My thyroid was out of whack even before being diagnosed with Lyme. I had leveled off in taking a certain dose of synthroid, but since having lyme my dose has needed to be incresed twice.
Currently my Primary DUCK orders the blood work, and adjusts the dose. But now I am wondering with the complications of Lyme who should monitor my thyroid-my primary Duck who's totally ignorant about lyme, my LLMD, or should I seek an endocrenologist?(sp)
My LLMD seems reluctant to take on the thyroid, and focus on Lyme, because I did ask her, since I go for monthly bloodwork anyway if she could monitor the thyroid and she said no go to primary duck. So I'm thinking endocrenologist-I'll learn to how to spell it eventually.
Please share your experience with this, Thanks, Carol
Posted by Michelle M (Member # 7200) on :
Initially, my primary care dx'd it, while I was hunting for a handle on what was wrong with me (violent headaches, fatigue, etc.) "Thyroid," she said.
Went to an endocrinologist. She dx'd me with migraines, menopausal stuff, 'anxiety,' hypothyroidism (actually, I had neuroborreliosis and babesia).
So now, I've conned my LLMD into just checking my levels (including free's) every little once in a while when he does bloodwork.
It's my sneaky little plan to trick him into becoming my everything-doctor!
Michelle
Posted by Carol B (Member # 9110) on :
"including free's" ????? Whazzzthat?
So are you seeing an endocrinologist at all now?
Are you taking medication for hypothyroidism? Inquiring minds want to know.
Carol
Posted by Michelle M (Member # 7200) on :
Hey Miss Clairol.
Meaning not just checking TSH level, but free T2 or T3 (I forget what-all they're called, ha ha - no surprise! -- but it's the whole thyroid panel, not just the TSH).
I am only on Synthroid.
I think I am at .75 mcg or something like that. TSH usedta be at 7 or 8; took several adjustments to get it down to a level between 1 and 2.
I do not see my endocrinologist duck any longer.
I tired of them. I penned them a nice letter informing them that sometimes 24/7 migraines, hyperacusis (misdx'd as 'anxiety'), multiple brain lesions on MRI, and so forth, might actually be caused by lyme disease, and to try and not be so freaking fixated on hormones and menopause. I never did hear back from them.
Michelle
Posted by riversinger (Member # 4851) on :
My osteopath oversees my thyroid treatment. My LLMD also likes to keep and eye on it, but he is not as aggressive in treating the thyroid, so I prefer my osteo.
Michelle, if you have migraines, you may need T3, which you can only get through Cytomel, or a natural med like Armour. For many people with Lyme, they are not able to convert the T4 in Synthroid to the active form of T3. I found this is true for me. On a T4 only med, my T4 was at the top of the range, and my T3 in the toilet.
Now, on Armour, I am doing much better. Some need a small amount of T4 added to the Armour, as pigs naturally make a higher ratio of T3 than we do. Its easy to add a tiny dose of Synthroid or some other T4 med to your daily dose if needed.
Anyway, Carol as long as your primary is willing to keep your dose adjusted, you may do fine. Treating thyroid is almost as hard as treating Lyme. I haven't heard really good things about most endocrinologists, though there are a few who are good. Many of them focus on diabetes, and don't do well treating thyroid.
There is a really good thyroid board at http://thyroid.about.com Posted by Carol B (Member # 9110) on :
Hey Riversinger-there are so many fronts to keep track of at one time.
Osteopath? I have bone loss. I have an oncologist who is keeping track of my bone density-and she said even though I am taking raloxefin (which should help with bone thinning,) my dexa scans still show progressive bone loss. I see her this coming Wed. and she talked about starting me on Boniva, or something like that. I already take Calcium and D.
Tuesday I go for an MRI of my spine to evaluate for arthritis and/or a ruptured disk.
I bet we all have a list of specialists in our medical histories that's way too long. Sure wish that treatment center Tincup was talking about would open soon. A One Stop Shopping Health Center.
Carol
Posted by FoggyLikeLA (Member # 8170) on :
They test thyroid at FFC where I'm at. He checked free T3 and T4 one of those he told me, i forgot which, the doctors usually over look. I get the natural thyroid hormone instead of synthetic from a compound pharmacy. If your low on energy you should have it checked. I',m only 26 but lyme ahs thrown it waaay out of wack. It really helps. Is yours natural or synthetic?
Posted by Jill E. (Member # 9121) on :
I had autoimmune thyroid disease (Hashimoto's) ten years before Lyme and had it completely under control with Synthroid. But Lyme has made it go wacky.
I asked my LLMD which thyroid tests in addition to the usual ones I should ask my internist to start testing from now on, and he also said do the Free T3, which my internist and previous endocrinologists never or rarely did. He said Lyme competes with the binding sites for thyroid, so no surprise my thyroid has gone abnormal again.
I did go see a new endocrinologist recently (I had parted ways with my old one years ago over other health issues) and he yelled at me that how dare I tell him, the thyroid expert, about how Lyme can disrupt the thyroid and the whole HPA axis, and he has never heard Lyme ever be mentioned at a thyroid conference.
This of course from the same clinic where all the doctors said there was no Lyme Disease in San Diego therefore misdiagnosed me all that time. So it's no surprise that I got nowhere.
So I'll have my internist, who is willing to follow out most of the testing that my LLMD asks for, to do the monitoring, and I'll ask my LLMD from time to time how Lyme is affecting it all.
But I had to adjust my Synthroid dosage due to Lyme so I presume it will be on ongoing thing. So far the T3 is hanging in there but I've heard that can really be affected by Lyme.
Jill
Posted by lymemomtooo (Member # 5396) on :
Hey there Miss Carol..Hope all is soon better.. Hugs lmt
Posted by Carol B (Member # 9110) on :
Thanks Y'all for the responses. I'm to have more bloodwork for this in six weeks-and think I will ask for the t3 test,too.
BTW-they drew the blood from the outside of my arm by the elbow because the usual spots were kaput. I've never had it drawn there before-and it wasn't so bad. I had to keep reminding myself to breathe though. I was afraid they would go for the wrist-and that just hurts too much.
Big Baby in Balto, Carol
Posted by tabbytamer (Member # 3159) on :
Carol, remember FREE T3, and FREE T4 not just T3 and T4. Big difference.
My LLMD is up on how Lyme affects thyroid. But also recommends an Endocrinologist in the area for me who believes in the importance of measuring the free (available for use) thyroid levels in the blood.
Posted by lymex5&counting (Member # 7202) on :
llmd treats the thyroid. This has always been
a concern for me since. I don't think I could get
any one else to give me Levothroid if I were to
change. I did more in 3 days than I had done in
the previous 3 years when I started it. I had had
my gyn test me, internal medicine, primary, 1st
llmd. No one would even consider it since I was
within normal limits. Yeah the lowest possible #
I think free T4. Wow what a huge difference.
I believe Dr K and Dr B both consider thyroid a
clinical dx like lyme, by seeing how the patient
responds. VERY WELL in my case. I would recommend
it to any lymie.
lyme x 9
Posted by cantgiveupyet (Member # 8165) on :
i believe this may be part of my puzzle.
new dr just ran a thyroid panel....but i know it will come back fine.........my blood shows im functioning like a normie.
I went to my 2nd endo in April, she also said that she has never seen lyme affect the endo system...what a joke.
the first endo said it was not an endo problem at all.....he said your periods are regular there isnt a problem(well i just missed my first one)
way back in 2000 my PCP suspected thyroid for my sore throats..that would not go away, same time i was bit by the tick.
who knows.....i do have many thyroid symptoms.
Posted by bettyg (Member # 6147) on :
my PCP handles my underactive thryroid; easier since he is 5 minutes away since LLMD is 5 hrs. away!
never been to an endo.... too many MDs as is and they are NOT knowledgeable on LYME DISEASE/.
Posted by aiden424 (Member # 7633) on :
I have thyroid problems too. I didn't have any problems with my thyroid until years after having lyme.
I see a Endro doc and my last TSH was 115.60, so my thyroid is really messed up. I have an appointment with my LLMD in about 10 days. I'm going to ask him about the T3 because my Endro doc has never tested mine.
Kathy
Posted by sofy (Member # 5721) on :
A wonderful holistic endo doc. All my thyroid tests were in the normal range and no one would help me even tho I was wearing a coat in July and could wear hardley any clothes cuz my skin was so sensative.
This was befor I finally got the lyme/autoimmune from lymerix diagnosis
This doc treated my symptoms and I now get hot in the summer like everyone else and can wear most of my clothes without feeling like they are sandpaper
Thyroid is just like lyme. Tests dont tell everything and you need a doc who will look at the person and their symptoms not just pieces of paper.
He recently doubled my dose cuz my levels doubles even tho it was still in the normal range. It made me feel better.
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