Your Lyme advice is invaluable. Are you self taught from your own experiences? When I started the boards last fall, I asked where you were from after you referred me to Dr. J's clinic in Huntersville. Do you see a lyme doctor in TN?
I have had symptoms for almost a year. I went through all the same old routine as everyone else. I went over my calendar from last year and found I had 32 doctor visits, not counting derm. dentist and mammogram. My primary doctor was trying to rule things out.
During my physical the end of Aug. after having the same doctor check me over many times the previous months, she feels enlarged thyroid. I had a scan showing multiple nodules. My blood work and biopsy were neg. The endo said because of this, I do not have thyroid disease, nor should I have thyroid symptoms, only nodules. You know how much thyroid and lyme symptoms over lap. I was convinced my symptoms were thyroid related till the endo told me otherwise. I called my primary doctor that same day, and told her I needed a new blood work up. The one I had in April, she did not test for lyme because she felt the tests not accurate. I will give her credit to even suspect lyme, not that it helped me without the test. So, in Sept. I had more blood tested. I found out the same day that my thyroid biopsy was negative and I tested positive for lyme. I was surprised how the symptoms were almost identical.
I had to start synthroid the same week I started Doxy. I knew the doxy dose was not going to cut it. My doctor tried to refer me to infectious disease doctor in Raleigh, but the inf. disease doctor wouldn't see me. I guess she doubted I had lyme or that it was really a disease. My only other option was referral to Duke. Duke is practically in my back yard, but I knew they would want to do all the same tests I already had. That's when I started the boards and you referred me to Dr. J. I had already read of him, but thought for sure I'd be able to find someone closer to home, but there is no one closer. I travel about 2-1/2 hours to his location.
My tests done at the clinic confirmed lyme and ehrlichia. I started meds before the confirmation came in. I started feeling better in Dec. although I still have the tingling symptoms, right ear feels blocked with pressure on that side of face. I've had lots of symptoms come and go. I had severe joint swelling before treatment and with treatment, it got even worse. That is now better.
But...since the tingling also goes with thyroid, I keep wondering if I could have thyroid symptoms, even if endo claims not. I am on a low dose of synthroid. On my last endo visit, she was compassionate when she found out my lyme plight and felt she didn't want to increase my synthroid at this time to complicate things. I will go back in several months for more blood and ultrasound. I keep wondering when I started feeling better if it was the lyme treatment or the synthroid and wonder which meds or treatment will get rid of my remaining worse symptoms, whether they are from lyme or thyroid. I get overwhelmed at times thinking of this, wondering if it's one disease or the other, hoping I am not missing something that could help me. I also feel stongly that my thyroid nodules come from lyme. I find it too much of a coincidence to have both of these occur at the same time. My lyme PA says they see lots of lyme patients with thyroid problems.
Where do you stand with your lyme and thyroid treatment?
Your knowledge is a blessing to lots of people. How do you find all the lyme doctors all over the country?
Hi raleigh86. Thank you for your kind words My knowledge of tickborne illnesses comes from extensive research, correspondence with others, and my own personal experience. I travel out of state to see a doctor, there are none where I live.
I believe there is a connection between Lyme and thryoid disorders, particularly Hashimoto's Thyroiditis. Talk about a double whammy huh? I think it could be from the immune system being so overwhelmed from fighting the tickborne illnesses. You are right that many symptoms of both overlap. It can make you crazy thinking about it. I was convinced for a very long time that I had a thyroid problem. Repeated tests were "normal." What I did not know was that normal results are not normal for everyone. When I finally had thyroid antibody tests done the result was elevated. This gave me the ability to pursue treatment.
I am still new to this and have a lot to learn. I suggest that you get copies of all your test results. If the Free T3, Free T4 and antibody tests were not done, request that they be done. I am not sure but I think that most people with Hashimoto's have results in the normal range. It is important to see a doctor who does not rely solely on test results (sound familiar?!). Many people have good results with D.O.'s and nurse practitioners as opposed to endocrinologists.
What dose of Synthroid are you taking and how long have you been on it? Are you still being treated for Lyme? From what I understand, if you are not at optimal treatment levels your thyroid levels should be tested approximately every six to eight weeks. It can take time to get the medication regulated or to determine which medication is best for you.
I hope you can get these tests done soon. Post your results here--the people are wonderful and can help you interpret them. Make sure the tests mentioned above are included with those that are normally done.
Please tell me what kind of thyroid test I should ask for. I have my original one from Sept. 2004. It is thyroglobulin antibodies and thyroid peroxidase antibodies. It's only an in range, out of range test. I was in range. I had another test done last Dec. I don't have a copy of that, but assume it's the same type of test. I will call endo tomorrow so I can get a copy of the Dec. test. Because of all the lyme stuff I have going on, the endo told me to focus on that and see her in April for more blood and ultrasound to see if nodules have shrunk. I am still on my original low dose of synthroid, .025 mg. The endo would have normally increased it in Dec., but decided to wait till my next visit in April. Like I mentioned yesterday, I have tingling in hands and feet. This was my first symptom of lyme and or thyroid a year ago. Because the endo claims I cannot have thyroid symptoms, because she also claims, I don't have thyroid disease, because of blood results, but only nodules.
My lyme doctor found my white blood count low, probably due to antibiotics. I am on an every other day regimen until I have my blood retested at primary doctor in 2 weeks. I thought I would ask primary to run a more thorough thyroid panel, but need to know what I should ask for. I don't know if she will do this for me since I am under an endos care.
I start my first round of flagyl on Monday for lyme. I am very nervous about taking it, although I have read it's what turned some people's lyme symptoms around. I will take it Mon. Wed and Friday. If my blood is normal in 2 weeks, I will start back on my 5 day antibiotic regimen. It's funny how practitioners from the same office seem to have different antibiotic schedules. Maybe it depends on the patient. I keep wondering if the tingling is caused by thyroid and not lyme. I wouldn't care what the cause was if it went away. The tingling isn't nearly as bad now as it was a year ago when it was all over my body. I assume if the tingling is caused by thyroid, as my synthroid dose is increased, the symptoms might go away.
Hi raleigh86. From what I have read here, you should ask for Free T3, Free T4 and antibody tests in addition to the tests normally done (TSH etc.).
I suggest that you speak to your endo about increasing the Synthroid. You should not have to wait until April when you are still having symptoms. The dose you are taking is the lowest dose. It can take time to get things regulated. My guess is that the tingling is thyroid related. I have this also.
Good luck with the Flagyl this week. Make sure you do not have alcohol of any kind (even mouthwash etc.). I heard if you do when taking Flagyl it can make you very sick. Are you starting at a low dose and going up? Treatment for Lyme is usually done on an indivudual basis because the disease affects everyone differently.
Let me know how you are doing and what the endo says okay?
I just posted on the lyme board about my Flagyl experience. It's not favorable. I am on 500 mg twice daily. I don't know if I should have started lower. I will see my primary doctor for white blood count test next week. She will fax results to my lyme PA. I am asking my primary doctor if she will run these thyroid tests. If she will, depending on results, I might contact my endo early and see if she will increase synthroid. The tingling has been with me since the beginning, 1 year ago. I was diagnosed with lyme the same time as they found thyroid nodules. I really don't know what's what anymore. Like I said in earlier posts, the endo strongly believes the tingling is not from thyroid nodules. Maybe more in depth blood work will show something. She did test me for hashimoto which was negative. If my primary won't do the thyroid tests, I will definitley request them from my endo.