Trouble regulating TSH long after thyroid surgery

I am glad you are doing well. I don't know if my post is helpful. But for many years I had undiagnosed thyroid cancer (big tumor wrapped around my trachea) and all my blood numbers were normal. Now, 1 year post op. I let my endocrinologist decide if she is concerned with my blood tests. It's all complicated.

I had to start using name brand Synthroid because the pharmacy generics were always changing. I get it from a Synthroid mail order pharmacy in FL after a friend in SC told me of the pharmacy. It’s about $50 cheaper every three months than using my insurance for name brand meds. My endo and Moffitt Cancer Center have both used this pharmacy for me.

@kmlnj It is complicated. The problem is that evidently very low tsh can cause additional bone loss, and that's not helpful at my age! Lol

I had my thyroid removed May 2024. After initial ups and downs my levothyroxine dosage was stable.....till it wasn't. Who knows why it stopped working. Now once again I'm good. But I have a friend who is in her 70s who lost her thyroid in her 30s. She has thyroid blood work every 6 weeks because hers goes wonky from time to time. So her dosage is adjusted often she says.

Thank you for this input. I just had a call from my Doctor's office, and they have changed the dosage yet again. I fear I will eventually just return to the original dosage from many years ago, after having gone through these many changes in the past year. Your friend sounds much like me. 🙁

I am fluctuating all of the time and it interferes with quality of life. I had a thyroidectomy in 2007 and my thyroid panel bloodwork has been out of range more often than within range for all of these years. I take name brand Synthroid an am compliant with the instructions of when to take and how to take it - in morning on an empty stomach. I have been to a few different endocrinologists who don’t have answers and I think they believe I’m doing something wrong in how and when I take it not following instructions. I tell them I am but they seem convinced that has to be the cause. Is anybody else experiencing this problem after thyroidectomy due to medullary cancer?

I have the same problem and have since my thyroidectomy in 2007 due to medullary cancer. my TSH and thyroid panel has been out of range more often than in range since 2007. It’s very frustrating and life altering. I can’t seem to relay to my endocrinologist that I’m compliant with how I take my Synthroid and I take namebrand and follow his instructions. I have gotten a second opinion, and I am told by all endocrinologist I’ve seen that the reason is due to me, not following the instructions of how to take it on an empty stomach in the morning before eating 30 to 60 minutes. I can’t get them to believe me. Does anybody else have this problem or have you experienced the same kind of feedback from your doctor?

@bellas42686123 I am thinking that the reason I have been having fluctuations this past year could be because of my age. I am 81, and I have read that as we age, our medications may not keep us stable at the same dosage. Otherwise, I have no answer to this issue, but it is frustrating. I haven't gotten any answers from my Doc either. 🙁

Just prior to having my thyroid removed (cancer) I read in info from my doctors that I should not change brands of my prescription. They cautioned that different brands may affect your levels even if they are the same dosage. I'm assuming that since my pills have been the same shape and color that they are the same manufacturer. But maybe not. I'm guessing that Wal-Mart Pharmacy buys whatever is cheapest. Anyone use a non generic drug and get more consistent results? I'm seeing my doctor in a few weeks and if my levels are off again I'm gonna see if she recommends trying name brand.

I think we have to remember why we take a dose of thyroid medication. Thyroid cells in our bodies likely have cancer receptors and therefore can grow "cancerous cells" in response to that TSH stimulation. Suppressing TSH is our goal , to below the normal range, as it helps inhibit the growth of any remaining cancer cells, thus reducing the risk of recurrence. This is why after 30 yrs my suppressant dose was high. Therefore controlling the TSH, tricking my body into thinking I already had enough, so it would not make more. At times it fluctuates, but I think of it as my body responding and then recognizing the levels are high and settling back down.
I have heard some concerns that Synthroid med is not " consistent" in dosage. Or that using another brand might be better. In the beginning I used Armour which is a more natural makeup, but we shifted to synthroid specifically because it was more consistent in active ingredients.
Cancer is scary.
It changes how we look at things and our daily life. I had someone say" oh the tumors are gone, you dont have cancer now". Thats not the reality. For me anyway.
Cancer is always a part of my life in some ways. But, We can get so wrapped up in scores and test results etc that we forget to be present in our life today. If there is one thing being told I had terminal cancer, then having reccurences, then 2 other cancers, and that living "with" cancer has taught me... is this...
Yes we have to pay attention, yes we have to advocate for ourselves, yes there are meds and tests and surgeries and treatments...
but most of all we need to live our life. Enjoy that we have more days to be with those we love and to meet our calling. To be present in each precious moment. Have faith. Praying for each of you.