I think my results are good - although I still don't feel great, but I'm addressing deficiencies in minerals, so that may help, and I've managed to source some proper cannabis oil, so that should help with the fibro - assuming that's what it is.
What I'm confused about is how my T3 has fallen despite me not reducing my NDT. I started taking 25mg of levo 6 weeks ago - hence the test now - and expected improvements to my very low T4 levels, but not sure why the T3 has dropped.
Any ideas?
Thanks for the help.
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If you think you have fibromyalgia, one of TUKs Advisers was an expert in fibro. He also ran the Fibromyalgia Research Foundation. He stated that it was due to people being Thyroid Hormone Resistance and that they recovered on T3 alone. Some had to have a larger dose than would be 'normal'.
Unfortunately Dr Lowe died through an accident but there's still some good information available.
Thanks very much. I am grateful The Link opens with no problem.
Recently I've found that if I want to include a link and if HU senses something is 'wrong' and pops up to tell me that I should not include private numbers or personal information, which I haven't. It is a bit frustrating.
Yes - it does warn you. But it is only a warning - you can just go ahead with posting.
It is trying to advise people that they have included email addresses and/or links (which could be inapprorpiate or inadvertent) before tyhey post - which seems reasonable. But the wording could be improved.
Thanks. I have read his info and lots from Isabella Wentz. I had been putting it down to other everyday things, but once I went low carb and got rid of my migraines, I was better able to isolate the pain from the fibro and paid attention on here to people with the same symptoms.
Based on the symptoms of others with thyroid problems - and particularly Hashi's - I believe I have fibro as part of the symptoms: terrible neck and shoulder pain, inflamed vagus nerve, muscle aches and pains, pain in various joints, lower back pain, tiredness, etc.
It only really became a problem when I ran out of cannabis oil (I take that to treat Crohn's). I'd vastly reduced the amount I was taking to try and eke it out until I found another supplier and the fibro symptoms began to creep in. I ran out completely around xmas and was on painkillers most days since then. This is a worry, as only paracetamol with caffeine in seems to work, and with Hashi's I try to avoid caffeine. Plus, some days I've realised lately I was taking a LOT of paracetamol, which is never good, of course.
I've been back on the oil for 3 days - and at a low dose, as I now have to build up a tolerance again - and haven't needed painkillers so far. I am having a few twinges, so I know it's there, but the oil is suppressing the symptoms.
That said, I would like the fibro to go completely. I'll look into what I can do for that. I'm reducing my oxalate intake (hard, as with being low carb, dairy-free, gluten-free, nightshade-free there's b*gger all left to eat!!!), as I read that can help.
Director of Research: Fibromyalgia Research Foundation
Editor-in-Chief:
Thyroid Science ThyroidScience.com
American Academy of Pain Management (Ret)
Dr. John C. Lowe is a fibromyalgia, thyroid, and metabolism researcher. As Director of Research for the Fibromyalgia Research Foundation, he has spearheaded the scientific study of two related topics: the metabolic causes of fibromyalgia, and the relief of fibromyalgia symptoms through the treatment approach he developed and named "metabolic rehabilitation."
He and his research team determined that the two main underlying causes of the documented symptoms and objective features of fibromyalgia are hypothyroidism and/or peripheral thyroid hormone resistance.
Dr. Lowe is author of the internationally acclaimed book The Metabolic Treatment of Fibromyalgia. The book is considered by many to be the most important document every published on fibromyalgia. At the same time, the book comprehensively covers basic and clinical thyroidology.
In addition to conducting studies, Dr. Lowe also provides long-distance educational consulting for clinicians, fibromyalgia patients, and other patients with hypothyroidism or thyroid hormone resistance.
Biography
Dr. Lowe holds B.A. and M.A. degrees in research-oriented general psychology from the University of West Florida. He also holds a B.S. degree in human biology and a doctorate in chiropractic from the Los Angeles College of Chiropractic, now the Southern California University of Health Sciences. He formerly taught psychology at the Miami Dade Community College and was a faculty member in the Clinical Sciences Division of the Texas Chiropractic College.
Clinical Licenses. Dr. Lowe has been a chiropractic physician since 1977. At different times in his clinical career, he was licensed to practice in Florida, Texas, and Colorado. He was originally licensed to practice in 1978; he voluntarily gave up his final clinical license on January 1, 2010.
Dr. Lowe had long decided (some ten years before) to strategically give up his licenses at a certain point in his career. He was well prepared for that point, having been advised and tutored about it by many of his medical colleagues who had been defrocked by their regulatory boards and courts for resisting the use of T4 replacement therapy and actually helping thyroid patients recover their health. The predetermined point to forfeit his licenses was clearly defined: it was when it became his evidence-based opinion that a corrupt chiropractic board and/or corrupt judicial officials were arranging to try to silence him from his constant reports of the corruption and incompetence of the endocrinology specialty in dealing with hypothyroidism and thyroid hormone resistance.
Dr. Lowe used a calculated judo approach to what he believes was finally an unscrupulous attempt to silence him. By using this long planned approach, he avoided much of the apparently work-distracting and resource-draining intentions of his opponents. At that point, he gave up his clinical licenses, thereby removing from his forehead the license-based target for the snipers of corruption. Giving up the licenses caused him and his family no hardship and little distraction, as he had long prepared for this eventuality. As he had often warned, the attempt to silence him merely freed him to speak more often and more vociferously about the horrors imposed on humanity by the endocrinology specialty and its Big Pharma sponsors.
Rather than direct clinical care, Dr. Lowe now continues his many-years practice of informational/educational consulting with clinicians and patients. He provides them with information the patients need to achieve optimal health. His main focus in informational consulting is the safe and effective use of thyroid hormone, but he also provides consultations on health in general.
Publications. Dr. Lowe has authored more than 160 articles, scientific papers, and book chapters. His writings have appeared many journals, including Psychological Reports; Medical Science Monitor; the Journal of Behavior Therapy and Experimental Psychiatry; the American Journal of Pain Management; Anabolism—A Journal of Preventive Medicine; Medical Hypotheses; Lyon Méditerranée Médical: Médecine du Sud-Est; the British Medical Journal; the Journal of Myofascial Therapy; the Clinical Bulletin of Myofascial Therapy; the Massage Therapy Journal; the Journal of the American Chiropractic Association; and Thyroid Science. Trade papers such as Dynamic Chiropractic, the Chiropractic Journal, and others have published articles and monthly columns by Dr. Lowe.
The authors of at least twenty-three books have cited or described Dr. Lowe's work. Among his own published books are Spasm, Your Guide to Metabolic Health, and The Metabolic Treatment of Fibromyalgia. Study Sphere gave Dr. Lowe its Excellence Award for his chapter in The Metabolic Treatment of Fibromyalgia in which he shows that fibromyalgia is not a psychiatric disorder. In the chapter, he refutes the notion that fibromyalgia is a mental or emotional disorder. He also argues that the misdiagnosis is usually a product of the psychological disturbance of physicians who make the misdiagnosis.
Awards and Memberships. In 1977, the American Chiropractic Association awarded Dr. Lowe its Annual Scientific Paper Award. In 1992, for his contributions to the field of myofascial therapy, the National Association of Myofascial Trigger Point Therapists appointed him an honorary lifetime member. He has served as an official scientific reviewer on the International Reviewers' Panel of Medical Science Monitor, an international journal for experimental and clinical research. As a reviewer, he did critical reviews of submitted research papers in the fields of hypothyroidism and thyroid hormone resistance.
Dr. Lowe is a member of the Board of Medical Advisors of Thyroid UK, and is a member of Index Copernicus Scientists, a global information networking system for scientists. He is Editor-in-Chief of the open-access journal Thyroid Science (ThyroidScience.com), which publishes papers on the full range of topics in thyroidology. He formerly served on the Advisory Board of Inside Texas Running Magazine and the Editorial Review Board of the Journal of Bodywork and Movement Therapies. He is a former editor of the Journal of Myofascial Therapy and the Clinical Bulletin of Myofascial Therapy.
In December 2005, Dr. Lowe became a member of Index Copernicus Scientists upon invitation from its CEO Mark R. Graczynski, MD, PhD. Index Copernicus Scientists is a global information networking system for scientists, designed by and for scientists.
According to Dr. Graczynski, “The aim of this web-based communication platform is to offer a set of essential tools to encourage the effective exchange of information between scientists worldwide as well as to promote and initiate international research collaboration.” He also notes, “The system encourages the effective exchange of information between scientists worldwide as well as to promote and initiate international research collaboration.”
Dr. Lowe's line of metabolism research over the last twenty years led to two significant outcomes: First was the solution to the problem of fibromyalgia, showing that its main underlying mechanism is too little thyroid hormone regulation, often complicated by nutritional deficiencies, low physical fitness, an unwholesome diet, blood sugar dysregulation, and the use of metabolism-impeding drugs; second was his creation and coining of “metabolic rehabilitation,” a high-precision, data-driven clinical approach for helping patients to improve or recover. His hope is that his interaction within the community of international scientists through Index Copernicus Scientists will lead to researchers in other countries becoming involved in the line of metabolic research he began and continues.
The 62nd edition of the premier biographical source Marquis Who's Who in American was published in 2008. (For a history and description and Marquis, and its committee's process of selecting individuals to include, see Wikipedia's article on Marquis.) Dr. Lowe was selected by the Marquis committee to be included. Marquis, which began publication in 1899, chronicles the lives and careers of men and women their committee considers noteworthy Americans. (Dr. Lowe's comments on his inclusion in Marquis.).....
Dr. Lowe is a devout critical rationalist. This means that he subscribes to the hypothesis (proposed by Sir Karl Popper and articulated by David Miller and others) that the ultimate job of logical, scientific thinkers is to formulate bold hypotheses, and rigorously try to falsify them. The reason for falsifying the hypotheses is to eliminate errors in them and perhaps the entire hypotheses. Free of at least some of their errors, ideas, beliefs, hypotheses, and theories may become more accurate representations of truth, which is correspondence with truth. If eliminating errors makes it obvious that an idea, belief, hypothesis, or theory is entirely false, then we can—having learned from the falsification—replace it with one that is hopefully more accurate.
He is also an active critical analyst. This means that he logically analyzes his own thinking and beliefs and those of others to learn whether or not these are accurate and rational. In recent years, drug and medical device corporations have largely co-opted medical research, the medical profession and its institutions, medical practice guidelines committees, and the US Congress. These corporations have essentially turned all of these groups, to varying degrees, into marketing tools for the products of the corporations. This phenomenon is the basis of the statement that the major motive behind science today is economics rather than curiosity and problem solving. This corruption of science has brought about a necessity for patients and clinicians to protect themselves from marketing disguised as scientific findings. Through critical analyses, Dr. Lowe is exposing such marketing disguised as science in the fields of fibromyalgia and thyroidology.
Examples of Dr. Lowe's critical analyses are his critiques of the T4 vs T4/T3 studies; the false and potentially harmful beliefs of the self-proclaimed "real thyroid expert," Dr. Richard Guttler the British Thyroid Associations presentation of selective and false evidence in advocating T4 replacement over treatment with desiccated thyroid; and Dr. Guttler's false claims about natural desiccated thyroid.
History. Dr. Lowe began using myofascial therapy in 1980 under the tutelage of the late chiropractic radiologist and clinician David Ramby, D.C. For years, Dr. Lowe's main clinical focus was patients' chronically tense muscles, fascial adhesions, and myofascial trigger points. To help these patients, he used a broad-spectrum therapeutic approach. It included soft tissue manipulative techniques, Travell and Simons's stretch and spray, clinical nutrition, and various physical therapy modalities, especially ultrasound. After studying "perpetuating factors" (factors that make myofascial patients treatment resistant) as described by Drs. Janet Travell and David Simons (especially in the 1st edition of their famous Trigger Point Manual published in 1983), he began tenaciously studying biochemical abnormalities that render some patients resistant to otherwise effective myofascial therapy.
While studying the role of thyroid hormone deficiency in treatment resistance of myofascial pain syndromes, Dr. Lowe found that hypothyroid fibromyalgia patients usually recover from their fibromyalgia symptoms when treated in one or both of two ways: (1) a thyroid hormone dosage greater than a replacement dose (the amount needed to keep the TSH level within the dubious "normal" range), and (2) with desiccated thyroid or T3 rather than the customarily prescribed T4 (thyroxin). He also found that most fibromyalgia patients who aren't hypothyroid also improve or recover without overstimulation when treated with fairly high dosages of plain as opposed to sustain-release T3. These patients can be said to be partially resistant to thyroid hormone.
In 1995, one of Dr. Lowe's patients who had recovered from her fibromyalgia symptoms through his metabolic approach convinced him to established the Fibromyalgia Research Foundation (FRF). The three purposes of this 501(c)(3) nonprofit organization are to: (1) support scientific studies of the metabolic treatment of fibromyalgia patients; (2) determine the underlying molecular mechanisms of fibromyalgia; and (3) educate fibromyalgia patients, clinicians, researchers, and the general public about the findings of FRF-sponsored research.
FRF's charter requires the organization both conduct and publish research and educate patients, clinicians, other researchers, and the general public about fibromyalgia. Complying with this requirement, Dr. Lowe has remained vocal about what his research group determined to the ultimate creator of what we call fibromyalgia. That ultimate creator is T4 replacement therapy. The therapy is so mistakenly conceived and clinically ineffective that since the early 1970s, when it first imposed on thyroid patients, a range of mysterious new diseases have been reported. Published research shows that the plausible mechanism most of these conditions is too little thyroid hormone regulation.
In 2006, Dr. Lowe published the first two studies that showed that on average, female fibromyalgia patients had resting metabolic rates about 30% below normal. fibromyalgia patients. In two studies published in 2006 (for the publishes study report, see Medical Science Monitor [scroll down to "Clinical Research"] and Thyroid Science). The studies also showed that fibromyalgia patients had significantly lower basal body temperatures than those of healthy controls. In two ways, results of these studies vindicate Dr. Lowe's hypothesis of fibromyalgia in two ways: (1) the studied found that fibromyalgia patients are hypometabolic, and (2) that the most likely mechanism of the patients' symptoms is too little thyroid hormone regulation.
Dr. Lowe has also determined that some 90% of fibromyalgia patients have thyroid disease. The thyroid diseases include primary hypothyroidism, central hypothyroidism, and partial peripheral cellular resistance to thyroid hormone. Most hypothyroid patients fully recover when they undergo the metabolic rehabilitation using natural desiccated thyroid or T3 alone. And most fibromyalgia patients with thyroid hormone resistance markedly improve or fully recover when they go through metabolic rehab and use T3.
Dr. Lowe is firm that he has determined the underlying mechanisms of most patients' fibromyalgia. Peter Warmingham of Thyroid UK pointed this out in 2002 in his article titled "Fibromyalgia has been solved" (Fibro Focus Supporter, 3:1-3, 2002). Dr. Lowe repeated Mr. Warmingham's announcement on August 19, 2005 in Sugarland, Texas at the Functional Endocrinology Symposium (sponsored by the Professional Compounding Companies of America), and he reiterated it on May 25, 2007 at the endocrinology symposium of the Institute for Functional Medicine in Tucson, Arizona. Overwhelming scientific evidence supports Mr. Warmingham's and Dr. Lowe's announcements.
helvella why couldn't I copy/paste the link please?
The link you posted simply does not exist. I do not know why. Broadly, it is either an incorrect link or the page it should link to is no longer present.
As you know, I copied everything I could get from his site into a large PDF and that is available:
Just tried again this morning and it went straight into it, maybe my internet (via satellite)wasnt too good yesterday evening, who knows, now is fine, thanks, hope it will now open on pc as this mobile too small to read on.
About the actual results - is my T4 still a bit too low? Should I be aiming for mid-range?
I expect, given the length of time between the blood test and taking my NDT that my T3 is still right at the top of the range.
I ask, as I have a GP appointment after lunch and I was thinking it may be a good idea to up the levo a little and drop the 1/4 of NDT to take me down to 1.
What do you think about that? On paper that would get me mid-range for T4 and hopefully just above mid-range for T3.
I don't think you should change anything without accurate results.
How do you feel? I'm sure you've talked about that somewhere in this thread, but I can't find it. If you feel good with those results, then don't change anything. It's not a problem to have your FT3 slightly over-range if you feel good.
As for FT4, yes, it's low, but not necessarily too low. Not everybody needs their FT4 mid-range. Personally, I'm very happy with an FT4 of zero! You would need to experiment to find out exactly where you need yours, but even if you increase the levo, I would hesitate to reduce the NDT.
I don't feel good. I have more energy but that's about it. I'm sleeping well and my fibro pain is much reduced only because I started taking cannabis oil again - my sleep and pain improved literally the next day after taking some oil that night, so there is no coincidence there. If I stopped taking cannabis oil I would be back to poor sleep and a lot of pain.
Also, my hair is still awful and my eyebrows and eyelashes haven't grown back and my skin is still rough - although not quite as bad as it used to be a couple of weeks ago, so there are some improvements. My eyesight is a bit better, too.
Well, maybe increase the levo, then, and see if it helps. It's all trial and error, anyway. But, if it were me, I don't think I'd reduce my NDT just yet.
Thanks, I'll try that. I've just spoken to my GP and she's going to prescribe me 2 lots of levo at 25mg and I'll cut one in half, so the increase will just be 12.5mg and not the full 25mg if that makes sense?
No, that was my choice to go up by such a small amount. If I'm almost in the zone I may as well try a smaller increment, as the levo upsets my stomach among other things, and I want to take as little as possible.
Almost in what zone? You mean in the range? Yes, but you'll be right at the bottom of the range, so doubtful that would help anything. If levo upsets your stomach (you probably have low stomach acid) maybe you'd be better off without any at all.
Almost in the zone as in getting to the point I will be as well as could be expected.
So far, I've been undermedicated and overmedicated on NDTs and feeling pretty ill.
My last results showed very low T4 and high T3 (although the T3 was in range), as you can see from the results I posted.
I was told on here that I'm one of those people that can't just take NDTs alone, and was advised to take some levo - starting at 25mg, which I have done. Although I feel considerably better in some ways, I am obviously not at my perfect dose, or I would feel well.
Levo doesn't upset my stomach, but I do react to the lactose with gas and bloating. The levo I tried without lactose - Teva - made me feel very ill. I'm now on Wockhart.
If it's down to trial and error, then I obviously need to take a bit more or bit less of something, so if you say my T3 being high is a good thing, then I'll try a bit more T4.
I'm looking into a company that makes levo in almond oil with ascorbic acid as the preservative. There is nothing else in it. But it's likely to be very expensive and I have to wait for my GP to do me a private prescription before I can even find out the cost (which tells me it probably will be too expensive), so I need to do something else for now.
One question I was wondering, is if I take levo, won't my T3 also go up from converting? That's why I thought I may need to reduce my NDTs a bit.
One question I was wondering, is if I take levo, won't my T3 also go up from converting? That's why I thought I may need to reduce my NDTs a bit.
Yes, I did understand that. But, presumably you don't convert very well, and that's why you're taking NDT. Am I wrong?
I was told on here that I'm one of those people that can't just take NDTs alone, and was advised to take some levo
On what was that opinion based?
Interesting about the levo in almond oil. I haven't heard of that. I'm sure lots of people on here would be interested in that, so maybe you could do a new post, telling them what you've found out.
Actually, I was told on here quite a while ago that I convert well, based on one of my first thyroid blood tests.
I'm on NDT as I hate taking pharmaceuticals and wanted as natural a treatment as possible. Since I have bowel disease as well as Hashi's, I am careful not to take gluten and lactose, and I try and avoid as many toxins and allergens as possible in my food and supplements. That's why the levo doesn't agree with me, I guess, but I wasn't doing well on NDT alone and was advised on here that I needed T4 based on the results pictured underneath my most recent ones.
With the introduction of T4 I feel a lot better than I did (aside from the digestive issues from all the rubbish in the levo), and my TSH is now in range. But from reading the experiences of others, it seems if my dose is correct I should actually feel well - skin and hair back to normal, no fibro symptoms, etc.
So, based on all that, it seems I haven't reached my 'sweet spot' yet and am wondering how best to tweak the dosage of one or the other of my thyroid meds.
Yes, I will do a post when - if (depends on whether I get a free private prescription off my GP - I get more info on the natural T4.
Actually, I was told on here quite a while ago that I convert well, based on one of my first thyroid blood tests.
Well, I didn't go through your old posts, so I don't know. I just assumed, thereby breaking one of my own cardinal rules! lol
I'm on NDT as I hate taking pharmaceuticals and wanted as natural a treatment as possible.
You know what? It really shouldn't be called NDT, it should be called DT, because it's honestly not as natural as all that. The hormone comes from pig thyroid, OK, but then it is highly processed, with lots of fillers/excipients, to produce the finished pill. It has even been known for synthetic hormone to be added to make up the potency.
Just because levo is synthetic, doesn't mean it's what your refer to as 'pharmaceutical'. It's an exact copy of the hormone produced by your thyroid. Being synthetic does not make it a drug. And, there are even people who do better on synthetic than the pig variety - me, for example.
Since I have bowel disease as well as Hashi's, I am careful not to take gluten and lactose, and I try and avoid as many toxins and allergens as possible in my food and supplements
Have you checked the ingredients of NDT?
it seems if my dose is correct I should actually feel well - skin and hair back to normal, no fibro symptoms, etc.
That is right. If you still have symptoms, then your dose is probably wrong.
Yes, I will do a post when - if (depends on whether I get a free private prescription off my GP - I get more info on the natural T4.
You mean the one in almond oil? It will still be synthetic T4. They haven't yet managed to separate the different thyroid hormones from the pig thyroid for commercial purposes, as far as I know.
The NDT I sourced is WPThyroid. I chose this one precisely because it had no nasties in it - not that I could find on the label, anyway. It certainly doesn't upset my digestive system like pharma T4.
By natural I meant only to differentiate it from the pharma version with additives in it.
So, that leaves me with trying to go up a bit more with the T4? Or coming down a 1/4 grain of the NDT?
Sorry, but looking at your results, I can't remember which one is the latest. If it's the one with the low FT3, I think I would increase the NDT, and leave the levo where it is. Why would you reduce the NDT?
I take your point about the fillers, but if we're just talking about the hormones, the synthetic and the NDT are the same.
I'm going to do another test. The latest is the one with the low FT3 - but that's because I last took the NDT about 28 hours before the blood test.
I'll order another test on Thursday and take the NDT before I go to bed and the T4 after the blood test.
My thoughts on reducing the NDT were based on the fact that it would be high had I done the test correctly. And also that something needs to change, since I still don't feel well. I'm obviously taking too much or too little of something.
But rather than deal in hypotheticals, I'll just have to do the test again and do another post once I have those results.
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