tldr: felt crappy for a long time, think I have a slow thyroid even though thyroid tests are normal. Will track my treatment here.

I've had a couple of different bicycling logs on here. My best accomplishment was the Triple Bypass ride in Colorado in 2016 at the age of 55. After that I continued to ride, but not at the same volume and suffered from some lack of motivation.
Anyway, starting in late July, early August of last year I started suffering from really bad headaches. They seemed very positional in nature, bending over seemed to be the trigger. Even just taking the dishes out of the dishwasher would trigger a really bad headache and overwhelming fatigue. At first I thought they were really bad sinus headaches, which I have had over the years, but it soon became apparent it was more. I tried my general doc, and he prescribed an antibiotic in case it was a sinus infection. That was no help. He then prescribed a steroid. No help. This was over a couple of months window. It was hard, because sometimes it seemed I was on an upswing, only to trigger a really bad headache with the fatigue. I also had a lot of joint pain. I was wondering if I had some form of arthritis, but nothing seemed to fit.
We did an MRI. The MRI showed a Chiari type 1 malformation(present my whole life). This sometimes leads to headaches, but after talking to a neurosurgeon we pretty much decided it probably wasn't the cause of my headaches. This was shortly before last Christmas. I was feeling better then at my worst, but not really right.
One "symptom" that I had noticed when I went to the doctor was my body temperature was 96.5. I think on the second or third visit (they always take a temp) I mentioned it to the doc, since in the past my temp has always been close to normal(98.6). He didn't think it was a problem. When all the other tests didn't yield anything, I started Googling low body temperature, and found this website:
https://www.wilsonssyndrome.com/

They have about 50 symptoms listed, among which are headaches and fatigue. The American Thyroid Association doesn't believe in it:
https://www.thyroid.org/american-thy...sons-syndrome/

I'm in discussion with my doc, and he is willing to prescribe the T3 that the Wilson's Syndrome suggest. I go next week and hopefully can get started. I've been discussing this with my doc for 6 weeks or so, and in the meanwhile I've been taking this supplement:
https://www.amazon.com/Thyroid-Suppo.../dp/B00M13NHFY

and feel better than I have in a long time. I tried some other Thyroid supplement in February, and it didn't seem to help, so I don't think it's just in my head. Also my waking body temp has climbed from 96.5 to 97.5.
I'll see if the T3 therapy helps even more.

Why post? I guess if someone else has my symptoms maybe they can benefit if they come across this post.

Good luck I hope that's the cause and treatment helps. I think thyroid is something that's not understood well by most GPs or in general. Hormones are tricky bastards. Even among endocrinologists there's plenty of room for differing opinions and plenty of those will change over time. It's nice your doctor is willing to try stuff and being open minded. As you know you really have to be your own advocate when anything gets remotely out of the norm and do your own research. I do empathized with the doctor's task at hand because the body is absurdly complex and the amount of knowledge required is endless.

You may find "Stop the thyroid madness" books helpful. I bought 2 of them when I was looking into some potential issues myself.

Thanks, I'll look into the books. I agree with everything you said. It was difficult for me to really describe everything that happened, but my doc is definitely keeping an open mind. I sometimes feel like a wacko hypochondriac, suggesting things from the internet but nobody knows how I feel but me, and I didn't feel right for a long time.
One theory on the WTS website is that people who have that is caused by a "shock" to the symptom. While it didn't start until after my cycling miles had decreased, I have to wonder if riding long miles in the Texas heat didn't somehow cause this.

I think you're on a pretty dubious path here. IMO just get on the real T3 goodlife and enjoy the benefits of having boosted thyroid hormone, or don't and stop going into 3am wikipedia/webmd rabbit holes about your extremely non-specific symptoms and wasting your money on bunk supplements. Make a choice now and be happier for it either way.

I hesitated to make a post like this, but this hits fairly close to home for me with my knee stuff, and I felt like TC's post needed a counterpoint. I can get on the tubes right now and find 10 different possibilities that pretty closely fit the issues that I'm having. Most likely I'd encounter the wrong diagnosis before the correct one (if there even is a correct one), and then start to identify with that problem. And then I'd start to think about all the things I can't do because I have this terrible knee ailment. Then I'd start to really not be able to do those things because of the negative feedback loop that I've started.

It's human nature to want to know what's wrong with us, identify and analyze exactly what it is, and what we should be doing about it. The problem is that in the investigation, diagnosis, and analysis, we make our problems much worse.

Good luck. I hope the T3 makes you feel better.

To explain what Renton is saying more clearly: You are totally being a wacko hypochondriac.

You'll probably substantially **** up your health taking a bunch of extra T3. So don't do that. Weird internet herbs are a waste of money, but won't (likely) kill you. If your doctor legitly "keeps an open mind" and prescribes you T3, he should lose his medical license.

When I had major depression, I somehow googled myself into near-certainty of having HIV, despite obviously not having sexual interactions. (Weirdly no time to make sexy when furiously googling weird symptoms on the internet.) This was after I couldn't convince myself I had dengue since it somehow doesn't extend all the way upto the Artic. Regardless, people do this type of stuff all the time for a variety of reasons, and while the medical system doesn't have all the answers, crackpot blogs and weird conspiracy theories THAT HAVE BEEN THOROUGHLY INVESTIGATED certainly do not. Hope you don't **** your health up based on reading a crazy scam site.

I appreciate the feedback. I have to agree with TC, that problems in this area are not well understood. So if your Doctor can't make a quick diagnoses, what is your choice other than to try to figure it out yourself?

Alternative medicine preys on the appeal to complexity argument, and on discrediting doctors. Yeah maybe the endocrine pathways aren't completely understood, but they're fairly well-understood and the American Thyroid Association doesn't recognize your illness as being real. A cursory look at the Wilson website raises lots of red flags that he is a charlatan.

So first, use a healthy dose of skepticism and critical thinking when considering these topics. Second, recognize that the the mechanisms for pain, fatigue, and general malaise are even more nuanced and complicated than the endocrine system. There might not even be a physical affliction that you need to treat in order to feel better. You might just be in a rut in life, or under a lot of stress, or just be the average aging human and not have the spring in the step that you used to have. Human beings are very unreliable narrators for what is actually going on in their bodies, and negative feedback loops of nocebo can have devastating effects on how we feel.

As a clear example, look at the Chiari type 1 malformation. Present and asymptomatic your whole life, but the knowledge that it existed probably didn't help your symptoms at all. In reality almost everyone over 40 years old has some **** wrong with their bodies that would show up on an MRI if they took enough pictures. Does one really need to know what they all are if he has only mild nonspecific symptoms?

Cool. Are you gonna solve the issues surrounding dark matter and dark energy next?

Apparently, you were able to solve an issue that has stumped someone with a decade+ of specific expertise and access to the best resources in the world with Google and some extra time on your hands. What are you going to put your mind to next? World hunger? Ending poverty?

Do you understand how incredibly arrogant and flat out stupid you sound? Did you bother with a second opinion?

Renton I think you make a number of very good points that I'd like to expand more on later.

For now,

Specifically with hormones I think the Endocrine Society etc. has done a piss job addressing and setting guidelines for Testosterone. Like terrible.
It's actually a recognized thing that people respond differently to different levels of thyroid. Something about cellular uptake? Some people are bad at using the thyroid they make. Thus measuring blood levels isn't the underlying factor. It's bloods levels + symptoms. I know that wasn't a very science backed paragraph atm but don't have time to look up the names/specifics.

I don't even want to get into how poorly the average GP and plenty of Endo's address testosterone. Funny how that's a recognized thing with thyroid^ but not sex hormones (still is a thing). I read many reddit threads everyday about men having all the symptoms and 300ng/dl but not being allowed to do TRT by their Doc which is pretty much malpractice. The Endocrine Society's stance/protocol is bad.

For thyroid, the average GP will order a TSH, see it's in range and send you on your way. It's a joke man, the struggle out there is real.



This one isn't deserved.

Those are pretty crappy symptoms and you're not being a wacko trying to get to the bottom of it.

What all labs have you done relating to thyroid? If the supplement you're taking has B12, could B12 potentially be the root? I know there is a connection with RT3/T3 there.

Just looking back through my book... this **** is so complicated. I agree about seeking a second opinion. One problem I found was that with my insurance I couldn't just go to a new GP without changing/declaring them as my new GP. So that was annoying.

I really do agree with you about the negative feedback loop and nocebo. I absolutely did this to myself. I was bordering the hypochondriac line and would spend hours googling into rabbit holes trying to figure **** out. While I had real physical symptoms that couldn't be denied and no doctors could figure it out I undoubtedly created a bunch of unnecessary stress that made my life worse. While these issues are annoying, I can live life fine and the less I focus on them the less they bother me. I also probably spent $15k last year chasing them.

And with this stress I created new problems. Which led to pursing TRT (which I didn't need) and antidepressants (also didn't need). So I definitely get what you're saying and agree. At the same time there are real problems people have that the medical system is not good at answering and the only way people can get help is being their own advocate--doing research, pushing for specific referrals/labs.

To some extent this is like when you're facing a big bet on the river with a near nut hand, and you obviously call even though the guy will have the nuts 10% of the time. In life, as in poker, it pays to be skeptical and suffer the consequences when the less likely outcome (you being really treatably sick, him having the nuts) happens.

But you'll know when that happens because you'll get worse and worse and then your symptoms will go from being mild and not specific to more severe, specific, and diagnosable. So it's kind of a problem that works itself out, in one way or another, in most cases.

I think a better approach for OP is to just improve his diet and activity. Take up meditation or cognitive therapy. Make a journal of your symptoms and rate them from 1 to 10 each day. This kind of stuff isn't as drastic as T3 and it will make you feel better regardless whether you have an endocrine disorder or not. The journal will equip you better to seek the medical route if it becomes necessary.

TC,

If I'm understanding this correctly, you are saying it is not deserved for me to call someone a total ****ing drooler who is advocating a well known sham diagnosis?

That is an incredibly stupid stance and why nonsense like this exists. What you're doing currently is providing a bunch of nondescript bull**** to obfuscate the fact that the OP is advocating for total ****ing horse****. You're abetting this fraud and should be called out for being almost as much of a moron. (Note: I am in fact saying that virtually all your posts in this thread have been only tangentially about this nonsense low temp ****. But they all give the effect that you do support this. What you're doing is dangerous and dumb, stop.)

I hear you and this is good advice regardless. But for severe headaches and fatigue triggered by simply bending over seems worth continuing to pursue.

It's unnecessarily harsh imo, but whatever.
I'd never heard of wilson's syndrome prior to this thread and didn't research much into it. When I said "good luck I hope that's it and treatment helps" I assumed it was a legit thing and was trying to be just generally supportive.

Let me emphasize I have a low level of knowledge on thyroid issues and 0 clue whether OP should take medicine for his symptoms.

What I'm more saying and empathizing with is the difficulty of pursuing any remotely uncommon medical issue/symptoms. It resonated with me because I went through a frustrating process trying to diagnose the cause of bizarre symptoms.
Along this journey I discovered;
1.) how absurdly complex the body is
2.) how much is still unknown
3.) how some current positions held by medical societies (i.e male testosterone by endocrine society) are junk
4.) how often GPs don't order comprehensive/correct labs
5.) how overworked and stretched thin Doctors are for time
6.) how shallow and general* GPs knowledge is
7.) how the referral process sucks and will become a dead end unless you're advocating for yourself.
8.) how even within specialists there's wildly varying expertise and opinions (my brother would have been crippled if his 3rd* opinion specialist didn't figure it out).

I could go on forever.

I'm very curious to know what labs OP's GP has ordered and why he hasn't seen an Endo (his fault or his GP?) if his GP is already willing to prescribe T3.

Sure. And exactly who solves those problems? The medical community.

Not you googling bull**** on blogs. Not widely debunked sham diagnosis/treatment. Not some magical massage by a guy who took a weekend seminar. Literally just the medical community. Most people are total morons at using the medical system and providing reasonable advice like: "Keep a log of time/severity/symptoms" is far more beneficial than providing some bull**** enablement of wacko hypochondria. (Which you have had before as well.)

You can pretty much get a private practice GP to prescribe anything, which is why they're basically worthless. Any doctor that is "practicing medicine" is probably just a total ****bag.

The key for me is, is a lower than "normal" body temp a problem? Not one reading, but 3 readings a day? The ATA says no. Dr Wilson says maybe, and why not try something different? I'm going to find out if its a problem for me.

Cool. So I'm glad that since your doctor didn't diagnose you with something you turned to witchcraft. Some random questions:

1) How many doctors have you seen? Have you provided detailed written records of your symptoms? (Do you even keep these?)
2) Are you aware of the range of "normal" human body temps?
3) How did you deduce that you're actually low. and have not actually had this level of body temp for decades? Do you have records dating back to when you're healthy?

Regardless of the answers above, which are almost assuredly going to point to incredible ineptitude with utilizing the medical system and your own self-delusion. You decided to diagnose yourself with a widely discredited "syndrome" that has literally zero scientific evidence to support it, which the purported treatment shouldn't be prescribed by any legit doctor. (Granted people get all sorts of meds from not legit docs. Magically docs are morons if they don't instantly figure out what is wrong, but totally legit if they enable one's insanity toward unsubstantiated and potentially dangerous treatments. See Cha's log for this and plenty of other totally insane fake illnesses, which he spends inordinate amounts of money "treating". Among them rib dislocations and fascial binding. Luckily he was contained long ago with this type of insanity.) Now you're taking a bunch of supplements that you suppose is helping the issue. Is your body temp higher? Or are you reporting a fake response to your fake illness? (Feeling better.)

In short, while you think what you're doing is helpful, its actually very harmful and you're basically Alex Jones with his Sandy Hook conspiracy theory. TC is basically Joe Rogan abetting the same level of stupidity under the guise of "I'm just asking questions". I hope no one takes your advice including yourself and you seek actual medical treatment and don't end up like YTF and YTF-son from doctor shopping thyroid medication and self-medicating for an illness that 100% does not exist.

Thremp,

I should not have said this without looking more into the specific thing OP was referring to.


All completely true in my experience.

You're right a doc clicking btns writing random Rx based on blogs is bad and I see how this came across bad. I should have said it would be nice to have a doctor properly investigate and dig when the answer isn't something obvious. Many times I would go to doc appts to have them run their basic tests, tell me I'm good and that be the end of it. Their "game tree" always ended after position 1 yielded nothing and I felt like it was up to me to get them to press on and bring up possibilities to explore.

Can back this up with plenty of examples.

Exactly, but the key is getting in front of the right person with the right area of expertise which can be very difficult. GPs might do a poor job of labs (how do you know if they did?), they get handcuffed with who they can send referrals to (networks/affiliations), those referrals can take forever to get into. Then you have to hope the specialist has expertise for your potentially uncommon issue. You leave your appt and how do you know how well they've evaluated you? You're drastically under representing how difficult this process can be.

Example-->GP order TSH as the only thyroid screen and when that turns up nothing they rule out thyroid and pursuit of that. How are you supposed to know that was a very incomplete assessment without doing your own research?

Those seem like awesome points/advice.

My average body temp is about 97.3 and is more often in the 96s than the 98s. I also have about 1/3 of the symptoms on the Wilson’s Temperature Syndrome Symptoms page. Am I at risk for this? FWIW, I was once diagnosed with adrenal fatigue by a friend.

It sucks having chronic health problems that never get diagnosed, or get diagnosed as something with no treatment. Finding a diagnosis, even if it's for something not real, can help make the symptoms more manageable, and it's a lot nicer to feel like you have some control over your health, so I understand why you're pursuing this.

I try not to contradict people who attribute positive changes in their health to naturopaths, homeopaths, chiropractors, craniosacral therapy, osteopaths (the non-MD kind) etc., because if their doctors are offering no treatment and that other stuff makes them feel better, then why try to take that away from someone as long as they can afford it. There is a huge psychological component to managing undiagnosed or untreatable chronic health problems, and feeling some control over your situation and having some hope does make it more tolerable.

If you're looking for alternative solutions outside of evidence-based medicine, and doing that feels better than just accepting you're sick in some way and will probably never have a satisfactory explanation or be offered any treatment, then no reason to stop even though you're not likely to actually find an accurate diagnosis or cure.

TC,

I think we're very close to actual agreement! My main point is that most of what occurs needs to occur in the context of the medical community rather than from non-doctors. I would also venture that you were really piss poor with your efforts and is OP. I keep a food log, for literally no other reason than to appease my own aspieness and some moderate internet forum accountability. I don't have a long term illness, but I'm sure I'd spend more time logging that than I would my desire to lose 2-4lbs.

I also agree with you that doctors vary in ability and that sometimes a singular diagnosis isn't the optimal pathway. I don't recognize your limitations of poverty as realistic as well. Those are dumb arguments. Apparently ****ing dip**** shamans who can cure **** like doctors are free, but to see a real ****ing professional you don't want to pay actual money? gtfo. Next time you get shot or have a YTF/G4S heart attack, lets take you to the naturopath and see what happens.


Greg,

That is ****ing stupid. You are stupid. Do you think that someone who considers getting high and ****ed behind dumpsters a suitable panacea to their "depression" because medicine wouldn't treat it? Where do you draw the line with idiotic relativism?

I suppose you support faith healing as well. k.

Is Deeply Miserable Thremp? That explains the personal attacks, I guess.

To answer some of your questions, I kept a headache log when they were really bad. In case the OP wasn't clear, the headaches have eased. I can still trigger one if I'm not careful, but I can do more than I could last year.
I've been keeping a temp log, and my avg temp has climbed about .5 degrees since I started the supplement:
https://www.amazon.com/Thyroid-Suppo.../dp/B00M13NHFY
I'm not on dozens of supplements. The first one seemed quite ineffective, this one seems effective.

My doctor referred me to the MRI, and then to a neurosurgeon when the Chiari type 1 showed. When I indicated an interest in this syndrome he asked for a month to review the information and then indicated after that month that he would be willing to assist me in a therapeutic trial of the T3.

As far as my previous body temp, I certainly took my temperature infrequently when I felt well, but when I did it was always a tenth or two within 98.6, unless I had a fever.

I certainly can't say if this is a problem for you. If you have 1/3 of the symptoms on that page you have a lot more than I do. If you don't feel well and want to pursue it, there is a physician referral page. If you wanted to invest $25 to try something, I would buy a bottle of the supplement I linked and give it a try.

So my friend tells me, "I've had this terrible fatigue and could barely do anything and I saw a bunch of doctors and they told me they couldn't find anything wrong and just said people often have fatigue we can't explain and therefore can't treat. Then I went to a naturopath who diagnosed me with adrenal fatigue and gave me some supplements and now I feel much better and I have my life back."

If I weren't so stupid, I would tell them something like, "I'm glad you're feeling better, but the term 'adrenal fatigue' was invented in 1998 by a chiropractor and applied to a collection of mostly non-specific symptoms. It is not recognized as a diagnosis by the scientific or medical communities, and a systematic review found no evidence for the existence of adrenal fatigue, confirming the consensus among mainstream endocrinologists that it is a myth. You should stop wasting your time with that pseudoscience crap and go back to not being treated for anything under your doctors' care?"

Then when I explain that to them and they say, "Well maybe the supplement isn't really doing anything, but I still feel better," should I tell them "Stop being a ****ing moron, of course the supplement isn't helping you. THERE IS ABSOLUTELY NO WAY IT CAN HELP YOU. IT IS A PLACEBO TREATING AN IMAGINARY CONDITION. You're just wasting your money, idiot?"

I think its pretty cruel to try to subvert the placebo effect for people who are
already feeling much better doing bunk treatment. But one has to draw a line at some point between live and let live and the war against bull**** at large. Chiropractic is currently considered by the vast majority to be real medical care, to the point that it's just considered common sense to see one when you experience back pain. This is a big problem with the idea of "keeping an open mind" about medical care.

greg,

Apologies for saying "You are stupid". You were being stupid. However, you are not a stupid bro. But I can see the point that you're trying to make. There is a whole slew of psychosomatic things that are real, but entirely made up by your mind. (There is a whole slew of things where your body gets confused and tries to **** you, but that is separate.)

There is definitely a fine line between allowing some tolerable level of idiocy and then an intolerable level. A good comparison would be religion. If someone prays to magic sky person or persons, whatever. When they suggest people engage in risk taking behavior because of GODS PLAN or whatever. Prob time to worry and maybe say something. When we get to the part where the magic sky person tells them to blow up a cafe where a bunch of people are just trying to eat lunch, then that is very worrisome. Most people are just derping along, imagining that having a dude lube you up and rub you down is helpful. Whatever. They like dude's rubbing them. But when we get to doctor shopping and using some pretty rarely prescribed medications like T3. This is getting weird.

un,

Sorry if you get the impression that I'm personally attacking you. I did call Greg stupid earlier which was totally inappropriate! If you are acting like a moron/stupid/imbecile, then its fine to call you behavior or actions as such. If you really are a borderline ******, apologies, since that is really mean. Congrats on having such cogent posts and language skills tho?

The supplement you list has literally 6+ ingredients listed in the Amazon description. The label has 14 different items listed, including cayenne pepper, which I like and use frequently. You seem to lack basic awareness of what you're even using to "treat" your fake illness.

Renton,

I agree with that. I was overly harsh in my war against the pseudoscience.

I have thick skin, and I think you were harder on TC than me. And you bring up many good points. I suspect if we met and talked face to face you wouldn't think I was as much of a moron as you do by reading the thread.

Here's the thing. When your main symptom is you don't feel well, its hard to get a diagnosis.

At least I'm not putting crystals under my bed and expecting a cure.

Slow release T3 should be delivered tomorrow. I'll start on Tuesday.