The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Cold hands, T3, Cortisol, and Keflex

Discussion in 'General ME/CFS Discussion' started by drob31, Nov 14, 2014.

  1. drob31

    drob31 Senior Member

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    This is sort of a mixed bag of things I wanted to get some feedback on:

    Since my symptoms mainly appeared to be hypothyroid, I sought out a doctor who prescribed slow release t3. I was able to acquire this medication and am currently on 20 mcg BID. Before taking it I had days where the brain fog was really strong, and other days where it would go away.

    My saliva cortisol tests have always been high in the afternoon, and sometimes in the morning.

    My blood serum free cortisol went from .08 before t3, to 6.4 after, ref: 0.6 - 3.4. Needless to say, either the t3 woke the HPA-axis up, or I'm just seeing the wildly different results from day to day. Alternatively blood serum is simply not an accurate marker for cortisol levels.

    In any case, the t3 has increased energy and decreased hypo symptoms, but hypo symptoms still persist. I went from a free t3 of 2.4 to 3.7, and my rt3 went from 20 to 16. If this were true hypothyroidism or even adrenal dysfunction with high cortisol, I would expect that most symptoms would disappear since my blood levels are perfect, but I realize that it's impossible to know what's making it into the cells.

    One thing that started to occur after using the T3, however was cold hands after eating. It's appears to be a secondary Raynauld's phenomena. My hands will be warm and normal, but if I eat or drink anything, they get ice cold. The odd part is this doesn't always occur. I'm guessing this could be related to autonomic dysfunction, but it got very noticeable after starting the t3 and using higher doses.

    Fast forward a few weeks, and I developed an infection in my naval (umbilicus). This infection is reoccurring every few years. Knowing amoxicillin never stops it, and I don't want floxie ABX, I called the doctor and he wrote me a script for Keflex. I started taking it, and the first few days I began experiencing a big of lethargy. It was a different type of fatigue. I was thinking it was almost like a herx reaction or a side effect, however after a few days these feeling went away, and I felt a little more clear minded.

    I'm not sure what indicates that you're back to normal, but I'm guessing it would be something along the lines of feeling like your old self again. I still don't feel that way, and still feel like I have a bit of HPA-axis dysfunction. Since I know HPA-axis dysfunction doesn't just manifest spontaneously, or persist forever without a cause, I believe there a microbe/virus/bacteria that is causing it distress. I feel there is an immune related component so I'm getting some cytokine panels done. Perhaps the antibiotics are having an effect on it.

    Do you think it's possible a bacterial or fungal infection in your naval (low grade, persisting for 6-9 months) could cause these issues or is it simply a co-infection, the result of a weakened or sleepy immune system?

    Also, my symptoms began 1.5 months post knee surgery. I received an ACL allograft (cadaver Achilles tendon). Is it possible this tissue was infection with a mysterious CFS related microbe/lyme/etc? I know the tissue donors are supposedly screened, but how do you screen for something that is unknown?


    EDIT: I also forgot to mentioned the one test I had come up positive was for candida antibodies. My candida IgA antibodies were 21 (ref 1-10). I know candida is controversial and elusive, but I started treating this with diflucan. So I should mentioned I'm on that as well.

    I'm compound hetero MTHFR
    Positive for pyroluria (13.4) ref-1-9
    Candida IgA antibodies (21) ref 1-10
    Low normal magnesium RBC (4.8) ref 4.5-6.8
     
    Last edited: Nov 14, 2014
  2. BadBadBear

    BadBadBear Senior Member

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    Rocky Mountains
    Have you had your free T4 checked lately? Did it plummet? I was on T3 for a long time with some improvement, but T4 was really low. Then convinced my doc to add a low dose of T4 and now I am feeling good lately.

    Apparently T4 is involved in B2 (?) transport and methylation... After I started T4, I don't tolerate MB12 at all anymore. But T4 helps me more than MB12. I do still take methylfolate.

    FWIW I take 18 mcg T3 daily, split into 4 doses. I take 12 mcg T4.

    I have not checked my serum cortisol for a while... My integrative MD said that working carefully on thyroid issues would help the adrenals, though, and that pushing the thyroid too hard would crash them.
     
  3. drob31

    drob31 Senior Member

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    My free T4 went from 1.67 (ref: 1.1-1.7) to 1.11. And that's with 40 mcg a day of t3. Although being compounded, it's possible I'm not absorbing all of it.

    My integrative doc likes to treat the thyroid to fix everything else. Obviously if there is something else the an elusive CFS microbe causing issues, that won't work. I have read about CFS docs treating CFS with t3 though.


    I wonder if a lower dose of t3, regular cytomel dosed 4x a day would work better for me versus the slow release kind.


    I'm also working with a functional doc to examine the immune system.
     
  4. BadBadBear

    BadBadBear Senior Member

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    It is a pain taking cytomel 4x a day, but it definitely works for me. It might be worth a try, though you might need a lower dose... I cannot tolerate any more than 4 mcg in a single dose.

    I think my viral issues have gotten better as my body temp has risen. When I started T4 it brought my temp up to 98-ish for the first time in ages, and I had viral symptoms for about a month (T3 alone did not bring up my temp).

    The viral issues are finally settling down. My doc had me take 50k IU of D for a short course and that seemed to help with the sore throat, swollen glands, etc.
     
  5. drob31

    drob31 Senior Member

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    Ok, I think I'll get some cytomel to experiement. I'm thinking about jumping my dose to 80 mcg to see if I can go hyper. If I'm making to much cortisol, than that shouldn't be a concern in regards to using t3.

    For me, my RT3 was higher when I was making more T4, which makes me thinking supplementing with it will raise my RT3 back up.

    Which viral issues did you have? HH6 reactivaion?
     
  6. Gondwanaland

    Gondwanaland Senior Member

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    Please apologise my ignorance, but isn't it logical that your thyroid would produce less T4 if you are supplementing T3?
     
  7. BadBadBear

    BadBadBear Senior Member

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    Whhhhhhy would you want to go hyper? It's freaking miserable. Not to mention, bad for your heart?
     
  8. BadBadBear

    BadBadBear Senior Member

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    Yes, it does down-regulate T4. I went well below range on T4. Some people stay in range and do OK.

    There are studies showing that low T4 cause functional riboflavin deficiency, since T4 is directly involved in riboflavin transport. I had hoped T4 would help me and I had to pretty much beg my doc for it, and it has helped me more than I even hoped.

    FWIW, my T4 production before starting T3 was fine. I was energetically broken, though, and needed T3 supplemented.
     
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  9. Gondwanaland

    Gondwanaland Senior Member

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    That is great info re B2! I am on T4 only and started liver supplementation which improved my sleep and now I have energy again when I wake up in the morning. I was thinking T4 wasn't helping at all, but the liver wasn't doing its part in converting T4 to T3.
     
  10. drob31

    drob31 Senior Member

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    Yeah, it makes sense to me.
     
  11. drob31

    drob31 Senior Member

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    I don't want to, but I have no idea how far away I am from an optimal dose, or even if an optimal dose will fix things.

    Personally I think there is allot going on, like the gut being out of whack, which causes neurotransmitters to be low, and some mysterious microbe, and perhaps immune system dysregulation.
     
  12. Gondwanaland

    Gondwanaland Senior Member

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    I think you should focus on gut and liver now. This will help both thyroid and adrenals.
     
    BadBadBear likes this.
  13. drob31

    drob31 Senior Member

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    How do you recommend supporting the liver?

    My gut is currently being thrashed by antibiotics, but I plan to repair that with the best probiotic; prescript-assist, the autoimmune diet, resistant starch, and glutamine.
     
  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Because atrial fibrillation is awesome/under-rated? [​IMG]
     
    Last edited: Nov 15, 2014
    Gondwanaland and BadBadBear like this.
  15. Gondwanaland

    Gondwanaland Senior Member

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    Abx deplete magnesium. They are the cause for you feeling bad right now. Find a form of magnesium that makes you feel better and relieved. After you have replenished magnesium, look into the rest.
     

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