Invest in ME Conference 12: First Class in Every Way
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Thyroid Resistance treatment/latter stages of hypothyroidism Please HELP

Discussion in 'General ME/CFS Discussion' started by mustardseed1, May 12, 2016.

  1. mustardseed1

    mustardseed1

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    Hey guys, I'm not sure if I'm posting this in the right spot. Please let me know if I should post elsewhere.
    To anybody who can help:

    Ok, I have MAJOR issues going on with my thyroid. LONG story short-I have several autoimmune diseases and have seen tons of doctors, endocrinologists, specialists, etc and nobody can seem to tell me what's going on. I have had heavy metal chelations, mold chelations, live organic lifestyle, no gluten, no dairy, no soy, low sugar, I do coffee enemas, take all the correct supplements, done countless hours of research, tried every. single. medication for hypothyroidism there is. Literally. Turns out-I am Thyroid Resistant. I don't have the genetic TR and my labs are always fairly normal. I don't have high reverse T3-covered that. I've had a thyroid US-normal of course. I do have Hashimoto's because I can tell you the exact date it hit me and I exhibited every basic symptom of hashi's there is. From my thyroid swelling until i couldn't hardly swallow, hoarsness, hair loss, extreme wght gain, severe coldness, etc etc. It runs on BOTH sides of my family. My mom, gmother, aunt, etc. But my problem with treating my hypothyroidism is getting severe. It has affected my adrenals, blood sugar, and my cholesteral is sky high. I also have a super strong ammonia smell to my urine. I have been checked and checked and checked for parasites, mold, bacteria, heavy metals, etc. I'm starting to think I have something wrong with my mitochondria because when i try t4 or t3 meds it's like drinking water. NOTHING. And i mean nothing happens. I even tried the Thyroid resistant treatment of high dose compounded T3 (cytomel made me sicker-maybe the talc?) and it did nothing but made me lose muscle. I even went up to 230mcg T3 and it didn't help. I don't know how that;s even possible. But I'm here because I'm truly starting to worry that I might not make it through this if I don't find help. I have a 4 year old daughter and I'm trying my best to find help. I feel like i'm in the latter stages of hypothyroidism. I have started to have chest pains/heart flutters/racing and my eyes stay swollen, esp the hood of my eyes, and temp drops to 95 degrees. My mouth has started to turn down and basically my appearance is changing. I have read a lot of books including Dr. Mark Starr's Hypothyroidism type II. The specialists that I have been too do not know what else to try since the high dose t3 didnt' work. I am speaking to my PCP about the low dose naltrexone but since i think it is my last chance i'm almost afraid to start due to the fact that it might not work. If ANYONE can offer just a little help, I would greatly appreciate it. If you could recommend any type of treatment, doctors, even research clinics or websites that would really help. I stay on the internet researching things and I really am grateful to sites like STTM and hypothyroid mom, chris kresser, and this site, etc because I probably wouldn't be where I am right now. I hope someone sees this. Thanks in advance.
     
    Last edited: May 12, 2016
  2. barbc56

    barbc56 Senior Member

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    Are you seeing an endocrinologist? Sorry you are going through this.

    Good luck.
     
  3. mustardseed1

    mustardseed1

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    Hi Barb, thanks for the reply:) Yes, i've seen about 4 endos and some other specialists and nobody knows why the high dose t3 doesn't work. They don't know of any other treatment and the last resort is the LDN.
     
  4. barbc56

    barbc56 Senior Member

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    Has to be frustrating. Let us know how things progress.
     
  5. Sally's

    Sally's

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    Hi, I am a Kiwi who has suffered chronic fatigue symptoms since my daughter was born 24 years ago. They have worsened with menopause. I thought I had found my answer when my B 12 was found low, but supplementation didn't help. Then my thyroid functions changed to abnormal, with thyroid antibodies. I started on levothyroxine a year ago and my symptoms got worse, more brain fog, more fatigue, insomnia and more joint pain. These can be side effects of levothyroxine for some patients. After researching on the net I discovered that some genetic deficiency of deiodinase enzymes exists in some people, and can be turned on by pregnancy or viral illness. My Mum developed ME in her fifties before me, so this seemed a possibility. This causes inadequate conversion of thyroxine into the active hormone T3, blood thyroid functions can appear normal. Porcine thyroid extract being a good treatment. I hunted for a GP who would prescribe this and started six weeks ago. My brain fog cleared immediately, my joints stopped aching within a week and my energy levels are improving in leaps and bounds. I wonder how many people have this condition. (I am only guessing that this is my problem as I haven't had the gene test). There is a genetic test for these genes now available in UK (google deiodinase genetic test). I don't know if this is any help to you, but am keen to put it out there in case it helps anyone. It's a horrible place to be in when you feel that you are missing something important biochemically and get your hopes up with a new suggested treatment and then nothing changes. Good luck
     
  6. fedupwithhealth

    fedupwithhealth

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    Hi, I'm having difficulties with my thyroid health and have found a lot of support, advice and knowledge on the health unlocked thyroid forum. Many people on there are so knowledgeable and have experienced a wide range of thyroid issues. I'm sure if you post there too someone will be able to help you. :)
     
  7. mustardseed1

    mustardseed1

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    Hey Kiwi, I thought i replied to your post last week but it might not have uploaded. Thanks for the info! that's so interesteing. I might have to order that test. But then again-I tried porcine thyroid treatment but it didn't work either. I'm still hopeful, but things are getting slim...
     
  8. mustardseed1

    mustardseed1

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    Thank u! Yes i'm going to upload this post there. Maybe someone can help:)
     
  9. rwac

    rwac Senior Member

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    Have you tried dosing smaller doses of T3 frequently, many times a day? It helps a lot, and my dosage of thyroid dropped by a factor of 10.
     
    Rlman likes this.
  10. u&iraok

    u&iraok Senior Member

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    I hate to recommend something, because I'm not a doctor and I don't know your 'case' and I don't want something to hurt you but since you're desperate I don't want to ignore you. You may want to check out Standard Process PMG for thyroid. The PMGs are like a blueprint or template for a gland/organ that allows the gland/organ to rebuild itself. You can get them from Amazon. They helped me where regular glandulars could only go so far.

    Thytrophin PMG
    Symplex F


    https://www.standardprocess.com/Sta.../Information-Sheets/PMG-Information-Sheet.pdf
     
  11. mustardseed1

    mustardseed1

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    Thanks for the recommendations! I ordered the Thytrophin pmg. I will research the symplex f tomorrow. Hopefully it helps:)
     
    u&iraok likes this.
  12. caledonia

    caledonia

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    How did you check for heavy metals? Did you use Andrew Cutler's recommendation to do a hair metals and minerals test and then interpret it with his counting rules? The reason for this is the mercury goes into the tissues and brain and doesn't necessarily show up on blood and urine tests, even if provoked. However, they will show their presence by deranged mineral transport.

    Do you currently have or have you ever had mercury fillings? Did your mother have them while she was pregnant with you?

    I had autoimmune thyroiditis for 13 years and was on Armour Thyroid. I say "had" because a year and a half after I got my last mercury filling out, my thyroiditis cleared and I am no longer on medication. That was two years ago. All my labs are still looking normal.

    Also check out Ben Lynch's video on MTHFR and Thyroid. Some methylation supplementation might be helpful. I'm also doing that and started that around the time I got my last filling out.

    Also this is something one of my naturopaths did years ago, it did seem to bring my antibodies down significantly - I did high dose vitamin C to "clean off" the thyroid receptors from bromine, chlorine, and fluoride and also did some low level iodine supplementation. Bromine is in bread in the US and the other two are in the water and they block iodine from getting into the thyroid.

    I have a link to Cutler's info in my signature link.
     
    u&iraok likes this.
  13. mustardseed1

    mustardseed1

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    Wow! That's awesome!!! I haven't heard of many ppl reversing their hashis. Wish that was me:) lol. Yeah I was checked for metals and they were slightly above avg. I went thru andy's protocol and it seemed to help some. I don't have metal fillings but my mom did. I will def check out Ben Lynch. I do have some methylation issues. I have lysosomal vit C but didn't really use it because it's made from soy. Did u do a certain type of Vit C?? Was it IV? I would def like to try that out if u have more info on it. Thanks!!
     
  14. mustardseed1

    mustardseed1

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    I actually started t3 with the Wilson protocol which starts at a lower dose. It didn't work unfortunately:(
     
  15. rwac

    rwac Senior Member

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    Hmm, I ended up taking about 1mcg every hour or so. You might need to eat frequently for this to work.
     
  16. caledonia

    caledonia

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    I was using Bioenergy C (vitamin C buffered with ribose so you can take large amounts).

    http://longevity-international.myshopify.com/products/bio-enr-gy-c?variant=9149621827

    http://clinic.easy-immune-health.com/product/longevity-plus-bioenergy-vitamin-c/

    There might be other places to get it.
     
  17. u&iraok

    u&iraok Senior Member

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    Caledonia, are you for getting every single filling out? I see that Dr. Cutler seems to think so? I had two and got one out improperly and have one left. I'm debating the benefits vs the cons of getting that one out. I'm afraid that even getting it properly taken out I will have problems but leaving it in knowing that mercury is leaking out little-by-little over the years is a bummer.

    Very interesting, I did not know that. I think I've already done that with the C but what do you consider 'high dose' and for how long did you do it?
     
  18. caledonia

    caledonia

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    Yes, you should get it taken out when you feel ready. I didn't see any gains until after my last one came out. Cutler says the same. Cutler has a protocol for when you get fillings taken out, to help with any mercury released. Vitamin C and so forth. So between that and a knowledgeable dentist, it should go better than the last time.

    I think I was doing a total of one teaspoon per day of the Bioenergy C. So 1/4 teaspoon four times a day. So that would be about 1000mg per day. How long - I think about a 6 months to a year for that purpose.
     
    u&iraok likes this.
  19. drob31

    drob31 Senior Member

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    Your adrenals can make you hypo without any issues with your thyroid.

    This is what i'm experiencing, currently. High cortisol will cause cellular thyroid receptors to resist thyroid hormone. Low cortisol will do the same, but in that case it's because the cells need cortisol to access thyroid hormone. Cortisol can't be too high or too low especially if you have TR mutations, you'll be very sensitive to the fluctuations in cortisol. The thing is, there's so many things to check from your end, and even then you have to do the right test or multiple kinds of tests:

    Lyme (igenix)
    23andme genetics (research them)
    Food sensitivities, biotek foodstats igg
    Autoimmune panel
    EBV, etc
     
    u&iraok likes this.
  20. Rlman

    Rlman Senior Member

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    on another forum one person mentioned that inflammation can prevent t3 enter cells. do you have any root canals? some people report getting better when removing them and also any cavitations. but special dentist needed for that since most don't know how to extract teeth properly to prevent cavitations. one lady said her ANA normalized after removing root canal. also there is a protocol with antibiotics that helps some people with autoimmune illnesses. are your hashimotos antibodies positive? anti-tpo, anti-tga.
     

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