Life after a Total Thyroidectomy

[blsdnsvd]

How has a TT alternated your life and has the "hypo" symptoms left you unable to function as usual and for how long???

I've been post TT for two months and i notice an increase of symptoms, such as "fatigue", "heart flutters", "high blood pressure", "change in menstrual cycle", "anxiety", "headaches", "little motivation"......and i'm sure that my med's are due for increase (75mcg), but does it get much better than this. Before i had the TT done for "multinodular Goiter", I was sketptical due to stories that i read on this site but was also aware that "each" individual is different. I've been out of work since 08 due to layoff but will soon have to get back in motion and i can truly say that besides getting my daughter up and out for school, my energy level is minimal and short lasting. I am taking iron and vitamin d tab's as well as calcium.

Please share your story.....

Barbara

[hootytoot]

I totally agree I had hysterectomy that wasn't this bad.

[gimel]

Feeling that way I know i wouldn't wait.  I'd call the doctor and insist on at least getting in for tests, so that you can get started on replacement thyroid hormone.  If successful you should make sure they test for Free T3 and Free T4, the biologically active thyroid hormones, (not the same as Total T3 and Total T4).  Those symptoms sound like you are hypothyroid, which is the eventual outcome from a TT.  So, I expect that you will find that your Free T3 is in the low end of the range, or below.  For most people that would be consistent with having hypo symptoms, since Free T3 correlates best with hypo symptoms..

[Nnake]

I had TT last week 28/10/2014 and today is my worst day. I have cramps in my stomach and right leg, have heart burn that won't go away despite taking rennie tablets. My blood pressure is very high 160/99 and earlier on I had this sharp pain in my chest cutting across my heart to my side just below my breast.  My whole body just doesn't feel ok at all.  Seeing Dr.on Thursday and am sitting here wondering must I phone Dr. now or will I be overreacting?

[lesmcd]

I had a TT on Jan 24, 2014.  I have had crazy blood pressure issues before and after the surgery.  I was severely hypo and was finally diagnosed with compressive thyroid.  After the surgery, I have had partial paralysis of the right side of my throat. I couldn't get air into my throat.  My surgeon swore it was asthma, which I have never had.  An upper respiratory infection sent me to the ER due to shortness of breath, all scans clear.  They wanted me to see an ENT for the throat blockage.  Saw the surgeon the next day and he swore that it was just BAD Dallas air and prescribed steroids. Within 20 minutes of taking my thyroid med, my bp goes up 20 pts and the lisinopril hasn't always been successful in managing it.  Changed meds from 150mch levothyroxin to 3 grains Armour thyriod, same problems.  I have to carry a portable bp monitor and my bp meds all the time.  Initially I lost about 18lbs after the surgery that's all back.  I'm fatigued, sore, depressed, have brain foog and am really scared about these cardiovascular issues.  My endo is one of the rudest men on the planet, I'm getting no where.  No one seems to have a clue what to do with me.  And the kicker is that I work in health care, but can't seem to help myself.

[mng2388]

I had a tt three weeks ago and have the same throat pressure/choking feeling and difficulty swallowing. Any tips on how to get rid of it. How long did it take for that feeling to go away for you?

[addie30]

Hi, ℓ̊ underwent subtotal thyroidectomy in 2006 and the goiter has regrown and this time they advised ℓ̊ do a total thyroidectomy. ℓ̊ am soo scared do u think ℓ̊ should go for a TT or ℓ̊ should treat. The symptoms and live with the goiter?

[kmfleet]

I had a TT 4/24/12, due to Hashimoto's and Multi Nodular Goiter...the ones that are big enough to be noticeable from the outside....anyway, I have had several medicine adjustments, as recent as TODAY! I went from 112 mcg, to 88 mcg, and now 75 mcg. I can say with the first adjustment down to 88, I started feeling SO much better! At 112, I had NO energy, never slept, had headaches and eye pressure, was moody, depressed and actually gained weight. Once I had been at 88 for about a month, I felt like a new woman, and though I am being reduced just a tad more, I don't foresee anymore of those awful symptoms coming back. Even the tightness in my throat (the same pain I had WITH the thyroid and goiter) is much more bearable. If you aren't feeling better by now, demand more tests. A full thyroid cascade, not just a TSH. You are the only advocate you have, fight to make these dr's find out what is going on! Don't give up.

[memawregrets]

I had a total thyroidectomy in May 2012 and if I could turn back time I certainly would. I've had several different surgeries through out my life, I'm 64, and this is the worst! I had multinodules but they were not cancer and now wishing I still had them - sounds crazy but I felt better then than I do now. I've had constant stretching, pulling, tightness, pressure in my throat ever since the surgery. Somedays it's so bad I'd rater be dead! Doctor says it's probably scar tissue - gave me a steroid injection and will have another one next month. I'm depressed, which is not normal for me, but living like this is scary. I usually wake during the night thinking I can't swallow or that I'm going to choke to death. I take 125 synthroid and calcium with Vit. D.

Absolutely the worst thing I've ever done is making the decision to have this surgery!

[lc5401]

I have been told I need my thyroid out. (just from an ultra sound) I refuse to do so as I will not take the pills for the rest of my life. I would rather go with the cancer then be poisioned that way

[blsdnsvd]

Just by reading your story, tells me how strong you are and that is wonderful. 250mg does seem very high but as long as it does justice for your symptoms, that's what matters. I'm only on 75mcg and i have an appt w/my endo tomorrow and she will more than likely increase my dosage. Thanks for the encouragement, i will surely hand in there and definitely stay positive...I'm certain that other's will as well.

[crystalthegr8est]

Hi there! Great question. I had a TT in April of last year (2009) due to matastic thyroid cancer (it was in several of the surrounding lymph nodes). I was put on .125 mcg of Synthroid about a week after surgery. I will spare you all the crazy details, but just suffice it to know that I was having many, many, MANY symptoms and could basically have written the book on what being hypothyroid is. I had RAI treatment at the end of May 2009 (a rather high dose due to the amount of cancer they found) and then have had blood tests every three months since then. I just had my meds increased last week and I am now up to .250 mg of Synthroid a day. I have noticed a great deal of improvement if I look back over the last almost year now. This has been one of the toughest things in my life that I have ever had to do, and I am still not done yet. The cancer is not fully gone. I'm going in for another full body scan here in the next few weeks, along with some more ultrasounds and a chest CT scan just to be safe. I have a fantastic doctor who has really been great about asking me how I'm feeling, listening to my symptoms, and helping me find ways of coping until we can get me at the right dosage level. I'm not nearly as cold anymore, I have a lot more energy than I used to, but I'm not fully like my old self yet. Yes, my Synthroid dosage is quiet high, but my thyroid was really bad and my poor body has been depleted of the things it needs in order to function properly. You will get there, I promise. I know it seems like a million years away from where you are now, but it does get better. Try not to beat yourself up about the way you feel. Don't make yourself feel bad about what you are not able to do at this time because that only makes it worse. Good luck, my friend. Stay positive, ok? :)

[ColleenGA]

Well, I had my TT on December 31. I feel like crap too. I am exhausted all the time, I am tingling all the time, and I have muscle cramps all the time. If I stretch when in bed, I will invariably get a cramp in my side, my calf, my thigh, etc...my hands cramp up all the time.  I sleep MAYBE four to five hours a night.  I am soooo tired.  My eyelids jump periodically which is so annoying...  I am on 150 synthroid, calcium and a multivitamin.  I also take Lopressor and Nexium.  I sometimes find myself regretting having the surgery.  "Maybe I should have just treated the symptoms and put up with the goiter"  TOO LATE NOW, COLLEEN. :(  I hope it gets better...I get my two week blood test done on Tuesday and see the doc on Thursday. I hope my news is better.  I have been reading about magnesium levels causing the muscle cramps and tingling...anyone else hear about that?

[PenBrano]

Magnesium is excellent for cramps. You can also get magnesium bath salts which are lovely as well.

[Totie]

I had a TT about 15yrs ago due to graves/hyper/goiter. We did try the RAI, but even with that I hit a thyroid storm for the second time.  It does take time to get the correct dosage so be patient. I did return to work, but everyone is different. I did not have a choice it returning, but I was off for about 3-4 weeks due to having hit a thyroid storm.

I guess I was tired & fatigued at first, especially returning back to work full time & a one year old child. I didn't give it much thought on how I felt, I just did what needed to be done. I do take B12.

I feel great now. I was on 200 mcg for 10yrs, but now down to 125mcg the last 5yrs. I get my levels checked whenever I or my dr. remember to get them checked. Uusally once every 1-2 yrs. The last time I got my levels checked was July 09.
I have not had any issues that are thyroid related. Make sure you continue to get your levels checked, along with B12, Vit d. Just be paitient you will feel normal again.

[blsdnsvd]

I know that everyone has a story and i wanted to get views from different people. I am very new to this and at the same time, becoming educated by others' stories and advice. Thanks in advance to everyone for telling your story and giving advice.

[froggy0936]

Excellent question Barbara and useful to me....especially since we had our surgery the same day and both are on 75mcg! I can't wait to be better. I hope it was worth it in the end because as you know, I feel crappy! Wish I could fast forward about 6 months from now or have a crystal ball! Lol. Take care my friend! xoxo. Also, thanks for responding MANmom!

[MANmom]

I am feeling great now that I am on the right dose...I take .1875, seems high, but any less and I am sluggish and tired, any more and I get headaches.  You need to find the right dose, sounds like your doctor is very conservative.  Make sure you tell him/her your symptoms.  I was a cancer patient and a very active person (run three to four miles a day), so my doctor put me on .150 to start, then upped to .175, then to .1875, and I had to convince him to up it the last time.  It took several months, surgery was in June, started meds in late July after RAI and only in November and December did I start feeling "normal".  Now I am back into my workout routine, I don't need a nap or a few glasses of iced tea to make it through the day, and am 8 pounds from my previous weight before surgery.  Good luck, you will get there, it just takes time-don't stop until you feel like you did previously!

[Handigirl1]

I am scheduled for a TT tomorrow AM  I appreciate this site and all the comments.  I will share as time goes by.  Handi