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Feeling crummy post thyroidectomy/I131

JuniorBay
Posts: 4
Joined: Jun 2016

Hey all, new to the group and somewhat new to this whole thyroid cancer thing. I am a 32 year old female, diagnosed with papillary thyroid carcinoma (nodule was incidental finding at annual exam, aspirate confirmed PTC), had total thyroidectomy April 27th (no obvious metastisis, no parathyroid complications post op, calcium levels normal, surgery was uneventful). Started 125mcg of Synthroid once daily in the morning the day after surgery, received I131 treatment March 25th (did with thyroid injections prior instead of having to go off Synthroid and be hypothyroid for several weeks prior to treatment), full body scan done June 1st (looked clean to me, but have not gone over results with Dr. yet). I have thyroid bloodwork recheck scheduled for this Wednesday and then will meet with my endocrinologist on Friday to go over body scan and bloodwork results.

While I am grateful that this is not a scary cancer (compared to others), I am dealing with some side effects/symptoms that have affected my life and activity level. I just want to know if others have experienced them as well, if they went away or what has worked for you to decrease frequency/make you feel better.

1.) Since surgery, I have had 2-5 migraines a week which I can control with Excedrine Migraine medication, but the migraine and drugs make me feel very blobby, foggy brain and lethargic. I have had occular migraines since I was ~11yea that tend to be related to my mentrual cycle/hormones, but generally would get one ever 2-4 months. These new kind of migraines are not the same but still result in debilitating pain and nausea I don't catch them early and take meds. Has anyone else started having migraines post op? Did they improve once your synthroid dose was regulated? What have you done to decrease them?

2.) I am tired ALL THE TIME and have no appetite. I was a pretty active person before all of this and one of my favorite things in life is food. Now I take a 2 hour nap (at least, if I have a migraine, it will be longer) every day plus getting 8-9 hours of sleep per night and I fatigue quickly during activity. I have no motivation to exericise, which is really out of character. I suspect that I am hypothyroid, but have not had my levels checked yet. That being said I have seen many others on these boards who also have severe lethargy despite normal T4 levels. What have you done to increase energy? Are their supplements you have had success with? I am fine looking into alternative therapies/ideas. I am not having weight gain (thank goodness), but I am also not eating much because I am not hungry.

3.) The day after my I131 treatment, I had significant swelling and discomfort of my salivary glands for about 36 hours. Symptoms improved with Tylenol and there have not been long term effects in that area. However, starting a couple days ago, I have progressively lost most of my sense of taste (which I have read can be a side effect of I131) and have a metalic taste in my mouth. Nothing has flavor, which really bums me out (salt and sweet are both pretty much gone, sour is also not very prominent). Have most folks gotten their taste back within 6 months? Was your taste permanently changed? This damper on my love of food is totally kicking my puppy.

Really appreciate any feedback. I realize that my issues are "1st world cancer problems" and I am grateful that if I was going to get cancer, it would be PTC. That being said, I feel like version 1.0 of myself, and want my life back. I want to enjoy the activities I did before surgery, I want to have energy again and I want these freaking migraines to decrease in frequency. Any advice or insight is appreciated.

aharper
Posts: 3
Joined: May 2016

Since you haven't seen your doctor yet I would wait to see what your levels are and if there is anything that can be done to get you back to feeling like yourself. I can't offer help in this area. I basically felt fine after the recovery period and I had matastasis to my lymph nodes. I am on a higher dose of synthroid than you - maybe that helps. Good luck and I hope you start getting back to normal soon.

janettelavon
Posts: 7
Joined: Nov 2012

Hi. I am so sorry you are going through this.

I had Hurthel cell cancer 2011-2012. I to lost all taste after the radiation.  It took me over a year to get my taste back and it came back very sensitive. I used to be able to eat spicy food but I can't stand anything now that is the least bit spicy. Sour foods are also very hard because I am so sensitive. But now I can taste the difference between sugar and salt so I am happy :D

Before surgery I had 1-2 migraines a month and I went to 5-7 a week after surgery. The migraines also increased in intensity. They were totally out of controll and nothing would take the pain away. After about a year I was referred to a neurologist who has helped so much. I am now on a daily medication that has reduced them to 1 miagraine every 2 weeks, the pain of the headache is now bearable.  If your headaches are worse please see your doctor so you don't end up suffering as much as I did. 

It has been 4 years since I had surgery and raidation and it has been a long road to recovery. Most people I've talked to have recovered much quicker than I. Just know that sometimes it takes awhile but don't lose hope. Give yourself the time to heal. Also, ask your doctor about taking Cytomel along with synthroid. Having both the T3 and T4 has made a world of difference.  

Good luck to your recovery. Prayers and thoughts of healing are with you

JuniorBay
Posts: 4
Joined: Jun 2016

Thanks aharper and Janet, appreciate hearing from you both. We will see how the increased Synthroid dose goes and crossing fingers for decrease in migraines. I will see a neurologist if they continue to be such a pain (literally).

JuniorBay
Posts: 4
Joined: Jun 2016

Well, my endocrinologist upped my Synthroid dose and it has been 3 days since my last migraine! Energy is better and appetite is better (still not much taste, but will wait for that to come back). Hoping that this is the fix I needed, so nice to be able to live life almost normally now!

Bethdaugherty's picture
Bethdaugherty
Posts: 10
Joined: Jun 2016

I had a thyroidectomy in Jan 2014 for ptc and a couple of months after the rai ablation my energy level droped pretty badly. My TSH and T4 was fine but my ferritin was WAY too low. I got it back up and felt so much better. Every time they give me rai for a whole body my ferritin levels drop and energy drops. That may be something else they should check. I hope you are doing much better now.

toots25's picture
toots25
Posts: 9
Joined: Jun 2016

What is Ferritin level & How did you get it to increase? I too am having tons of fatigue & am pre Thyroidectomy (Aug 14 is my Surgery)

Thank You for any info you can provide. Kathy

Bethdaugherty's picture
Bethdaugherty
Posts: 10
Joined: Jun 2016

Ferritin levels measure your stored iron in your body. They put me on iron supplements. I hope you start feeling better

JuniorBay
Posts: 4
Joined: Jun 2016

Thanks Beth for the info, might have to start looking into that a bit. I have always been a bit anemic, so would be worth checking out again and maybe getting started on Ferritin. I am down to a migraine about 1-2 times per week (unfortunately, today is one of those days), energy level is better but still not back to normal, and putting on a little weight (but I am not as active as I was, so sure that is part of it) and losing a lot of my hair (which sucks, but I have a TON of hair, so has not become a balding issue yet). My memory also sucks, especially short term. I always feel like there is a wall between me and my brain. And I am getting intermittent swelling/pain of my salivary glands (one side at a time, but changes sides). At least my taste is back, lord I missed food :)

Had recheck T4 labs run today, and meet with my endocrinologist next week to see what the results are. Will let her know all of these issues too, hopefully she has some recommendations. I am realizing I was quite naive that life would be back to normal quickly after surgery, this is not as easy or fast as I was hoping. That being said, I am grateful this is all I am dealing with, it could be a lot worse.

yuda
Posts: 2
Joined: Aug 2016

hi good morning someone has thyroglobulin hig 276 iu/ml?it might be tyroid cancer?

 

Snoofy's picture
Snoofy
Posts: 1
Joined: Feb 2017

Hey Junior, bit of a late reply but on point #2 - I had really bad tiredness, brain fog, etc until I started taking B12 vitamins. Always worth topping up on. Smile

PPG73252
Posts: 1
Joined: Jul 2017

Sorry this is my first post and I did not realize I was replying to another one!

 

I had a total thyroidectomy in March after a biopsy showed cancer. I have also had kidney cancer removed and a double mastecomy for DCIS. All 3 are supposed to be unrelated. My 25 panel gentic did not show bad variants. I do not know my family history because the adoption records are sealed.

Right now I am having more issues from the thyroidectomy than I ever had with the other two cancers. I feel really bad from the bottom of my feet to the top of my head. I hurt everywhere! Migraines, my joints and the bottome of my feet hurt all the time. 

Just had my levels checked: TSH is low and my thyroxine free is high at 223. I gained 130+ pounds in the 14 months between having kidney cancer removed and then the thyoid cancer. Still can not loose any weight and I am tired all the time. 

I need to get this figured out because I don't want to do anything, but lay in bed. I can not understand why the "easy" cancer that my Dr. assured me was nothing to worry about has made me feel so badly! I breezed through the other two, but this thyroid stuff is crazy!

Any ideas would be greatly appreciated! :-)

 

 

 

RMgirl17
Posts: 1
Joined: Aug 2017

Check or the FaceBook page "DNA Detectives."  They have helped many people access adoption records and also find birth parents.  Good Luck.

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