Thyroid Nodule...is Lyme the culprit?

[carrie235]

Good Morning,

Before I realized I had Lyme, I had made an appt with an endocrinologist thinking my symptoms might be thyroid related.  Even though I'd had my thyroid function tested many times, I wanted to see a specialist.

Anyway, my thyroid is functioning fine however, during my exam, she discovered that I had a nodule (approx 1 cm at the time).  She sent me for another ultrasound which I finally got around to doing about three weeks later.  The nurse called me day before yesterday and told me that my nodule is 2.3 cm, growing and has blood flow.  I asked if if this was not a good think and she replied, no, is not good.

Now I am afraid I might have cancer.  I'm scheduled for a biospy on March 14th and am calling every day to see if I can get in sooner.  

Lyme ruined my gallbladder (my LLMD says he is sure that is what caused me to have to have it removed), I had that removed....is it now attacking my thyroid?  Do people with Lyme ever report this?

Oh my goodness.....I was feeling so happy with the Lyme Dx (yes happy because I finally knew what it was) and now this..

Anyway, I posted on the thyroid forum yesterday.  I'm starting to wonder how many more forums I'll be joining!

Thanks.

[JackieCalifornia]

Welcome.  Sorry to hear all you have been through and are still dealing with.

I too had problems with my thyroid when I had Lyme and babesiosis, but the thyroid issue wasn't taken care of until the Lyme antibiotics were over with and I started seeing a new doc who look at the 'big picture' of how it all fits together.

I do not know how Lyme affects thyroid function, but it certainly seems to mess with it in many of us.  I was on thyroid supplements for a while, but then suddenly my thyroid kicked back into gear and I was a real mess with symptoms of HYPERthyroidism.  

There is a writer named Mary Shomon who has published a bunch of books and webposts about thyroid issues, but I don't know how much she knows about Lyme-and-thyroid.  You might search for her name online, you'll find her easily.

If your new endocrinologist is not wise about Lyme and its evil ways, then you may not get the best guidance.  Did the endo work with your LLMD, before he went on leave?  If so, that's a good sign.

Sorry not to be more help.  Let us know how you do, okay?  Take care --

[cimdy]

Lyme ***** when are they going to find something that will wipe Lyme out of the body. It took forever for me to get treated, until bloodwork sent to igenex labs...13-14 months of antibiotics to treat babesia bartinella and Lyme only after loosing my gallbladder taking out 3 enlarged lymphnodes in my mesintery area ...that turned out benign and cysts on ovaries and endometrious... It's been about 1.5years since I stopped treatment and now there are antibodies attacking thyroid and nodes on thyroid....when does this stop...I was so healthy before all this....I know steroid therapy is a no no with Lyme....what is the endocrine going to want me to do....don't have appt yet. Wish the Lyme literate doc was still practicing but know he i went out on med leave. Why are doc so dumb to this horiffic epidemic!

[JackieCalifornia]

Zoe,

You sound very well prepared mentally to address whatever this is that is afflicting you -- that makes a big difference day to day in coping with whatever it turns out to be.  Good for you!

There are some Lyme groups in Canada, if you google around a bit.  Canlyme [dot] com is one I am aware of.  A geographic descriptor can help, like "alberta lyme disease" or "toronto lyme".  

Let us know how we can help.  We're usually lurking around the water cooler here somewhere.  :)

Best to you and you little ones!  J.

[Zoe5710]

Thank you for your comments, guys!

Carrie, I just wanted to add that I remember when looking at information about nodules that the VAST majority of them are benign. I don't remember the percentage, but it was very high. And so many women have nodules and just don't notice them because they don't grow large enough or affect thyroid function. Let us know how the biopsy goes! I know it's stressful.

Thanks Jackie for the information on Lyme testing. I'm not sure which tests my neurologist is even running (I'm assuming ELISA and Western Blot?) because the requisition for the lab just said "Lyme serology testing".

It wouldn't be easy for me to find a Lyme specialist as I live in Canada where we don't have LLMD's. Part of the issue that our health care is publicly funded so we don't have to pay for any services. This means it is illegal to charge patients for medical services so there are no private doctors/clinics. If the public system has decided that a particular test or treatment is not appropriate, then you can't find it anywhere even if you are willing to pay. This leads some people to travel to the US for a "controversial" therapy such as MS patients traveling for angioplasty or perhaps people visiting an LLMD across the border.

I guess I'll need to wait for the results to figure out where to go from here. If they are strongly positive for lupus and negative for Lyme, I guess I'd focus on treating lupus. I have heard of some problems with misdiagnosis between lupus and Lyme though. I've had a normal MRI and EEG. I had a positive ANA (1:640) with a speckled pattern, and also found out I have low iron stores (24) and high blood glucose (0.060 HGA1C).

The neurologist referred me to a rheumatologist based on the ANA and I see him tomorrow actually. I'm supposed to follow up with my family doctor about the blood sugar and I'm on iron supplements. The neuro said that neither low iron or diabetes could account fully for my symptoms so his money is on an autoimmune disease.

I was bitten by a tick in Denmark in 2001 and didn't take any abx at the time (because my doctor told me that I didn't have Lyme Disease because I hadn't gotten a rash -- no testing was done). I was healthy until the last few years when I started getting swollen lymph nodes and flu-like symptoms periodically, as well as occasional stiffness and soreness in my fingers. Then I started getting migraines (some with aura symptoms without headache) and tingling in a patch on my back and in my cheekbone.

Then in November of 2010 I had an acute episode of tingling in one arm and both legs, stomach problems, cognitive trouble, shakiness, and extreme feelings of cold. I went to the ER the first time and they suggested possible MS. I've had about 4 episodes like that, but even on the good days since then I've had a ton of weird symptoms: tingling in various places, bad numbness in my feet, facial pain, tremors, trouble thinking clearly, episodes of nausea and vertigo, fatigue, leg weakness, etc. It took me 2 months to get in to see the neurologist. The only obvious thing in my exam was polyneuropathy in my feet/legs.

So... I think that Lyme is a possibility especially since I do recall a tick bite, but getting testing and treatment here will be difficult. I'll let you know what the rheumatologist says, but I recognize that he will not likely be supportive of Lyme treatment. I'm being testing for the anti ds DNA antibodies right now. They are very specific to lupus so that might build a stronger case for lupus as the cause of my symptoms. We'll see!

Thanks again for your comments!

Zoe

PS I'm 29 years old and was in good health until recently. I have 3 young children.

[carrie235]

Thank you very much for the message regarding the Thyroid.  I actually am over worrying about it.  My main concern is getting the lyme under control and I'm doing everything possible to get my body healthy again.  I go in for my biospy on March 14th and I'm sure it will take about a week to get the results.  I'm sure I will be anxious during that time, but hopefully, like you said, everything will turn out fine.

Definitely take Jackie's message to heart.  Your lyme test probably will come back negative.  If you are having symptoms, go see an LLMD.  Don't wait.  The sooner you start getting treated, the sooner you can get better and stop the symptoms from progressing.  

I soooooo wish I'd done the testing a year ago when I first started having symptoms!  

Take care and let us know the outcome!

Carrie

[JackieCalifornia]

Thanks for your interesting comments on the thyroid question -- that's valuable data.

May I make a passing note about your comments on your upcoming Lyme test, if you don't mind ....

It is good that your doc is willing to run a Lyme test, but fair warning that the test he is likely to run is one that Lyme specialists do not generally find useful; the tests that a Lyme specialist would run are held in contempt by nonLyme specialists; and the interpretations of the test you will likely get are usually done in a fashion that down plays any positive results.

The newer tests done by Lyme specialists are different in their structure, and a Lyme specialist is likely to read both the 'regular' tests and the newer tests in a way different from a nonLyme doctor.

Result:  you are quite likely to get a negative conclusion from the testing even if you have Lyme.  It is a wide spread problem in the medical community, and one which many of us have had.

A nonLyme specialist reading my comments here would say that I am a crank who knows nothing about medicine, and that's always a possibility.  I will say however that the 20+ MDs I consulted when I was very ill were completely clueless, including the nice one who in desperation ran the kind of Lyme test you are probably going to have.  The result was mildly positive (even on this lousy test), and the doc dismissed it as having any significance, saying very gently:  "Oh, you couldn't have Lyme.  I have patients with Lyme and they ... are ... all ... near death."

(Gee thanks, doc.)  That lousy test, wrongly interpreted, was the first clue I had, and I got myself to a Lyme specialist, who ran newer, more precise tests that nonLyme docs scoff at.  Got a strong positive result, got treated, got well.  I also was diagnosed with a co-infection similar to malaria, which a nonLyme doc would not have thought to test for based on my symptoms.

I was visibly ill, but not everyone is.  I insisted that someone else in my family be tested too, and tho there were few to no symptoms, the test results were strongly positive.  Treatment for both of us worked.

Oh, and Lyme can affect thyroid function in a big way -- Lyme bacteria have a trick of hijacking various bodily system, including esp. the endocrine system, and they do so in stealth mode so that it takes an experienced diagnostician to see the whole picture.

Bottom line:  if you recall a tick bite (I didn't) and if you 'have many symptoms of it' and your thyroid is having problems, I would tell you if you were my best friend to *go find a Lyme specialist for a work up.*

There is a theory in the nonLyme medical community that any symptom left over after a couple weeks of antibiotic treatment are 'auto immune', that your immune system is in error, reacting to a disease that is no longer there.  I'm sorry, but that just doesn't wash for me.  The more reasonable, more scientificallly valid conclusion in my mind is that the disease was not cured with a few weeks of treatment.

Lyme bacteria have a very slow reproductive cycle, and it is when dividing (while reproducing) that all bacteria are most susceptible to antibiotics.  Regular bacteria reproduce in a matter of hours, so over a two or three week period of antibiotics, there are many bites at the apple, wiping out most of them over the treatment period.  Lyme bacteria are different.  Like the bacteria that cause tuberculosis and leprosy, they reproduce VERY slowly, and so need longer treatment.  TB treatment is commonly 18 months.

So it's nice of your doc to 'humor you' by sending you for a Lyme test, and I would go ahead and do it, with the understanding that the test isn't very accurate and any positive results may be disregarded by your doc in any event.  But then you can take those results and find a Lyme specialist and get a second opinion.  That is what I would do, and what I would advise my friends and family to do.  I'm not medically trained, but I've lived with Lyme and now two coinfections (I got bitten again) for upwards of five years, and I would go get tested.  Your immune system may be holding much of the disease effect in check for now, but that's not a reason not to pursue it.  And your thyroid situation may or may not be related.

And a final sour note:  rheumatologists are generally NOT open minded about Lyme, for historical reasons, so keep that in mind, but no reason not to see him.

Sorry to rain on your parade.  Hope you are all right and things go well.  Best wishes --

[Zoe5710]

Hi Carrie,

Sorry to hear about your thyroid nodule. I had one when I was 17, had a biopsy, and then had the nodule removed. I had a single nodule (which is supposed to be more worrisome than many small ones) and it had good blood flow (like yours - also more worrisome) and it was not producing thyroid hormone (also worrisome). Then the biopsy showed that it contained Hurthle Cells, which can mean it is becoming cancerous. My actual thyroid function was always normal. So I had the nodule removed along with a small part of the thyroid and it turned out to be benign when it was examined by the lab! I didn't require any additional treatment and my thyroid function has been normal since then as well, despite that fact that I am missing part of the gland. That was 12 years ago. So, these things can work out well and not be big problems even if the initial screening is concerning. I hope your situation works out as well as mine, or perhaps even better -- if the nodule is shown to be benign on biopsy, you won't need to have it removed at all unless it grows very large.

The biopsy itself wasn't a big deal. I was a bit nervous, but it was not painful. And even the surgery was very straightforward with minimal pain afterwards.

As for Lyme disease causing thyroid disfunction, I suppose it is possible. I do not have a diagnosis of Lyme, but have many symptoms of it and did receive a tick bite years ago. This was after my thyroid nodule though so in my case I can safely say they were not related. I just got blood tests back with a positive ANA (1:640) so my doctor is thinking I have lupus or another autoimmune disease and is sending me to a rheumatologist. I asked him to test for Lyme and he said he would "humour me" and added it to the blood test. We'll see where that goes!

I wish you luck! Feel free to send me a message if you want any more information about thyroid testing or surgery.

Zoe

[carrie235]

Thanks Jackie.  I'm trying not to worry.   It's the blood flow thing that I'm worrying about but you are right, worry doesn't do a body good.  

My daughter just got engaged and is getting married in August.  I was excited that I was going to plan from a to z but after a few days realized that ...woaaa....too much stress and am now interviewing wedding planners.  The body doesn't need the stress right now.

Anyway, YES, I will get copies of all reports and give to my LLMD.  Luckily my appt for my Biopsy is about a week before my next LLMD appt so hopefully I will have results before my appt.

Have a great weekend!!!!!  

[JackieCalifornia]

Lyme can mess with thyroid ... I just don't know the parameters or mechanisms.

I also had thyroid nodules and had 'fine needle aspiration biopsy', meaning they take a very fine gauge, skinny syringe, numb your skin, and take a little bit of fluid out of the nodule to look at under a microscope to see if it's anything to worry about.  Takes a few seconds, no pain.  My results were no big deal.

What my docs did NOT do was figure out that my thyroid was having conniption fits about something, and never tried to relate it to what turned out to be Lyme.  My LLMD finally figured that out, and low thyroid runs in my family too.

Endocrine stuff is very complex, so don't jump to any conclusions...  After you get the biopsy done, I would definitely send/take the results to the LLMD before taking action, so that the docs are communicating (if not with each other, then at least through you).  The problem, as you know, with nonLLMDs is that they do not have Lyme on their radar screens and so don't take it into account when looking at other ailments, as with your gallbladder.  

***Don't borrow worry.***  I'm guessing the biopsy you are having is with a needle?  Takes like 30 seconds and doesn't hurt.  Then I'd be sure the LLMD gets a copy of the results before you decide to take further action.  Docs unfortunately don't talk to each other, and too often don't talk to US either, so take charge!

Repeat:  Don't borrow worry.  It just weighs down your immune system and your mind.