Hoshimotos disorder and Fibromyalgia

[seamoon_lady]

I had half of my thyroid removed 10/06 due to a large nodule.  When biopsied it was discovered that I had a small 1/8" on thyroid that had cancer (not requiring treatment), but I also have Hoshimotos disease.  My Endo doc put me on Levoxal (80mg), which I started about four weeks agao. I have also had Fibromyalgia (bad) for about five years or more.  I virtually always have had pain, sometimes so bad I did not know how I would get by...until 3 weeks after going on the Levoxal.  I woke up one mornong and felt like someone shut the noise off...I have not had pain for about 2 weeks.  Could this be related?

[Mark Lupo, M.D.]

Yes - hashi may be related to FM - more study is needed but have seen patients report significant decrease in pain with thyroid hormone treatment.  This is not typical, but does occur.

I presume there was only one spot of cancer -- if more than one (even that small) - then you need completion thyroid surgery and I-131.  If only one - keep an eye on the other lobe with serial ultrasound.

[utahmomma]

I have found that my fibromyalgia is much worse when my TSH levels are off (Synthroid levels too low or going off Synthroid for RAI).  I feel best when my levels are less than 1.0  

I just started my Synthroid again three weeks ago following RAI and I'm only now beginning to feel human.  The body aches and pain of the fibromyalgia were almost unbearable when my TSH levels were high (tested at 75.9 three days before RAI).  Calcium also made a huge difference.

[seamoon_lady]

Being new to this entire thyroid thing, I am not even sure what normal levels are; however I have been told that my levels were normal all along.  I am having difficulty with this because since being on the Sinthroid (generic brand) I have no pain and this has nor happened in at least 5 years.  Also, can you tell me what RAI means?

Thank you,

Sandra

[utahmomma]

Your "normal" levels should be listed on your lab work.  Each lab has a slightly different range.

About RAI (sorry, when you've spent the last few months obsessing about a procedure you just start to use its nickname) is short for radio-iodine treatment (you will also see it called I-131).  I-131 because it is radiation hooked to iodine.  This is a typical treatment after thyroid cancer and after the entire thyroid is removed through surgery.  It's nearly impossible to get all the thyroid tissue removed during surgery as it sticks to nerves and blood supplies that you don't want to cut.  The cool thing about thyroid tissue is it is the only tissue that will absorb iodine.  That being said, they starve your body for iodine (and thyroid meds) for a few weeks then give you a dose of radiation tied to iodine (hence I-131) and it is absorbed by the thyroid tissue and kills it off.

My thyroid cancer was found three years ago following removal of my right lobe for a small, suspicious nodule.  Over the next 12 months all my sisters and my daughter were also diagnosed either with thyroid cancer or pre-cancerous cells in their thyroids (and all were completely removed).  So the following year I had the other 1/2 of my thyroid out (preventative).  All was well until a few months ago when my TSH went from 0.7 to 2.1 within just a few months and it became more difficult to swallow.  My endocrinologist had me undergo RAI to kill off any remaining thyroid tissue and any thyroid cancer that may have come back.

Sorry, long answer for a short question.

Here are some WONDERFUL thyroid sites that can help you:
http://www.cumc.columbia.edu/dept/thyroid/
http://www.endocrineweb.com/

Have you spoken to your endocrinologist (I hope you have one, if not find a good one that treats thyroids) about the possibility of needing the other 1/2 out?

I would bet that your thyroid meds have helped your pain from fibromyalgia - I know I can really feel a difference.

[seamoon_lady]

I did only have one small spot on Thyroid...my doc has ultasounds planned and sees me often.  Thank you all!

[kskid]

Was Dx with fibro @ 18 while in nursing school now@ 32 my world is turned upside down. tend to ignore all the weird aches and pains as the fibro.in the past 8 months have lost 75 pounds have mult. lobe nodules on topral for tachycardia xanax for anxity and flexaril for the fibro.have had many cases of what Dr says are syncopal episodes that cause me to have seizure LIKE act. have visual disturbance and nausea and pounding heart and confusion prior to these episodes have learned the s/s and most times can bring my self out of it or min effects or so ai like to belive.have pain in neck and a constant pressure and a pop everytime I swallow. My list goes on and on the thing is the most recent strange activity in my life was a episode that started at the walmart felt like I was working up to a syncopal episode so got the heck out scary thing is dont remember the drive home sat in my recliner and for the next 3 hours thought i was going to die!freezing cold,shaking,lt side of face numb and lt arm feet numb bilat.in and out of a wakeful state felt so helpless once was coming out of this state spent the next 2 hours crying without any control as a matter of fact I felt the effects of this into the next day weak and unstable. have been told per echo have slight mirtal valve prolapse but not enough to worry about.have been told per eeg that one of the waves slight abnorm could show seizure but related it to the xanax iodine uptake showed that my thyroid was not doing anything barley showed up. needle biopsy negative. event monitor for my heart showed without the topral that my pulse reached 200 on reg basis.I am a mess and taken about all I can withstand all while managing a home a 6 year old and a nursing carrer.have seen internal med dr, endo, nero, ent none know what is cousing problem and are trying to manage with meds mentoned before.have had countless blood tests 24 hour urine tests mri echo sono eeg holter  monitor event monitor needle biopsy chest xrays ... and still nothing t4 level is getting lower but still at low end of norm so no one belives it is my thyroid.has anyone out there ever heard of some of my s/s and have any thoughts on what the heck could be wrong with me am about to loose my mind!

[retiredesol]

I believe I've had fibromyalgia since I was about 8 years of age, and I'm now 64. I was first diagnosed with growing pains and a whole string of other diagnoses. I was formally diagnosed in 1986. I was diagnosed with hypothyroid also around 8 years of age; later specifically Hashimoto's. I find that when my thyroid is under control and properly medicated, my fibro is better. But sometimes they seem unrelated. Who knows? I took Armour thyroid for years and every time I tried synthroid, my thyroid numbers jumped all over the place. I had to stop Armour when I accidently overdosed; I'm now on levothyroxine and the thyroid seems to be stable. I also go to an acupuncturist and an environmental allergist who treats my immune system. With both of these treatments, and a stable thyroid, I seem to be doing better with the fibro, having less pain and tiredness, and less fibrofog.

[Susie Belle]

I just read your post and your symptoms are so much like mine Believe me I know what you're going through.  Are you also dizzy and light headed?  The range of symptoms just go on and on ... most of them bizarre .. when you share them with anyone they look at you like you're crazy.  It's totally overwhelming to doctors because they don't know where to start with a diagnosis.  Like you, most of my tests have come back "normal" which makes me feel like a hypochondriac.  I have lived for years with these weird symptoms but as I continue to get older, they just continue to get worse and more are occuring.  Nobody knows how debilitating it is or how scary.  I don't have children at home anymore, but I work two jobs and there's days when I feel like I can't function.  For some reason, large department stores set my symptoms off too, don't know if it's the flourescent lighting, the noise, or other stimulus around me.  I just know that I wish I could find some type of an answer so that I could feel "normal" again.

[Cheryl12345]

I am new to this forum and was just reading your comment.  It is unbelievable to me how much in common I have with you.  The symptoms, department stores.  I dont know if it is anxiety or what but I have ventricular tachycardia and just found out my tsh level is 9.5.  My primary doctor still doesnt think there is anything wrong with my thyroid but according to the comments on this website it is considered high. I made an appointment to see an endocrinologist.  I just had to post after reading yours and kskids comments.  Thanks for letting me vent