posted
Hi, I am a 140lb, 5'11 22-yr old male (very thin) who has had Lyme for my entire life, but the past two years more noticeable, and just started noticing some symptoms related to thyroid that are very serious.
Being treated by Dr. S in NJ. Currently on Doxycycline 100mgx2 daily. Will tell and show him this next visit, looking for advice ahead of visit.
Will post photos, but here are symptoms related to thyroid written out (thyroid tests come up completely normal, even better than average, and have consistently been doing so all my life but clearly something is wrong -- I have warm, liquidy feelings in my thyroid all of the time on top of):
-Left side of my thyroid feels like Lyme fog, the same feelings I get in the left side of my head -Hair curls up and does crazy things where my sideburns are -Split large toe nail, ridges in nails, wavy thumbnail -Certain large vein not showing up on left side of thyroid as it does on right side -Left side of thyroid looks indented compared to right -I am very thin and you can see all of my veins, it used to be that when I clenched my teeth you can see every vein in my neck very clearly, now you can see 1 or 2 and they're hardly visible. -rashes appear on the left side of my thyroid, not the right side at all, and rarely nowhere else. -left side of my throat feels hollow/empty/shallow and inactive, smells like freshly chopped onions and perfume get caught there and stay around for quite a while but eventually go away.
This is a major concern as it has been causing and still is causing: -Things such as basic directions to not register (Mom to me: get the blender x4, I want to make a smoothie. And I still don't understand her.) -not being able to focus to save my life (could hardly finish a 2page magazine article) -not being able to analyse anything or think (action A causes consequence A, i.e. impulsively watching Evanescence videos on Youtube without realising I should be calling my primary care physician to get a referral for neuropsych testing, then an hour goes by and I realise what I already 'knew' -- that I'd waste an hour watching videos and the doctor would leave), -not realising what I'm doing (i.e. could walk into room holding a knife and not know it) -laying around all day and having absolutely no idea where my time goes or even realising how quickly time goes by. -mind functions at 3 miles per hour (asking me to do same task my Lyme-free brother could do, i.e. finish a newspaper article, assuming I can finish it, takes 20x more) -don't remember words such as 'the' and otherwise a significantly decreased, GED-like vocabulary as opposed to near PhD. -don't recall what happened earlier today, i.e. what I had for breakfast, what I just said, and every day is a new day -lethargic all the time and can fall asleep in any position and practically standing up (couldn't even sitting down if I forced myself not too long ago). -falling asleep suddenly (i.e. within 30secs of lying down on a bed), and strange sleep cycles, i.e. sleeping 5hrs at night and then suddenly falling asleep during midday for like 3 or more hours. -sleeping more than normal yet still being tired
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Did you just start treatment? Lyme makes you very sick and treatment makes you feel sicker. It is very common to have "brain fog", to have irregular sleep cycles and most of what you describe just from lyme and co-infections.
I don't notice an enlargement on your thyroid - just your adams apple. If you have a nodule you will see it best when you swallow. One side will look bigger than the other.
Lyme can cause thyroid disease. So can protomyxzoa. You could ask to be tested for antibodies to check for something like Hashimoto's. I always checked out normal too but I wasn't.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Started treatment 2011.April, and trust me, the enlargement is there on the right side, whereas left is sunken in. The 'v' in my thyroid is also crooked. No idea what you mean by nodule.
Posts: 40 | From Maryland | Registered: Feb 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I have had an enlarged left side of my thyroid for at least 6 yrs. It has been U/S by an endocrinologist. I had no nodules, just asymmetry.
Sometimes that left side feels sore...but I don't know what could be done. This is the least of my problems.
My thyroid labs were never out of whack until this year. I am now on Cytomel and Synthroid.
posted
Warm, liquid moving around in my throat, on right side. Kind of itchy, and a harsh, penetrative-like feeling as if it's crawling or flowing around in there somewhere. Left side feels dead, hollow, empty, inactive, and smells and such get caught in my throat on that side.
Posts: 40 | From Maryland | Registered: Feb 2013
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posted
OH, I thought you said LEFT side. The rt has a shadow on it. So it's hard to tell.
QUOTE:
"-Left side of my thyroid feels like Lyme fog, the same feelings I get in the left side of my head -Hair curls up and does crazy things where my sideburns are -Split large toe nail, ridges in nails, wavy thumbnail -Certain large vein not showing up on left side of thyroid as it does on right side -Left side of thyroid looks indented compared to right"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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From researching online, LymeNet, & the MN Lyme Assoc I found out that Lyme can affect your Endocrine System (Adrenals, Pituitary, Thyroid, & Hypothalamus).
So, since I haven't gotten any restorative sleep in 14 yrs & was diagnosed w/ Lyme 2 yrs ago, I wanted to go get all that checked out w/ an Endocrinologist. I went in Nov 2012 & had every blood & urine test there is related to the Endocrine System & they all came back "normal". Endo said I was "fine". He ignored anything I said about Lyme.
BUT, he said to me as soon as he looked at me that I needed to go next door to the hospital to get checked in that afternoon to have a sonogram done of your thyroid because you have a big growth on the right side! The sonogram showed it to be 4.3cm & anything bigger than 1 cm needs to be biopsied. They biopsied it & it was a "benign right lobe colloid nodule" on my thyroid. It's huge.
My Endo said it was no big deal.
Dr. J my LLMD says that he sees all sorts of weird growths on the thyroids of his Lyme patients.
I found an article online that said auto-immune diseases (like Hashimoto's & Lyme) can cause your thyroid to over-produce immunoglobulin because it's your immune system trying to fight off something it can't really see. Over-production of immunoglobulins causes the weird thyroid growth.
Posts: 83 | From Minnesota | Registered: Jan 2011
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posted
Jenn, the problem is I doubt the tests. And my main concern is the functionality problems, not the bump that even people up above that had the time to sit still and look at a photograph of my neck area somehow didn't notice.
Kind of strange how the veins in my neck retreated, however (only 1 is visible, but barely), and only when I clench my teeth full force, which like I said, takes a lot more effort than previously. Almost hurts me to clench my teeth because of the effort it requires the muscles in my neck (I only have Lyme-related psych. symptoms). Feels like what I'd imagine an old man doing the same would feel like. Probably looks the same, too (i.e. only one vein shows up. one of the major ones, a large one -- which is concerning).
Posts: 40 | From Maryland | Registered: Feb 2013
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All of us Lyme victims doubt the thyroid tests. That's why I put the word "normal" in quotes. The tests never seem to show much, if anything at all, is wrong. And yet, we all have severe problems w/ getting any restorative sleep which means there is something not right w/ our Endocrine Systems.
The great & never-ending mystery to me is >> What is the mechanism by which I am no longer able to get anything out of my sleep when I go unconcious to sleep?! I go to sleep, I just sleep extremely shallow & I'm not restored by my sleep! WHAT is the Lyme actually doing & what is it doing it to, that is causing me not to be able to get DEEP, RESTORATIVE SLEEP?!
The thyroid, pituitary, hypothalmus, & adrenal tests that I had done were all within the "normal range" according to my Endocrinologist! As were all my hormone levels.
There is NOTHING ON GOD'S GREEN EARTH MORE FRUSTRATING THAN BEING EXHAUSTED EVERY SINGLE DAY FOR YEARS & NOT KNOWING WHY, OR HOW TO FIX IT!! The only thing I have been able to do is manage it. If I don't exercise, I can get a bit better sleep. If I go for a walk, my sleep is catastrophic that night.
As far as your neck muscles go, Lyme attacks your muscles, so it's not surprising. That's why so many Lyme victims have been told by a stupid doctor that they have "Fibromyalgia".
Posts: 83 | From Minnesota | Registered: Jan 2011
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Serum thyroid hormone levels do not determine the intracellular thyroid hormone concentration. You can have "normal" blood levels of thyroid hormones and still have hypothyroidism and feel like crap.
If anybody wants to understand how you can have "normal" thyroid hormone blood levels but still have hypothyroidism you might want to read the links down bellow.
posted
Jenn, if fibromyalgia is defined as tingling in the nerves or extreme nerve sensitivity, then I don't have that.
It's been difficult to clench my teeth because the muscles in my neck (the ones you see that are required in making the clenching) have been so tense, and few of them have been even visible subsequently.
Well, just going to have to find other ways to smile. Posts: 40 | From Maryland | Registered: Feb 2013
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posted
You mention your tests look good, and you are wondering about lump on thyroid gland or something.
There is something called autonomous nodules, where the thyroid nodule sends out thyroid hormone all by itself (and not even all the time, so symptoms may fluctuate)
This causes low TSH and a bit highish ft3 or ft4, whatever the nodule is sending out.
The problem is the textbooks deny there are any symptoms before the nodule is 3cm, but that is bullsh...t. Lots of patients are very unwell with much smaller nodules. Just mentioning.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
emla999, so what is the best way to test what you've posted and get the right prescription?
I have been feeling like my mind has been collapsing for some time now (demolition-style cave in where I've suspected I'll lose the ability to speak, walk, etc), and it's really urgent that I get a prescription right away.
I have hypothyrodism, but it's going to show up as I don't on the doctor's tests. It has before.
Posts: 40 | From Maryland | Registered: Feb 2013
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
The first thing that you need to try doing is to find a doctor that is more knowledgeable in diagnosing and treating hypothyroidism...... this is very important because alot (if not most) medical doctors don't seem to be all that knowledgeable at diagnosing and treating hypothyroidism.
The natural thyroid hormone yahoo group has a list of recommended thyroid doctors in the file section....... you will have to join that group to see that list.
Also, you need to have your Free T3, Free T4, TSH and Reverse T3 blood levels measured. These tests are probably the most accepted tests currently available.
Unfortunately, doctors may interpt those test results differently because alot of doctors don't seem to be aware that newer studies indicate that the older blood thyroid hormone refrence range for diagnosing hypothyroidism has changed. Newer studies have indicated that a TSH blood level of greater than 2.0 uIU/L may indicate that you are hypothyroid and that you have hypothyroidism. And there are some some doctors that believe a normal TSH level is between .3 - 1.5 uIU/L and anything over 1.5uIU/L would indicate hypothyroidism.
So, it's very important that you go to a doctor that is aware of these new reference range changes.
And unfortunately, blood work isn't always 100% accurate for diagnosing hypothyroidism. But there are other testing methods such a urinary thyroid hormone test and the Thyroflex test that may also help to determine if you are hypothyroid. And some doctors may diagnose you by symptoms such as low body temperature, chronic fatigue, brain fog, thinning hair, joint pain and etc. And then those doctors may confirm that diagnosis by giving you a trial of thyroid hormone and see how you react to it.
Urinary Thyroid Hormone Test for diagnosing hypothyroidism
I don't know if the Thyroflex testing is as accurate as they claim but relflex testing is known to correlate highly with hypothyroidism...... it's know as Woltman's sign.
Reflex testing as a way to help diagnose hypothyroidism
posted
Wow, emla! Our family doctor back in the 60's would test for the thyroid using reflexes!! He tapped on the achilles tendon, if I remember correctly.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I agree, T3 needs to be checked. I'm on Synthroid 125mcg and Liothyronine SOD 5mcg. Had small nodule on thryroid, non-cancerous, left it alone.
Have you been primarily diagnosed as neuro-lyme? A lot of your symptoms sound like mine. I've had it 16 yrs, (9 yrs misdiagnosed), but it started off primarily in the rest of my body, then went almost completely neuro last Oct.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
EWT1638, I have been seeing Dr. S in NJ. I have no clue what I have tested for in addition to Lyme, if anything at all.
My guess is that currently I have some kind of parasite(s) in my throat or in my head. And I want to know what. I want to know if it's even Lyme-related.
Feels like some large bulge of something is blocking things in my thyroid or my head. It's like it's sucking up nutrients and large, or at least feels that way, and is like some kind of tumour.
It's been interrupting things like my depth perception, making eye contact with others (when my eyes turn, and I know what part of the brain it is, because it's the same part where this 'tumour' is -- I can tell because when I try to make eye contact with others for instance, my eyes always cross/touch this thing in my head).
It's disgusting and annoying. Happens every time.
Wonder what it is because it's responsible for all of my symptoms -- I don't have any joint, muscle aches or whatever, everything is just in my head. It effects my psych and hormones alone.
Posts: 40 | From Maryland | Registered: Feb 2013
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
interesting thyroid thread
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Is it safe to try NDT (Nature Thyroid) to see if it has a positive effect? I was prescribed 65mg (1 grain?) and my thyroid levels are also normal in my lab tests, however my FT3 / RT3 level is not good according to STTM.
TSH - Varies from 1.5 to 2.9 (over multiple tests) FT4 - 1.7 FT3 - 3.5 RT3 - 22
Latest FT3 / RT3 ratio - 16 (STTM says u need more than 20)
Posts: 85 | From United States | Registered: Jun 2015
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