I am 40yrs. old & I have been fighting thyroid problems since 1995. I have had to have both sides of my thyroid removed at 2 different times in my life. The 1st time was not cancer but a goiter. Then years later I felt the nodules forming on my thyroid & found out I had Follicular Cancer of the thyroid while I was pregnant with my 4th child. That was the worst pregnancy of my life! I had to undergo radiation treatment 6wks after the baby was born. It has been almost 8yrs. since the cancer but I still feel like crap ALL the time. I am Hypothyroid. I am constantly tired & I have 6 kids to keep up with rangeing in ages 5yrs. old to 17yrs. old. I also babysit small kids in my home. I continue to fight losing weight. I am only 30lbs. overweight but I have been trying to lose that 30lbs. since the birth of my last child 5yrs. ago. I eat like a bird & lose nothing. I walk everyday & lose nothing. I struggle with depression majority of the time. I suffer some small panic attacks. I presently take 175mg. of Levothyroxine & my levels are still off. I have Insomnia horrible. It takes me forever to fall asleep at night & I end up waking up thru out the night most every evening. I probably live off of 3 to 4 hrs. of sleep a day which I know doesn't help my energy levels or depression problems. I thought things would be better by now but they are not. I have even tried 3 different endocrinologists hopeing that someone would have the magic answer but nothing. I can't try the natural thyroid medicines out there because the doctor explained to me that since I had cancer, it would be to dangerous to take those other medicines that work for some people. I wish someone had a magic cure for me. If anyone has any advice I would greatly appreciate it.
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HI Cat,
Thanks for sharing what you're going through...I too have had a total thyroidectomy and thought that after 2 years of my lab 'numbers' being in line with what my doc(s) want to see, I'd actually feel better. This is not the case! My neoplastic endo does not really want to hear about how I feel, he just looks at the numbers and scans (which have been clear for 2 years post-surgery now!)and basically dismisses me. Shortly after my last surgery to remove the 2nd 1/2 of the thyroid I complained, and cried, to him about my fatigue was effecting my life so negatively that he was surely missing something. He sent me for a sleep study thinking I had sleep apnea, I snore, which I did not, but was instead diagnosed with narcolepsy! I've been on narco meds to keep me awake during the day since and really can't function without them, but I truly think that the narco diagnosis was a mistake and that my fatigue is still due to hormone issues, specifically related to my thyroid, or lack of one!
I have gained almost twice my body weight beginning about 5 years prior to diagnosis, mostly with my 2 pregnancies but even before that. I had talked to my family doc about the fatigue and weight gain that started almost 10 years ago and how it effected every aspect of my life basically changing who I am. I was always active, into sports and worked out almost everyday running, lifting weights, aerobic classes, yoga...I worked and went to school and had a full social life and always had extra energy to spare...and could eat the world without gaining an ounce! As I started to decline I would complain to my family doc every so often over the years and he would run the obligatory TSH test that came back 'normal'...or so they said. I had always been just on the cusp of abnormal but still within normal range and no one ever thought to test further! Even when I had 3 cancerous thyroid tumors my TSH fell within formal normal ranges but still on the high side of 'normal'. It wasn't until a pituitary adenoma (a small tumor) was discovered and further tests were ran that an endo from Mass General saw the whole picture. My T4's and T3's and thryroglob's and blah biddy blah's were all off indicating Hashimoto's...and eventually the thyroid tumors were found, removed, and determined to be cancer.
So...here I am a few years later, tired, fat, depressed and on .175 mgs of levoxyl (like you), which is pretty high AND the narco drug Modafinil (which works on the hyopthalmuses inability to produce orexin (sp?) which keeps you wakeful during the day. - not an amphetimine - which might help with my weight!). I'm on a mega dose of the Modafinil and still crap out every day sometime between 11am and 1 pm. I try to cram lot's of caffeine into my body so I can get somethings done during the day, but that just makes me spacey and useless.
I see a naturopathic doc who explained to me that the thyroid, in tact and without disease, will produce hormone at whatever level that body needs on that day, some days producing more when the body needs it and less accordingly. The fact that we have no thyroid and are given one dose each day there are times when our bodies need more (or less) and that's not happening with us! She also talked to me about the whole T3 to T4 (or maybe the otherway around) conversion thing. The levoxyl is a hormone that feeds into a chain of reactions to make other hormones that eventually feed the cells chemicals to produce energy for us to live on. If any of those reactions or conversions are compromised then the ultimate result is we don't get our energy (or metabolism). She had recommended Armour, but for Thy Can patients it's not a reliable suppressent of TSH. So it's been recommended that I take Cytomel which has both T3 and T4, levoxyl only has one of them, can't remember which one. I'm going to make an appointment with my regular endo and try it...hope it works...I'll let you know!!
Best of luck and maybe you can talk to your endo about this too!
May 6, 2009 - 6:29amThis Comment
Have you ever been tested for Candida? Many cancer patients end up with Candida yeast overgrowth because of the drugs they needed to take. I had similar problems and tested positive for the Candida - I am on an anti candida diet and taking supplements and medicine which has helped tremendously.
I wish you the best of luck.
Karen
March 12, 2009 - 8:36pmThis Comment
Hi Cat,
March 4, 2009 - 5:17pmSorry I know what your going through. Do you mind me asking what state are your in? Being that you had Cancer you are right we can't take armour we have to stay on synthroid or levothroxine to keep us suppressed. Do you know what your numbers are at right now tsh? I have thyroid cancer also and it takes firm determination by yourself to get the help you need. I say make a lot of noise the squeeky wheel gets the grease! it's not fun feeling this way, but Dr.'s don't know there is something wrong in less you tell them and yes keep changing endo's until you find the one that you are comfortable with because it is a long time commitment.
Hang in there let me know
Your not alone really!
Valerie
This Comment
Hi, Cat. Thank you so much for writing. It sounds like you've had a really rough time of it. Perhaps others who have struggled with thyroid issues will read your question and respond to it as well.
I want to second what Susan said -- you might get some relief from seeing someone about your depression and/or anxiety. Depression is a real, biochemical condition that can affect every aspect of our lives. Anxiety can be extremely difficult to live with. And the effects of both of them would just be made worse with your insomnia.
Have you asked your doctor about your depression? You might be helped by depression medication, therapy or both. It may be that if you can get some help for it, you'll have more strength to keep tackling the thyroid issue. Do you need help finding a doctor or therapist in your area?
It's AWESOME that you walk every day! Especially with so much going on in your life. I hope you can pat yourself on the back for that. That's more than many people do even when they are not as busy as you are.
You mention that you eat like a bird; are you following any specific dietary plan?
In addition to the resources we have here on Empowher for you, here is a forum for people with thyroid disease; you might find some kindred souls there who are also battling fatigue, depression and weight loss issues:
http://forums.about.com/n/pfx/forum.aspx?webtag=ab-thyroid
And this website has multiple bulletin boards with topics such as "Thyroid-related diet, weight loss and nutrition:"
http://www.thyroid-info.com/community.htm
Hang in there -- you are doing so much already that is good! Perhaps we can help you find the next step to feeling better.
March 2, 2009 - 9:31amThis Comment