Low TSH Levels after Total thyroidectomy

[salty6]

Hi I have just had RAI treatment. 8 days in solitary confinement, I was in strict low iodine diet for 3 weeks before and not T3 (liothyronine) foe 10 days before and yet when I was admitted my TSH was still too low and I had to have two injections of thyrogen before the radioactive iodine capsule could be given, this seems to be an ongoing thing with THS for me ever since I had the multinodular goiter in 1993 had the TT on Dec 3rd and they found follicular carcinoma hence the RAI treatment, does anyone know why I should have a low TSH reading under these circumstances, I was really upset when after 3 weeks of careful food monitoring this should happen. I just don't understand why my blood and pituitary don't seem to be normal I had similar problems when on Levothyroxine for 18 years with doctors upping and downing the dose. If anyone else has experienced this I would love to hear from you, thanks in advance

[helvella Administrator Thyroid UK]

The obvious thing to suggest is that you have a pituitary issue. That is, the pituitary is simply not producing the expected amount of TSH given the thyroid hormone levels.

There are several possible reasons including autoimmune attack on the pituitary. This is reasonably common in people without any obvious disease!

Going a step further back, maybe you have an issue with your hypothalamus?

Rod

[salty6 in reply to helvella]

Thank you so much Rod - I have had so much support from this site, it really is good to know that you can get some answers, even the doctors seem a bit confused when I asked them what the problem could be. I think I will ask the surgeon when I see him if there is a case to see an endo if this continues as I really can't face the yo yo medication again, I have felt so much better on the Liothyronine than I ever did on Levothyroxine, and although the surgeon says I can stay on that for another 6 months till they confirm that I don't need further RAI treatment I dread going back on Levothyroxine. Fortunately he said that I wont be under the GP for medication control. Thank you again kindest regards Sally

[grandmaboo]

I had a total thyroidectomy in 1990 following 16 years of abnormal thyroid enlargement. In the past 23 years, all but one TSH level has been extremely low. >0.004 for example. The only normal one was when I was in ICU in 2005. I have had doctors reduce my medication to almost nothing, and the numbers are never normal. This happens to too many of us for it to be a fluke. As to the osteoporosis concern: my doctor said, "yes, there is a very minimal increase in the possibility~but you weigh if the minimal risk is worth feeling better". I, too, take 150 mcg~have had it reduced at times to 75 mcg and the TSH level never improves. I'm thinking there is a connection between the Hashimoto's, thyroidectomy, and medication that has not been figured out yet. I did have one doctor say "of course your TSH is non-existant, you don't have a thyroid". Very frustrating! Good luck to all!

[salty6]

Thank you Grandmaboo, it is so good to hear that I am not the only one, I still see my surgeon and he is quite sensible he says my gp will have no control over my meds, I will be under him and the TSH must stay suppressed to reduce the risk of recurrance of cancer. I seem to be well on the 60mcg of Liothyronine (T3) and slowly losing the 5 stone that I gained when the thyroid was messing about and gp's was doing the same with meds. Surgeon says I can stay on them as I seem to be doing so well. I have to have a challange scan soon which involves similar to the full scan but will cross that bridge when I have to. Hope this helps some out there as I have tried to be positive. take care all!