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Iodine - The Biggest Result I've Had So Far

Discussion in 'General Treatment' started by jtex, Jun 12, 2018.

  1. jtex

    jtex

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    I've been dealing with varying symptoms of CFS for years. A recent (Skype) visit with a CFS-aware naturopath Dr. inadvertently led to me identifying iodine as a significant treatment for my symptoms. Searching these forums, I don't see much information about iodine's use in treating CFS.

    I took iodine for the first time 6 months ago, starting at 500mcg. I was at one of my many "fed up, exhausted, desperate" points and was googling anything that might help. I found an article about self miracl testing and, despite reservations about it's new age slant, decided to try it. I self muscle tested every supplement and drug in our house (like many of you, I have a twisted amount of supplements filling several cabinets) and found only one surprising result: iodine. I don't know why I even had iodine (not uncommon with supplements) but the self muscle grea indicated I should take 2.5mg of it. I googled iodine since I didn't know anything about it, and found lots of scary stuff about it wrecking the thisthy, being antiquated, etc. I decided to start low, with 500mcg, and follow "my subconscious' recommendation" if the lower dose seem to cause a negative reaction.

    I felt the same the best day so I tried 2.5mg. I felt much more energy, more than I'd had in about a year, within hours. I performed self muscle testing again and came up with a result of 25mg. That seemed crazy to me so I read all I could for days about iodine. Confident that 25mg was ok for some people and not a suprapharmological side, I upped the iodine. With more iodine, I had more energy.

    I continued taking 25mg of iodine for a few months, eventually feeling well enough that I began working out, staying up late, and talking on more work. I still had symptoms of brain fog, fatigue, and a week immune system, it just seemed like they weren't as troublesome because I sometimes had energy.

    Fast forward to May 2018, and I began to expect to have energy. I went on a day trip to explore wild and in a Jeep with friends and the Jeep got stuck. We spent hours digging it out and I felt a twinge of something being wrong with my body afterward. The next day, I felt the twinge again, only a little stronger. By the following day, I began to feel sick. I had what seemed like a flu for 6 weeks. During my relayed, I found a new practicioner, the one I mentioned above, and started on a new functional/naturopathic treatment protocol. Despite my misgivings, I stopped taking most of the supplements I'd been on and switched to the new protocol but I cheated a little and reduced iodine to 12.5mg.

    Over the next week, I felt progressively worse. By the second week of my new protocol, I felt the worst I ever had in my CFS journey, infection aside. I went from being half-present in life to barely getting out of bed for an hour. I keep detailed notes on everything I take and all changed in symptoms so, in a moment of relative clarity, I began cross referencing changes in symptoms and supplements. After ruling out 5 other candidates, I looked at the reduction in my iodine supplementation as a cause of my energy train wreck. It was iodine. I'm talking 50mg now, and my energy is back to 50%.

    Here's the confusing part for me: I seem to have a mammoth need for iodine AND CFS. Where those two intersect, I don't know. Any ideas from the community would be helpful.
     
  2. jtex

    jtex

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    Sorry for the typos. Is there a way for me to edit the post? I wrote it on my phone.
     
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  3. LINE

    LINE

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  4. drob31

    drob31 Senior Member

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    Iodine is anti viral, however, I suspect some thyroid issues.

    What does your blood work look like for TSH/T4/Free T3/RT3/ Thyroid antibodes/ TBG?
     
  5. drob31

    drob31 Senior Member

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    I had good results with iodine for a few days and then I crashed. I can't tolerate t3 or iodine now and my rt3 is high. Normally you'd think high rt3 would mean stay away from t4. However t4 seems to be helping me.
     
  6. Avena

    Avena

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    I’m not sure if I’m reading you correctly. But if you are worried that your dosage is high: I’ve heard of thyroid patients (not cfs/ME) taking as much as 3g Iodine a day.
     
  7. drob31

    drob31 Senior Member

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    It seems that many people who have hpa-axis dysfunction in combination with thyroid issues can't tolerate much iodine or t3.
     
  8. Wayne

    Wayne Senior Member

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    Hi @jtex,

    Thanks for sharing your story. I wrote a blog on iodine a couple years ago which has some information that may shed some light on your question regarding why iodine has worked so well for you (congratulations BTW on discovering that!). I'll just go ahead and paste the blog below, since it appears it didn't show up in your original search for iodine information on this forum.

    As amazing as your experiences with iodine have been, I have to admit, that the most amazing thing you wrote was that you typed out your whole story on your phone! Now that's impressive! ;) -- Below is my compilation of information on iodine.

    Iodine and Apoptosis - Implications For Immunity, Autoimmunity, Leaky Gut, Methylation, Cancer, etc.
    Blog entry posted by Wayne, Mar 16, 2016.

    I've been doing a good deal of research the past few months on iodine, and feel I've learned much--as well as experiencing various health improvements from iodine supplementation. Though I feel I'm still in the beginning stages of my "iodine experimentation", (and at times feeling a bit overwhelmed by what a broad topic it is), I thought I'd share a few notes that I feel are particularly relevant to people with ME/CFS.

    Iodine and Apoptosis: Iodine is needed by every cell in the body, but tends to concentrate in areas where there is frequent cell regeneration (which involves apoptosis). This includes nasal passages and mucus cells of the stomach lining, where cell regeneration takes place every 2-3 days. If there is insufficient iodine in the body to perform this critical function, dysfunction occurs. -- Sounds to me like this could have some pretty significant implications for digestion and gut health, and affect some of the dynamics associated with leaky gut syndrome.

    Iodine and Autoimmunity: Here's a couple of quotes from the book, "Breast Cancer and Iodine", by David M. Derry, MD, PhD. -- "Iodine can coat incoming allergic proteins to make them non-allergic...". "Iodine binds softly to the double and triple bond of lipids to protect these bonds while they are being transported to synaptic sites in the brain and blood vessels of the body". -- The author believes this is why iodine deficiency likely has major implications for all sorts of auto-immune conditions.

    Iodine and Immunity: The above references to high concentrations of iodine in the nasal passages and stomach can have some pretty significant implications for our overall immunity. I read one testimonial online of a man who experienced exasperating, ongoing sinus infections for years, being unable to shake them. When he finally discovered iodine supplementation, his sinus infections cleared up within days. Reminded me of the many references I've seen of pw/ME/CFS struggling with sinus infections.

    Also, as inferred by the title of the book I referenced "Breast Cancer and Iodine", the scientific evidence of the connection between iodine deficiency and cancer is by most accounts, extensive and irrefutable, even though it's doubtful most oncologists ever give it a second thought.

    Iodine and Thyroid Health: The thyroid gland captures dietary iodine, and synthesizes thyroid hormones from it (T3 and T4), storing it in the body until needed. -- Interestingly, taking thyroid extract can correspondingly increase the amount of iodine needed by the thyroid gland. Even though the thyroid gland will function better, apparently this can happen at the expense of iodine concentrations in other parts of the body. -- A distinction is made between "Tissue Level" and "Blood Circulating Levels" of iodine.

    A couple more points: Hal Huggins (holistic dentist for many decades) has extensive experience and knowledge of mercury toxicity and its many detrimental effects. He believes just one of these effects is mercury's ability to bind with T3 and T4, essentially rendering them unusable by the body. This could possibly explain why a good number of people often get thyroid tests that come back normal, but can improve their thyroid function and health significantly by supplementing with iodine.

    Also, different parts of the body need different kinds of iodine. The thyroid gland apparently can only use the "iodide" form (potassium iodide being the most common). Breast tissue however can only use elemental iodine. This is why Lugols solution and other iodine supplements like Iodoral usually come in a ratio of 2 parts potassium iodine to 1 part elemental iodine. Note: There are other kinds of iodine out there, like "nascent iodine", atomidine, and I believe a couple of others. I've not learned enough about them as of yet to make any knowledgeable comments about them.

    Iodine and Brain Function: "Lack of iodine during pregnancy is the leading cause of intellectual impairment in the world." -- A severe iodine deficiency that causes profound neurological damage and mental retardation is called cretinism. I've seen several references to a child's IQ being compromised by as much as 10-15 IQ points just from relatively mild iodine insufficiency during pregnancy.

    The fetus,--and especially the fetal brain--undergo rapid (and critical) phases of apoptosis during pregnancy. The iodine levels in the fetus during this time can actually be as much as 5x greater than that of the mother during this time. Also, iodine is highly concentrated in breast milk, as high levels of iodine are also required for the fast growing infant.

    Iodine and Improved Energy: The thyroid gland is critical for normal metabolism and energy production in the body. It's also critical for mitochondrial health, and as I recall, quite a few other areas of physiology having to do with energy production. A sense of increased energy and vitality is one of the most commonly noted aspects I've seen in the many online testimonials I've read. It's been one area that I've definitely noticed for myself. Though my overall functionality has improved only modestly so far, I do feel a much greater sense of "resiliency" in my system, and feel optimistic I'm building a foundation for myself as I go forward.

    Iodine and Detoxification (incl. Methylation): Iodine supplementation will almost always result in significant halide detoxification (flourines, chloriness, bromine, etc,). These ubiquitous toxins displace iodine in cell receptor sites, and when they in turn are displaced by adequate iodine intake, it can lead to detoxification symptoms. This why it's recommended that iodine supplementation be approached with a degree of caution, especially for people with detoxification problems. Supplemental Vitamin C, salt, and transdermal magnesium chloride are often recommended to greatly support detoxification of these halides.

    This comment I found online describes just some of the aspects of detoxification that occur (or can occur) when beginning iodine supplementation:

    "Would we like another good reason to have normal iodine levels? How about for proper methylation! In simple terms methylation is a process in which certain chemicals called 'methyl groups' are added to various constituents of proteins, DNA and other molecules. These are needed to keep them in good working condition. And if 'methyl' sounds familiar, it's part of methylcobalamin which is the active form of B12.

    So long story short, not enough iodine = underactive thyroid = not enough T4 which is needed to convert vitamin B2 (riboflavin) to its active co-enzyme form "FAD" which is needed for proper methylation. So it doesn't matter how much B2 you have, or how good your B12 level is, without sufficient T4 from a proper functioning thyroid, you won't have normal methylation (even if your MTHFR gene is normal). This will not be on the test."

    Iodine Literate Medical Doctors (ILMDs): There appears to be somewhat of an "iodine revolution" going on these past few years, largely due to the proliferation of knowledge being available and discussed online. This knowledge is stemming from examination of much of the scientific research that's been done, but often misunderstood or downright rejected by mainstream conventional medicine (sound familiar?).

    One of the pioneers in this field is Lynne Farrow, who developed breast cancer, researched extensively, and after 8 long years, finally discovered the connection between iodine deficiency and breast cancer. Here's a link to her website: "Breast Cancer Choices". She credits iodine supplementation as being indispensable to her recovery.

    She wrote about her experiences in the book, "The Iodine Crisis: What You Don't Know About Iodine Can Wreck Your Life". I think it's an excellent book, with a comprehensive history on how iodine was tragically shoved out of mainstream medicine, and how things are at long last starting to change with long-standing scientific evidence being correctly interpreted by some intrepid health care practitioners. -- Dr. Brownstein and Dr. Sircus are a couple of other pioneers, and have also written extensively on iodine supplementation.

    I'll finish by mentioning that what I've written is only a short, broad outline of the whole topic of iodine, its history, and its many critical functions in the body. I tried to focus in on those areas that I feel are most relevant to pw/ME/CFS, but there are even more than I've listed. I thought I'd wait on posting about what I've learned until I could be more comprehensive. But what I'm learning just seems to be never-ending, so decided it's better to get started than to be too obsessive about being comprehensive. :)

    From all the research I've done so far, I've learned that most (if not all) ILMDs believe over 90% of the population is iodine deficient, many of them severely so. Given that iodine is critical for areas of health that so many people with ME/CFS struggle with, I've come to believe that any progress we may be able to make by incorporating various health measures will most likely always be limited unless we address any iodine deficiencies we may be dealing with.

    All the Best, Wayne

    More Discussion HERE
     
    Last edited: Jun 12, 2018
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  9. Wishful

    Wishful Senior Member

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    A few years into my ME, I discovered that something in a multivitamin tablet made me feel much better. After much testing with individual vitamins and minerals, I found that it was iodine. However, it was only the first couple of doses that helped, and after that, it had no noticeable effect. Later, after wondering why iodine would help, but T4 and T3 wouldn't, I discovered that the thyroid gland also makes T2. I bought some, and found that it had the same effect that the iodine originally did. I felt full remission the day after the first T2 dose, and even felt bouncy with energy. After a few days of taking the supplement (100 micrograms/day), it again stopped working. When I stopped taking the supplement, I felt much worse for a few days, which I assume was my thyroid gland's delayed response to the change.

    Further experimentation showed that I needed to take T2--or iodine--every 21 days, which I feel is an amazingly precise and consistent delay. 21 days after the last dose, I start feeling much worse, and I remain at that level until I take T2 or iodine. It's not psychosomatic, because I recently found that the T2 wasn't working again...because it had lost it's potency after three or so years (the bottle wasn't intended for one capsule every 21 days).

    For me, it's that sudden rise in T2 that does something. Taking more iodine or T2 the next day doesn't reset the 21-day timer. I assume that it's helping transcribe some RNA, or produce some fresh cells or some such thing, and what it produces lasts 21 days. It seems too precise and consistent for a half-life effect, and doesn't seem to be affected by diet, activity, or anything else that should affect my body's iodine or T2 levels. It's a mystery.

    This odd response might just be specific to my body. However, you might want to experiment with taking it one day and seeing how long before the effects wear off. My philosophy is to minimize drugs and supplements to avoid problems caused by excess. You'll have to experiment, and suffer a bit, to find the optimum dosage for yourself.

    You could also experiment with T2 (3-5 diiodothyronine; the 3-3 isomer doesn't seem effective). The brand I was using is out of production, but there is another one available, but I forget the name of it. If T2 doesn't work for you, they you would know that you need to see a good endocrinologist about thyroid issues. There are plenty of lazy endocrinologists out there who don't want to deal with anything non-standard.

    Amazon has one: BioCor Thyro-T2. I notice the ad says that the body 'converts T2 into the powerful T3 hormone!' Well, yes, the body does recycle it, but it also converts much cheaper iodine supplements into T3, and probably does it more efficiently. Marketing! :rolleyes:

    If you do experiment, I'd appreciate hearing the results. I keep thinking that this odd response could be helpful in figuring out ME/CFS, if only we had more results from more people.
     
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  10. matthew894

    matthew894

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    May have something to do with the suspected 'low T3 syndrome' in some CFS patients: https://www.ncbi.nlm.nih.gov/pubmed/29615976

    For me, low body temperature and the low energy that goes with it seem to be a sign that something is wrong with thyroid hormones (maybe T3 resistance in tissues etc...). I too have experienced that supplemental thyroid hormones and iodine increase energy, body temperature. But I have to be careful because high does thyroid hormone supplements stressed my adrenal glands, and I'm still recovering from that.
     
  11. Avena

    Avena

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    Hashimoto/thyoriditis is also often not friends with Iodine as it can trigger autoimmunity in those cases. Does not seem like @jtex has any such problems, though.
     
  12. jtex

    jtex

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    I last had those labs run 2 years ago (before the fatigue in chronic fatigue syndrome had fully set in) and they were all normal.
     
  13. jtex

    jtex

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    Hi Avena! That's clarifying. I feel like I'm in uncharted waters. Coincidentally, I had a phone consult with Dr. Holladay today and mentioned the iodine effect. He said something to the effect of, if a study was done on 100 patients with CFS to see how they respond to iodine, I'd probably come out as the one with the best result. It doesn't color my understanding of CFS any better and still leaves me confused, but at least I can take iodine and be at 50%, 50% of the time.
     
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  14. jtex

    jtex

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    Your experience with iodine and T2 is fascinating. I didn't even know that a T2 hormone existed (shows how much I know about the thyroid) but I'll look into it.

    Where our results differ is that I'm doing about the same each day on 25-50mg iodine (taken as 1-2 25mg doses) for a period of months. It doesn't seem to keep me from being tired (just reduces fatigue), sick (hence the 6 week super illness from who-knows-what), foggy (ugh) or experiencing other CFs symptoms, but it does improve my quality of life significantly. I've been borderline able to work while on iodine, and basically in bed 22 hours/day without it.

    I'm curious about taking iodine or T2 every 21 days. Was there a particular source that steered you toward the 21-day cycle? If so, can you share it? Also, are you still on it, and would you say it's working better than not taking iodine or T2 at all?
     
  15. jtex

    jtex

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    That sounds like a cause to explore. I took my last thyroid hormone test before I got super-low energy, which is the symptom that iodine helps with. That points me in the direction of another thyroid hormone test while off iodine (please don't make me!) to correlate my fatigue with low T3. Thanks!
     
  16. jtex

    jtex

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    Wayne, thank you for writing this post and for sharing your thoughts with me! By the way, I hadn't planned to write a post on my phone but I started jotting down thoughts and wanted to "strike while the iron was hot" i.e. take advantage of a few hours without brain fog.

    It's clear from your post that iodine may be doing more than just one thing in my body, or may be doing something other than increasing T4 (or T3... or T2). There's so much interesting information in there.

    I'm tempted to try a higher dose of iodine along with things that help mitigate detox effects and see how I feel. I'm also tempted to try thyroid hormones alone or in conjunction with iodine. I never met a CFS treatment I wouldn't try on myself. :)
     
    Last edited by a moderator: Jun 12, 2018
  17. Wishful

    Wishful Senior Member

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    No source. No theory behind it at all. It's just what I observed. I'd start feeling lousier and stay lousier until I took some T2 or iodine (tincture form), and I'd 'reset' something and return to my baseline level of symptoms. There were a few times when I went past 21 days before the symptoms rose, but generally it's 21 days.

    I'm still on it. I don't keep track of when 21 days is up and I should expect to feel worse; I wait until I do feel worse. It's definitely better than not taking it. I'm not sure if I wouldn't end my life if I felt that lousy every day. I'm grateful that it's remained reliable. It's one of the two things that has, and still consistently does, reduce my ME symptoms (the other is cumin as a PEM blocker).
     
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  18. jtex

    jtex

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    I can relate to feeling so bad you don't want to feel that way, so I'm glad the treatment is working for you. A like improvement of one symptom can be very big, and I'm grateful to be improved this week. Thanks for sharing your experiences. I'm definitely not done with iodine, and I'll let you know what I find.
     
  19. Wayne

    Wayne Senior Member

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    A couple years ago when I was heavily researching iodine, I discovered that some people with cancer can tolerate and do take as much as 200-300 mg/day. It seems like an almost astronomical amount, but apparently women with ovarian cancer were generally able to tolerate those high amounts, and often recover. Which is amazing, because I think ovarian cancer has a mortality rate of 95%, or something like that.​
     
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  20. PatJ

    PatJ Forum Support Assistant

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    Here is an alternate view from Stephanie Buist's free Iodine Guide:
    Also listed in that document are the important co-factors to take with iodine:
     
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