2 Years post TT. Doc only sees the TSH level.

[BrenPen]

Hi All,  

after my thyroidectomy, (almost 3 years ago),  I was given 125 mcg of Synthroid.  Since then the doctor has reduced the amount, in increments, to most recently: 50 mg daily, along with the .5 mcg of Cytomel I take twice daily.  I have gained 25 pounds/ 10 pounds each year.  I have most all of the hypo symptoms.  I cannot sleep well.  My energy is so different from 'before'.  I am almost sorry to have had this surgery.  Obviously it was my best choice with the nodules and post operatively with papillary cells of carcinoma.  My TSH is "very Low" and my T4 blood test was smack in the normal range, when my doc told me to decrease to 50 mg.  How can I get help?  There are only 2 endos in the area and I have seen them both.  It is all, 'ALL about the TSH' with them.  I'm getting so depressed with all the symptoms.  I will not decrease the dose.  (Like I can do anything about that!).  I feel like a child around these mds.  I am getting angry with the docs not asking how I feel. I feel terrible.   Any ideas and or advice would be very welcomed.  Sincerely, Bren

[BrenPen]

Thank you for your response.  This forum is wonderful and somewhat overwhelming.  It is comforting to know that I am not the only 'Soldier for Me' in the Thyroid arena.  Thank you for what you do to have this site!  I appreciate your work.  
Sincerely,
BrenPen

[ChitChatNine]

I agree with Utah and others .. and WELCOME TO THE COMMUNITY!

[utahmomma]

Either find an ENT or an oncologist.  You need *much* more than just your TSH and T4 checked since you had cancer.  At a minimum you need your thyroglobulin (Tg) checked, a chest x-ray, and perhaps an uptake scan and/or ultrasound of your neck.  You should also have a complete (COMPLETE) set of thyroid labs run.

You can be treated by more than an endocrinologist and it sounds like the two in your area are NOT thyroid experts at all (most endos are not - they just deal with diabetes).

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma

[hypogirl80]

First, why do they reduce your dosage ?  Are you feeling OK on 125 Synthroid ? You need a doctor that listen to your feeling and treat your symptoms. not just look at the test numbers. Most Endos are not thyroid specialist since thyroid is a such small area and does not generate enough income for them. If you can not find a good endo, then try a good GP doctor,  tell him/her what you want, and see if they are willing to work with you. if not, move on, I changed 4 doctors the first 2 years when I had Thyroid problem.   In the mean time, adjust the dosage yourself to see if you feel better, in your case, you may want to increase to 75, 5, 5. which is about 105 Synthroid (Cytomel is roughly 3 times of Synthroid, so 5,5 is about 30 Synthroid, and you only need Cytomel when your FT3 is low and not go with FT4), if you still feel hypo, increase it again accordingly. You should also get TSH, FT3 and FT4 test so you know what you are doing. What are your current blood test results anyway ?  if you can post them here, may be some one can help you. there are a lot of thyroid experienced people on this forum.