Might need a new thyroid Dr,... a lot of work

(I put this here since the thyroid forum here is dead in the water).

There is actual proof that T4 and t3 (cell consumable hormone) levels are more important than the TSH indicator hormone (just a signal).

My old endo retired and Ive been dealing with a different one (his replacement) for one very challenging year. Even the lab blood draw techs know he likes to lower thyroid med and considers TSH the "king", (so wrong!), meanwhile leaving his patients in hypo (slow-tired) mode. General online ratings of this clinic has sunk after my old Dr retired . Imagine that!

He does not care about your symptoms. Or any opinion other than his own. Even when its found from respectable sources. For him, its all about the TSH range, which will get lower and lower as time goes on just while keeping a similar T4 and T3 level.

Now in order to get my Free T4 up in the actual range, my TSH will look hyper....but I feel better this way and can sleep.

I dont sleep when hypo (the opposite of old school thyroid literature).

this is nuts.

Time for a new Dr who is not afraid to Rx pig thyroid (what Ive used for 15 years). Synthetic thyroid Rx does not work for me.....Many out there like this too.!!

1)I found one clinic , new to me, that has four endos there. I need to somehow find out how they treat (TSH vs actual T4/T3 levels). Not sure how to do this without making possible 4 appointments, one with each of them).

2) I wonder if they have a general manager that would know this? I read their online reviews, but most patients dont take it upon themselves to learn actual thyroid health and just listen to Drs even when they are wrong.

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Hey Canadians (Im in US), Canada's national healthcare has decided that only TSH testing is now needed. If this it true, you all are going to go hypo. Very bad indeed.

Well, I guess the one thing to do is just show up at the clinic with questions without making appointments. There must be somebody there that knows how their thyroid doctors operate over there.

Technically, I’ve known more how it works than my thyroid doctors have. But they are the ones that have the power to prescribe it, and do testing for free under my health insurance.

Maybe the younger doctors are more open to looking at new thyroid treatment, meaning, partially, ignoring the TSH, and only looking at the T4 and T3 and listening to patient symptoms. I’m thinking out loud here lol.

Hey Astro - as you know- my husband is on thyroid meds.

His labs show he is in range.. but he feels better if he takes a little more of the med.

But because he is in range the doc(s) won’t give him a script for more.

The “range” is quite broad so if he was to take a smidgen more - he’d likely still in range.

I am putting an order in with AllDayChemist for some synthroid and some abx (to have on hand in case one of gets a tick bite )

Girlie said...
Hey Astro - as you know- my husband is on thyroid meds.

His labs show he is in range.. but he feels better if he takes a little more of the med.

But because he is in range the doc(s) won’t give him a script for more.

The “range” is quite broad so if he was to take a smidgen more - he’d likely still in range.

I am putting an order in with AllDayChemist for some synthroid and some abx (to have on hand in case one of gets a tick bite )

Yes, it’s ridiculous. How many hypothyroid people on medication are actually still hypo because of the wide ranges. These doctors have no idea what misery they’re putting their patients through. And they don’t seem to care.

The symptoms of hypo thyroid kind of feels like: someone hit every joint in your body with a 2 x 4, you can’t sleep at night, so you have bags on your eyes, and yet you’re so tired you’re just about to fall asleep standing up in the daytime. And your brain turns into mush, you can’t think clearly. It’s kind of like Lyme disease itself.

Yet some doctors are OK with this. Like I said, they just don’t care.

For some reason, they seem to be afraid of prescribing out too much thyroid medicine, because that can make your pulse go up and possibly give some people a heart attack. What they don’t tell you, but they should is if for some reason you feel your heart racing someday,…just skip your thyroid medicine the next morning and get a blood test. It’s really that simple.

And being hypothyroid, under medicated, can also give you a heart attack as it makes your heart do more work for the same results.

Rant over

Has anyone here heard of the following person or used his information?

Westin Childs, DO
https://www.restartmed.com

I downloaded the following information from his website. One of the documents is "Tips & Tricks to Find a Thyroid Doctor."

Free Resources & Downloads for Thyroid Patients
https://www.dropbox.com/scl/fo/8ht8mjz7mim742cva9h07/h?rlkey=ijjbtzeda61v17a21vhc0oh1c

Thanks for the feedback, WbF. I'm glad the information seems like it might be useful.

Also, you're right about the laboratory name. It should be "Great Plains Laboratory." Great catch. I edited the document and uploaded a revised copy. I'll also e-mail Dr. Childs and mention it. Thank you.

i have used Westin Childs as my main go to for thyroid info for some years now

i think he is pretty reliable

has gone the way of many others - youtubing, selling his own brand etc - but i guess everyone has a right to make a living - and the freely offered info is still good quality i think.

it may not be the absolute bleeding edge of latest research - but its a lot further forward than any conventional source and i thinks still conservative enough to be safe.

Total T3, even though it sounds impressive is supposedly not accurate and it’s an older test.

Sometimes people still benefit from increasing their T4 or T3 into the mid range versus the lower parts of the normal ranges. But in these cases, it’s usually found that they also have Hashimoto antibodies which do you did not mention if you had those or not that is the difference between regular low hypothyroid and autoimmune hypothyroid .

Hashimoto antibody tests areTgAb and TPO.

Garzie said...
may be worth trying them separately to take the multiple variables and conversion out of the equation to some extent

ie try T4 only initially ( works for some ) then try T3 only - or add T3 to the T4, when everything is stable, so you are only changing one thing at a time

That’s what I tried years ago after T4 only did not do anything for my symptoms. I found that synthetic T3 helped, but I had to dose many times a day at very small doses because it was just so strong and short lasting. Certainly was more convenient, which was the plus side.

So then I tried pig thyroid. I was not excited about trying it because of so few doctors that use it or understand it. But it seem to be well embody most positively response too.

I also dose that two times a day. The second time in the afternoon I use a sublingually after making sure my mouth is fully rinsed out with no food particles to ensure proper absorption. I’ve purposely done this this way for six weeks and then by just swallowing the pills for six weeks and tested both of them at the same clinic to see the results, and they were the same.

Someday the healthcare industry in the US might force me to use synthetic thyroid medicine again, as the FDA would really like to completely eliminate RX pig thyroid.

Garzie said...
oddly i don't notice any obvious difference between

-no thyroid meds
-just T4
-T4 and T3

.

It is really odd how some people feel the effects of different thyroid levels, and some people just don’t. It might have to do with how individuals thyroid levels influence their other hormones or maybe something else altogether. Maybe even the amount of inflammation in the thyroid gland itself (Hashimoto).

One thing for sure I can tell the difference night and day. when I am hypothyroid my ability to just function is very difficult.

And although I always mention the individual hormone levels are more important than TSH, the highest TSH I’ve ever had I think was in the 40s about 10 years ago. I was quite surprised because it didn’t feel a whole lot different than having a TSH for me of around 10. That being said if my TSH is 10, I can barely do anything: I am wired but tired, somewhat shaky and can’t sleep. It’s almost like my body is purely running on cortisol when that happens. Since I have an adrenal gland tumor, I get morning cortisol levels checked on occasion. Numerous times I’ve been at the very top of the range, but never over yet.

And as an example, how reverse T3 is also possible. I’ve had extremely high T3, along with reverse T3, and the TSH was also extremely high. So a super hypOthyroid TSH along with a supErhyper thyroid T3. That is only possible when you have a reverse T3 along with it. Or a totally messed up pituitary gland with a tumor.

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Note: I improved my thyroid levels with pig thyroid, and noticed the difference in symptoms about 8-10 years before I actually treated tick infections. Then after antibiotics, I had more symptoms resolved. But not 100% completely. That will probably never be possible since I also have hypogammaglobulimia. And who knows maybe still some sort of tick infection symptoms. When you have this much going on with the immune system, it’s just too hard to figure out. So much of the symptoms can overlap.

Post Edited (astroman) : 3/3/2024 8:52:32 PM (GMT-8)

i agree astro - its odd

of course because i wasn't diagnosed ( or even tested properly at that point) i only have that routine TSH test -no data on T4 or T3 levels etc at that time point - so other than its clear my thyroid hormones could not have been optimum - and likely hashimotos had started - i dont have anything else to reference till a couple of years later - when hashimotos was officially diagnosed in my multiple visits and tests to try to find out the cause for my then mystery illness - at that point my TSH without medication had dropped to around 6-8 - so still out of whack and anti-thyroid antibodies were subsequently found - but not really any noticeable improvement from medication T3 or T4

i read somewhere in some recent literature that people with outside range but still relatively low TSH levels (i think 10 to 12 or below ) also tend to have outside range but relatively low levels of anti-thyroid antibodies.
and that people with TSH of 40 or 50+ and sky high antibodies are the ones who really benefit from medication - not those with only mildly elevated TSH ( not sure if the study detailed T3, T4 RT3 etc )

so perhaps this is an explanation for why we have such different experiences
ie it could be that your thyroid is making little or no t4/t3 and as a result you are very much dependent on the meds and react to T3 strongly - as would be expected
whereas mine is sub optimal - partial functioning - but everything can limp along more or less OK - and it could be the underlying cause of inflammation - infection etc that is driving more symptoms

its guesswork / supposition - but at least fits with what we see

when i was arriving at the correct dose of T3 and T4 for me - i did some math based on the change in blood levels vs dose of T4 and T3 at different doses - its not a precise method - but it indicated i probably had around 50% of thyroid gland function remaining - so again this seems to fit with the above

apparently the majority of people on thyroid meds are in the only moderately raised TSH category
and my guess is this points towards some as yet undiagnosed root cause