Cancer & total thyroidectomy complications

[shelly98]

Gosh, not sure where to begin.  Brief background first…33 year old, used to be active female, no kids.  I had a nodule removed from the left side of my thyroid in June 2006.  Test results came back that it was cancer, even though all the 3 years of previous testing and monitoring showed that it was benign.  I had another surgery in July 2006 to have a total thyroidectomy.  Went through RI trt. in August 06.  My 2007 yearly tests showed that the cancer hasn't returned so that is awesome news!!! However, since the first surgery I have felt like total and utter ****.  You know...the smelly kind on the bottom of your shoe that no one seems to like or talk about!!  Sorry...bad joke.   Anyway, it's been 1 ½ and I have still not gotten back to my pre-surgery self.  I was extremely active, outgoing and always on the run.  It takes everything in me just to make it through the work day.  I sleep all the time and when I am not sleeping, I am constantly jittery, lethargic and have that “just not quite right feeling”.  During this time I have suffered seizure-like episodes where I get extremely cloudheaded, heavy headedness, and if it continues I have partial paralysis in my extremities, usually left side is worse. If I don't sit down I will collapse.  I can feel these epis coming on so that is a plus.  No rhyme or reason to the epis…I’ve been at a ball game, sitting on the beach (my favorite spot in the whole world) and even @ work.  I've been to a plethora of doctors, nueros, cardios, endo and they ruled out epilepsy and heart problems. One doctor went so far as to say that it’s in my head until I showed him the video tape of one of my episodes.  Let’s just say not my best on air debut!! It was my chiro who finally pointed my in the right direction.  After having a tilt test ( not something I would recommend to people looking for something fun to do…hands down, the worst test I ever did) I was told that the doctor damaged my vagus nerve during the surgery and there isn't much hope for trt, only can treat the symptoms. In short the vagus nerve controls blood pressure, oxygen supply to brain and as a result I now suffer from vaso-vagus syncopy or “ fainintg episodes”.  But this doesn’t explain all of my symptoms. It just doesn’t quite fit, nor has the suggested treatment (increase in fluids and salt) seemed to help.  Talked to the surgeon and of course they said that isn’t possible and can’t offer any help or guidance.

Endo doctor doesn’t think there is much more she can do for me because my levels are okay.  I am on 150 ug of Synthryoid and my TSH level was .04 in July.  Same thing with the family doctor, he just put my on Lexpro to control the anxiety.  This didn’t help and I have since stopped taking them.  I am just looking for guidance to see if there is anything else I can do so I can get back to normal…it’s been a crappy year and a half and I am hoping this isn’t what I have to look forward to!!  I try and remain upbeat and positive about it all but I just want answers and to feel like me again cause this sure isn’t it!  Has anyone else had this problem and can shed some light on the subject?  Thanks a bunch for listening.  

[KuppND]

Have you had your free and total T3 and T4 levels monitored? Some people cannot adequately convert T4 to the active form T3 or it is bound. I happened to be doing a search to look for information regarding link between thyroidectomy and vagus nerve adverse affects, saw this message board. If you are only on Synthroid/levoxyl, there is a slight chance this may be an issue of not getting the right combination of t4 and t3. Ask your doctor to run all thyroid markers listed above. If free or total t3 are low, a little cytomel (t3) may be very helpful. I am a naturopathic doctor practicing in California and I see a lot of people with thyroid conditions. Hope this may help one of you.

[ChitChatNine]

Not sure about how it will soon be over  ???  ... if the Synthroid is producing symtpoms it isn't right dosage ... I think we have to keep in mind  it is long-term usage (rest of life) for cancer supression .... so I am confused as to how it will "soon be over" ?  I know we all accept it and move on and don't dwell on it but if producing negative symptoms that might be able to be corrected it is worth a shot at it don't you agree?

PS:  I haven't seen anybody new on the board having radiation ..... it was so nice to see you pop on board ..... have they considered modifying your dosage so you feel better????

C~

[KBo13]

They had me on .163mg of Synthroid and my TSH was .047 and I too felt like that stuff on the bottom on your shoe.  They changed my dosage to .150 and life got a little better, a very little better.  I just keep telling myself that it's a cancer treatment that it will soon be over.  

Hang in there and best of luck.

[SVETA]

O my god! It looks like I am not alone. All my problems started after TT and RAI due to thyroid cancer. I had TT in October 2006 and RAI in December. My levels are good too. (TSH 0.02 and TG 0.2). But I got all kind of problems now. Severe legs, knees pain
And now strange bumps on my tights (My surgeon will remove one of these to see what it might be). MY endo decreased dosage of Syntroid from 150, then 137, …125.
Then when my leg pain did not get better she switched me to Levoxyl  (112mcg). It’s been 3 weeks, but my leg pain is not getting better (now for 5 month) I went to 3 different doctors (reumo., GP, surgeon), did bone scan (results negative)
I tried Liryca for pain ….did not work. My family doctor gave me Lexapro for anxiety.
I was a healthy 33 y.o. female before and now I feel like …all the time. I also want to know where is the light of this tunnel. Thanks for listening and god blesses you all.

[ChitChatNine]

I, too, am on synthroid for cancer suppression and I cannot tolerate the anxiety at 0.7 levels .... I was getting anxiety at that level so we are now tinkering around with dosing to try to be below 1.0 but also a quality of life.   I can tolerate 88mcgs daily so am going to stick with that and throw in a 100mcg tablet ev. 7th day to tweek that TSH along but not be on the higher dose all the time as it causes anxiety.

I am wondering if an adjustment in the Synthroid (a mj. adjustment) may help your symptoms????? I know with true panic attacks I would get that numbness you describe.  My friend's young daughter fell 2X with that vegus nerve you describe .. she ended up with stitches both times and in her case it happened after using the toilet (that nerve is triggered during urination) and happened @ school once, too while getting up too fast.

0.4 may be CLINICALLY ok for your cancer supression but NOT FOR YOU????  My Endo has clearly made a point that she wants me to have the best cancer suppression coupled with QUALITY OF LIFE .... so we'll do the best on the Synthroid that I can do w/o anxiety and keep as close to TSH <1.0 for cancer supression but, honestly, if I go a tad over 1.0 I am ok with it ..... my normal was 2.0's - 3.0's all my life so this is a shock to my body .. I don't think EVERY person can be ok on < 1.0 ???????  also, wanted to add that I have a 3mm nodule on the intact side that we watch closely so I really am a candidate for supression based on that alone but they think it is like the other 2 benign nodules removed in Jan .. my cancer was incidental finding in two other tumors found in the gland on final biopsy (pappilary).

Cheryl (1/07 thy ca ... 6/07 early melanoma - stage I fully gone)