← Return to Life after total thyroidectomy after papillary cancer

Discussion

Life after total thyroidectomy after papillary cancer

Thyroid Cancer | Last Active: Feb 3 6:14am | Replies (40)

Comment receiving replies
@selliott

@colleenyoung , yes, I have had 3 endos. This is my third. He does not listen to any concerns.
When my T4 levels went from point 24 to 1.76, he asked me what happened. Well, this has been happening since June-July 2019. I take it the same time each day. I don't eat or drink for an hour and do not take any other meds until 4 hours after the Tirosint. I am to the point that at the last 2 visits, I told him I really didn't care about anything associated with the TSH levels. He said, not caring is a good thing. I have been on Levo, brand Synthroid and brand Tirosint, all different strengths. I haven't been back to him since September. He does not listen. He is worse than the first 2 I had seen. I'm not a difficult patient, I ask questions. It is my health, I know what I feel, and my body is off. The only explanation I get is your levels are fine or once your levels are right, all of those symptoms will go away. Well, here I am. I respect the medical professionals however, you cannot throw a text book at everyone and put them in a box. I can't remember what the specialty is called, something like a naturalist ? Homeopathic? Anyway, has anyone had success with a different specialty? I need my yearly ultrasounds and to stay suppressed. The last T4 level at the endos office was . 12 in September 2022 and now per a family doc, it is 7.63. I'm on Tirosint 86mcg. I'll begrudgingly go back to Dr Personality but need someone who does not put me in a box and will try to help. The memory and brainfog is embarrassing. Thanks for listening.

Jump to this post


Replies to "@colleenyoung , yes, I have had 3 endos. This is my third. He does not listen..."

Hi,
All of those different types of thyroid medications are very different. If you find a good endocrinologist they'll help you with that. One thing that might be affecting your levels and how you feel is taking Tirosint. That is natural thyroid hormone from pigs. It can work great for some people, but it can have very varying amounts of thyroid in it. For a variety of reasons. That then of course makes your thyroid levels fluctuate, and makes you feel like crap. But it works for some people! Level thyroxine is the manufactured t4, and that works great for other people and is pretty stable. A lot of people need t3 on top of t4, especially if part or all of their thyroid has been removed. That's what I needed. So I take t4, levothyroxine, and a little bit of t3, cytomel.
It can take a long time and a lot of adjusting, but an endocrinologist who understands the differences between these and is willing to try things will be very helpful to you.