search by city/state/zip.

[Liz1967]

#1183709

I had a total thyroidectomy 16 months ago. My values were checked every six weeks at first. I started at 112 micrograms of levothyroxine. This was fine for several months and then values were a bit hyper, requiring a drop to 100. Long story short, your body does need time to adjust and once you get close, checking values sooner than every 3 months merely confuses the issue! These values do not occur in a vacuum. Your health, thyroid hormone requirements, etc. are variables that affect your lab values. It took going a little hypo from too little levothyroxine and then slowly increasing to reach the optimal dose. I am at 88 micrograms three times a week, 75 four times a week and I feel normal. Labs now checked every three months, mainly because I have the eye disease and a bit hyper affects the eye symptoms a bit. I have never regretted the thyroidectomy. It is easier to adjust levothyroxine than methimazole and thyroid storm is off the table. Give it time, you will figure out at what level within the normal range you feel best. Some people are more sensitive than others and everyone’s requirements are different. I have found the tsh to be most reliable as it is a value over time rather than a snapshot like the ft4. Good luck! You will know when you are at your optimal dose. Hope this helps.

[sarawebberdurnell]

#1183710

I had a TT about 14 months ago and I am still adjusting my levothyroxine. I have jumped from hypo to hyper symptoms several times. For the first time since I was diagnosed with Graves and Hashimotos, my T3 is low, so I have started taking liothyronine. It is frustrating, but I wouldn’t trade having my thyroid back. Getting the “sweet spot” for meds after surgery can take some time.

Sara

[Ellen_B]

#1183711

Hello,
I have not had a thyroidectomy for Graves’ disease so I cannot speak from my own experience. However, I was recently talking to a patient who has. Her case was unusual in that she was supposed to have a total thyroidectomy but a small piece was left in. Her surgery was done at a top rate hospital but she had to have an emergency thyroidectomy late on a Friday evening and the only available surgeon had to do the thyroidectomy. He probably saved her life but did leave a piece of the thyroid in.
Needless to say she is having a difficult time getting regulated on the methimazole. Her doctor is now trying the block and replace regime. She is on both Synthroid and methimazole. She takes the smallest dose possible of methimazole twice a day and a moderated dose of Synthroid. Her doctor did do a scan and found the small piece. If she takes a higher dose of methimazole she becomes hypo and has to get off the methimazole for a while before (after being tested) she goes back on the methimazole. She cannot go for a second surgery because she has TED.
Most people do get regulated with a total thyroidectomy by adjusting their thyroxin medication but it sometimes takes a long time. I knew another Graves’ patient who had a total thyroidectomy. She was having great difficulty getting regulated on Synthroid. She switched to the generic and got regulated! I don’t think she or the doctor knew why.
I wish you the best of luck with your treatment. Your asking questions and getting answers from others (doctors) is the right way to go.

Ellen

[snelsen]

#1183706

Ellen, I realize you are giving some anecdotal stories of the experiences of other people. So there is lots of room for error and misunderstanding. For even when we are writing about ourselves, it is through our own eyes and subjective experiences.

But it would be very unrealistic and probably is a misunderstanding, that this person had to have an emergency thyroidectomy. It simply does not happen. Nor would this procedure be a life saving procedure. There is information that is missing in this story or misunderstood by someone.

Of interest, historically, Graves’ has been treated with SUB total thyroidectomies way longer than with total thyroidectomies. As a result, many people with Graves’, including myself, were euthyroid (normal labs, felt great) for many, many years, and sometimes for the rest of their life. Because the overproduction of the thyroid hormone was greatly decreased back to within normal lab limits. It is only in the relatively recent past that total thyroidectomies came into fashion, because the medical practice change, thinking it is easier to manage the anti-thyroid drugs if the entire gland is gone.

Having TED is not a contraindication to have a second surgery. Of any kind.
They are two separate, but related, endocrine diseases.

It does take a while to get to that sweet spot, that is for sure. Longer than we want.

I hope you generate some good questions for the doctor you see today, and definitely generate clarify what I have said here with your doctor. Elizabeth14, if you really want to know if some thyroid tissue was left behind, ask for a CT of your neck. Did his comment regarding some tissue could have been left, kinda morf out of your frustration of not being regulated yet? There is an easy way to know the answer. Ask for the dictated note by the surgeon. That is your reliable source. They always have to be careful with this surgery, cause they have to be super careful not to bother or resect the parathyroids which sit on each side of the thyroid gland. AND please check this with your doctor, but generally the thyroid lab is not reliable until AT LEAST 2 months after the last medication change. Yes I just another person with Graves. I am sure it will settle down for you! But the frequent labs can mess up the dosing regimen if you don’t wait long enough for the body to acclimate to the change. I hope you can check this out with your docs. You WILL be better, and feel like you again.

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