# Thyroid removed due to cancerous nodules



## Barb (Sep 2, 2016)

Hi Everyone , 
I'm new to this forum stuff but really need advice. I had my thyroid removed 3 years ago due to papillary cancer. At first it was a nightmare. I felt so awful but my doctor said my levels were just fine. Then I though maybe I had Lyme disease cause I work at a nature sanctuary and get bit a lot. First test was negative but false negatives are not uncommon. I went through a brain mri and lumbar puncture to rule it out. Came back normal. Went back to my doctor and said I couldn't take feeling this sick with mood swings, depression, brain fog etc. I do have a history of depression and anxiety but this was so different. He finally saw me again right away which I demanded which I'm not usually like this but desperate. At the time I was on 88mcg of synthroid. He said maybe I needed some T3. He gave me 5mcg of liothrynine to cut in half. 3 days later I felt normal! Anyway this year 2 weeks before I run a summer camp I started to get mood swings , sweats and so tired. I even had to sleep in my car between camp periods. My levels were once again normal. He wanted me to lower synthroid to 80 thinking I was too hyper. Anyway 8 weeks later I can hardly get out of bed I am so fatigue, I have lost 20 lbs cause not hungry, my muscles ache occasionally and feet cold. I also get sweats. I can only go to work at night to take care of sanctuary animals. My appetite then comes back. It is not the same as depression and anxiety. If I am forced to do stuff during day I feel like a walking zombie. I am usually extremely energetic and athletic but not now. I feel hypo but I think I would gain weight if I had that. Any suggestions??? Thanks for reading this long forum!


----------



## joplin1975 (Jul 21, 2011)

Can you post your exact results with your reference ranges? We can be so much more helpful with that information.

Even without that information, it would be really odd for you to have had a total thryoidectomy and be on that low of a dose of meds. Are you a particularly small person?


----------



## Barb (Sep 2, 2016)

I will get you the results when I get home. I'm 5/2" and weigh 145. Now after this entire ordeal I'm down to 130. He did the t3 and t4 bloodwork but don't remember numbers. Thanks so much


----------



## my3gr8girls (Mar 18, 2016)

You might try taking your levothyrixine at night if you're currently taking it in the morning. Or vice versa. For me, I have terrible fatigue for about 8-10 hours after taking levothyrixine so if I take it at night I sleep through that part and feel alert during the day.


----------



## Barb (Sep 2, 2016)

Hi Thanks all for the advice. I use to take it at night but the bottle said to take it in the morning so I switched. Here are my last bloodwork done during my summer camp I run I felt so awful. After these results my doctor thought I was too toxic so lowered me to 80 mcg a day plus the T3 which is 2.5.












Hard to see this but you can click on them


----------



## joplin1975 (Jul 21, 2011)

Well those are strange labs to run.

Total t3 isn't very helpful - it really has to be free t3. But even your total number is way low.
And not to run free t4 is bizarre.

You likely need more t3 but it's hard to say with those labs.

One more time - are you being monitored for recurrence?


----------



## Barb (Sep 2, 2016)

I have an appointment tomorrow and he will probably be running blood tests and one for recurrence. I am ready to go to Boston because he never explains anything really well. Today was a fairly good day and was able to get up but don't know if I am coming or going. I'll let you know tomorrow what goes but am going to ask him about free t3 and free t4. Thanks so much for your input and helps to see your labs too. I am not ever going to go 6 -8 weeks again feeling like crap and not even having a summer to enjoy! I have several good people mentioned for a second opinion. Barb )


----------



## joplin1975 (Jul 21, 2011)

Make sure you get an ultrasound.


----------



## Lovlkn (Dec 20, 2009)

If you had cancer - your doctor should be suppressing your TSH and he is not.

There are two ways to do that, T4 only or a combo of both T4 and T3 hormones - mine did not totally suppress until I added Cytomel.

Having both FT-4 and FT-3 run is best - falling somewhere between 1/2-3/4 of range is where most of us feel best.


----------



## Barb (Sep 2, 2016)

Hi folks, Thanks for all the feedback. Turns out I was hyper and that is why I was feeling so bad. Doctor lowered my synthroid from 88 to 75 mcg. Been on new dosage for 10 days. Was starting to feel a little better until today when the sweats started again, headache, achy calfs and jitters (anxiety). He didn't lower my T3 and now I'm feeling like maybe he should have. I think my weight loss caused me to become hyper cause the 88 was fine when I weighed 145. Here are my results. I'm hoping my symptoms now are due to too much T3. This has been so aggravating but plugging along. I did start taking my thyroid meds before bed on am empty stomach which did make the tiredness in am a little better. Thanks everyone for any feedback.


----------



## KeepOnGoing (Jan 2, 2013)

I don't like to be awkward, but those results don't scream hyper to me! The TSH is slightly low, but T3 and T4 are nowhere near the top of the ranges. If you are a thyca patient who should have a suppressed TSH, depending on your precise circumstances (which make a lot of difference on this one), some doctors might feel it's a bit high still!

Personally, as soon as I started taking T3, my TSH dropped to almost zero (which was considered a good thing as it's supposed to be suppressed). On 150mcg T4, it was 2.3. Add 10mcg of T3 and it dropped to 0.03!

The important thing is whether you feel better?


----------



## Barb (Sep 2, 2016)

I am so confused. I was told I'm on low risk for cancer to come back. I had clean margins and had no radiation. I have another ultrasound coming up and I have had blood test to screen if cancer could be back. I'm going to have to do major research. Thanks for feedback. Stil don't feel like myself.


----------



## jenny v (May 6, 2012)

I would ask your doctor why he thinks those results are hyper and if he says it's because your TSH is low, I would find a new doctor. Post TT patients have to dose by Free T3 and Free T4, not TSH.


----------



## Barb (Sep 2, 2016)

Hi everyone,

My doctor threw me under the bus. Doesn't know how to get rid of my fatigue, malaise, no appetite. He thinks it is not thyroid related! I beg to differ. He even told my I could try whatever to see if it works. I was shocked!.I am seeing a specialist in Nov. but that is still a long way away. Here is some of my history. I am so frustrated!

June 2016 Felt great...Wt. 145, Synthroid 88, Cytomel 2.5 msg

July: lost around 5 lbs and went to the downward spiral of being hyper which caused sweats, heat intolerance, nausea, fatigue etc. I figured because he didn't lower my meds.

August: He lowered me down to 75 of synthroid. Took me off T3 due to heart palpitations and anxiety. At his point I was off his chart and very hyper. I found out there is more than one result chart they go by. I am low risk cancer recurrence so don't need to suppressed as much I guess.

Any way the other day I had an ultrasound and everything looked great. He did A free T4 and Tsh again. I weight now 128 and feel absolutely wiped out. Like I had the flu and am trying to get over it. Really tired, fatigue, no appetite except at night though I force myself to eat. Tried a little T3 (he said go again cause he doesn't have a clue) and it made me feel awful. I took literally a crumb but I am really sensitive to drugs. Gave me sweats, anxiety and diarrhea. So now back on just the 75. Thank god i can go to my job late in the day if I want. Today slugged out in bed until 4. Yesterday went to work all day but by the time I got home the fatigue was debilitating. I know it is thyroid related which is what gets me upset.

Here are the labs he took. Any advice. I am so confused. He said the smaller the TSH number the more hyper you are. Right now I am 2 and feel more hypo. In Aug my TSH was .213 and free t4 was 1.39

My results from other day are:









View attachment 785


Can't upload Tsh but was 2 (between .27-4.2)


----------



## Octavia (Aug 1, 2011)

Your August results were much better. Were you feeling better in August than you are now?

75 is a very low Synthroid dose for someone after a total thyroidectomy. I think your doctor doesn't know what he's doing.


----------



## joplin1975 (Jul 21, 2011)

Have you tried anything other than synthroid? I agree with Octavia that that low of meds is really, really odd, but you certainly had tried the higher doses with no avail. I'm wondering if you are having a reaction to the filler in synthroid? Have you talked about trying Tirosint?


----------



## Barb (Sep 2, 2016)

I've been on synthroid for 3 years. He never tried anything else. I'm hoping the new doc will have new ideas. Can a drug stop working for someone. Could the wt loss screwed me up? I heard about the non filler drug but seems like people have had problems with it. Has anyone had luck with Armour? It just is so weird how I was fine up to end June. The highest synthroid I was on was 100 and got too hyper. That's when I went to 88. Because then I still felt gross he added the 2.5 of liothrynine. I felt great. I just feel so confused. My daughter is going to start being my advocate and go to my appts. Before all this happened I use to hike, ride my bike and horse and work hard taking care of my little farm. I was always busy doing something. I also run a nature sanctuary which also requires high energy. We have 30 animals and I run a huge egg hunt and summer camp. This year running camp was a nightmare due to the fatique and mood swings. Doctors don't know what your activity level is normally and I honestly dont think they realize how debilitating this is. They always ask, are you sure your not just depressed? I have had depression and this is not the same. Yeah I'm depressed because fatique!!! some people I know think you can just snap out of it. They don't realize the thyroid runs everything. Thx everyone for support. It is really appreciated.


----------



## Octavia (Aug 1, 2011)

This is all very odd. Other than a low TSH in there somewhere (well, that and your low drug dose), your results don't scream thyroid level problems to me. So now I find myself wondering if you don't have something going on that's unrelated to thyroid. For example, I'm 5 years out from my thyroid surgeries, and a couple of months ago, my doctor ordered a Ferritin test due to some symptoms I was describing (always cold, restless legs at night, fatigue, etc.), and lo and behold, my Ferritin level was very low. I'm now being treated for low ferritin, and I'm no longer as constantly cold as I used to be....but before that test, I was convinced that what I needed was a boost in my T3.

Have you had a complete blood count done recently, by any chance?


----------



## Barb (Sep 2, 2016)

I had complete bloodwork in July. My primary care doctor checked Everything including tick diseases. I'm going to have her repeat them (no tick). I'm on vitamin D and everything normal. Could this be adrenal fatique? Also what you had tested is that done in a normal CBC. I feel more hypo now. Just sooooo tired.


----------

