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4 years post op thyroidectomy what does your endo want to keep TSH at?
I am 4 years post op for papillary cancer. Also had several lymph nodes removed. This came one week after 2 parathyroids removed because of adenomas. I did not receive RAI as the well known cancer center near me said it wasn’t necessary. All blood levels and scans in past 4 years have been negative for signs of CA. I have had to lower my Synthroid dose since then. I have a new endo and I have lost 98.4# this past year and dose has been reduced twice ending up at 112mcg. My last TSH was 1.76 which is way higher than we have always kept it and I am concerned. The endo said it wasn’t necessary now to keep it so low and we could keep it a bit higher??? We always had kept it at the lower end of norm so this threw me off, since it goes against what I know. My BP has been high and my pulse has been low..57-60. I had to restart my BP meds. I want to gather as much info before I talk to my new endo. I want facts. I can find nothing at any hospital site, Mayo, Cleveland, Johns Hopkins, that suggests TSH is ok at this post thyroidectomy. I hate to have to find another endo. This endo gave me a GLP compound med when no one else would because of health center policy. I don’t want to change again but I will. I just want to understand the thinking behind it. You can’t just tell me it’s not necessary any more. Thank you for reading, I know it was long. I appreciate it.
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@3oakley2
I had a lobectomy due to a large (2.5cm) suspicious nodule on the right. It affected by speaking and swallowing.
My TSH was usually below 1.0 before surgery. Once it was removed, my TSH gradually creeped up to 4.5 and at that point, I was a zombie that couldn’t get out of bed or function at all. My endocrinologist put me on 88 mcg levothyroxine that brought my TSH down but it was still around 1.5-2.5. He then increased it to 100 mcg and my TSH finally went below 1.0 and I felt better and could out of bed.
You may want to look at all of your lab work prior to surgery to see the trends in your TSH and what level was when you felt better. That’s how I found my TSH below 1.0 historically was when I felt better and told my endocrinologist this to ask to increase my medication. What is then”normal” TSH in the reference range is not “normal” for all. Some reference ranges say you are “normal” at 5.0! I would need to be buried in the ground if I was expected to function at this TSH level.
One other reason to keep your TSH low is to discourage extra thyroid cell growth. Even though you may have a lobe or full thyroid removed, you need to still get regular ultrasound to monitory thyroid cells regrowth which could include cancer cells. My last ultrasound showed I had some cell regrowth and this needs to be monitored plus my other lobe due to a macro calcification.
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2 ReactionsThank you for your answer. I have US and blood checks yearly for cancer checks. I was trying to gather info but I think I must make another appointment for clarification..and understanding of what and why.
Thank you again.