Has your doc told you your thyroid is "fine"?

I have posted a bazillion times that most MDs… even endocrine specialists don't really know some basic stuff about thyroid functions, testing and diagnosis. I HIGHLY recommend most lymees familiarize themselves with symptoms associated with thyroid imbalances and if they seem familiar, check out stopthethyroidmadness. This website has some of the most comprehensive information about the thyroid I've come across online.

I had also mentioned that new (or maybe not-so-new) buzz is that even docs who know to test for T3 and T4 (not just TSH) are missing the key indicator for thyroid imbalances—low basal body temperature. Here is a good discussion on that in plain English: www.holistic-hypothyroidism-solutions.com/basal-body-temperature.html

Hope this helps—sorry it took so long for me to remember this!

-p

Margaret - What were your symptoms when you swung to the hyperthyroid side? How did you feel?

I asked my LLND about my thyroid...and he looked at my blood work and my symptoms and felt mine was fine. He felt my adrenals and nervous system was needing support because of Lyme and the stress lyme has put my body through.
I hope he's right and he's not missing anything.

I'm tempted to go find a mercury thermometer.


Does it ever end? The wondering, questioning, testing...no resolve ever?

AWESOME post, sayyadina. I am not a horse, yet, but wish I had someone who could balance my minerals! I've had a few but not all checked and I've had many specialists prescribe random this or that. But this isn't something I'm familiar enough with to understand what to do. I have lost about 20 lbs since starting treatment but still about 20 lbs off where I was when I first got lyme & co… despite any exercise or diet or magic dust.

I'm not even sure how to test for everything. Or how to interpret mineral results.

-p

Girlie—
Yes, I have heard about the cortisone suppression test. I think… if I remember correctly (which I'm usually suspicious about these days!) it is to be done multiple times to ensure a consistent interpretation. I don't think you're stubborn AT ALL in asking for more tests for confirmation—your doc should be doing that. Of course, they don't want the hassle w/ the insurance co.

My cortisol levels were always very very woefully low until bedtime (I functioned on adrenaline—the low cortisol is why my adrenals had to kick in as if I was in fight-or-flight mode, which wore them down almost to nothing), then they were higher than they should be when I was trying to sleep, thus the insomnia and the lack of sleep never allowed my body to reset for the next day. It was a vicious, scary cycle.

So I was taking cortisol in the AM and at lunchtime then taking a cortisone suppressor at bedtime. I don't know if any of it was effective and stopped taking it all, which I later learned was dangerous to do cold turkey. Maybe it improved on its own and what has helped me is getting the MTHFR support (I do acknowledge that while still having bouts of extreme fatigue, it is 100% better than before). I get exhausted in the late afternoon and hormone pharmacist said it was low testosterone (also tested low).

I also think that going on the no sugar/no grains/low carb approach has helped the hormones. One of my DNA mutations predisposes me to blood sugar issues, which trigger cortisone production (at the wrong times and amounts), which added to my sleep issues and night sweating. EVERYTHING is connected to hormone production. My neurotransmitter issues also triggered imbalances in hormone production, as did the methylization issues. By supporting those issues and with the elimination diet, I think things have calmed down. But my hair continues to fall out in clumps and I am still tired many days—could be the immune system fighting the lyme and I just need to let it be. Or, these are clear signs that something else is really wrong. I just don't know. No one seems to.

I like your approach Girlie, in letting some things play out—what a journey you've had. There are so many things going on simultaneously it's really difficult to understand any of it and I give doctors that much appreciation because it is complicated. BUT, they also lack a lot of basic education about things like this—and NUTRITION (how straightforward is that?) and then have their hands tied by insurance companies. I know it's a little different in Canada—different hassle, same headache.

I have had this thyroid issue for more than 10 yrs and I am very wary of permanent damage (maybe it's already too late) and I know that if adrenals get bad enough thee is no turning back. So, I admit a little paranoia about this.

MM—
Whenever I read about someone's doctor's dismissive reaction to information brought by a patient, I want to scream. The article mentions that many doctors have a perspective that most people's body temp is low these days, so it must be "OK". Insanity. I think it's indicative that thyroid issues are becoming more and more common—likely because of our increasingly toxic environment and all the challenges we have eating healthy and detoxing normally (especially if we aren't taking care of ourselves with diet and exercise). But that shouldn't necessarily move the baseline. Same with people's weight—the increasing numbers of Americans with obesity shouldn't "tip the scales" for it to be more OK. Exasperating. Anyway, please report back your findings if you end up monitoring your temp. I'm curious.

-p

I forgot to mention...my LLND discussed giving me a small amount of cortisol to take to boost my adrenals....but said we could just do the natural supplementation...which i chose.

What's odd is my cortisol levels never tested low....the first time they were high - most likely due to stress on my body from lyme, and my reaction to what was happening to me... the second time the cortisol was in the normal range. They were both done via the 24 hour urine test.
The problem with that test, is you could be low in the morning and high in the evening (backwards), but still have the correct total cortisol.
So, it is also good to do the saliva test four times a day..that will show what your levels are throughout the day.
I'm not overly tired though ever...so maybe I should just leave it alone....no symptoms...except maybe my thyroid - as I'm usually colder than everyone else (just since lyme)....but I've lost weight...so that doesn't add up to hypothyroid at all....ugggggghhh...
I've had enough of this....I just can't keep worrying, wondering, what else is wrong with me....especially since there may not be anything except the lyme critters to kill.....

Girlie—

I remember reading on that stoptheythyroidmadness website awhile back a lot of information about monitoring and administering your own meds. I would typically not endorse this, but these patients could not get any doctors to engage effectively and resorted to treating themselves on their own. My memory sucks so I won't even try to articulate how they did it… but in general it was very slowly titrating natural meds and with careful monitoring they figured out their sweetspot.

I'm hypothyroid. My previous ND put me on 1/2 grain of Naturethroid. I ran out and she wouldn't renew the Rx without seeing her so I bought some inexpensively from a reputable British pharmacy (no Rx req'd) and kept at that same dose. I did not have the confidence to mess with dosing with my lymebrain. My new ND increased dosing to 1 grain. Now, both of these amounts are relatively small so that's where most people start. And for hypothyroid, I highly recommend the Naturethroid, which is a natural, desiccated pig thyroid component. I'd stay very very very far away from synthetics… Some only have T4 in them. A hyperthyroid treatment would need to suppress and I am not familiar with that approach.

For the edification of others who may be following, losing weight is a hyperthyroid sx, gaining weight is hypothyroid sx. If you start on supplementation like Naturethroid but you're actually hyperthyroid, you will notice hyperthyroid symptoms right off the bat—because you would be overcompensating. I think if you stick with a slow, measured approach you probably won't do long-term damage. But it is a tricky path. The creator of that website did really well with consulting with people awhile back—not sure if she is still doing that (the website really took off a couple yrs ago and she wrote a book but I hope most of that info is still on the website). The caveat with that—is that she is likely not familiar w/ lyme & co., which changes the whole ballgame.

Some people did some testing with Iodine—you can buy drops at a health food store and theoretically, if you add some drops (Lugol's) to the inside of your forearm, let's say, the length of time it takes for the iodine to be absorbed through the skin indicates your level of iodine already in the body, thereby indicating the thyroid is functioning normally. I'd read up on this—don't remember the details and you need a specific concentration of it, etc.

Regarding the lyme & co. infection vs. hormone issues… I have been laboring over the same questions. Is the infection causing problems that LOOK like hormone issues? Or are the hormone problems originating from hormone problems, exacerbated or initiated by the lyme infection? The answer might actually differ from person to person, I don't know. For me, I decided it was really my hormones becoming imbalanced. And the reason why this happened almost overnight was because the infection was wreaking havoc. So, that encouraged me to get in there and try to treat both.

Now, I think in your case you were infected rather recently with the tick (at least in the past year or so?) You might approach that differently, choosing to deal with the infection first and foremost and waiting to see if your other body systems "level out" afterwards on their own. With respect to hormones, you really don't want to go messing around if you don't have to and if your sx are manageable. I might choose that if I hadn't gone untreated for 15 yrs.

Good luck—let us all know what you decide to do…

-p

Post Edited (Pirouette) : 9/1/2014 12:37:57 PM (GMT-6)

Thanks Mike, Pirouette....
I think I will just focus on lyme treatment for now. I didn't have a single issue with hormones or thyroid up to a year ago. So, maybe it is all triggered from the Lyme disease.
Throughout - I have never been tired/fatigued...my symptoms are mostly pain, and nervous system vibrations, chills, but not fatigue.

I think the adrenals maybe suffering somewhat - because of my nervous system involvement.

I guess time will tell.