Problems After Total Thyroidectomy

I am almost 4 weeks post TT and I don't know who is in my body.  I am so moody and feel awful.  It all started over a year ago when I called my midwife and told her that I still felt "post partum" but my baby was a year old. She started me on some medication and we drew some blood. My thyroid levels were off, so off I went on my journey. First to my family doc, some ultrasounds of my thyroid and diagnosis of mulitnodular goiter, who then sent me to my endo who I need a translator to understand, but I did not know any to ask for.  I told him that I had been working out and felt like my neck was getting muscular.  My midwife had felt the enlargement there already. He did all the initial bloodwork and I started on Synthroid.  I called him about 3 weeks later because I was even more tired and could barely do anything.  He increased the dose but come to find out, I was pregnant. I miscarried the baby 5 weeks later due to low progesterone from the hypothyroidism.  This is just the beginning. I kept on the Synthroid and in about August 2006 I really felt my neck getting very tight with difficulty breathing, singing, etc.  I called him and he had me increase my Synthroid.  Finally, in November, when he wanted to keep waiting, I insisted on doing another ultrasound and biopsy if necessary. We did the ultrasound and they decided to go ahead with biopsy.  They found Hurthe cell adenoma. I didn't like the sound of it and so I looked it up. Everything I found about Hurthle cells was associated with cancer. I went back in end of November for results and my decision. I decided to have my thyroid removed due to difficulty breathing, the large size and the uncertainty of the those cells.  Good thing. They removed my thyroid on January 11, 2007 and found papillary cancer (which was missed on biopsy)  I just went for my follow up last Friday, with my list of questions in hand. My surgeon, who was very good, said that the cancer was very small and could almost be called "benign" Huh?  Isn't cancer cancer?  He said I need no further treatment, no radiation, no thyroglobulin levels in the future, no scans, etc. I was okay with it until I read some of the posts here. Should I push it a little more?  My Synthroid dose was 125 mcg before surgery so they kept me on that, but I sure feel VERY hypothyroid right now.  I see that some of you are on double that dose post TT.  I wanted it all when I went there, the scans, the radiation, all of it-I have a 2 and 4 yr old!  I am puzzled now. I was going to see my family doc again in a couple days for an antidepressant, but it looks like I should be calling my endo for higher Synthroid and Cytomel (which I have never tried) Sorry about the long blurb, but sometimes it is nice to get it all out.  CANCER, CANCER-When does that word leave your head so you can sleep at night.  I am lucky that I had it out when I did, and so many of you are so much less fortunate, but I wasn't ready for that stupid word. 

Thanks.

 

Did you have total thyroidectomy? If so, are you still on your thyroxin pills? Because if your answer is yes and no, then no wonder you are feeling so tired....

Oh my goodness, I feel for you !!!  You brought tears to my eyes, I could feel your frustration.  I've been there so many times too.  Please if you get a chance read my story "Cancer Again !! Now What?".  I'm so happy I found this website.  It really helps me make it through my days.  You have a 2 and 4 year old.  I am proud and happy to hear you have children.  I had to wait so long to have my son who is 2 years old now.  Now because of my age I may not be able to have a second one.  So, I am told to count my blessings and am proud to have at least one child to call my own.  Please go back to your doctor and get him to find out what's wrong with you.  Maybe, you need a new endocrinologist who will be compassionate and listen to you.  Do not let your guard down.  Have you had contrast/non contrast MRI's done?  I know the feeling cancer is cancer.  I'm sorry that word haunts you, but it'll never go away.  You have to be positive and not let it get the best of you for the sake of your children.  I know it's hard, but I self talk myself all the time.  It really helps that you have a support system to get you through the rough times.  I will not let this condition beat me.  I am happy to be alive !!!!!  It's been 12 yrs now and now I go down a different path.  You have to have faith that there is a better place you will be when the time is right.  We have to learn to be patient and not go crazy.  I hope this helps you.  Take Care & God Bless.  Aloha, Paulette  

I had a lot of your symptoms after the thyroid surgery and on the replacement . I went to my doctor and they told me I was taking the medicine wrong! I was taking it in the morning with breakfst and other pills. It sounds silly but... I now take it around 5 am with a full glass of water then I go back to sleep for 2 hours and I have more energy and don't cry. You are supposed to take it on an empty stomach before you eat - at least 1/2 hour or more and with a full glass of water and nothing else. Who knew? Feel better and enjoy your babies!

Hi, I had total thyroidectomy in 2003.  I can say that getting the thyroid dosage just right took a long time after that.  My body did all kinds of adjusting.  Since the thyroid is the thermostat of body, when it isn't working properly, it affects everything.  The first thing I would do is find a good endocrinologist, not an ENT.  They know so much more about the hormones and glands.  The other thing to be sure of is that this doctor is experienced with thyroid cancer and all that entails.  There are scans and blood tests that need to be done on a regular basis from now on.  After you have a cancer diagnosis they will want to keep your TSH (Thyroid stimulating hormone) very low, so that if there is any cancer cells still hanging around they will not produce.  I am surprised that they didn't do a scan of your entire body.  Most all cancer patients will have a scan done to see where it might have metastised.  Even if it is very small, it needs to be checked.  The good side of thyroid cancer is that it grows very slowly.  They tell us that most of us will die at an old age of something else.

Wow, what an ordeal you've been through!  I'm certainly no expert in all this, but I honestly feel you need new doctors.  Is there a hospital or group of doctors nearby who specialize in cancer care?  As someone else told you, you will need to be monitored and tested for the rest of your life.  I can't believe any doctor would say your papillary cancer was so small it was "almost benign"!!!  That's just incredible!  My own journey with papillary cancer began in October, 2006, when a carotid artery ultrasound revealed a thyroid nodule.  FNA in November proved papillary cancer.  I had my total thyroidectomy in December, 2006, and just finished my radioactive iodine ablation treatment.

I had consulted an endocrinologist right off the bat when I learned of the nodules, and when the FNA turned up malignant, he sent me to a surgeon who I was not impressed with.  Thank God!  I then sought a second opinion at a local university hospital and their cancer center.  The treatment they have given me has been remarkably different than any physician's care in the past.  I also switched my endocrinologist to this same hospital so my care can be coordinated.

You can't go back and re-do what has already happened to you, but you CAN find other doctors who will listen to you and treat you more carefully.  I'd do it.  I'm sure glad I went elsewhere!

Good luck.  Keep us posted.

What ever you do don't give up or give in to your current physicians. I had a TT in March 2005 and am facing a my 4th surgery since then due to lymph mets. So far I have had the TT, right radical neck dissection and central neck dissection and am facing a radical neck dissection on the left. I had to switch endocrinologists twice before I found one that did everything possible to stage me correctly. And because I get sooooo hypothyroid I am on one of the largest dosages of Synthroid. .4mcg every day. It is also imparative that you have your Thyroglobulin levels checked. This is the key lab test used to determine risk of reoccurance. I also agree with another posting that you have to have a whole body scan to determine if distant metastases are present. Leave no stone unturned and it your physician doesn't listen find another. You and only you know your body best.

 Good Luck.

I have recently had a total thyroidectomy for cnacer, which I have been informed was malignant.  I have had four days of radioactive iodine treatment so far.  Am I being self indulgent at wanting answers from people?  I ask what are the chances of recurrance as it was malignant?  No-one seems to be willing to give me anything close to an answer?  Is it usual to feel tired even though I am on thyroxine?  I feel moody and intolerant, which is the total opposite of how I usually am?  Can anyone say if this is normal or if they have experienced similar things?