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  • Please Help! Hypothyroidism after Thyroidectomy in 2004

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    Old 02-22-2013, 09:39 PM   #1
    Join Date: Jun 2012
    Location: St. Louis, MO
    Posts: 7
    Nicole20 HB User
    Please Help! Hypothyroidism after Thyroidectomy in 2004

    I need help! Any advice would be very appreciated especially for those who have success stories/tips to share with me.

    I had a thyroidectomy in 2004. I had goiters, cysts, and a tumor entangles in my esophagus and thyroid. They checked for cancer, I was cancer free. I had extreme hyperthyroidism before surgery. They removed 90% of my thyroid. I have a little bit of thyroid left on my right side.

    After surgery my Endocrinologist at the time only gave me T3 for some reason. I was on T3 only for 3 years! I gained 30 pounds, exhausted, in horrible condition. I told my doctor I didnít want to goto that Endo anymore. So the doctor decided to prescribe and monitor my thyroid from there in 2006. Guess what he prescribed? 100 MG of synthroid. Not 25 starting me out slow, 100! Needless to say, I was in the worse health of my life and he had no idea why. Lost my job because I had such bad anxiety along with other digestive issues.

    Well I am still struggling to find a good Endocrinologist in the St. Louis, MO area. I have been on the waiting list to see Dr. Wessling and wont be able to see him until June. I have been on Naturethroid 1 grain and take 1 Ĺ of 25mcg levothroxine everyday. I have been on Naturethroid for almost two years. I do feel a lot better than being on T4 only meds! Below are my latest tests. I am feeling better since Naturethroid, but still VERY symptomatic. Symptoms: Loss of hair, very dizzy at time, Anxious, and just feeling off all in general.

    I recently had an ultrasound done and they found no goiters or cysts, etc and I still have a bit of my thyroid left. They tested me for Hashimotos and it came back negative. (Thyroid Peroxidase AB/ABTI-TPO: <10 Ė Reference Range=<35)

    My questions:

    Should I take iodine even though I only have 10% of my thyroid left? Get blood tests first?
    Should I start taking Selium? Should I get blood tests before or can I start it immediately?
    Can I still have Hashimotos even though I tested negative for it and do not currently have goiters or cysts proved via ultrasound recently? If so, what tests can be done to prove I have it?
    From looking at my labs below, would you recommend I try all natural and remove the Levothroxine and only be on Naturethroid? I know a lot of you feel better with the T3s in the higher range, which would happen to me since my T3s are currently in range. Wondering if this would make me feel better. I never had luck on Levothroxine in the past but am only on it to increase my T4 levels. When my T4 levels were extremely low 8 months ago I was having extreme hypoglycemia episodes and extreme dizziness and chronic congestion. This is after a year I was on only 1 grain of naturethroid. They added the levothroxine about 8 months ago and my congestion went away and am feeling better but still very symptomatic.

    Labs on 2/5/13:
    FREE T4 .93 (0.78-2.19)
    T3, TOTAL 1.600 (0.970-1.690)
    TSH 0.164 L (0.465-4.680)

    I understand I am hyperactive right now. My Endocrinologist told me to keep taking the same dose but reduce my Levothroxine every Sat and Sunday. Last visit he let me down by telling me the TSH is the most important and that he forgot I was taking Naturethroid in addition to my Levo.

    Please, any advise would be great. I am wondering if I just increased my Naturethroid and cut out the Levo if I would feel better. (of course with doctors approval) Or perhaps increase the Naturethroid but still take 25 mcg of Levo just to keep my T4 higher.

    Current dose: 25 mcg T4 (levo) 38 mcg T4, 9 mcg T3 (Nature Throid) Total= 75.5MCG T4 9MCG T3 After these labs, the endo told me to reduce my Levo by only taking 25 mcg on saturday and sunday but keeping everything else the same which I have been doing.

    I also got a Hemoglobin Alc test done to test for diabetes and the results were: 4.6L (4.8-6.0) but the Endo said I was fine and didnít have any issues with my blood sugar.

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    Old 02-24-2013, 10:39 AM   #2
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    midwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB User
    Re: Please Help! Hypothyroidism after Thyroidectomy in 2004

    T3 only rarely works alone. For someone with no gland, it's impossible. I've seen MDs - especially endos - do dumber things, though.

    I have seen Dr. Wessling for about 10 years. He was the third MD I saw while trying to get my hypoT straightened out. Even though my insurance just changed, and he's not in the plan, it was easier to pay him out of pocket than to try finding anyone new as good.

    I can tell you, he'll probably not bother to test for Hashi's. When my daughter saw him, she asked about antibodies tests. He told her he doesn't run them, because treatment is the same no matter what the cause. Hashi's doesn't cause symptoms of its own, anyway. The resultant hypoT due to the Hashi's is what does. You already don't have a gland; it doesn't matter whether you have Hashi's antibodies or not. Don't fixate on that subject.

    Your dose seems low for someone with no gland at all. Full replacement for the average woman is around 2 or 2 1/2 grains. Many need more. Hopefully, you'll have your dose raised and that will do the trick.

    I will mention only in passing that I once took Nature-throid, and it worked well. However, they reformulated it the same as they did Armour thyroid, which also had stopped working for me. Eventually, NP thyroid came on the market shortly ago. I switched to it, and it has become the one that's worked best for me of all the brands I tried. If it becomes clear to you that even a dose increase doesn't get you where you need to be, consider trying NP. As with all thyroid drugs, though, your mileage may vary.

    I would not bother supplementing iodine for thyroid purposes. You have no gland, so providing the raw material from which hormone is made won't help. There is some controversy about iodine needs other than thyroid purposes, though. I can't comment on that.

    There's no evidence you're hyperactive. T3 drugs keep TSH low. The total T3 test isn't as accurate as free T3, so that's no proof, either.

    If you can alter your schedule on short notice, you should ask if Dr. W's office keeps a cancellation list and ask to be put on it. I got in earlier than I would have on someone's cancelled appointment.

    Good luck to you.
    "We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses." Abraham Lincoln

    Last edited by midwest1; 02-24-2013 at 10:47 AM.

    Old 02-24-2013, 03:56 PM   #3
    Join Date: Jun 2012
    Location: St. Louis, MO
    Posts: 7
    Nicole20 HB User
    Re: Please Help! Hypothyroidism after Thyroidectomy in 2004

    Thanks for your response Midwest. I REALLY appreciate it! I wonder if I should go ahead and switch to NP thyroid instead of attempting to increase the Naturethroid. I looked up NP thyroid and it seems they do not switch their formulas like Armour or Naturethroid. I feel like I am ready for the 2 grains right away since the only increase is basically would only be increasing T3 by 9 mcg. I am currently taking: 75.5MCG T4 9MCG T3

    Old 02-24-2013, 04:01 PM   #4
    Join Date: Jun 2012
    Location: St. Louis, MO
    Posts: 7
    Nicole20 HB User
    Re: Please Help! Hypothyroidism after Thyroidectomy in 2004

    Also what were your symtoms prior to NP thyroid? So you seen a big improvement when starting NP thyroid? Thanks again!!!!

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