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Post total thyroidectomy TSH level question.

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Old 10-26-2011, 01:28 PM   #1
Join Date: Oct 2011
Location: nh
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bella1176 HB User
Post total thyroidectomy TSH level question.

I had a total thyroidectomy 9/12/11. My surgeon likes to wait about 6 weeks to get my first TSH. He has me on Levoxyl 137 mcg post op. I have had ongoing frustration with my PCP office re: this whole thyroid thing. However, my surgeon assured me that even a new grad from med school can figure out how to manage my TSH post op. I called the PCP office last Monday to let them know I needed my TSH checked. It took until Wednesday to hear back from them and the message was that they had received nothing from the surgeon and wouldnt manage my medication until they heard from him how he wants me managed. I didnt get the lab slip in the mail until Saturday. Had the lab drawn yesterday (Tuesday) and then had to follow up with them today. Again, I had to leave a message and the return message I got was that they still didnt have anything from the surgeon's office but they will call and request it today (I thought they did that last week) and that my TSH was fine at 2.359 so they wouldnt adjust anything. Well, two things...first I called the surgeon's office and they were (and have always been) very accomodating and said they would fax it out right away-this makes me think the PCP office never requested it last week. Also, I feel like ****. I have no energy, I have had my period for a week at a time three times in the past month, my hair is still falling out and Im freezing cold when nobody else is. I have had issues with this office listening to me in the past, infact if I had listened to them and not referred myself to Brigham & Women's in Boston I would still have my thyroid. Has anyone else had this much frustration? How about my TSH, is that normal for post op thyroidectomy? Does anyone's MD treat the symptoms instead of the lab? My thyroid function was "normal" pre op yet, I had a FNA that showed Hurthle cells in a nodule so I was referred to my surgeon. When he opened me up he said I was a mess. Thyroid was massively inflammed, dark (hypothyroid) and adhered to tissue, muscle and the right side wrapped around my esophagus. Sorry so longwinded here. I am beyond frustrated with this though. I was so hopeful that I would be feeling better post op but it just isnt happening.

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Old 10-26-2011, 05:47 PM   #2
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Re: Post total thyroidectomy TSH level question.

TSH isn't enough, they have to at least check your free t4, and even that probably has to be in the upper part of the range for you to feel right. You need a more thyroid savvy doctor. Since you have no thyroid, you need total replacement, and I have a feeling you are under-dosed. I (had thyroidectomy for thyroid cancer) take between 150/175 mcg---I'm tiny---my mother in law who has had thyroidectomy as well---she's a larger woman, and she takes in the high 200 mcg range. You need a doctor who will work with you. Can you at least get a referral to an endcrinologist?

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Old 10-27-2011, 07:48 AM   #3
Join Date: Oct 2011
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bella1176 HB User
Re: Post total thyroidectomy TSH level question.

Im going to call my PCP office and see where I get with them today. If Im still not happy I plan on calling the Endocrinologist in Boston who did the FNA. When my PCP found my nodules she referred me to an endorcrinologist here and that was a total nightmare. The MD looked at me and said that my thyroid was fine and if I was concerned about my weight gain (40 pounds in 2 months that I still cant shed no matter how hard I try) then perhaps she could refer me to a bariatric surgeon for a lap band. I wanted to punch her in the face.....dont worry I didnt. That is when I took matters into my own hands and called Brigham & Women's myself (since the PCP office didnt do it when I asked for the referral 2 months prior) and got an appointment for my FNA with a Endocrinologist down there. Im so completely frustrated with this crap. Thank you for your help. I really appreciate it.

Old 10-27-2011, 09:29 AM   #4
Join Date: Oct 2011
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bella1176 HB User
Re: Post total thyroidectomy TSH level question.

I called my PCP office and voiced my frustration. My doctor is not in the office until Monday. I have an appointment at 4:15. They have all my records now so that shouldnt be an issue. Im going to say my peace and if they dont want to manage me the correct way I will be going back to Boston. I knew I would have this issue with this office but I tried to give them a chance. Going on week 8 post op on only 136mcg Levoxyl and feeling like crap. Ugh...Monday cant some soon enough.

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frustration, hurthle cells, thyroidectomy, tsh level

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