Aa
Just got my labs back
argh!! this road has already been too long! i know i am one of many here that are suffering and constantly wondering what is going on so please don't think i'm on a self loathing pity trip. i've had hives for 10 years, appeared out of nowhere when i was 20. since then i've been tested for every disease that exists, gotten no answers and have been in an ugly bubble, seemingly alone and miserable. i was put on synthroid about 6 years ago, wasn't told what my lab results were that indicated the need for meds but remember very clearly that the medicine made me nuts! i didn't sleep for days in a row, i was jittery and more moody than usual. i found out i was pregnant in 2005, doc took me off the synthroid and i went on my merry way. had no hives for the last 7 months of my pregnancy but on my son's 2nd birthday, they reappeared. after a divorce and stressful few years, i finally sought medical help. i had done my share of research over the years and had a gut feeling that my issue was hormonal (no hives during pregnancy) or autoimmune. since the list of autoimmune disorders is so long, i set my sights on a few that had vague matching symptoms and set out trying to manage and cure myself.
eventually the symptoms- extreme depression, awful anxiety, sleeplessness, huge amounts of weight gain even while dieting, hair loss, hives and angioedema with extreme misery caught up to me so i broke down and got myself a doctor. thankfully this doctor is unlike any other. he doesn't even wear a doctor's coat (those give me white coat syndrome). he listens to me with no negative body language, writes as i talk, shares my medical information as well as lab results with me and is just a phenomenal, caring individual. he had me sent immediately for blood work, every test under the sun- vitamin d, autoimmune function, full hormone workup, adrenal function tests and finally an ultrasound of my thyroid. the thyroid showed a "considerably large" multinodular goiter on the right side of my neck. my autoimmune function was maxed out telling me/us that whatever was plaguing my body was not only autoimmune but that my thyroid was diseased.
i was sent to an endo who ran through the lab results and when i asked how many nodules were on my goiter, he told me 'too many to count. i immediately freaked thinking they were going to want to tear out my thyroid, had bad dreams about the major arteries in my neck, never having the ability to talk again, etc. remember the anxiety that has increased rapidly over the last decade was off the charts. the endo asked me to get my cortisol levels (2 years on prednisone, 80mg a day with no taper or weaning) as well as my antithyroid antibodies. i called today to get my results (a harrowing three weeks later) and found out that my antithyroid level was 97, 0-40 being normal. compared to the results i've read on this thread, this isn't a significant deal but to me, it's terribly frightening.
i've read a lot of the posts here and see that weight gain is a common complaint. is that why i have gained 2 lbs since i started writing this? i have a $500 treadmill in the corner that i enjoyed very much as little as a year ago but i can't even get my *** off the couch to move it to the living room, let alone trot for 2 miles. endo told me i had to exercise for 2 hours steadily to lose weight, 1 if i want to maintain. i fall asleep several times a day, have no appetite (adipex), no libido, no get up and go, no interest in anything. how am i supposed to exercise? it seems like torture to even consider.
one thing i forgot to mention was that my doc had started me on 25mcg of levothyroxine, pharm called it a ridiculous dose, it got changed to 88mcg then up to 100mcg. blood labs showed my thyroid function was off the charts and swirling between hyper, hypo and normal. i was removed from the medicine, no taper, no replacement medication and my thyroid went back to not functioning. i must mention that while on the meds, i expected to be restless and jittery just as i had years before but i would take my pill and be asleep an hour later.
now that some of my labs are pointing in the direction of thyroiditis, (hashimoto's?), what can i expect from my endo and primary care doc? i have a significant family history of autoimmune diseases- grandmother had hyperthyroidism and had thyroid radiated out, aunt on same side has addison's disease. on my father's side, my grandmother had a 6" goiter removed in her 40s, salt and electrolyte deficiencies with constant health woes.
is this a death sentence? is that treadmill right? i just need to get back on? does anyone else have issues with constant, extreme sweating? heart palpatations?
i'm sorry my post is so long. i am so thankful to have found this thread and hope to become more educated as the days go on. i don't think anyone can place all their faith in the medical system. being an educated patient is the best thing one can do and i am glad i'm not crippled by all the big medical terms. i also know that the internet can be very damaging and a source of misinformation. since we're all in this boat together, maybe we can solve some mysteries?
again, sorry for the rambling. it's these damn tremors! (:
shaina
eventually the symptoms- extreme depression, awful anxiety, sleeplessness, huge amounts of weight gain even while dieting, hair loss, hives and angioedema with extreme misery caught up to me so i broke down and got myself a doctor. thankfully this doctor is unlike any other. he doesn't even wear a doctor's coat (those give me white coat syndrome). he listens to me with no negative body language, writes as i talk, shares my medical information as well as lab results with me and is just a phenomenal, caring individual. he had me sent immediately for blood work, every test under the sun- vitamin d, autoimmune function, full hormone workup, adrenal function tests and finally an ultrasound of my thyroid. the thyroid showed a "considerably large" multinodular goiter on the right side of my neck. my autoimmune function was maxed out telling me/us that whatever was plaguing my body was not only autoimmune but that my thyroid was diseased.
i was sent to an endo who ran through the lab results and when i asked how many nodules were on my goiter, he told me 'too many to count. i immediately freaked thinking they were going to want to tear out my thyroid, had bad dreams about the major arteries in my neck, never having the ability to talk again, etc. remember the anxiety that has increased rapidly over the last decade was off the charts. the endo asked me to get my cortisol levels (2 years on prednisone, 80mg a day with no taper or weaning) as well as my antithyroid antibodies. i called today to get my results (a harrowing three weeks later) and found out that my antithyroid level was 97, 0-40 being normal. compared to the results i've read on this thread, this isn't a significant deal but to me, it's terribly frightening.
i've read a lot of the posts here and see that weight gain is a common complaint. is that why i have gained 2 lbs since i started writing this? i have a $500 treadmill in the corner that i enjoyed very much as little as a year ago but i can't even get my *** off the couch to move it to the living room, let alone trot for 2 miles. endo told me i had to exercise for 2 hours steadily to lose weight, 1 if i want to maintain. i fall asleep several times a day, have no appetite (adipex), no libido, no get up and go, no interest in anything. how am i supposed to exercise? it seems like torture to even consider.
one thing i forgot to mention was that my doc had started me on 25mcg of levothyroxine, pharm called it a ridiculous dose, it got changed to 88mcg then up to 100mcg. blood labs showed my thyroid function was off the charts and swirling between hyper, hypo and normal. i was removed from the medicine, no taper, no replacement medication and my thyroid went back to not functioning. i must mention that while on the meds, i expected to be restless and jittery just as i had years before but i would take my pill and be asleep an hour later.
now that some of my labs are pointing in the direction of thyroiditis, (hashimoto's?), what can i expect from my endo and primary care doc? i have a significant family history of autoimmune diseases- grandmother had hyperthyroidism and had thyroid radiated out, aunt on same side has addison's disease. on my father's side, my grandmother had a 6" goiter removed in her 40s, salt and electrolyte deficiencies with constant health woes.
is this a death sentence? is that treadmill right? i just need to get back on? does anyone else have issues with constant, extreme sweating? heart palpatations?
i'm sorry my post is so long. i am so thankful to have found this thread and hope to become more educated as the days go on. i don't think anyone can place all their faith in the medical system. being an educated patient is the best thing one can do and i am glad i'm not crippled by all the big medical terms. i also know that the internet can be very damaging and a source of misinformation. since we're all in this boat together, maybe we can solve some mysteries?
again, sorry for the rambling. it's these damn tremors! (:
shaina
COMMUNITY LEADER
You are most certainly NOT under some sort of death sentence.
There are 2 different thyroid antibodies, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab); do you have any idea which ones were done? Some with Hashimoto's are positive for TPOab, some for TGab and some for both. You should be tested for both.
That said, between your multi nodular goiter and the high antibody count, I think we are safe in saying you have Hashimoto's Thyroiditis. It's not unusual for a person to swing back and forth, between hyper, hypo and "normal" (keep in mind that I have a personal aversion to that word). Often the nodules leak hormones, independently of the thyroid; to my knowledge there is nothing that can be done to control this, but it can make you really hyper and really miserable.
As you know, Hashimoto's is an autoimmune disease. The antibodies will continue to attack your thyroid and as time goes on, your thyroid will be able to produce less and less hormones and you will need to stay on med in order to make up for what your thyroid can't do. At some point, you will be completely dependent on hormone replacement. For me, that's the point I looked forward to because I knew the only hormones I'm getting are the med I take every day, so my levels stay pretty steady.
Hashimoto's does not cause weight gain; Hashimoto's causes hypothyroidism, which causes weight gain. Your thyroid controls many of your body processes, including, but not limited to: metabolism, heart rate, body temp. When your thyroid levels drop, so do your body processes.
I'm wondering why your dose of levo got changed from 25 mcg to 88 mcg? I think your doctor was right to start you on a low dose. It's always best to start low and work up slowly in order to prevent a reaction. In addition, there may have been a dosage between 25 mcg and 88 mcg, that would have been right for you for a while, until it was time to go up to the next level. It takes longer to get well, when you go up slowly, but it also eliminates a lot of the chance for adverse reaction.
I'm also wondering what blood work they've done on you. After all you've been through, I will be very disappointed/angry if I learn that they dosed you based on TSH alone. The very minimum they need to run is TSH, Free T3 and Free T4........Please post whatever thyroid labs you have, along with the reference ranges, since these vary from lab to lab, so must come from your own report.
Many of us have walked in your shoes....... so we can certainly identify.
I hope you get a chance to check out the website that gimel posted.
There are 2 different thyroid antibodies, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab); do you have any idea which ones were done? Some with Hashimoto's are positive for TPOab, some for TGab and some for both. You should be tested for both.
That said, between your multi nodular goiter and the high antibody count, I think we are safe in saying you have Hashimoto's Thyroiditis. It's not unusual for a person to swing back and forth, between hyper, hypo and "normal" (keep in mind that I have a personal aversion to that word). Often the nodules leak hormones, independently of the thyroid; to my knowledge there is nothing that can be done to control this, but it can make you really hyper and really miserable.
As you know, Hashimoto's is an autoimmune disease. The antibodies will continue to attack your thyroid and as time goes on, your thyroid will be able to produce less and less hormones and you will need to stay on med in order to make up for what your thyroid can't do. At some point, you will be completely dependent on hormone replacement. For me, that's the point I looked forward to because I knew the only hormones I'm getting are the med I take every day, so my levels stay pretty steady.
Hashimoto's does not cause weight gain; Hashimoto's causes hypothyroidism, which causes weight gain. Your thyroid controls many of your body processes, including, but not limited to: metabolism, heart rate, body temp. When your thyroid levels drop, so do your body processes.
I'm wondering why your dose of levo got changed from 25 mcg to 88 mcg? I think your doctor was right to start you on a low dose. It's always best to start low and work up slowly in order to prevent a reaction. In addition, there may have been a dosage between 25 mcg and 88 mcg, that would have been right for you for a while, until it was time to go up to the next level. It takes longer to get well, when you go up slowly, but it also eliminates a lot of the chance for adverse reaction.
I'm also wondering what blood work they've done on you. After all you've been through, I will be very disappointed/angry if I learn that they dosed you based on TSH alone. The very minimum they need to run is TSH, Free T3 and Free T4........Please post whatever thyroid labs you have, along with the reference ranges, since these vary from lab to lab, so must come from your own report.
Many of us have walked in your shoes....... so we can certainly identify.
I hope you get a chance to check out the website that gimel posted.
When do you see your endo or PCP? Hopefully they have a plan for you & go from there.
Try to calm your anxiety.....thyroid issue are not a death sentence if treated correctly.
Try to calm your anxiety.....thyroid issue are not a death sentence if treated correctly.
What you have had to live with is intolerable. Your doctors should be embarrassed. I think a good place to start is with you reading the article in this link. It was written by a good thyroid doctor. I think it will open your eyes as to how you have been improperly diagnosed and treated for years. When you are through reading it, post again and let's talk some more. Also, please post your thyroid test results and reference ranges shown on the lab report.
http://www.hormonerestoration.com/Thyroid.html
http://www.hormonerestoration.com/Thyroid.html
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