The 12th Invest in ME Research Conference June, 2017, Part 2
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Hashimoto's

Discussion in 'General Treatment' started by acrosstheveil, Feb 1, 2015.

  1. acrosstheveil

    acrosstheveil Senior Member

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    Anyone diagnosed with hashmito's? I have lots of symptoms of low thyroid activity and many autoimmune issues. I have seen several different doctors and they all tell me my thyroid is extremely swollen but none seem to know what to do about it. This is incredibly frustrating.

    Do you guys have low energy, insane food/environmental intolerances, swollen glands, etc?

    What is the best type of specialist to see in regards to this type of thing? I was sent to a rheumatologist by my pain doctor and I was not impressed at all and she tried to say my illness of over 8 years is all in my head. She even told me the best thing for pain is to take nothing and deal with it because she has back pain every day. ugh.
     
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  2. Aileen

    Aileen Senior Member

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    Sorry you are having such a frustrating time. I don't have hashi's but have had hypothyroid symptoms for years and even been on armour thyroid a couple times. No goiter though.

    You might try taking selenium. It along with iodine is key for the thyroid. Iodine is needed to make the thyroid hormones (thyroxine aka T4 has 4 iodine atoms and T3 has 3 iodine atoms) and selenium is needed to make the enzymes that chop off the iodine atoms to go from T4 (the inactive hormone) to T3 (active hormone) to T2 to T1. Then the process starts over. The body is a big fan of recycling! :)

    If you have enough iodine, you likely are making enough T4. But if you are deficient in selenium, you may not have enough of the required enzyme to convert the T4 to the T3 (active) hormone. That would likely give hypo symptoms because the hormone isn't doing what it is supposed to do, or at least not enough of it. So your thyroid keeps trying frantically to pump out more T4, which doesn't help. As it works harder and harder it swells more and more (goiter).

    I am presently taking both iodine and selenium and am starting to notice a very slight lessening of my out of control hypersensitive-to-everything issues of 20+ years. I have my fingers crossed!!!

    From what I have been reading, the most often recommended dosage for selenium for thyroid issues ranges from 200mcg to 400mcg. I personally cannot take more than 50mcg (half a tablet). Best to start low and go slow. Also, too much selenium can cause problems so you need to be careful with it.

    It is claimed that the type of selenium you take matters. Apparently there are 4 types. The one recommended as "the best" is selenomethionine (I hope I spelled that right :cautious:). The yeast-derived one is supposed to be fine too. My local health food store only had the yeast one so I tried that. Seem to be doing fine with it despite candida issues.

    Just out of curiosity how much salt do you use and what type do you use? Also, do you have either high or low blood pressure?
     
  3. ahmo

    ahmo Senior Member

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    My thyroid stopped working at puberty. I was started on thyroid glandular, but then spent most of my life on synthroid. Only in the past few years, since I stopped gluten, have I understood that I have/had Hashi's. I say had because it's no longer in an active phase. And in all these decades I've never had antibodies tested. But I react badly to iodine, which a segment of Hashi's people do. Switching from synthroid to T3 was the first thing that made a + difference in my ME. The endocrinologist I saw in those early days believed there would be no difference in changing my thyroid rx, felt my temperature imbalance might be best treated with HRT. (the temperature issues were, I believe, eventually corrected w/ B12/folate)

    I'm giving you a bunch of thyroid links that I've found helpful, in no particular order. Dr. Karrazian, Dr K news, was the first person I saw saying that iodine could be a bad thing. Rudy Dragone had excellent info re how to increase dosage and thyroid receptors, maybe not relevant for you. I hope this is not too much information!!! @Gondwanaland is living with active Hashi's, might have some useful input.



    http://advancingthyroidcare.wordpress.com/2010/03/21/three-phases-of-treating-hashimotos/


    https://www.youtube.com/user/TheRLCLabs Several Hypothyroid vids, incl Dragone


    5 Lies About Your Thyroid Disease That You’re Likely to Hear:

    By http://thyroid.about.com/bio/Mary-Shomon-350.htm, About.com Guide Updated May 30, 2012

    http://thyroid.about.com/od/thyroidbasicsthyroid101/a/5lies.htm

    http://www.stopthethyroidmadness.com/rt3-ratio/


    Dr. Izabella Wentz’s website and blog can be found at http://www.thyroidrootcause.org/.

    QUOTE]
    Rudy Dragone, http://www.clarkspharmacyaz.com/health-professionals/

    "Wilson's T3 Thyroid Syndrome"

     Wilson's Thyroid Syndrome' describes a population of patients who have normal thyroid blood tests (TSH/T4), and yet experience symptoms of low thyroid and low daytime oral temperatures. (< 97.8').

     Low average daytime oral temperatures (<97.8)

    ...Long article with protocol...
    [/QUOTE]

    http://drknews.com/iodine-and-hashimotos/

    As I explained in the book, iodine stimulates the activity of the thyroid peroxidase (TPO) enzyme, which triggers thyroid hormone production. This is why so many thyroid supplements contain iodine, even though the thyroid only needs enough iodine to fit on the head of a pin each day in order to perform its duties.

    Supplementing with iodine stimulates the production and activity of TPO. For most people with Hashimoto’s, TPO also happens to be the site of autoimmune attack, and surrounding thyroid tissue is damaged in the process. So everytime TPO production is stimulated, the immune system, which perceives TPO as a foreign invader to be eradicated, responds more aggressively and amps up the attack.

    I simply believe, based on my research and clinical experience, that iodine is an unnecessary risk when managing Hashimoto’s, especially since we have safer and more effective ways to work with a improperly functioning immune system.

    (please see “The effect of iodine restriction on thyroid function in patients with hypothyroidism due to Hashimoto’s thyroiditis” in the studies post).

    In this study subjects with Hashimoto’s were divided into two groups. One group ate a normal diet. The other group was put on a diet that strictly avoided iodine so that they consumed less than 100 mcg per day. Eighty percent of the group who avoided dietary iodine experienced complete remission of their thyroid symptoms!

    Therefore I am asking my Hashimoto’s patients to avoid iodine rich foods, such as seafoods, seaweeds and iodized salt in order to see how this affects clinical outcomes.


    http://drknews.com/some-studies-on-iodine-and-autoimmune-thyroid-disease/

    If you’re interested in some of the research that has been done on iodine and autoimmune thyroid diseases, this post is for you.

    Although adequate iodine consumption is important for thyroid hormone production and iodine deficiency is the most common cause of hypothyroidism worldwide, its supplemental use in autoimmune thyroids is contraindicated. Iodine is the major cofactor and stimulator for thyroid peroxidase (TPO). TPO is the enzyme that is under attack with Hashimoto’s thyroiditis. It appears that increased iodine intake, especially as a supplement, increases the immune attack on the thyroid.(1)

    Although this phenomenon does take place in clinical practice at times, iodine supplementation with autoimmune thyroids does not always lead into thyroid hyperfunction. Rather one observes increased levels of TPO autoantibody levels that multiply dramatically with iodine supplements, and in many instances increased production of thyroid overactive symptoms.

    ...In conclusion, 78.3% of patients with hypothyroidism due to Hashimoto’s thyroiditis regained an euthyroid state iodine restriction alone. Both a low initial serum TSH and a high initial urinary iodine concentration can be predictable factors for a recovery from hypothyroidism due to Hashimoto’s thyroiditis after restricting their iodine intake.(13)


    comments: maca as it is recommended for Hypopyseal-Gonadal malfunction in his book but I gather it has a lot of iodine. I am interested in taking it for hormonal balance

    ...discovered spirulina is very high in natural iodine....Not only does spirulina have iodine but I found some studies saying it activates TH-1 immune cytokines, a double whammy for the TH-1 dominant person.


    http://drknews.com/eating-gluten-increases-need-for-thyroid-hormones/

    http://drknews.com/hashimotos-hypothyroidism-immune-basics/

    A mistake many people make is thinking low antibody levels mean their autoimmunity is not that bad, or that high antibody levels mean it is very bad. This can be true, but the opposite can be true as well. A person with low antibody levels can have terrible Hashimoto’s flare-ups while a person with higher antibody levels can be symptom-free and feel great. This is because the antibodies do not destroy the tissue themselves, they merely paint targets on it. It is up to the immune system to then decide whether it will attack the tissue with a knife or a blow torch. Of course, the most desirable outcome is to produce no antibodies to the tissue, which indicates the Hashimoto’s is in remission. But in the meantime, your symptoms will tell you more about the severity of your Hashimoto’s than your antibody panel.



    Compounds that stimulate TH-1

    (These stimulate TH-1 and dampen TH-2. Avoid if you are TH-1 dominant. If you are TH-2 dominant they may make you feel better.)

    • Astragalus
    • Echinacea
    • Beta-glucan mushroom
    • Maitake mushroom
    • Glycyrrhiza (from licorice)
    • Lemon balm
    Compounds that stimulate TH-2

    (These stimulate TH-2 and dampen TH-1. Avoid if you are TH-2 dominant. If you are TH-1 dominant they may make you feel better.)

    • Caffeine
    • Green tea extract
    • Grape seed extract
    • Pine bark extract
    • White willow bark
    • Lycopene
    • Pycnogenol
    Some people have clear reactions to these compounds. I have known TH-1 dominant people who ate the perfect diet and could not figure out why their autoimmune condition was out of control. Turns out they drank echninacea tea daily. The same goes for TH-2 dominant people and green tea.

    On the other hand, a TH-1 dominant person may feel better using compounds that activate TH-2, and vice versa. Stimulating the weaker TH helps many people restore balance and improve symptoms.

    Also, some people are so immune reactive they react to everything on both lists. Other people find compounds on both lists help them. Another group finds no reaction to the compounds on either list. Although we can identify some basic immune mechanisms, it’s important to remember not everyone’s body “follows the rules,” so pay attention to your symptoms. Your practitioner also may be able to run a lab panel to test for a TH dominance, which is explained more in the thyroid book.
    [/QUOTE]
    Am I TH1 or TH2? http://wellnessalternatives-stl.blogspot.co.uk/2012/01/am-i-th1-or-th2.html
     
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  4. brenda

    brenda Senior Member

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    Hi

    A number of Hashi doctors advise a gluten dairy and sugar free diet to put it into remission. This is what l am doing. My TSH has gone down and l am losing weight. Hair loss has stopped and my skin us no longer dry. Don't have my antibody levels ATM but they were very high.

    Iodine made me hyperthyroid.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Sorry if this was already said but the doctor you want to see is an endocrinologist and you want to get tested for TSH, T3, T4, reverse T3 and T4 and both Hashimoto's antibodies. This should give a clearer picture of what is going on.
     
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  6. ahmo

    ahmo Senior Member

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    I've just posted info re Healthy Gut Summit.
    http://forums.phoenixrising.me/index.php?threads/healthy-gut-summit-online-february-9-16.35275/

    My invitation was from Thyroid pharmacist Isabella Wentz, one of the links I posted above. She refers to Hashimoto's.... Also, her website says:

     
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  7. Gondwanaland

    Gondwanaland Senior Member

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    In theory, enough B1, magnesium, lithium, B6 should balance that.
     
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  8. Gondwanaland

    Gondwanaland Senior Member

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  9. drob31

    drob31 Senior Member

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    One thing to keep in mind is there 10% of people with Hashimoto's are seronegative, meaning they don't produce antibodies that will be detected by a lab test.

    Also, the TH1/TH2 is a bit outdated, especially with the consideration of TH17 and other new variants.

    Also, allot of people that have hypothyroid symptoms don't have any issues with their thyroid, but rather their adrenal glands. High cortisol will cause cell receptor resistance to all hormones, including thyroid hormone, sex hormones and even cortisol itself.
     
  10. ahmo

    ahmo Senior Member

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    @drob31 Yes, that article was actually about just what you mention, beyond TH1,2. Thanks to @Gondwanaland for the new link.
     
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  11. drob31

    drob31 Senior Member

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    Believe it or not I've actually talked to this guy on the phone before. He recommends running a test called the NEI gold which tests urine saliva and blood (I believe). He is interested in the cytokines levels of patients and how to categorize them, since hashimoto's has many flavors.

    Just when you thought autoimmune can't get any more complicated, surprise. There's over 80 autoimmune conditions, possibly 80 more we don't know about, and multiple "flavors" of each one. Great.
     
  12. acrosstheveil

    acrosstheveil Senior Member

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    thanks, i'm going to do some blood testing tomorrow.
     
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  13. jason30

    jason30 Senior Member

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    I also have Hashimoto, TPO are positive. I start soon with the AIP protocol and more Selenium, hopefully this helps because i get exhausted once pollen are in the air (i guess my system make antibodies to the thyriod as well).
     
  14. acrosstheveil

    acrosstheveil Senior Member

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    I just got some labwork results back. They seem normal to me. But my thyroid hurts and is enlarged. Almost feels like someone is choking me when I'm laying down.


    • TSH - 1.750
    • Thyroxine (T4) - 7.1
    • Sedimenation Rate-Westergren - 2
    • C-Reactive Protein, Quant - 0.2
    • Antinuclear Antibodies Direct ( ANA Direct ) - Negative
     
  15. Gondwanaland

    Gondwanaland Senior Member

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    You can't really assess thyroid function from these tests.

    Are you sure it isn't a glottis edema? It could be inflammation, allergy, sensitivity, pre-acidosis, all of which could also be thyroid related. Do you take magnesium?
     
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  16. acrosstheveil

    acrosstheveil Senior Member

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    i'm not really sure of anything any more...lol. I understand I probably need more tests but that's all my current doctor knew to do.

    I do take lots of chelated magensium.
     
  17. drob31

    drob31 Senior Member

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    How about getting:

    Anti TPO-antibodies
    TSH receptor antibodies
    Thyrogobulin antibodies
    Reverse T3
    Free T3
    Cortisol total/free
    CGB


    Thyroid ultrasound
    Thyroid biopsy
     
  18. acrosstheveil

    acrosstheveil Senior Member

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    thanks drob.

    my doctor really doesn't know much about the thyroid, thats why he wants me to see an endo. So hopefully, I can get all that done asap after seeing the endo.
     
  19. acrosstheveil

    acrosstheveil Senior Member

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    i have some leftover levothyroxine. Would it be a good idea to take a little bit in the meantime?
     
  20. drob31

    drob31 Senior Member

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    What is the reference range for your T4?
     

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