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  • Total Thyroidectomy One Year Still Trying To Level

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    Old 09-09-2008, 08:49 PM   #1
    NoThyroid07
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    Total Thyroidectomy One Year Still Trying To Level

    Okay I had a total thyroidectomy Sept.24th 2007. I have been on the ultimate roller coaster some days I just want OFF! I am on doctor #2 and still feel like I'm not being heard. Not only am I missing my thyroid now but my parathyroid's were damaged during the surgery but have since become activeish. I am still having to take calcium.
    Biopsy came back showing Follicular carcinoma.fter surgery the path report
    found no Benin cells. No matter that fact I had to have the tumors out due to the size of both cyst I was eventually choking. as well as the cyst were soft (hot)and then became hard (cold) Anyway In had never had a tsh come back other than normal the function of my thyroid was fine so the tsh and t4 and t3 levels are new to me.
    I went to the recommended Doctor that my surgeon requested until a month ago due to the PA not listening to me. I would tell her I felt TIRED and about mood swings, memory loss, depressed, ect she would write down mood swings BUT I"M TIRED!!! I have been working a regular job thought all of this and I have two kids I cant be this tired so she tells me I'll have to "get use to it". I can't get use to it I have to con't to live my life. The Doctor at the practice was GREAT but the PA well is the reason I left. So I found a new Doc and well not so good. I go and the nurse is measuring my bmi I asked why and she explainers about pt's with diabetes but will only do this once then she tells me due to my bmi that it puts me at risk for osteoporosis. What? I an 5'7" 120 lbs? Anyway the doctor comes in and lectures me about a phone call he had gotten. A patient of his call because she wasn't feeling well and he proceeds to lecture that he can tell if we "thyroid pt's" don't take there med's correctly he can tell. So no matter what I said I feel like he would chalk it up to just that. well anyway I had my labs done a week ago and received a letter yesterday saying he recommends increasing my med's to 112 mcg the prescription was in closed follow up in one year. Really is this normal? I called back and the nurse gave me my levels that are tsh11.14 and t4 free is 1.2. Can anyone tell me what these levels translate to? I know it's hypothyroid but is this way off? Anyone on in the Gwinnett County area in GA that has a Doctor that cares?
    I am wanting my thyroid back now. Bumps and all. Not sure this ride was worth it. I know I'm crazy but is anyone else out there that is having some of the same fun?
    It's been a year when will I be level

     
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    Old 09-10-2008, 04:18 AM   #2
    Reece
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    Re: Total Thyroidectomy One Year Still Trying To Level

    Okay, you have a doctor issue here. Are there any university hospitals near you? If so, go to it, and find the endocronology department. You may have to travel to Atlanta or somewhere to a major hospital to get started, and then you can always have them work with a local doctor once you are followed up and managed properly. Can you get to Duke (south carolina is it)---you need a competent doctor because you have a cancer issue.

    Have you had RAI? Sounds like you needed it, or should have it if you didn't. Maybe the radiation oncology or nuclear med. department can refer an endocronologist that can manage thyroid cancer patients?

    You need to keep your TSH suppressed, that is usually, depending upon your age and health, below .1 this prevents the thyroid tissue from growing back, and your cancer's return.

    You must find a doctor to manage the tsh to make sure you don't get thyroid cancer again. If there are just no endocronologists in the area at all, then find a oncologist, and tell her/him that you need to keep your tsh suppressed to avoid a recurrence.

    Last edited by Reece; 09-10-2008 at 05:07 AM.

     
    Old 09-10-2008, 05:45 AM   #3
    Suey77
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    Cool Re: Total Thyroidectomy One Year Still Trying To Level

    Hi NoThyroid welcome ~

    Totally agree with Reece's suggestions about Doctor issues. <--THAT happens waaay toooooo often (so-called MEDICINE should be !!!) I'll leave cancer to the experts

    Quote:
    he recommends increasing my med's to 112 mcg the prescription was in closed follow up in one year. Really is this normal?

    nurse gave me my levels that are tsh11.14 and t4 free is 1.2.
    NO it's NOT normal. I'd say every 6-8 weeks while being stabilized is NORM

    Did I read your TSH correctly ?? Even if we set aside cancer, THAT is HIGH! You need more competent Thyroid care

    Keep us posted


    Fall 05 - I had one enlarged, non-cancerous Thy lobe removed. So I well understand the medical RoLlercoAster you speak of , , ,
    Today, I'm going to my 6th Dr in less than 3 years

     
    Old 09-10-2008, 01:08 PM   #4
    NoThyroid07
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    Re: Total Thyroidectomy One Year Still Trying To Level

    Thank you so much for your reply I am close to Emory I am going to try and find someone out that way atleast I haven't thought about that as an option. It's great to not feel alone or any crazyier than I know I am already.

     
    Old 09-11-2008, 07:45 PM   #5
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    Re: Total Thyroidectomy One Year Still Trying To Level

    NoThyroid07:
    You are not crazy at all. I had a total thyroidectomy 13 years ago and wish now everyday I would have never had it done. They are trying to switch my medicine down and in the meantime I have had headaches so bad I cannot stand it. ANyway, I do know
    when my TSH was about 8.3 while I was pregnant, my endo raised me up from 0.175
    to 0.225. So if you are only on 112, that seems low to me. I have a TSH at about 0.07
    and when one of my endos put me down to .1 Synthroid and Cytomel, it threw me in the normal range with TSH at 1.61 although I felt like I was going to die. I hope you figure it out. You definitely need to find an endo or someone that will listen to you. Do not make the mistake I did. I have been on the same dose for 13 years at .175 now because I really did not know any better and my doctors never changed anything because I always felt okay, now they are trying to change me and my body is going haywire. Good luck to you.

     
    Old 09-11-2008, 07:52 PM   #6
    NoThyroid07
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    Re: Total Thyroidectomy One Year Still Trying To Level

    Thank you for your encouragement. I really hope there is a change soon. I am on the search for a new and improved Doc.
    I wish there was a magic pill that would fix the way I feel instantly.
    Thanks again.

     
    Old 09-12-2008, 10:59 AM   #7
    Nick16
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    Re: Total Thyroidectomy One Year Still Trying To Level

    I am dealing with a bad Endo problem as well. I had my thyroid out back in late july due to cnacer. After a week i started to feel light headed, dizzy, tired, with killer headaches. I let this go on thinking it was just me trying to get used to my meds. But after a couple weeks i talked to my Endo and he said it had nothing to do with my meds. So i let it go. After about another week or so i called him back witht the same syptoms so he told me to call my primary doctor, so did. Primary takes some blood and calls me back to tell me my TSH is at 15.17. Call my Endo with that number and he ups my dosage to 125mcg. For the past week and a half i have not gottan any feedback from my Endo. Today i left work early feeling the worst i have felt so far. Call my Endo and guess what, he wont be avalible for the next week. There is a new guy who just started in my area and he comes with a good review so i will be sending my papers to him. Im 20 and i dont want to deal with a bad Endo the rest of my life.

    Hope everything works out for you NoThyroid07

     
    Old 09-12-2008, 11:16 AM   #8
    sey
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    Re: Total Thyroidectomy One Year Still Trying To Level

    Me too!!! Had mine out 3rd July 2007!!! Started off on 125mcgs levo reduced dec 07 to 100mcgs and reduced 2 weeks ago to 75mcgs! My ft4 kept rising and tsh lowering....... l had problems right from day 1 of starting ptu for graves and block and replace! Im still not right... lm seeing a rheumy in 2 weeks time may have fibromyalgia which symptoms are very similar to thyroid issues l know we havnt the xact same prob but just wanted to let you know you are not alone..............sadly good luck with everything xx

     
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