Flu-like symptoms after total thyroidectomy

[loveblue]

Hi, everyone.  I'm new here, so go easy on me.  : )  I had a total thyroidectomy (very large, non-cancerous goiter) in late August 2006.  The surgery went fine and I was having a 'normal' post-op recovery until two weeks after the surgery.  For the last five weeks I have been experiencing flu-like symptoms that last most of the day, until early evening.  When the flu-like symptoms end, they are replaced by hot flash-type symptoms.  (I'm post menopausal).  

Before the surgery, I had hyperthyroidism - severe fatigue, nervousness, very dry and itchy skin, problems concentrating, very fast heart rate, plus heart beat very hard, so hadn't had a restful nights sleep in about 8 months.  All problems except skin dryness are gone, but the constant flu-like symptoms are preventing me from returning to work.  I am currently taking 100 mcg of Levothyroxine, which my endo wants to increase to 125, but my primary care doctor feels I may already be over-medicated.  I am also taking 2 500 mg calcium tablets daily, in addition to drinking about 16 oz of 2% milk per day.  I'm also experiencing sharp stomach pains and loose stools about 5 days a week.  My post-op thyroid levels are now in normal range, but just barely.

I will be seeing my primary care physician within the next week, but I am really getting concerned about the daily flu-like symptoms.  Anyone ever experience anything like this post-TT surgery?

[Rozier]

I am so sorry you are having such a difficult time. I had a T. Thyroidectomy in July 06. I am still experiencing flu-like symptoms. I am also unable to work. MD doesn't understand completly why. I am taking 88 mcg of Levothyroxine. Blood work done today revealed that I am hyper with a TSH of 0.25. He wants me to start 75 mcg tomorrow and add 5 mg of Cytomel. I don't think I am converting T4 over to T3. You might ask your MD about this. Levo is T4 and most people can convert it over to T3 but some people do not and feel much better when they add T3. I would like to know what your numbers are. It sounds to me that you are hyperthyroid and they need to back down on your levo dose. The calcium may be causing your stomach pain??? (I have stomach pains too). By the way, have they checked your calcium levels. I would like to know what they are. I am not sure where this is coming from. I think your entire body is off after this kind of major surgery and it takes awhile to get everything adjusted again. Please know that there are others in the same boat but hopefully in time things will normalize. I regret having the surgery but I guess at some point you have to move on and try to do the best you can. No one ever told me it was going to be this bad.
Hang in there!!!
Leigh

[loveblue]

Thanks so much for getting back to me!  Just knowing someone understands what I'm going through helps alot!  From your post, I can see that I'm going to have to educate myself on my numbers.  (Thanks for giving me info on what I should be looking for once I get a copy of my latest blood work test results).

Since the first week or so post-op went so well, I just thought I'd continue my recovery with no complications.  I should know by now that life is rarely that easy.  Since medication didn't help my thyroid condition, surgery was pretty much my only option.  One thing has gone very well though, which I have to remind myself of much more often - my heart rhythm has gone back to normal - and I'm sleeping like a baby again.  

Again - thanks for your very helpful information.  I will post again with the info I get from my test results!  

Janice  : )  

[Rozier]

Life is hard to understand sometimes but you seem to be optimistic. Hang in there and hopefully a brighter day is coming. Here are some specifics I want you to look at:

TSH - most people feel good around 1.00

Make sure you know what your calcium levels are. This is very important as it regulates so many things in the body.

Consider adding T3 - obviously, your MD will determine this. I have read so much on this and it seems that many people do much better when this is added. If you do take it, take it in divided doses (2 or 3 times a day) and take a low dose (5 mg). When this is added you might need to back down on the T4 (Synthroid or Levothyroxine).

One last thing... There is a book that I have found to be extremely helpful. It is called The Thyroid Solution by Ridha Arem, MD. It would be worth your time to read it. I highly recommend it.

Please let me know if you have anymore questions. I certainly do not have all the answers but it sure does help to talk with someone who is walking in similar shoes.  

[bizwiz12751]

I had a total thyroidectomy February 2006 and my medicine just now is getting somewhat adjusted. Word to the wise, nothing felt better until my doctor allowed for a dose of T3, even though, the lab work showed T3 within range. You have to talk your doctor into experimenting with the medicine since everyone seems to react totally different. When I was on 175mcg of Synthroid I still found it very hard to function. We changed the medicine to 150mcg of Synthroid and 25mcg of Cytomel and the world is much better. Of course, the 25mcg Cytomel works much better when it is taken at least an hour after the Synthroid and split in half to take the other half later in the afternoon around 3pm. So, Synthroid (150mcg) at about 6am, Cytomel (12.5mcg) at about 7:30am and Cytomel (12.5mcg) at about 3pm. Also, if anyone is using any birth control medicine, please do not take it with Synthroid or Cytomel. I've got to admit that this staggering of medicine is quite cumbersome, but I am willing to sell my soul to the devil to feel better and I'm sure many of you feel the same way. Good luck to you all.

[MJ13]

I have been diagnosed with Graves Disease and multi-cold nodules that after a FNA came back as suspicious for papillary cancer.  I am scheduled for a total thryoidectomy on 13 Dec.  I agree with Rozier, the book "The Thyroid Solution" is a fantastic book. I like how it talks about the mental difficulties associated with thyroid disorders.  About the same time I was told something was wrong with my thyroid, my boyfriend dumped me. I was suffering from major depression, couldn't concentrate at work, and was crying all the time.  This book made me realize that thyroid disorders can play havoc with your mental faculties.  I went to my primary physician and she prescribed Lexapro, which I call my "Happy" pill.  I'm also on PTU which has stablized my T3 and T4 levels.  Between these two drugs and finally knowing what I'm dealing with, I am feeling much better.  I've been off work for a month and will go back to work next week until I have my surgery.  Bottom line...anyone with a thyroid disorder should read this book.  It covers a wide range of thyroid problems.  I highly recommend it.

[LeilaTaffie]

All
Reading your posts has made me realise a little more of what to expect. I'm 25 and waiting for an op for a TT.  A private consultant thinks that I have Graves Disease , where as NHS consultant opinion differs. My antibodies are currently standing at 28,000 and I have two mulitnodular goiters which are starting to press against my windpipe.  I appreciate your posts, and understand that it's going ot be a long road ahead.

I'm going to look into that book aswell, any help/guidance I appreciate it.
Take care

[totally sick]

Hi I just had total thyroidectomy on tuesday August 28,2007. I have been feeling very very tired. I am on 1800 mgs calcium aday. I also feel like I have flu like symptoms. I am having hot flashes sometimes, then feel cold. Still hard for me to shallow yet. Igo back to Drs. on Spt.14 to check blood work then medicine adjusted. I hope it gets better then this.

[[email protected]]

Hi everyone. How r u doing? I had a total thyroidectomy on 08/04/07. I am taking synthyroid 100 mcg every day. I feel very tired and I can't sleep well. I can't study and all the time I feel sleepy. Can you give me some suggestions to cope with these problems? Thanks guys. Talk to you later.

[redlushberry]

Wow, all these posts are making me nervous. I have had Graves Disease for about 6 years and my Dr has scheduled a TT in 3 weeks. I have been trying to get pregnant on my Neomercazole meds for about a year to no avail. That's why Dr thought the TT a better option. Did anyone have radioactive iodine as an option, or a Partial Thyroidectomy?

Thanks I am feeling very nervous about the TT.

[[email protected]]

I did not have radioactive iodine. The operation procedure is simple. I did not know that I am gonna feel so tired after surgery. My doctor said, "well, you are gonna take one pill a day like an vitamin supplement, thats all". They did not tell that I will feel like this. Its really bad until a specific dose fits for you. I am glad that before surgery you are searching information. Good luck.

[olemissreb123]

I had a TT 6 days ago.  I am having flu like symptoms, feel really tired and lathargic.  I am very scared to drive.  I am on .100 synthroid - I am not sure I will ever fell normal???

[TOLD YOU]

I was very tired but didnt have flu like symptoms.  I didnt drive for well over a week because of my neck muscles being sore and tight.  I am on .1mg (100mcgs) of synthroid also.
Hey Olemissreb are you from Mississippi ??
I am and there is one more person on here from Miss. that is pretty cool.
Dana

[L777]

OK long story I will try to cut to chase - I started an 10 lb per year weight gain about 10 years ago - at this time, I was in the gym everyday - I just dropped off - got tired.  I contributed the lack of energy and weight gain to my job change - from never sitting, to always sitting.  

My previous annual GYN doc said I had and enlarged thyroid - so I went to my primarty doc - he said that I would probably have to start working out 2X as hard to achieve same results- nothing important (to him I guess) -

I have progressivly gotten more tired, more depressed and gained more weight - one prev. doc put me on lexapro - kind of helped me for a little while during my mother illness.  She faught a battle with cancer and past in Jan. I am an only child (adult) with 3 of my own kids - so kind of pushed the fatigue to the side thinking that it was brought on by 3 years of horrible depression watching my mom go thru this stuff. My latest symptom has been hair loss - I used to have so much hair - BIG TEXAS Hair.. and my mom grabed my hair in December and just got a horrible look on her face and asked where my hair had gone.. kind of freaked me out..

I started putting these symptoms together and thought I was experiencing every hypothyroid symptom possible - my current GYN - said "time to figure this out!" even if my bloodwork was normal - we need to figure out why my thyroid is big - so he refered me to my present physician - who is wonderful - she listened and understood my frustration - primarily.. I have not mentioned yet - is that I am back n the gym since last October - averageing 15 days.. I boosted that up to 20 days in the gym every am at 530 - cardio for 45 min at 165 bpm.. then weight training.. I have lost....NO WEIGHT!..my best friend is my gym partner and she is a personal trainer - so I know we are doing every thing right.. I started going to work out at lunch with a sedentary friend - she lost 10 lbs in 2 weeks.. me, nothing and she does only 10 min cardio and poops out on me.. I am so frustrated..

Ok - almost there - my doc scheduled me for test - nuclear uptake and a sono - appears I have a multinodular goiter - 2 lesions are cold and 2 cm each - on each lobe - my ENT did  FNA biopsy - results are follicular - my options are to watch it - or remove it.. 20%chance of follicular cancer (as I mentioned my mom just died of cancer - so that is very concerning - different type - still the "C" word.).. My fear is that if I remove my thyroid that I will keep gaining weight.. my fear is it will get worse.. yea I feel tired - but am I 'realy' tired?.. I don't know anymore.. my fear of life without a thyroid has frozen me.  Does anyone think my thyroid issues are related to my madness - or should I just wait this thing out and keep up in the gym?  I have no idea what to do - the medical field says unless my bloodwork says my thyroid is low - they can not feel that it contributes to weight gain - yet it is clear I have a thyroid problem.. what is that supposed to mean?

HELP - any suggestions are welcome!

[greatmom67]

I just had a complete thyroidectomy on july 15 of 2008.  Surgery was kind of hard to recover from but I am happy to say that I am back to work and feel very little discomfort.  I must admit that my throat feels extremely tight especially when swallowing.  I had a goiter and three nodules that were beginning to constrict me.  I am taking 75mcg of synthroid daily and had been on it 3 years prior to the thyroidectomy.  Hopefully I will see changes in my weight. Be well everyone.

[greatmom67]

I also had extreme fatigue after the surgery, I am 16 days post surgery and I still feel tired and have to lay down and rest.  I am also on 1500mgs of calcium and one pill of calcitrol daily besides the synthroid. I would like to know if anyone with a complete thyroidectomy suffers from palpitations.  Frequently I am plagued with these palpitations and they are very uncomfortable.

[STRAZ]

DID ANYONE DEVELOP A COUGH AFTER SURGERY I AM JUST 4 WEEKS POST OP AND 2 WEEKS POST OP I STARTED COUGHING AT NIGHT THOUGHT IT WAS ALLERGIES GOT RID OF MY NEW BEDDDING AND STILL CONTINUES WORSE AT NIGHT SOMEONE PLEASE HELP !! - MARYANN
IN GREENWICH -

[sunshiny_55]

I am 6 days post-surgery. I had a partial thyroidectomy due to a large non-cancerous nodule that was causing swallowing difficulties. I have been extremely fatigued since surgery and I also get hot flashes and nausea. I see a few others have felt this way too... have any of you gotten over it yet? I sure hope so! I hope I don't always feel this way! I want my nodule back, if so....

[adutch]

try a course of predisone it could be an allergic reaction to the antestic. i get the cough now after every surgery and believe me i have had a few starting with a total thyroid removal and gall bladder (same time 2 for 1 they called it and took 6 hrs) i am fighting the cough now after having a knuckle removed from my left thumb but find that a 5 day course of the predisone usually takes care of it 5 on day 1 then 4 on day 2 etc.

[weeener]

I am post TT 5 days and feel terrible. No energy, no apetite, nauseated, feel depressed.  I feel shaky in the morning and then it gets a little better towards the evening. Spoke to my endocrin and she said body just needs time to adjust. Hope it will not take long as I am already unable to work related to voice issues from intubation. Can anyone say how long it takes to at least get some energy back?   I am on 125mcgs synthroid and 4000mg calcium per doctors orders.

[artsavvy]

I am 56 now and was diagnosed with goiter at age 25, so long time on Synthroid. I had a TT 3 days ago and I feel wonderful. More energy than I have had in years. I have asthma too and now after the thyroid is out I can breathe better. No whizzing on expiration. I no longer have a lump in my throat on swallowing. I still have to wait for the pathology report but will not stress over that either...what is, just is. I struggled with committting to surgery but now that it is gone I am relieved. Had three docs who thought it should come out...who wants to do biopsies every 6 months and be cold and draggy all the time. Most times I just wanted to lay down even though the lab values were within normal range. Normal range is where I have questions. Anyone who knows me know I am not normal. Little humor. Everyone that sees me notices the skinny neck. I am overwieght and have been unable to lose anything without starving myself. It was not normal. Seems the multinodual goiter was much larger than originally suspected with the ultrasounds. Doc real pleased with himself for taking it out because it was pressing on everything. One of the weirdest things is that I had a pinched nerve in my neck that casued pain in my arm if I held my head in the wrong position. It is gone. I am on 125 now and will remain on it for awhile to see how body adjust. I am taking two tums with each meal.My appetite has subsided and so far with God's blessings I feel great. Hardly any pain with recovery. To be fair I have had many orthopedic surgeries so my pain level tolerance is probably streteched pretty far out there. The surgery is not painful, the worse part is from the intubation to put you under general anesthesia. Take heart my TT friends and know that TT may be the beginning of a new life. If you don't get the answers you want find another doc. Always start with an internist and then the edocrinologist state what you want with them both and take your facts with you. Remember they work for you.

[xanu603]

Hello,

I have had a total removal of my TT said it was graves disease(still dont know what that is) never had any problems now I feel like I am choking.  The best advise if a dr tells you that you need to remove your thyroid RUN I dont think it is necessary to remove it as it seems to function every part of your body.  I too am now experiencing hot sweating which I never had before.  There is a chinese remedy called Thyroid Thoru whhich if I had known before my operation I would have taken instead.

Choking

[ksmo4]

I had a TT almost 3 weeks ago. I had grave's disease with a large multi goiter. The first week I had so much energy, since then I've grown very tired. I'm on 150mcg of Synthroid and just started 5 mg of cytomel two days ago. My doctor said to take them at the same time but from what I'm reading maybe I should try the cytomel about an hour and a half after the synthroid. My husband tells me around 3 o'clock every afternoon I look so pale and I get a tired feeling over me. The one BIG plus after my TT is that I can breath again. I didn't realize how much my goiter was affecting my breathing. It was putting pressure on my trach and on my chest. Just that makes it all worthwhile, the other stuff will come along I feel. It just takes time.

[tulips01]

Hi all, i had Graves 20 years ago, yeh had the opp... and after all that time i resentley..had another child aafter all this time BINGO...its back so never feel to comfortable .  cause it can sneak back and this time its like hell,

[grammy03]

Hi, I had a thyroidectomy done 19 years ago with a nodule(goiter).  The path report indicated chronic thyroditis.  the surgeon said he removed all .  Needless to say this past Sept I started feeling the lump in my throat at all times and burning in the throat.  After several tests my doctor said that I had residual thyroid and it had to be removed.  I had surgery on Feb 11th and the path report was the same as 19 years ago chronic thyroiditis,  I feel terrible since surgery, I am having pressure in my chest and shoulder blades and around back hurt.  Don't know what this is neither does my md.  He sent me for a chest xray.  Did anyone have these symptoms and if so is there an answer for it?