One patient with glioblastoma still alive nine years later
by Dolphinlady on Mon Feb 05, 2007 12:00 AM
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.
by Valerie1979 on Tue Feb 06, 2007 12:00 AM
by Aloha_Wahine on Tue Feb 06, 2007 12:00 AM
by Boston on Tue Feb 06, 2007 12:00 AM
by Holi44 on Tue Feb 06, 2007 12:00 AM
by Skylark on Thu Feb 08, 2007 12:00 AM
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.
by Foster68 on Fri Feb 16, 2007 12:00 AM
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.
by Marcella on Sun Apr 29, 2007 12:00 AM
by kristielayne on Thu Sep 17, 2009 12:00 AM
by groover on Sun Jun 13, 2010 03:31 PM
On Sep 17, 2009 12:00 AM kristielayne wrote: I had a TT in 2000, and was put on synthroid. I was only 21 years old at the time and felt my energy level hit rock bottom. I have spent the last nine years giving blood to have doctors tell me that my levels were "normal". Although I don't yet have kids of my own yet, I am an elementary school teacher and would automatically blame my exhaustion on kindergarten. I always felt that my doctors were passing me off and acting as if my feelings of depression, exhaustion etc.. were just the way I was going to feel "life after a TT". I have been married for four years and we have been actively trying to have a baby with no luck. A new neighbor of mine is a Physicians Assistant, and he and I started talking one day about my thyroid, he referred me to an internal medicine doctor in Arlington Texas who specializes in thyroid conditions. My husband and I met with him had lab work done and found out that my body does NOT break down the T4 that is in synthroid; therefore, I was switched to all natural thyroid Armour which is a natural T3 that the body doesn't have to break down. Basically for nine years my body has been so depleted. After two weeks of being on Armour, my depression and exhaustion subsided and I feel like a different person. I am hoping that this will be a lesson to you to not give up and take anti depressants, find a doctor who analyzes and specializes in this type of condition because it is possible that your body also doesn't break down the synthroid. I am a much happier person with twice as much energy. Good luck on your journey!
On Sep 17, 2009 12:00 AM kristielayne wrote:
How did you find out your body does not break down T4?
I'm really dragging...can go to sleep an hour after I get up! Currently I'm taking two antidepressents and my hunch is that an inadequately treated hypothroid mimics depression.
Thanks for any advice you can give.
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