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A year after full thyroidectomy because of Cancer - new symptoms

Last year I had my thyroid removed because of a lump that had cancer. I also followed that up with a treatment of RAI. I just had a scan and no thyroid cells can be found at this time. I also had an ultrasound done on my neck...nothing looked abnormal.

Now, though, I am having CRAZY symptoms. I don't know if there is a relation, and/or if it is another type of cancer.

I do have an appointment with an ENT tomorrow, so I am hopeful for finding something out, but if you have any other thoughts, things I could think about, that would be great.

I have been having tons of problems with my salivary glands swelling. My endo said that, that could happen about a year after RAI but disappears. Mine is NOT disappearing. I make myself sick eating sour candy, which seems to be the only thing that helps the pressure and swelling I feel go down.

On top of that, I also have throat problems...swelling, and pain...not always like a sore throat from a cold, but actual pain. I also have EXTREME fatigue. I sleep a good 8 hours every night, roughly, and still just wiped out all the time. I also feel like I have a "lump" in my throat. Since I recently had an ultrasound, I could see myself that there wasn't much to see on there. But I have no idea what could be causing this.

This has led me to call 911 once because of difficulty breathing. My vitals were fine, though, so I didn't go to the hospital. I decided to go to Urgent Care, where I was prescribed, yet another, antibiotic...Biaxin, this time. HORRID stuff!

Anyway, then yesterday I did go to the ER with problems breathing. Since my vitals were again fine, I was sent home and told to call an ENT today, which I did.

I have other symptoms also, but not sure if they are related. I have also wondered about mold.

At times if feels like I want to rip something away from my throat so it won't bother me anymore. I will pull at the skin, hoping to "readjust" whatever could be there. I can't sleep on my left side because of the pressure I feel on my neck. So I sleep on my right side. Once I fall asleep, it seems I can wake up in any position and be fine.

Also, my throat will swell, feel tight, although breathing is not totally cut off, and it will happen quickly, then go away, then come back...freaks me out, I panic!

I also have a feeling of a "tired" tongue quite often, and also slurred speech, not so bad that others really notice, but I really notice.

Any thoughts?

I have already considered a secondary cancer, a polyp, a mass, or something. Am I missing something?
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First Helper Frustrated88
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replied July 12th, 2011
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Unfortunately, I cannot provide you with answers to all your questions. As a fellow thyroid cancer survivor (5+ years), I understand some of what you are going through and can give you some information, but not as much as I wish I could.

I really think your fatigue, and general aches and pains are related to your thyroid medication dose. I was going through the same thing for about a year after my surgery/RAI. I was told my TSH was fine, but I still felt like crap. Tired, achy, foggy headed, depressed, I just didn't feel like me anymore. After some research, I found that some patients do better with a combination of T3/T4 medication instead of the standard T4. It's controversial and mostly anecdotal but I can say in my case that it made all the difference. So instead of taking just Levothyroxine or Synthroid by itself, I also take a small amount of Cytomel (which they probably put you on before your RAI before you stopped your thyroid meds altogether) My TSH is still where my doctor wants it, but I finally feel like me again.

I would ask your doctor about it. There is another type of thyroid replacement medication out there that are made from natural sources (ie. Armour Thyroid), but I would discourage you from using them, since they are made from natural sources it is less consistent than the others and consistency is soooo important, especially with those of us who depend on this stuff completely. Also, the level of T3 in them is higher than recommended. (By the way, this combination T3/T4 mostly only helps patients who have had their entire thyroid removed or have little to no thyroid function, not ones who only just have some hypothyroidism, since they still make T3 on their own. It also isn't necessary for those who feel fine on the conventional T4 therapy.) I would encourage you to do some research about it and bring the information to your next doctor's visit.

As for your throat problems, that is more difficult. I do have a tiny bit of what you are experiencing. I can't stand to wear anything around my neck, even a t-shirt that comes above my collarbone because it feels like it's choking me. Things that press on my neck bother me, like when I go to hug people and their shoulder presses on my neck a little, it's really unpleasant.

But to have it like that all the time with nothing there, I think it is much more than just normal after surgery sensitivity. Some people do have trouble swallowing, but it should get better over time. Was it like this from the beginning or has this come on over the past year? If it was like this from the beginning, that makes me wonder if it was a problem with the surgery itself or with how the scar tissue formed. Perhaps a nerve has been affected.

Have they done any kind of scope of your throat to see if there is an obstruction or swelling?

From what I'm reading, massaging the area can help with the tightness. It should loosen the scar tissue, but it could take some time. One person on another message board said that she went for a type of physical therapy called lymphadema, where you lightly massage the skin to drain the lymphatic fluid along with some massage that stretches the fibers around the incision and the person said it has made a difference in her throat tightness. It might be something to research further. She also said that neck and shoulder stretching exercises the therapist showed her helped, as well. It's not regular orthopedic PT, so you might have to look around a bit to find a place that does this specific type.

As for it being another cancer or mass, I think it would have shown up on the scans.

I really hope that something I've said here can help with one of your problems. I know how it is to feel like you're all alone, when the doctors aren't listening and you feel like there isn't any help out there. Sometimes all you can do is find the answers yourself by researching, then ask your doctor a ton of questions, push as much as you can, and hope for the best. It may not happen overnight, but I do believe this will get better for you.

Keep in touch. Post again if there are any new developments or if you have any more questions. I wish you all the best. Smile
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replied July 12th, 2011
Honestly, I do remember taking the combination of meds like you mentioned shortly after surgery, after they have you off of thyroid medicine for a couple weeks. I can honestly say, I have NEVER felt better than when I was on both meds. I have wondered this before, but now that I know someone else out there has had great improvement doing that, I will definitely talk with my doctor about it again.

As for the throat thing, I just saw an ENT today, and they are going to do the barium test to look at my swallowing, then they will also be doing a scope of my throat, and I'm also supposed to see a neurologist as soon as an appointment gets scheduled.

I think what scares me the most is that there is something going on that is terminal. I have two small children. I just want to feel "normal" again so that I can even just want to do fun things with them again instead of wasting the day away napping or doing as little as possible.

My next concern is we have no insurance...no money...nothing. My husband told me today we will just do it, and hope it works out. What other option is there? Aside from asking for some financial assistance as we go, I have no idea how we will swim out of this debt, but if I'm still alive to swim out of it, I guess it's worth it? Anyway...thanks for the reply!!
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replied February 19th, 2012
Hello,

Like many here: Tired, Depressed, weight gain, frequently sick; very low energy.
Almost a year since my Full Thyroidectomy for multiple nodes. I too, am experiencing bouts of "Depression" like symptoms, feels like I am sick almost every 10 days. Not to mention the 25# I've gained since the surgery. We just cant seem to get my meds straight.

The Endo put me on 112 Levo straight after surgery. After my first blood work check my levels were extremely low. My primary was shocked by my Endo's prescription stating why not 25 or 50??????? She then changed it to 100.

Question to those of you with more time with this: What does the Dosage mean?
Was I gaining weight at 112 because it was too high? am I still unable to lose weight and maintain normal energy levels due to her only dropping it to 100?

After 2 months at 100 with no change; Admittedly I have been "self-adjusting". When my Doc was shocked by my not being at 25 or 50 of Levothyroxine; but then switched it to 100, I thought maybe she was trying to slowly bring it down to 25 or 50. Not wanting to wait to have my energy back (and weight loss), I opted to take half of her dosage (50). I am finally starting to maintain weight and lose too; and my levels are within range. But I am still having issues with bouts of depression like symptoms, memory loss, headaches, extreme fatigue and erratic changes in energy. Some days, I just can't muster the energy to get out of bed; other days I am non stop!?!?!?!?!?

Frustrated!! Any advice is welcomed and appreciated!
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replied February 20th, 2012
Well, I am working on a year and a half now, and things have improved. I found out a HUGE problem I was having was some sort of anxiety disorder. I still am having that problem, but I am managing it naturally and successfully!

It seems like if your numbers were low, then they would up the medicine. I am at just over 100 myself. After my surgery I started at 137 mcgs.

Seriously, whether you are hyper- or hypothyroid you can experience similar symptoms. Oddly, when I am hyper- I get SUPER tired and sluggish, and eat like crazy. When I am hypo- I get like mentally crazed...and that's the best way I can explain it. I get a little frantic mentally. Either way, I don't get jittery and start losing weight...ah...such is life!

Self-medicating is bad. First, it takes a couple weeks on a new dosage amount for it to start working properly. You need to be on a certain dose for at least 4-6 weeks before you can get another blood test to see where you are. I get bloodwork every six weeks roughly, unless I am feeling really off, then I request a sooner test.

Every person needs a different dose. It depends much on weight, size, and just your own personal body chemistry. I currently can't be at 100 because that is way too low for me. Often doctors want to keep you on the high end of normal for your TSH levels.

This is what I find true for myself, and I hope it helps you. Despite my thyroid dose, I feel better if I exercise regularly and get up and get moving. If I lounge around for a day, I get SUPER weak all over, etc...just like what you mentioned.

Also, I supplement with other things to help my body function better without the thyroid. One thing I need regularly is L-Lysine. I take one tablet with breakfast and one with dinner. Also, make sure your B-vitamins are in check, especially your B-12. The B-12, if low, can cause everything you are experiencing as well.

They will never make drastic changes in your Levothyroxine dose...they won't go from like 137 down to 100. I think for the last 6-9 months, I have been at the same dose, which is pretty good that I'm finally maintaining! However, I am working VERY hard at losing weight, and my doctor told me that I may need to get my TSH levels checked a bit more often because as I lose 10-15 pounds, I will probably need a lower dosage. Hope that helps!

Oh yeah, ever since my surgery, and not having a thyroid, I get regular nausea monthly...like I will have nausea for like a week, and then it's gone, then after a few weeks or a month, it's back again, and so forth. I don't know exactly what is causing it, but it's ANNOYING! Feels exactly like morning sickness.

I recently joined a Zumba class, and started a vegan diet, and recently have been recommended to go gluten-free by my doctor, so with all those changes, I have FINALLY been able to get a grip on my weight gain. I have confidence you can do it also!
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replied February 20th, 2012
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Yeah, the weight has been a bit of an issue for me, too, but some of my problem was back pain. I started doing Pilates 2-3 times a week and I'm feeling better in all respects (and have lost about 10 pounds in about a month).

Another thing I forgot to say in my other post is that I also found that giving up caffeine has really improved things, also. I know it sounds really counter-intuitive, but I saw some medical information that said that caffeine depletes T3. I quit about 3 months ago and I feel a lot better, my mood, my over-all energy level, and I sleep better, too (even though I was only drinking coffee in the morning, usually 1-2 cups). Before, I felt really crummy and now I can tell when the guy at the coffee place gives me regular. I can feel the difference about a half hour later. Anyway, it's worth a try.

Also, for Smelborp, be careful with gluten-free because you can miss some nutrients that people get from bread, vitamins, minerals, and fiber. I've also heard that it's a bit of a fad and unless you actually have difficulty digesting gluten, it's just making your life more difficult rather than making you healthier. I mean, you are already managing being vegan, taking away more food options might actually make you more unhealthy. I would just question your doctor about why you should go gluten-free. Is it just a trial to see if it makes you feel better or is he one of those who just thinks no one should eat gluten?
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replied February 20th, 2012
I definitely wouldn't go gluten-free unless I was directed to. It is HORRIBLE! All I want right now is just about ANYTHING with gluten in it! Haha. I have been having some massive digestive issues, and gallbladder issues. The doctor suggested that I go gluten-free for a couple months, and see what happens. If there is significant improvement, then I can either stay gluten-free indefinitely or get the blood test again, which the blood test is often inconclusive anyway. So yeah. The doctor also wants me off of dairy as well, as it can be very upsetting for the digestive system, especially when the digestive system is already overwhelmed. I think it would probably be good for me to go off of soy as well, but I haven't done that yet. I will see if I manage first WITHOUT cutting it out.

Yeah, I have been doing nearly nothing but researching foods to make sure I don't deplete myself in any food group. Actually, I recently watched the documentary, Fat Sick and Nearly Dead, and I am preparing to do a "reboot" juice fast mixed with fruits and vegetables for eating for 10 days. I already cleared it with my doctor also. Anyway, it will be nice for me because the food plan should cover all nutritional areas, and it will take the guess work out for me in trying to figure out what I can eat! So, for 10 days, I know exactly what I will be eating, and I know it will ALL be vegan and gluten-free! There are a few things with soy in them, and I am considering making adjustments to go ahead and cut soy out at that time too to see what happens.

If anything, it will help me get more focused on a better diet, and will give me a break from trying to figure out all this gluten-free stuff, and also will give my digestive tract a massive and much needed break from all the garbage out there.

Oh, and I also HAD to give up caffeine several months ago. When my anxiety problems came to a head, I found that caffeine just aggravated everything, and now, if I drink a cup of coffee, I get so jittery that I can hardly function. So, it's out also. I can handle chocolate in smaller doses, so that's the extent of my caffeine intake. No caffeinated soda, tea, or coffee. I do like tea, but I only drink a soda maybe once a week or less, and obviously the caffeine-free variety. I don't even reach for decaf coffee, and especially not regular.

I do sort of wish I could go back to eating the way I used to be able to eat a couple years ago, but I guess things change. I just didn't realize they would change so early in my life!

I am literally down to water, juice, and herbal tea for drinks, and the occasional soda.

The one down side? My corn tortilla chips and salsa are gluten-free vegan...so yeah...I found an unhealthy food! I also have some chocolate chips that are dairy, soy, and wheat free...yum yum!

I also supplement with PLENTY of vitamins and minerals on a regular basis. Being vegan means I need to make sure I get my vitamin B-12 big time. B-12 is basically the only nutrient I need to keep watch on. Otherwise, the next that I am making sure to keep up on is my "complete" protein, by combining a variety of foods.

I wouldn't recommend someone do a gluten-free diet as a fad diet. If they are working on an elimination diet in order to figure out what is bothering them, then so be it, but any person should know in about 3 months or so, according to what I've researched so far!
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replied February 20th, 2012
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Actually, a higher dose would usually be associated with improvement in the symptoms you're describing.

With less Levothyroxine (or Synthroid) you'll be more Hypothyroid, which is associated with weight gain, fatigue, depression, low energy, hair loss, and many other symptoms. Hyperthyroidism, can cause increased appetite, fatigue, joint pain, and some of the same symptoms as hypothyroidism but I don't think you were on a dose large enough to cause such symptoms of hyperthyroidism especially when your blood work was saying your levels were low. And I especially don't think you could be hyperthyroid now at only 50mcg. I think it's much more likely you are hypothyroid.

I don't know if they made this clear, but they test thyroid levels through TSH (thyroid stimulating hormone), which has an inverse relationship to thyroid hormone levels. When thyroid hormone levels go up, TSH goes down and vise versa. TSH comes from your brain. Basically, it's telling your thyroid gland how much hormone to produce. When the TSH is high, it is asking for more, when it is low, it is asking for less. Also, thyroid hormones are very potent. It's not uncommon to back down by small increments to see what effect that has over 2 or 3 months. For some people, a small change can have a big effect. By essentially cutting your dose in half, that may have brought your TSH really really high.

First of all, I think self adjusting is a seriously BAD idea. You need to find a doctor who is going to work with you and find a dose that is going to be best for you. If you are messing with that yourself, that is not going to work. If you think your doctor is not listening to you, then find another doctor. Secondly, your primary care doctor doesn't sound like he or she is experienced with total thyroidectomy. 25 or 50 MCG is going to be way too low for someone with no thyroid. It's fine for a starting dosage for someone with regular hypothyroidism, but with a total thyroid removal, 100 is actually kinda in the low range for someone totally dependent on the pills.

What has your TSH been since you've been taking only 50 MCG? The risk with having your TSH too high is that not only will you have symptoms of hypothyroidism but that you also aren't suppressing thyroid cell growth (including cancer cells) the way that you should be. That's another reason you need to work with and be 100% honest with your doctor.

Thirdly, I am totally sympathetic to your problem of not being able to find a dose that works for you. I found the same problem, but you have to work with your doctor #1. #2, you might be one of us who needs what is called T3/T4 combination therapy. It's a bit controversial because some doctors don't believe it's effective, but some research and anecdotal evidence (including my own experience) says otherwise. Basically, T4 is one form of thyroid hormone (that's what levothyroxine and synthroid are), but that has to be converted to T3 (another form of thyroid hormone) in order to be used by cells in the body. T3 is more potent and quicker acting. It's most often used (in the form of Cytomel) after thyroid surgery before RAI to quickly withdraw from thyroid hormones. By adding a small amount of Cytomel (T3), some people report feeling better, especially cognitively and some report improvement in their weight gain issues. When I say a small amount, I mean 5-10 MCG with a higher amount of Synthroid to make up what you need to get to the desired TSH level. It make take some adjustments over several months.

I would encourage you to do some research on T3/T4 combination therapy and bring the *reputable* research to your next doctor appointment. Note: you will see a lot of stuff about "natural" thyroid hormone replacements, such as Armour thyroid. I do not recommend these personally because they are made from pig thyroids, which are not balanced the same as human thyroids (too much T3) and also are not the same batch to batch. It is VERY important for thyroid replacement to be consistent. If one batch is different from the last, that isn't good.

It is also very important that you take your pills at the same time every day, on an empty stomach, not eat for a half hour to an hour after taking them, and not take them within four hours of calcium or iron supplements or antacids. Again, the key is consistency. I would also recommend that you have your doctor request *brand name only* not because the generics are inferior, but because pharmacies change their generic suppliers. The active ingredients have to be the same, but because the fillers are different, you may absorb them differently, so one month, you may get one kind and the next another. With brand name, you always get the same. It doesn't matter for everyone, but with people like us who are more sensitive to this stuff, these little things can be very important.

I hope this helps. I will say that I was in a very bad place before I went on the T3/T4 combination. I didn't even feel like me, like a piece of me was lost (and I don't mean surgically), but I couldn't understand why. I did some research and now I'm taking 10mcg of Cytomel and 100mcg of Synthroid and things are so much better. It's been almost 6 years since my thyroidectomy and I'm doing very well.

Please let me know how things go for you. I hope I've helped. Best of luck to you.
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replied February 20th, 2012
Oh, and my endo won't even consider me doing a T3/T4 combination. I asked her about it, and she just simply won't do it long term.

I have to stick with generic brands because medicaid pays for mine, and that's what they pay for.

I live in an area where there is only one endocrinologist...so I guess for now, this is the route I am taking!
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replied April 16th, 2012
Levothyroxine questions
Hello. I had my thyroidectomy in Feb following a diagnosis of Thyroid Cancer. I was then put on Cytomel for a short time and felt totally fine. I went off 2 weeks prior to my RAI and have felt horrible ever since. I am on 112 mcg. Levothyroxine and take it very consistantly. I am gaining weight,and have terrible nausea. I will have my first 6 week check up and blood work following RAI the first of May....Do you think it is just too early to tell, or am I missing something? I am so tired of feeling this way. I feel just like I did when I was pregnant!
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replied February 22nd, 2012
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Frustrating.

Ask if you could try it in the short term, like a six month trial, and if it works, you can discuss going more long-term. Bring the research that says that some patients do well, there is specifically a study published in the New England Journal of Medicine. Thyroid.org (a reputable site) even says that a trial is warranted for patients who still have symptoms with TSH in the normal range. Yes, Cytomel (T3) alone is not recommended, but ask for sources that say why the T3/T4 is bad. I've seen some studies that doubt that it works, but I can't find anything that says it's dangerous (and I've looked). If your doctor has other information, I would like to see it.

If she still refuses, without any good reason why, you could do what I do (because my endo doesn't believe in it either)...I hate to say it, but get your T3 from your regular doctor and the T4 from your endo. Don't keep it a secret from your endo (never lie to your doctors!), but when the choice is between feeling how you are and having a chance at feeling better, I think it's worth a shot.

Best of luck.
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