posted
Since there are a couple of other thyroid questions on the board right now, thought I'd chime in with mine.
Does anyone have any info or references to links between lyme and thyroid nodules or thyroid cancer?
I read something briefly about it in Dr B's essay "When to Suspect Lyme", but haven't seen anything else on the subject.
My drs (not llmds) are pushing me to have surgery to get the left lobe of my thyroid removed because it "might" be cancer.
I honestly don't know what to do. I really don't want to have surgery on top of all this right now.
Not only that, but the idea of surgery because it "might" be something, just doesn't sit well with me.
Do you think if the lyme is treated, the nodules could go away?
I haven't started tx yet. Have an appt in March with a good LLMD.
Thanks!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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posted
When my daughter first got sick and the ID doctor was ruling out everything before treating lyme, she sent us to an endocrinologist who found a growth in the thyroid. He did a needle biopsy, which confirmed a cyst. We have followed up on it for the past 4 years, and it has remained unchanged.
If you are not seeing an endocrinologist, I would urge you to do that. I don't understand why they are pushing you to surgery.
I would be interested in hearing about others who may have thyroid growths - wondering if there is a higher incidence among lyme victims.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Lymeout, I'm so glad your daughter's growth turned out to be a cyst. One less thing to worry about for both of you.
I had an endocrinologist, but fired her. She blamed all my symptoms on perimenopause and then refused to test my reproductive hormones.
My ENT's been handling most of my thyroid stuff.
He's ordered 3 FNAs (needle biopsies) over the past year.
The first came back non-diagnostic, the 2nd came back benign, and the last one in Nov came back as "suspicious for follicular neoplasm".
The problem with follicular neoplasms is that they can't tell if its cancer or not until they remove the darned thing and take a look at it.
He's been pushing for surgery since Day 1 due to the size of the nodule. Since the FNA results came back, now he's REALLY pushing.
I got the whole cancer scare/metasticizing speech from him the last time. Ugh!
When first found the nodule was 4.7cm. That's pretty big. It has shrunk a little since that time and is about 4cm now.
But whether that's due to material removed during the FNAs or due to the iodine/Armour routine I've been on, I just don't know.
Honestly, considering the fight that's now in front of me, I'm wondering if its still worth fighting the battle on this particular front.
Would love to find out more information on the connection between lyme and thyroid lesions as well as hear from people who have had both.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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posted
A thyroid nodule was found this past summer and I had an untrasound. Because of the size (large) I had a biopsy which was negative, I have to go for an ultrasound every six months and am waiting for the results from the ultrasound I had Monday.
My Endo says if any change in size and it will have to come out and may have to anyway cause it is very large. She said biopsys are not 100% accurate anyway.
I am nervous about surgery but she said it can be done with a local or light sedation. They numbed the area for the biopsy and I didn't feel anything.
Curiouser I would get a new endo and maybe a biopsy. Don't rush into surgery. I know for me surgery in the past has made my condition progress. TRhis was before I knew I had lyme.
I could be lyme related as alot of lymies have thyroid problems.
Posts: 262 | From nj | Registered: Dec 2007
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posted
Hi, I had thyroid nodules that ended up to be cancer (2001). If you ever need any info on testing, surgery, etc., just let me know. I've been through the gamet and then some. Lyme is related to thyroid dysfunction I know, but I had thyroid disease all my life.
I think I contracted Lyme when I was camping in the Sequoias (CA) in 2000. When I was undergoing testing for my "mystery" disease my thyroid nodules were discovered in a carotid ultrasound. That was dealt with - my other diasease (Lyme, I believe) never has been yet.
If you need support re the thyroid thing, let me know; been there, done that.
Patti
Posts: 27 | From Utah | Registered: Jan 2008
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Good luck on your u/s results. Hope nothing new shows up.
Yeah, I'm thinking about venturing once more into the untamed wilderness of Endoland.
After my experience with the last one, I'm kind of gun-shy.
I've already had 3 biopsies with 3 different results. Have a 4th one scheduled for May, along with yet another u/s.
I don't want to rush into surgery. Frankly, I don't want the surgery at all.
My thinking was maybe if I deal with this problem once and for all, it'll free some of my resources to be used for lyme.
The supplements for the iodine protocol alone are running over $100 a month.
Plus the added stress of having something that "might" be cancer doesn't help any either.
I really don't want to give up. I'm just tired.
Anyway, I'm still looking to see if anyone has any info on lyme and thyroid nodules/cancer.
Thanks!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've had a mutinodular goiter since 1986. It was discovered by my gyn. Since then I have gone to three different endos, but have managed to keep my thyroid.
Mine is monitored by ultrasound and I've also had fine needle biopsies. For mine they did NOT numb the site and it was quite painful.
The last time I was supposed to have one my white count was so low that it was cancelled.
It was also at the beginning of the extreme flare of my Lyme symptoms that caused me to have to stop working. I also changed endos, since my previous one had been terrible at relaying test info to me.
With all that going on my thyroid was forgotten for a while until I brought it up again to my endo last year. I had an ultrasound last summer and am supposed to have another prior to my next appointment with him.
My best advice to you is to find another endo. Ask your doctors, or even better, their nurses for names. I got the name of my current one from a nurse at the duck's office I formerly used.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Guess what I really need to do right now is find an endo and talk with a surgeon.
Even if I decide not to do the surgery thing, I'd probably have more info than I do now and would be more prepared if it comes to that.
The last year has been such a whirlwind and I'm really overwhelmed right now.
The thyroid nodules were found on a CT scan after I went to my PCP complaining of swollen glands that wouldn't go away.
The swollen glands are still there and have never been addressed, but my thyroid has been fully examined, poked, prodded, biopsied, tested, and otherwise violated.
I'm fortunate in having a dr who tests FreeTs in addition to TSH. They're below midrange, but every doc I've seen says they're fine.
Thinking I might ask to get my antibodies tested again. The last time, the TgAb was a little higher than I'd expected. Well within negative range, but still...
Anyway, thanks again. Might just take you up on that offer of support sometime.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
It truly amazes me how this lyme or company loves to attack the thyroid. It's amazing to me.
I have a long family history with thyroid disease. My thyroid/goiter problems started back when I was a teenager.
They treated me for a while with something I don't remember. Then I remember they said I didn't need it any more.
Then when I was 30 here comes all this strange symptoms again. Went to Endo specialist and all the tests revealed a goiter and hypothyroid again.
Started taking synthroid and it took over a year to get my levels and increased dosing to get it regulated with blood testing.
I remember a large tick embedded on me about 20yrs ago, in that same time frame. It was hidden in my arm pit. I happened to be looking in the mirror when I put my deodorant on. I called my mother and went over to her house and she removed it. I was freaking out. It was large tick in comparision to a nymph or deer tick. What some call a dog tick?
A few weeks after that I started having flu-like sx. At that time period there was alot in the news about Rocky Mountain Spotted Fever. I think there might of been some deaths related to RMSF and the press was all over that story.
I didn't have a regular doctor at that time. 30 and healthy, didn't need one??? I went to one of those immediate care places and was tested for RMSF, at my mother's urging.
It was negative. Thank goodness, my mother said.
I've got to wonder now that I think about that period in my life, if that was the beginning? It was 11 years later that major stuff started happening, after we bought a lake(tick) home.
Many times over the last 8-9 yrs I've remembered my only known embedded tick. Well that was until summer '05, when I found 2 embedded nymph lone star ticks at our wonderful tick home(we sold it last year).
I'll never know for sure. But this killing of tyhroid and thyroid meds and goiter, cysts thing has got me questioning?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Before I was diagnosed with Lyme, my doctor found a nodule on my thyroid (I was pretty sick with the Lyme, but they called is CFS/FM).
I went to see a surgeon who ultrasounded it. He said with the shape of it he was not sure he could get a definitive biopsy. He was concerned that it would miss cells that could be cancer. He suggested that I have it taken out - partial thyroidectomy.
I did it. I didn't want to wonder and worry about whether or not it was cancer. When they took it out, they found - no cancer. Pretty big relief.
I will say, though that my Lyme symptoms flared alot after that (not immediate, but over 3-4 months). I was not being treated for Lyme at the time, so I guess the buggers were just having a big old party.
I would not want to have any surgery that I did not want to have, but carrying around the thought that the doctor thinks I should and wondering if I had cancer or not would definitely drain my resources.
It is kinda taking a chance not to have the surgery. Also you are risking an increase in symptoms with the surgery.
With us chronic lymies, I think stressful things that we have to go through (like surgery or even divorce) will hit us harder than the general public, but I am not convinced that this is a good reason not to go through the stressful thing.
Sending prayers...
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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posted
I have nuodule on the rights side of my thyroid. New since developed bartonella. Same side as my symptoms of right sided shin bone pain, oily sweats on right side, twitching, low blood sugars, tremors, exaustion, head fog, weight loss,right sided musical hallucinations etc. Can only think that the bartonella caused the nodule. Any thoughts would be so appreciated.
Posts: 67 | From cape cod | Registered: Aug 2006
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I'd advise you to be cautious about heading into surgery.
Before I was dx'd with Lyme (but was very sick), my doctor discovered a thyroid nodule while scanning my neck for neck pain.
They took 2 ultrasounds, 1 fine needle aspiration, and 1 biopsy -- all inconclusive.
The doctor was very alarmed about the chance of cancer.
I was so desperate to find an answer to why I was so run-down and sick with bizarre symptoms. (Didn't know I had Lyme!)
I thought maybe this was the answer: all of my problems were caused by a thyroid tumor.
I spoke to a surgeon who recommended a partial thyroidectomy to remove it; better safe than sorry. I know now that if you ask a surgeon for advice, they will recommend surgery! So be your own advocate.
I had the surgery, and they took out more than the 1/2 of the thyroid they said they would. Now that I am operating without a thyroid, I have to take thyroid replacement hormone daily for the rest of my life, and the doctors can't seem to find the right dosage. I immediately put on 20 pounds (4 years ago) which I can't get rid of.
Not only do I NOT feel better from having the benign cyst/nodule removed, but I believe that it was caused by Lyme and it would have resolved with treatment for the root cause: Lyme. I think the surgery was unnecessary, and if I were given the choice again I would not do it.
I saw an endocrinologist a year after the surgery, who told me that I had had Hashimoto's Thyroiditis. Has anyone mentioned this to you? She said that the cyst would have gone away with treatment, no surgery necessary.
Everyone has to make the decision that is right for them; I just hope it's helpful to hear my story.
Feel better.
Peace, chicago bird
Posts: 69 | From Chicago, IL | Registered: May 2006
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posted
Hey guys, the thyroid is the virtual control center of our bodies, and controls or governs all of our other hormones. It is really sensitive to any environmental toxins, bacteria, viruses, etc., according to my endo.
I guess it makes total sense that Lyme disease would really affect our thyroids and cause problems, though I didn't really make the connection until lately - I wish my docs had!
About the tests for thyroid disease - my nodules were detected by carotid ultrasound, right side only. My fine needle aspiration revealed "suspicious for, but not diagnostic of papillary carcinoma." How's that for gray? You must insist your doctors do more than the TSH; they must do T3, T4, free T3, free T4, thyrogobulin, tsh antibodies, and the most important one for me, TSH receptor antibodies.
The reason I quit taking synthroid in the past was that it never made me feel any better. That's because it only gives you one of the thyroid hormones (T3 or T4, I can't remember). When your cells are resistant, as mine are, your body can't make it's own T3(or T4) from the synthroid. That's why taking a form of thyroid that gives you both T3 and T4 makes all the difference. I take Armour.
Also, Hashimoto's is an autoimmune thyroid disease. A good friend of mine has that, which turned out to be ThyCA as well. We have the same endo, and he said that much of the time the large tumors or goiters of Hashimoto's are treated with thyroid meds and systemic radiation called I-131 to shrink and kill the thyroid gland. I had this type of radiation 3 times with my ThyCa.
I know everyone must do what they feel is right for their own bodies; knowing you have LD certainly complicates things. If I knew I had LD I would have treated that before I would have done anything about my ThyCa, unless it was the more dangerous and virulent form called anaplastic, which is life threatening. However, ThyCa can quickly metastacise to your neck and other places, as it did with me, and I must admit I was happy to have the thing removed.
It was a 24-hour hospital stay with a prolonged sore throat. I've had much worse! But no surgery should be entered into without great introspection of course.
I'm just learning about Lyme and hoping to overcome as I prepare to be tested and seen by an LLMD. I'm grateful for this board and all of the education and support. I'm more than happy to answer any questions I can about ThyCa.
Patti
Posts: 27 | From Utah | Registered: Jan 2008
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posted
So many replies! Thank you all! -----------
Lymednva, That's a good idea asking the nurses. Will pick their brains the next time I head over there. -------
Map1131, So sorry. Sounds like you've been through a lot.
My thyroid problems were found a year ago. I'm certain I've had lyme considerably longer than that, even though I only got my test results back last month.
Oddly enough, I'd felt there was a single underlying cause for everything that has been going on and it sure as he** wasn't just "getting older".
That's why I kept pushing my drs to look further and have been doing so much research on my own. ----------
Listenswithcare, I've also been dx'd with CFS, but never fully accepted the dx. It just didn't "feel right", you know?
Now that I know I have lyme, the post-surgery flare is a lot of my concern. So far, my sx have been a pain to deal with (literally), but manageable.
Overall, there's between a 15-30% chance of this being cancer. Yes, it'd be nice to know, one way or the other.
Still, I just can't get behind going through all this, risking an increase in lyme sx plus the risks of the operation, just to find out its benign. -----------
Capebite, My body does the weird one-sided thing too. While I have cysts on the left side of my body (thyroid, breast, ovaries, cervix), most of the pain is on the right side.
Its like someone drew a line and said "ok, this side gets this and that side gets that". Still trying to figure that one out.
I'm sorry you're feeling so bad right now. Hope you find some relief soon. ------------
Chicago_bird, Yes, thank you. What happened to you is a huge part of my fear. And yes, I admit I'm scared.
I've been tested for Hashi's, but my antibodies seem to be ok. TPO was at 5 and TgAb was at 22.
The TgAb was a little higher than expected, even though its still in the negative range, and I'd like to get it tested again. -----------
Lyme ED, The thing about thyroid cancer is that its slow growing and easily treatable, even if it metasticizes. There usually isn't any rush.
In my case, there's a 15-30% chance of this being cancer. The odds are in my favor of this being absolutely nothing to worry about.
I consider mole removal to be minor surgery.
When they cut your neck open and run the risk of permanent parathyroid damage, nerve damage, and/or voice damage, I don't consider it to be minor surgery.
There are a lot of delicate structures in the neck and the surgeon really needs to know what they're doing in order to avoid causing more problems than they're solving.
Considering the surgery could also make my lyme sx worse and I'm not currently in tx, it only adds yet another dimension to the picture.
Thus my quandry. -------------
Patti, Thank you for sharing your story.
Its not like anything needs to be done about this "right now!".
I have an appt with an LLMD in March.
Think I might just wait until after seeing him before I decide one way or the other.
He might also have some additional insight into the iodine protocol I'm on and can give me a few tips to boost its efficacy. ------------
Thank you all again! You've definitely given me a lot of things to think about.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
***" My body does the weird one-sided thing too. While I have cysts on the left side of my body (thyroid, breast, ovaries, cervix), most of the pain is on the right side."***
Yep, me too.
I have a 'cold nodule' on the left side of my thyroid and some kind of bone nodosity on my L wrist, yet most of my symptoms are on my right side.
When they found my thyroid nodule, my PCP wanted to schedule me for surgery immediately! I insisted on a getting a thyroid scan and then got the biopsy thing done - negative for cancer.
One thing you might consider..... the endocinologist I went to who did the biopsy kept apologizing for all the biopsies he took - he says he always takes plenty of samples to make sure the lab has a good selection of tissue to look at. I think he took 7 samples, at least. And I didn't receive any anesthetic of any type and it was pretty painful - but not unbearable.
Oh, one other thing.... My brother had cancer of the thyroid and they removed it. But to this day, his doctors still check him out every year with scans and other tests because -supposedly - it is rare for cancer to START in the thyroid. It usually starts in another organ and spreads to the thyroid. So, my brother's docs still keep looking for OTHER cancer that they are convinced must be there somewhere. (!)
Anyway, with Lyme in the picture, this whole cancer thing may not fit into any kind of normal 'model' of disease (whatever that is).
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Curiouser, I'm glad you are being so level-headed about it. Sounds like you are very well informed about your thyroid situation.
For some reason, with me, the doctors never told me I had Hashimoto's. I didn't find out until after the surgery, when the endocrinologist looked back through my records and asked me if anyone had talked to me about it -- no, they hadn't! Now I'm much more demanding about getting the details from doctors. This whole ordeal has been a real education in standing up for myself.
After I got that surgery, I looked through the lymenet boards and saw a lot of posts from people here with thyroid nodules. Mine was benign, and I hope yours will end up being benign, too.
Glad to hear that you are seeing a LLMD in March. Hope your appointment goes well -- there is hope!
chicago bird
Posts: 69 | From Chicago, IL | Registered: May 2006
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-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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posted
It's ironic reading this thread. I have had a partial Thyroidectomy [1985], and the nodule was found to be benign. I've been known to have nodules even before the Lyme-like symptoms began, so I wasn't alarmed when the doctor found a couple this past December through an ultrasound. They did a biopsy and aspiration, and found that the fluid filled nodules had "atypical cells". They did a follow up ultrasound and aspiration in March, and found the same thing. There were no issues with the solid nodule.
They mentioned that while the results were "atypical", that no cancerous cells were found. So, they feel like there's nothing to be overly alarmed about at this time. Both my ENT and the Endo stated that the chances of a person getting Thyroid Cancer is around 1%, and both recommended I just follow up with another ultrasound in September. They both also felt that since they've "poked" around twice, there should be no need to do it again, if the next ultrasound yields no changes in the nodules.
I am wondering out loud here, but I'm curious whether anyone thinks that they might find spirochetes in the cells themselves. Of course they're not looking for them when they review the slides, so they wouldn't find them. I wonder though!
posted
Truthfinder, Sorry it took so long for me to respond. Completely forgot I put this thread out there. LOL!
I've had three thyroid biopsies. Ugh! They've been very painful every time, in spite of numbing procedures.
The first time they used lidocaine (sp?) and the last two times they used a numbing spray. Unfortunately, it only numbs the skin, not the underlying structures. Ow!
I've been fortunate enough the past two times to have a pathologist in the room to take a look at the samples before they send me out the door.
I've never heard of your brother's drs' theory before. Sounds odd to me, although I really don't have any basis for doubt. --------------
Chicago, Thank you.
LOL! Maybe I sound level-headed now. Should have seen me a year ago when this was first discovered.
Who me? Panic? Nah.
--------------------
Tic, Tag. You're it.
--------------
Craig, Been wondering about that myself.
If I do end up getting the surgery, I'm going to request the pieces be saved.
I want to send them to Igenex for testing.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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