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Hello, this is my first post here. I was born in 1999, have had some symptoms since childhood which doctors could not explain and solve (not related to thyroid). Had been chronically visiting doctors since then. So the first time I had a thyroid ultrasound was in maybe 2014 and there were no problems with it. The second time, in another attempt to explain my problems it was done again 2017 and some tumor(s) were found and a doctor told me the whole thyroid had to be removed. By this point I believe I had thyroid blood tests multiple times and there were no problems and tumor was most likely asymptomatic. Diagnosis was "papillar carcinoma" if I remember correctly, although nobody ever told me it was "cancer", I guess bc of psychological effect of that word. Doctors were not speaking to me directly, they were speaking to my parents. I asked one of the doctors (supposedly the most qualified one) if it is possible to remove the tumor only without removing the organ itself and he and his assistant acted like I was an idiot basically... Later after thyroid was fully removed the other doctor admitted it was possible to remove only a part of it... What a joke. I was told I would have to take medicine for the rest of my life. It was a huge psychological trauma to me as I had become against meds in general due to my experiences with them and views (my later life confirmed those views even more when I got my severe drug damages, actually related to things I am talking about now, maybe more on this later). A huge mistake I have been making since then was to not do any medical research on my own and not go on forums like this up until the point where I got such damages that forums cannot help anymore. "Doctors know best" was the most naive and dangerous bullshit I ever believed. One thing I did not know back then was that there are actually two thyroid hormones (I actually remember now that I saw both of them on a list of possible blood tests but... idk my reasoning, probably that bs of trusting doctors prevented me from having any thoughts at all). So this post is becoming much longer than I expected, even through I am omitting some things to avoid distraction. Anyway. I had full thyroid removal surgery, then after maybe a month iodine therapy, and after another like 10 days I took a T4 tablet for the first time and had a bad reaction to it. Now I think maybe that was nocebo or being nervous or smth. But doctor told me it is a real reaction to lactose in the tablet and recommended to use Tirosint capsules. So in total it took me maybe 2 months to start properly taking this hormone. I was taking T4 hormone I believe 100mcg per day where optimal dose would be maybe close to 150mcg. I was not having any problems when I started taking this (which was the point of the lowest t4 concentration I guess). But after maybe 20 days of taking t4 I started having serious problems treatments for which were a big chain of iatrogenic harms which largely destroyed my life. I will not go into details right now, to avoid distractons. But I am convinced that those problems were caused by lack of t3 which I had never taken by that point (I am now taking tablets of it and I dont remember when I started it, it was prescribed by the same doctor who failed to do it when it was needed).

So my questions now:

1. Do you think my treatment (surgery-wise) was a correct choice?

2. Was I actually having adverse reaction to t4 tablet or that was just nocebo? I am taking t3 in tablets now.

3. Is it appropriate to prescribe t4 hormone ONLY to a patient without a thyroid? Does anyone have experience taking t4 (without t3) once thyroid is removed? What was it like?

Feel free to ask questions but I will disclose some of the details after I get some answers. Preferably support your answers with scientific articles or guidelines. Thanks.
 

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I'm 58, male and for 25 years profoundly hypothyroid, I might as well have had it removed as the scar tissue that remains of my thyroid is 100% incapable of producing any hormones. It's been one hell of a struggle. Doctors suck, and my endocrinologists have largely been useless. Including and especially the ones at the highly regarded Cleveland Clinic.

In the end, I, an aircraft mechanic, with the help of "Google University" (my goofy way of saying Google searches) solved the problems myself. I then found a Concierge doctor, w/ associated specialists that would prescribe what I found to work.

Synthroid T4 does not work for me, it keeps me alive, but I have trouble at any dose, with low blood sugar, exercise intolerance, fatigue and rapid weight gain. Despite lab results in the normal range.

NDT (Armour, NP, Westhroid, Erfa etc) (I've tried them all) do work differently and for a time measured in months, I do OK on them. But the T3 they contain gets consumed quickly and I crash with fatigue. I can't take them ONCE per day. I must take them 3 or 4 times per day. This led to my "discovery" that I simply needed T3 to be high all day.

T3-only treatment (Cytomel) taken 6x per day, has been a flat out miracle. I'm not cured, I'm not normal on this treatment, as it is a bit of a roller-coaster ride as T3 has a very short "half-life" and absorption is often different day by day, but I am functional, mentally sharp and I've gotten my life back. Plus, I can adjust the dose by my symptoms. If I'm sweating too much, I take a bit less, If I'm unusually tired at noon or cold in mid summer, I take a bit more. The end result is that I can manage my symptoms easily and quickly. With results either way in about 30 minutes!

I don't know how to answer your questions. But I did want to point out what worked for me, and how it works.

I also have to take 10mg (or 20) Prednisone for another autoimmune condition.
 
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