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I had a complete thyroidectomy 20 years ago because I was diagnosed with papillary carcinoma. I presently feel horrible and need help. My history is below....I would appreciate your suggestions.

I hope I don't discourage any of you but I have been at this for 20 years! I am now at the point of utter frustration and so have been surfing the web looking for others in the same situation. A little history.....my thyroidectomy was in the summer of 1990. I had I131 treatment that fall. I never got my energy levels back until I discovered a book by Dr Ronald Hoffman, "Tired All the Time". He mentioned prescribing Cytomel (T3) along with the Synthroid or Eltroxin (T4) and found his female patient had excellent results. I talked my family doctor into it and had several "normal" years. Coincidentally the day I found the book, I was in Edmonton seeing a neurologist for tests on my hands due to carpal tunnel symptoms. (The numbness in my hands disappeared once I was on the Cytomel!) We moved across the country in 1994 and so I had to change doctors. My first endocronologist was not alarmed that I was on the Cytomel....his first question was always "how do you feel" and then he would look at the bloodwork. When he retired, the new endocronologist was more interested in the bloodwork and not so interested in how I felt. My levels were deemed "too high" (on paper!) at one point and the prescription for Cytomel was not renewed. A few years went by but slowly I was beginning to lose energy, wake up feeling like I had never slept, numbness in the hands returned, stiffness in my legs, shortness of breath and so on. When I couldn't take it anymore, I called the Endocronologist and begged for the Cytomel prescription. Just a day or two and I would be feeling the best I had felt in months. Again all would be well for a few years and then the decision would be made that I was "too high" again. The last time that I had to give up the Cytomel (fall of 2008), I was having almost constant heart palpitations. I am presently on a dose of .175 of T4 but by December of 2009 I could start to feel the "crash" was coming again. Two months later, I have all my classic hypo symptoms back. My endocronologist refuses to consider the problem is my thyroid meds. She has told me she believes it is "something else". I have been to my family doctor recently and told her how I am feeling and since she has no desire to get involved with the complicated business of suppressing TSH she has suggested B12 and CoQ10 supplements! Only when I told her that I was short of breath did I get her attention. She has requested bloodwork and I note she has requested my B12 levels. Here's where I am at.....I'm frustrated. I can't get away from this vicious circle of feeling good, then crashing, then begging for someone to listen and so on! I am otherwise healthy. I mostly see the doctor on just an annual basis.....for my annual physical. I don't avoid the doctor because of cost....I'm Canadian....we pay in advance (taxes!!). But I am beginning to get the feeling from my endocronologist that she is "tired" of my ups and downs with my symptoms. My bloodwork is perfect .....what's the problem?! I describe it to others in this way.....I am sitting on a fence and can never sit up straight for long.....sometimes I lean forward (hypo) and other times I'm leaning back (hyper) all the while just wishing I could sit up straight forever! How I miss my thyroid! I guess there was no choice once the cancer was diagnosed but for any of the doctors and pharmacy types out there, synthetic thyroid hormone replacement is not perfect. What I don't understand is why can't they reduce my T4 and re-introduce a small dose of T3? I think Dr. Hoffman is correct when he says that some don't convert the T4 into T3 efficiently and I believe I am the classic example of that! I have been totally off of my thyroid medications three times......once prior to the thyroidectomy (I was on T4 prior to the cancer diagnosis) and twice to prepare for the I131 treatments. Three times is enough to learn what it feels like to be hypo and yet it seems my doctors forget I have that experience. To those of you just starting out on this adventure, I hope my reality is not your's and that you have more luck with your replacement therapy. But if you do start to have problems, I highly recommend that you keep a diary and ask each and every time for a copy of your bloodwork. I have done neither and now wish after 20 years that I had! It is all there in the doctor's file but given our healthcare system in the north, I'm not so sure that any of that information is actually mine (in an ownership way)! Since I am just 49, I am going to start now to once again be as assertive as I was when the lump was found in my neck. I demanded answers and explanations then and I didn't take no from a surgeon when he told me it was "just a cyst". I hope to get a referral to another endocronologist for a second opinion but again that is not so easy with our healthcare system. The thought is.....you HAVE one already! And I want someone to explain to me WHY they can't reduce my daily T4 amount and re-introduce a small dose of T3. To me, that is what needs to be done at this point.

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I was diagnosed with Graves Disease almost 20 years ago, and soon thereafter underwent 2 rounds of I131. For the first couple of years following treatment, I was on Synthroid alone. Sometime in the late 1990s, i discovered  ***this post is edited by moderator *** *** web addresses not allowed***

and after reading patient posts asked my endo to also prescribe Cytomel (happily, he agreed). Like you, my disease has outlasted a couple of wonderful endocrinologists who were less concerned about test results and more focused on how i felt, but after searching i agsin have an endo (albeit in New York City) who will prescribe cytomel. But why i am writing is to ask you if any of your doctors considered seasonal impact on your needed synthroid dosage? Mine have, noting that every fall i begin to need more and every late spring i seem to need less. Maybe it's tied to sunshine....hang in there!
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I was diagnosed with overactive (hyper) thyroid last year back in April. I also ended up getting graves disease (eyes) and I had a baby girl who is now four years old. They said it's possible it was brought on by my pregnancy or my family history. So I went through hell and back being in and out of the hospital with a heart rate of 183 and sky rocketing blood pressure...they told me surgery was the only option because of my eyes and that I would feel so much better after. I had a total thyroidectomy back in July of this year (2011) and since then have felt way worse! Even my eyes didn't improve and have felt worse! I have vision problems (blurry, double, itchy dry eyes, sensitive to wind/sunlight, smoke..) I have so many unexplainable problems, itchy, dry and bumpy skin, always tired no matter how much sleep I get. I am not working but am in school right now and the second I get home from school, I crawl into my bed and don't move all night (not kidding) and lay there till I fall asleep. Have no energy, always tired/weak, headaches, nausea, dizziness, light headed, numb/tingling, muscle spasms, cramps in my back and stomach, stomach pain, lower back pain, severe acid reflux(has gotten worse since surgery!) and a lot of times because the acid is so bad, I can barely eat. I’m so sick I always lose weight and look so pale. I’m tired and drained from not doing anything! I am so depressed and don’t feel like myself. I don’t feel like even watching tv and miss school a lot because I can’t concentrate and focus. Also having trouble remembering stuff.  And I am sick of not having energy because I have a four year old to take care of and am a single mother! The doctor just told me yesterday that they will try and lower the dosage of my synthroid which is currently .125 mg. a day.  And she also said to expect these symptoms for at least a year, possibly longer! They never told me how it might be after my surgery! If they would have I honestly wouldn’t have had it done to say the least. I am 23 and need to have energy! I’m just really glad to have come across these articles on here to know I am not the only one with the same problems! I have heard d that trying different thyroid medications may help, or lowering the dosage. Maybe ask your doctor about that. My thyroid levels are low right now so they still have to play around with my medication!<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

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I also had a thyroidectomy due to papillary carcinoma 10 yrs ago. (I'm 42 now.) Also discovered it in a lump in my neck that was thought to be a cyst for a couple years. I have been on .175 synthroid and 12mcg cytomel the entire time (with the exception of a few months before scans and when they initially started me out to find my correct dose.) Since the smallest pill of cytomel is 25mcg, I just take half a pill each day. I have felt very steady and my blood tests have been consistent, but I do feel a huge difference within a couple days if I skip the cytomel. (less energy, more irritable, etc.) Knowing what it feels like to go off the meds for the scans, I feel for you and hope you find something that can even you out. I have at times taken Vitamin B-100 supplements, I try to take Vit. D-3 (2000 mg/day) though I'm not consistent with this. I'm hit and miss with other vitamin and mineral supplements (calcium, magnesium, C, etc.) I find that I do feel really good when I get into a regular exercise pattern, and I still do best on 9 hrs of sleep. I use a lot of natural remedies, herbs, essential oils, etc. for other problems, but I stick with the Synthroid/Cytomel mix because I know it works for me. Have you considered looking into alternative or natural thyroid hormones to see if they work better for you? I wish you success in figuring out how to feel your best.
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I also had a thyroidectomy about 12 yrs ago and have had no problem until the last few months. Have been on .175 synthroid and started feeling fatigue, tremors in hands and torso, depression, shortness of breath, irritability. Doc lowered me to .137 synthroid and immediately symtoms disappeared. 6 months later now and they are back.

Could you please elaborate on your symptoms when you skip cytomel dosage.

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Best of luck to you.

Phil Baldwin

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I have just had my thyroidectomy in January 2013. IM 44 yes old female. IM feeling like my whole body hurts that IM carrying around cement blocks all the time. IM not sleepy just have no strength. IM going to the doctor this week to see what i can do. IM depressed all the time and just want to hurt anybody that comes near me. IM not a violent person. My emotions are running amuck. Plus i think i may be going thru mentapause. Oh God just please help me i pray. I hope i don't loose my mind over all this.
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I had mine out 12 years ago and had no problems until about 2 yrs ago.  It is all about the dosage.  You  are NOT going crazy or anything else.  I have felt the same way...tired but not sleepy, weak limbs, strange anxious thoughts and depression.  It is all about the dosage.  Get with an endocrinologist and pray a lot.  It WILL be better.  God bless you.

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Hi I'm Rudlea and I've been Thyroid free since 2007 for a huge goiter and thyroid that was so large it was from ear lobe to ear lobe. Before my Thyroidectomy I was hypo it seemed forever until something snapped into hyper. I had two thyroid storms! After the emergency Thyroidectomy I was placed on Synthroid 100 mcg. I felt someone had placed cement in my feet and then my shoes forever. It was hard working daily unable to move at such a slow pace. I've never been asked to try Cytomel and never heard of it until now. I'm eager to try it but there are dangers I face if I'm tripped back into hyper once again. Sigh, I have gained 80lbs and wasn't doing good. I had a new doctor who raised my Synthroid to 150 mcg and I feel a tiny bit better sometimes. My friend asked me to try Selenium 200mcg and I did for four days before I was in danger once again! Everything seemed to shut down and my doctor had me not taking my synthroid for a week to see what would happen. I'm feeling better and more myself thank the Lord with all of me. I have yet to try the cytomel and will speak to my doctor about it with the possibility of lowering my synthroid back to 100mcgs of what you have written. I don't want any crashing in or for my life at present. I do wish there was a way to have thyroid transplants for I would be first in line. I'm also surprised there are not synthroid patches on the market but who knows. I don't believe there are any real answers since we are all different. That's why i don't see how Synthroid can be used by all for different problems in the same diagnosis.
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Try taking hemp seed oil it has Omega 3,6,9 all amino acids. Amino acids are building blocks of all protiens in body including T4&t3. Turmeric also helps with metabolism soyou would feel fatigued. I had thyroid cancer. Surgery in feb 2013. Ive been taking these and they have helPed so much. Levothyroxine also has bad side affects. I could not take I was a raging bull!!!
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Hi, my life was changed from hell to heaven after switching to natural thyroid medication. Google: Armour thyroid medication, RLC Laboratories and NP Thyroid. Good luck! Monika

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It's been 5yrs since I had my total thyroidectomy. Only for the first six months after I felt normal. I cannot sleep without meds, I feel like a low tire on a car, still able to roll but could perform much better. For the past two years I have been seeing an orthopedic for muscle and joint pain. Nothing has made me feel better, the nerve pain just keeps getting worse. This has really put a damper on life in general . Has anyone had the nerve pain from having no thyroid? And what should I do for this?
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