Full Thyroidectomy and Wicked Fatigue

Hi everyone. I am new. I was diagnosed in December, had my entire thyroid removed in early February, and rather than feeling better, I am getting more tired. I am told I am stage 1 and scheduled to have the full body scan the end of this month. Apparently my function tests come back okay (am on 100 mg synthroid) but the fatigue is crippling.
Have any of you experienced this?
When I ask the endocrinologist, she says that my labs do not correlate with the fatigue, but -- hello --, I am so tired I stand for more than a few minutes.
Also, do you have oncologists or do you shuffle between your endos and surgeons cause I don't feel like either of mine understand what I am going through!

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I just have the Endo and my Primary Care doc. I don't see on oncologist. I am on 200mg synthroid. They keep upping mine. Before I had my thyroid out my tests would be up and down, never the same number twice. Have you discussed your fatigue with your primary? Sometimes hearing things from another doctors perspective helps. I have problems with fatigue as well but I also have other conditions and being on a low iodine diet isn't helping things. Also, if your endo isn't listening to you, maybe you should find another doctor. I can understand tests not correlating, but if there is an obvious symptom present and they just ignore it, that is just wrong (in my opinion).

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I agree with duckie_monroe ... these doctors need to listen to our symptoms and not base everything on just test results. I went to 3 different endo's before finding this one (who I like very much). He listens to me, as well as basing his decision on blood tests. I had my thyroid removed in June due to papillary cancer, and had the RAI treatment in October - I never went to an oncologist, just my endo and a nuclear medical doctor (who did the RAI). The fatigue will get better. They will probably up your Synthroid (I am on 200mg) along the way. If that doesn't help, ask about T-3 ... that helped me. It is such a long, winding, bumpy road that we are all on, and just have to hold on for the ride!

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Hi Angela, I had my TT on 2/17, and I have been on 125 mg of synthroid, currently on the LID, with the RAI to occur at the end of the month. I too was very tired, and when I told my ENDO, she said to double up on one dose, on Saturday or Sunday. You may wish to ask your doctor, if he could increase your dosage on one day. One point that my ENDO provided, was that she is "baselining" my first blood work up, so she doesn't want to fluxuate my dosage this month. She also advised that once she had my blood work up, then she would be increasing my mgs to possibly 200. I am fairly comfortable now, and get a bit tired in the afternoon. I have started on my exercise routine too. I am not sure, how I will do on such a jump to 200. I have seen several Endo's, everyone has a different approach with the drug therapy, RAI, and long term maintenance. Give yourself a chance to adjust, keep a diary of your symptoms, and don't be afraid to get a second opinion. Be sure to have your test results. Good Luck.

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I have an endo and an oncologist who is also the surgeon who will be taking out my thyroid in a few weeks. Even though ive had hashimoto thyroiditis for years I've never been on Meds bc my levels are "normal" but I too am always feeling fatigued. I am/was hoping finally starting Meds after my surgery would get rid of that fatigue.... Here's to hoping!

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Thank you. I will have to look up T3. I am shamefully ignorant of some of the medical issues of thyroid cancer because I have been so tired for so long. I apparently had Hashimoto's disease as well as an extreme case of hypothyroidism, and was unbelievably tired for close to a year prior to having the diagnosis. But I have two other medical issues, as if having thyroid cancer wasn't enough. I have bad arthritis, and a rare and excruciating condition called interstatial cystitis (it sounds like I am carrying my cysts across state lines when in fact it is an inflammation of the bladder wall). Yes, ug, it's as bad as it sounds. So I am a walking, pained zombie.
Again, thank you to those who responded.

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Welcome to Inspire. Fatigue is a tricky thing - and quite common - amongst us ThyCans. May I ask what your TSH is? Also your free T4 and free T3? There could be several things going on. For starters, they like to put us on "starter doses" of Synthroid after surgery. It might not be enough but they won't take the time to fine tune you likely until after your RAI. Normal TSH is a wide band. Each lab is different, but typically normal is defined as something like 0.5 to 2.5. Well 2.5 might be normal but for you it might be high and might actually be hypothyroid. On the flipside, if you are too hyperthyroid, that can also lead to a fatigue where you are so hyperthyroid that you run fast, never really rest when sleeping and then you are tired during the day. Taking Synthroid (which is T4) is usually enough for most people because the body breaks it down into T3 - which is what gives you your energy. You might need to supplement with T3 or take a T4/T3 combo drug such as Thyrolar.
dj

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I HAD MY THYROID OUT IN 2000 DUE TO 1ST STAGE PALPILARY THYROID CANCER.OVER THE YEARS MY DOSE HAS INCRESED.ITHINK I STARTED ON 150MCG AND THEN 175MCG AND ABOUT A YEAR AGO WENT TO 200MCG BECAUSE MY HEART RATE WAS 35 BPM,IT IS NOW ABOUT 60 BPM.SOME DAYS AND MOST ALL DAYS AT SOME POINT IN THE DAY I HAVE SEVERE FATIGUE,EXERCISE AND CAFFEINE HELPS,

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Hi,
I think you will feel better over time, as you as still close to your surgery date. The anesthesia can make you tired as well as the surgery. It is an assault on your body. My exhaustion the first year was really strong. Sometimes I didn't have the energy to get off the couch at all. That still comes sometimes, almost 2 years post TT, but it's not usually as bad as it was before. I am still too tired to work, which is against my nature, but I finally had to give in. I haven't found anything to cure it. My doc says it's not good to take T3, so I haven't. Keep us informed if you find an answer.

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It sounds like your other medical conditions might be playing a part in your fatigue? It took me about a year to get to feeling back to normal; adjusting my dosage (I now take 6 pills, and 1/2 pill each week of 137)---I, too, was on a dosage that was wrong for me in the beginning, though tests showed I was normal....I was 4 months post baby delivery when I had my surgery...my daughter was about 6 months at the time of radiation treatment, so I had the issues of baby deliver recovery and female hormones, too, that I think played a part...and my weight changed (for the better, eventually :) as the year progressed...all a part of post-baby, but affecting my dosage, and my response to it. And, of course, getting up every night, 2-3 x a night with baby also postponed my feeling normal :) She finally slept through the night, sometimes, at 10 months...:)

I think all of us have some "extras" in our lives, whether medical conditions, family stress, just other external, and perhaps internal factors that play a part in our recovery, and , as we age, too, recovery takes longer....I'm about 3 1/2 years post surgery, and finally, consistently, feel pretty normal. The first year is hard, stressful, and we all lose patience with our recovery time, I think.

But, keep asking questions of the doctors, keep doing your own research as you can, and perhaps find a thyroid cancer support group near you to go to, and talk to others in person. The closest one for me is at least an hour away, but at least there's that.

Good luck.

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I just had my thyroid and lymph nodes taken out 2 weeks ago today. I thought i could go back to work. I am a hairdresser and after 4 hours, i hurt so bad. My throat doesn't hurt, but my back and neck muscles are so sore. Everyone keeps telling me to slow down but i feel if i do i am giving in to the disease and i WON'T give in. I do notice that i get tired a little bit easier but i am still going strong. I go to the endo on March 31, i have to travel about 2 1/2 hours to get there, but i have Medullary cancer, so not to many people know much about this. I just hope the Dr can get all the meds regulated so i will start feeling a little bit stronger.

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If you are "wicked tired" then I can only assume you are a New England soul! Anyway, I find that I, too, am always tired. I was diagnosed with stage 1 Papillary Thyroid cancer last June 1, and because of more immediate medical needs, didn't have my TT until Nov. 22, 2010. Anyway, I had RAI on Feb. 16th of this year and am still working on getting my meds adjusted to the correct dosage, so the fatigue is still here. I had a ferritin test done last Monday, the 7th, a more precise iron test. I have had severe anemia in the past and the Dr. is concerned that this is a contributing factor. Of course, I live an insane life and work full time as a teacher of high school children with severe emotional and academic needs, at an alternative high school, high stress job, and I am Co-Chair of our community Relay For Life Campaign, so lots of meetings and planning sessions there. Give yourself time and make sure you get to bed at night, advice I need to start following. We will all get through this.

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Hi,

Had my surgery Sept 2010. I was immediately given a script for a low dose Levothyroxine when leaving the hospital. Also, my surgeon squeezed some hormone out doing surgery, so that I would not become hypo immediately. So, therefore, I never got to the state of low energy. It was only after I was on the Levo for a while that I began to have all kinds of negative symptoms, including fatigue. Long story short, it was the Levothyroxine not converting to T3 in my body. I was also on Synthroid 100 mcq, which made me feel as if I was dying. What I am saying, is that my old endo was keeping me sick with these meds. I do not take synthetic meds anymore, and I am now on a T4/T3 med. I also have a new endo who started me on this regimen. I am feeling way better than when I was on T4 only. A great part of feeling good with this condition is having the meds titrated to symptoms. I would suggest a TSH, free T4, and free T3 be done. This way your dr can tell if your cells are getting what it needs.

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