Dec. 2004 I rec'd complete thyroidectomy with subsequent RI. 6 weeks post-surgery I began to develop hypo symptoms on 100 mcg. Synthroid. 6 months post I was experiencing extreme multi-hypo symptoms and additionally severy myofascial pain. My muscle pain on minimal exertion felt the same as the "burn" experienced during weight-lifting. I had severe fatigue and had gained 50 pounds in 3 months. I had washboard abs prior to the removal of my thyroid and was a total gym-rat.
I was diagnosed with "Peripheral Thyroid Hormone Resistance" by the director of the Metabolic Research Institute and am now treated with supraphysiologic doses of 150 mcg. of T3 dialy. I feel "normal" and have resumed my life although my labs show that my free T3 is over 900.
The reason for the muscle pain occurred because my ATP production was occurring anaerobically due to an insufficient amount of thyroid hormone reaching my cells and thereby producing lactic acid build-up. It makes sense to me atomically because I am a physics major. Also, from a metabolic standpoint, I can relate because I was athletic my entire life and I know what "healthy" feels like. (I do see my physician every 8 weeks.)
My question is this: have you ever heard of or treated this condition?
This is the members' forum. We are not doctors, just fellow patients.
I have heard of RTH and have actually done some research on it since I have been diagnosed with pituitary resistance to thyroid hormone (PRTH). I have to say that this is some of the most challenging reading I've done on thyroid disorders. It's all very technical. If you're feeling the slightest bit hypo, it will put you to sleep in no time. Actually, I think that even if you're feeling a little hypER, it might do the trick for you!
My RTH is confined to the pituitary, which keeps my TSH artificially high.
Is the extremely high dose of T3 working for you? Was any other therapy ever tried? Did you go directly from 100 mcg Synthroid to 150 mcg T3? What confirmed the RTH diagnosis? High TSH in the presence of high FT3 and FT4? Or have you had genetic testing? I'd ask what the range was on your FT3, but I'm sure you are hundreds over it, which is what it characteristically has to be to combat the resistance.
I find this very interesting since you are the only other person I have ever heard of who had a diagnosed resistance issue.
The extremely high dose of T3 is the only thing that works for me. I did most of the research myself while I was at my sickest and, yes, very technical.
To begin with, I was taking 100 mcg. Synthroid and I persuaded my then doctor to add 25 mcg. Cytomel (T3). It helped but only by 25%. My research was showing that the direction I needed to take was more T3. My hypo symptoms were severe and I was told by the then head of endo at OU Hospital that I would just have to get used to a "new normal". This was not acceptable.
I began to see a D.O. and rec'd 2 grains of Armour per day. I discontinued the Synthroid but continued with the Cytomel. I ended up on 4.5 grains per day of Armour and 25 mcg. per day Cytomel. I experienced about a 75% improvement. I don't have to tell you that those amounts are high for a non-resistant person.
I ended up discovering Dr. Lowe at drlowe.com. He changed my life. This would be the Metabolic Research Institute. He wrote the book on THR which when not treated expresses itself as fibromyalgia. The T3 at 150 mcg. has relieved approx 95% of my symptoms. I have to monitor my sleep, stress, diet, supplementation; you name it.
My TSH is quite suppressed: TSH / 0.02. My Free T4 below normal and you know my Free T3. If I hadn't already had an interest in science and research, as well as, being VERY healthy all my life I may have accepted the "new normal" but I chose to do whatever it took. My question is: What about all the other people needlessly suffering with this? Please go to Dr. Lowe's website. Let me know what you think.
I will definitely look at Dr. Lowe's research on RTH. I've read some of his other articles, but didn't realize he was an expert in this. I won't promise to get to it today...my day is getting away from me!
Interesting...I've always felt that fibro was not a separate disease, just hypo gone wild. Yes, and there will be no fewer people suffering now that Big Pharma has a palliative for fibro.
I'll get back after doing some reading in the next day or two.
I also have a million questions to ask! Hope you don't mind that...
Any questions you have are most welcome!!! I'm no expert but probably know more on this topic than the average endo (smile). I am actually a Certified Personal Trainer so I do have an interest in health...
Due to the financial dire straits that a two year illness has placed me in, I do not have internet at home. I am much, much, much improved and currently playing catch-up on the finances/medical bills! I do have internet at work, so I will be checking this forum and answering M-F during working hours.
You're so right about fibro being one and the same!!! It is actually a metabolic issue on the atomic level (yawn). I emailed Dr. Lowe an am awaiting his answer for a theory on what he posits to be the root cause of the resistance itself. If we knew that....
About Dr. Lowe: I would definately refer to him as the expert on this subject. If you were to research Thyroid Hormone Resistance on Wikapedia they actually cite Dr. Lowe's work. Amazing. I've consulted with him on the phone and he told me that both he and his wife suffer from this condition. He actually developed THR about 20 years ago and treating it became his mission.
So I would say that his website is the last stop for info on THR. Basically, in a nut shell here it is: Patients are unable to convert T4 into T3 adequately to varying degrees and/or patients require supraphysiologic (higher than normal) doses of T3 in order to relieve their symptomology. This is why THR patients respond so well to high levels of T3. They are clinically hypo despite the fact that their labs are within normal perimeters.
What is actually occurring on the cellular level is anearobic ATP production and muscle morphology. (Another name for THR is peripheral resistance.)
ATP production is the production of energy and T3 is required in order for energy to be produced. ATP production must occur in an aerobic (oxygenated) environment. When T3 is not present, energy production occurrs in an anearobic (non-oxygenated) environment. One side effect of anearobic energy production is lactic acid production. Think of the weight-lifter feeling "the burn". Weight lifting is anearobic. After which he has sore muscles (lactic acid build up).
So basically, during the T3 deficient cycle of ATP production (KREBS cycle) potassium and magnesium are driven out of cells in order to dilute the high levels of lactic acid developing in the muscle tissue. Next sodium is driven into the cells to replace the potassium and magnesium. This is abnormal. This is also what hypo-fibro-THR-undertreated patients experience.
Energy production has to then occur in the presence of sodium (abnormal) which then disturbs the electrical charge required for energy. Next the high level of anearobic ATP production causes the lactic acid production to sky-rocket and to build up in the muscles causing the pain. There are also muscle morphologic changes that have been seen to occur which show degradation of muscle fibers and mitochondria reduction/displacement. Mitochondria are the little power-house engines of the cell the the site of energy production.
All of the above and more due to deficient amounts of T3 present in or reaching the cells. Sorry to pontificate but this condition is sort of my passion/obsession. So basically the drug companies are completely on the wrong track as you stated.
Very frustrating. The worst thing is that the medical/endo community is so close-minded and will only rely on the labs. P.S. THR is believed to affect approx 2% of the populaton.
I'm having some trouble navigating the site. When I click on the home page on the resistance link I get an "error on page" and nothing else. When I search the site, I only seem to come up with Q&As. I'm looking for his discussion of RTH without having to wade through all the Q&A stuff, which makes it fairly cumbersome. Any words of wisdom? I going to try wikipedia and see if I can find it that way.
Okay, some questions before they get lost in the shufle!
Why did you have a TT?
Were you even diagnosed with an actual "thyroid" disease (as opposed to metabolic malfunction)?
Before your TT, were your FT3/4 levels extraordinarily high, i.e. was your body compensating for the resistance? Or did the resistance begin after the TT? If so, any theories on why?
Are there people with "healthy" thyroids with peripheral RTH?
I know what you mean...I'd go up against just about any PCP with my thyroid knowledge and a good number of endos...tell me again why we pay them the big bucks?!
I'm interested in the cause/trigger for this, too. I don't even know if I've had PRTH all my life or if it's something new. As far as I know, no thyroid tests were ever done until I was well into the grips of Hashi's. Was my TSH always high (it hovers permanently around 20)? I hear discussions on peripheral resistance and general resistance, but very little on pituitary resistance alone. Peripheral is anything but an issue for me since I am very comfortable not only "in range" but quite low in range.
Pharmaceutical companies are not in the business of curing disease...hooking people on drugs that they will be on for the rest of their lives is much more profitable. I think that avenue for the development of a cure to almost anything is just about closed.
We need a definitive medical test that can detect this condition. Most doctors will just use the treaded path and not look at the singular nature of this condition, even if it is staring them in the face. How about getting some researchers involved? Whether of a university or of some other organization.
I believe they are two separate and unrelated conditions. RT3 dominance is a metabolic failure in the conversion process. For some unknown reason, your body starts to produce RT3 in greater quantities than FT3. RT3 docks at the T3 receptor sites in cells "upside down" (it's a mirror image of T3). Once RT3 is cleared (usually by temporary switch to T3-only meds), balance between FT3 and RT3 is restored and T4 meds can be started again. My personal guess on why this happens...T4 only meds (and I take levo only, so I'm not saying that from a biased point of view!).
RTH (or THR) is a "permanent" condition. Cells are unable to use T3 unless FT3 levels are extremely high. However, RT3 is not a factor. Also, there are some people who deal with RTH by taking massive doses of T4 meds, so apparently they are converting just fine. Oh, yes, and a genetic anomaly is to blame for RTH...in fact, the diagnosis is based on genetic testing (or tolerance to extreme concentrations of T3).
It's an interesting topic, and one on which most of the articles are "challenging" to read, to say the least.
Jenn985 had some very interesting things to say. Unfortunately, she seems to have disappeared. I hope she pops back in to continue the discussion.
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