Totally confused

[sarajw]

Hope you can help. I'm totally confused. About 6 months ago i went to the doctors because i developed swelling on my neck. The doctor discovered that my thyroid gland had stopped working and perscribed my 100mg of levothyroxine daily, and said that my goiter should go down as i started to feel better.
I did feel a slight improvement but my neck continued to swell, i was referred for an ultrasound scan, which did show some nodular change, but i was told it was perfectly normal and my goiter probably wouldn't go down.
That was about 3 months ago, and although at first it wasn't painful, the last month it has been very painful and i now have swelling to the top of my neck, which is quite painful.
I went back to the doctor because i also started to feel quite unwell again, eg, very tired, swollen eyes (which i didn't have to begin with). I had another blood test, and doctor increased my dose to 125mg daily, and i have been referred to an endocrinologist, because some hormone level had increased and she thinks it may be due to the pituitary gland.
I really don't understand any of this and am not sure what to expect, is it quite normal for swelling to continue, get worse, whilst taking levothyroxine.

[sarajw]

Lost would certainy describe how i felt last month. I couldn't see my own doctor, and was told i would have to wait 3 weeks or see a different one. I opted to see a different one because i felt so ill. He sent me for another blood test and full blood count, it took everyday of phoning for 2 weeks before i even got to speak to a doctor again, and was told they were referring me to Endo because they're concerned and to pick up a perscription as they were incresing my dose of levothyroxine. Basically that was it!
I am going to make a list of questions when i see the endo so in case i forget to ask.
I just feel so blind to it all at the moment.

[AR-10]

You need to get very pro-active about this.

Ask for copies of your tests when you get bloodwork.

Read up on your condition and get educated so you can have informed discussions with your doctors.

Ask questions, or you may not get answers. You need to be informed enough that when an Endo say "we will try this" you can say "well, what about this, and maybe we should try that".

Do not blindly follow suggestions or directives.
Know what your numbers are, what they mean, and various treatment options.

It's YOUR body you are dealing with. The doctor sees twenty of you a day. They may mean well, but you may get lost in the shuffle. Some doctors are great. Some doctors are mediocre. You need to be able to tell the difference.

Good luck to you.

[sarajw]

Thanks Karly, the doctor increaed my dose to 125mg about a month ago, but perhaps this is still not enough then,
thanks for your response,
sarah

[Karly122]

I cannot answer to all the concerns you stated, but I do know that if you aren't on the correct dose (for you), the symptoms will continue to get worse. I've found that they get worse at a slower pace than if you were not on any medicine. The fact that they are still bothersome and continuing to get worse, means this is not your dose (100mg) and indicates it's time for an increase. Keep me posted as to how you are doing on your new dose. Take care-
Karly