T3 -- Can I say WOW! ?

Discussion in 'Fibromyalgia Main Forum' started by Juloo, Dec 28, 2005.

  1. Juloo

    Juloo Member

    I'm being treated through the FFC. I have been on 10 mcg of T3 for less than a week. Already, my hands are not cold anymore! Then I stepped on the scale today, and I realized I had lost five pounds.

    I do have to keep up the cortisol as well for adrenal exhaustion, but I am having no problems with either of these meds.

    It's so surprising what just a *little* of this stuff will do!
  2. minimonkey

    minimonkey New Member

    wow, what great news! I'm glad you found something that is working for you.
  3. elsa

    elsa New Member

    My diffuse hair loss was also one of the first bad symptoms to ease up. Warmer hands and less bad reaction to cold temps showed up soon too. I am still climbing in dose. Haven't find my best level yet .... body temp still too far below normal but we are getting there.

    I'm glad it's making such a good difference for you. I had to deal with some anger issues over the refusal of many docs to treat this .... It is relatively easy to do and it makes such a hugh difference in our lives, yet majority of docs remain ignorant of it's importance in CFS/FMS.

    Things should keep improving for you ... The closer I get to my correct dose the less EDS meds I need to take.

    Elsa
  4. pepper

    pepper New Member

    You are taking exactly what I have been telling my doctor for years exactly what I need. He finally sent me to a new endo but I am not sure what she will do after she gets my blood/urine test results.

    I am sure that cortisol and bio-identical T3 would make a difference for me. If I could only find someone to prescribe it.

    I am very happy that it has made such a difference for you, Juloo. Makes me think that it might be worth a trip down to the FFC.

    I hope that you continue to experience improvement.
    Pepper
  5. jfrustrated

    jfrustrated New Member


    Congratulations - it's an effect I'm trying to work up to. Can you tell me:

    1. what level of cortisol are you on?
    2.do you know your cortisol levels?
    3. did you have to take the cortisol for a while before taking the T3?
    4. are you taking any natural adrenal extracts as well?

    I have had to come of T3 because my adrenals are too weak even though I am taking hydrocortosine and have been preparing for the T3 for months. I would be very interested in any details or your story. Have you posted them elsewhere?

    Hope it keeps working.
    [This Message was Edited on 12/28/2005]
  6. Shannonsparkles

    Shannonsparkles New Member

    I'm SO glad you are feeling better! Can't wait to see how you feel by next week. :)
    (((((hugs!))))) Shannon
  7. kch64

    kch64 New Member


    Great. I'm so glad.
  8. elsa

    elsa New Member

    Questions weren't directed to me but I may be able to answer them ... give you more of a "data base".

    I too take cortisol .... but mine was not included in the T3 capsule. I take 10mgs compounded cortisol SR about 30 minutes to an hour after T3.

    At time of testing my cortisol levels were less then half what they should be for that time of day ... so yes to the very common CFS/FM low cortisol (especially AM) problem.

    I also take DHEA/pregnenolone in adrenal support plus panthothenic acid and really good whole food b-complex vitamins.

    I saw your dr. appt update .... did I understand correctly that both hormones were in one capsule? It seems to me that although cortisol needs to support T3, if taken at the exact same time overstimulation can occur. I would not want to take both of mine together.

    I have read alot on this as I'm sure you have. Teitlebaum goes into great detail about cortisol and T3 .... I don't recall reading that one should take cortisol prior to T3 treatment. I thought that was interesting approach of your doctor's. Great thing about this board ... always learning.

    Elsa
  9. Juloo

    Juloo Member

    1. What level of cortisol are you on?

    Currently, the capsules I have are 5 mg to take once a day unless sick, then double for three days. The cortisol capsule is separate from the thyroid capsule.

    2. Do you know your cortisol levels?

    A trick question! I *have* my cortisol levels (both by blood testing at FFC and by saliva testing elsewhere), but I do not *remember* them -- I think I left my test results on my desk at work. If so, I won't have my hands on them until next week. Basically, by saliva testing, I am just about flatlined. I don't remember the blood testing results, but they were considered low as well.

    3. Did you have to take the cortisol for a while before taking the T3?

    I have only just started the cortisol, but I have been on adrenal support and licorice supplements (the alternative method) plus ACE drops for a couple of years.

    4. Are you taking any natural adrenal extracts as well?

    I cut back to no supplements before I started w/the FFC to get baseline results. I am now phasing in all my FFC prescriptions and supplements, and I expect I will also go back to several of the alternative support supplements as well. For the adrenals, this would be Adreset (by Metagenics).

    I have also taken Mil Adregen (by Miller) and Cytozyme-AD (by Biotics Research Corp.), all depending on which alternative practitioner I was seeing. The Adreset is support only, the others include natural adrenal extracts. I am also on pregnenolone and DHEA. I've been on pregnenolone or 7-Keto in the past, but this is the first time I'm trying DHEA.

    As for the issue of treating adrenal disfunction before T3, the doctor didn't go into detail on it, but the instruction page that came with the T3, the very first line is:

    "Contraindications: In patients with diagnosed but uncorrected adrenal cortical insufficiency....." (etc.)

    Another thing, the sheet suggests taking the T3 first thing in the morning, but I really cannot wait long after I get up to eat, so I take my cortisol w/breakfast, then half-way through the morning, I take the T3.

    [This Message was Edited on 12/29/2005]
  10. TwinMa

    TwinMa New Member

    I've been taking T3, Cortef and Pregnenolone for two months, and I feel much better.

    I started off with 5 mcg T3 for 10 days, then 10 mcg for 10 days, then 15 mcg for 10 days, then 25 mcg for 30 days. I'm now taking 37.5 mcg T3 and feel like this is the dose I will stick with.

    I also take 25 mg Pregnenolone and 20 mg Cortef (hydrocortisone). I started all three at the same time.

    I take my T3 and Pregnenolone when I get up to pee at 4am. That way it is on an empty stomach and well away from calcium. I called ITC compounding pharmacy where the T3 is made and they said it is fine to take T3 and pregnenolone together.

    I take 10 mg Cortef after my breakfast shake and another 10 mg at noon with lunch.

    I am feeling SOOO much better. I have more energy and less pain. Fewer flares, too. I don't wake up feeling like a truck hit me. I'm sure these three things are a part of that. I'm also sure that other changes I've made are also helping me--probiotics, eating the shake, eating better in general, cutting down on prescription meds that were doing me no good, etc.

    Juloo, I'm so glad you are feeling better. It's great to go in the right direction, isn't it?!

    Katy
    [This Message was Edited on 01/08/2006]
  11. jfrustrated

    jfrustrated New Member


    This is a great thread and thanks to all those who have added info. I am still waiting and deciding whether to go back on hydorcortisone or try adrenal extracts - the next few weeks will tell. However, this thread certainly provides hope.

    To elsa: yes, both hormones were in one cap. I had to take it early in the morning, and the compound was a slow release formula and the T3 and hydro. released at different rates. Too technical for me to understand. Believe me, there was no over stimulation involved, but if there was, I slept through it.

    To Juloo: Thanks for your detailed answer. Do not worry about test results as your response gave me the info I needed: do you think it was worthwhile working your way through the natural support meds. before going on the cortisol - or is it working so much better than any of them did? My cortisol tests results were very low, about1/4 of what the doc. wants them to be - one measurement was 0. (midafternoon)

    To TwinMa: in my understanding, cortisol and hydorcortisone are basically the same.

  12. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Pepper,

    I'm doing very well w/ the natural route, taking the real glands in combo formulas w/ adrenals/thyroid and a bit of others, plus separate liver supplements. I'm getting the same results w/out the risk of side effects, like osteoporosis, heart problems, etc. I actually had a doctor perscribe Cortef, but I wouldn't take it.

    My body temp. is coming back up, I hardly get those terrible chills. And as you well know, it's freakin cold in Ottawa this time of year.

    So why wait for a doctor to control your regiment, why not try the natural route?


    jfrustrated,

    Since you are pondering, I'll put in an extra plug for going natural.

    Congrats to you, Juloo, or anyone who the rx route works for. But many just have terrible side effects, and serious complications, when they happen are sometimes irreversible. The drug route almost always goes really bad for me. I'm sick of taking years to gain back what I'd gained w/ the natural route, when I try another damn drug that backfires.

    Stormy stayed natural, and she is pretty much well again. I can't help but feel I might be where she is if I'd have stuck w/ my natural regiments.


    jeanne
  13. jane32

    jane32 New Member

    Are you saying your diffuse hair loss happened before taking T3-when you were hypothyroid? Or after taking the T3 it happened?

    I had a very bad episode of hair loss four years ago but it all grew back except at the front corners of my hairline-I am still losing it there too.
  14. Juloo

    Juloo Member

    Strange as it may seem, during most of the year (I'm in Florida) heat is a terrible stressor for me. All my life I've looked forward to the 'winter' (the Florida winter, that is).

    Now I'm the first person to turn the heat on when before -- five or six years ago -- I'd go most of the cold months without any form of extra heat. But now I go from air conditioning to extra heat in a week. My hands and feet are blocks of ice (and whenever my husband teases me about turning on the heat, I treat him to a nice, cold shock on his nice, warm neck!).

    I can say that I've not noticed the almost immediate effect of having my hands feel warmer with the other products I've used. A very low dose of T3 did it in a couple of days. I'm not sure I would have noticed a difference so fast if it hadn't been winter, although the weight drop might have tipped me off.

    But anyway, all that would be the thyroid med effect. I really have no way to figure out how the cortisol is working vs. supplements/extracts. I'm just trying to keep up with taking everything so I can stay on the T3 without any side effects.
    [This Message was Edited on 12/30/2005]
  15. TwinMa

    TwinMa New Member

    My biggest concern with the T3 and Cortef (hydrocortisone) is that it is a temporary band-aid fix.

    I feel okay about taking the T3 for hypothyroid condition.

    My worry is the Cortef. Cortef is hydrocortisone and is a corticosteroid. I know the Cortef is there to help with the low cortisol levels from adrenal insufficiency. However, I am concerned that if I take away the Cortef, I will crash and be worse off than when I started.

    One of the "side effects" listed for Cortef is a "false sense of well-being". I have had a sense of well-being. Is this false? What does "false sense of well-being" mean anyway?

    I have had two doctors (PCPs) tell me that I should not be on corticosteroids (Cortef) for more than short term because they have nasty long term effects. When I asked how long is "short term" my doc said definitely not more than a year. I'm currently taking 20 mg Cortef per day.

    I have also read that if you take steroids (Cortef), your adrenals will become dependent on them and it will be even harder to get them working again (even though they weren't working very well in the first place).

    If I continue with this route, will I have to take Cortef for the rest of my life? Have others had bad long or short term side effects from Cortef? Are there more natural ways to kick start the adrenals?

    Katy
  16. sdown

    sdown New Member

    Does anyone have recurring infections since they have been on cortef? I know that's one of the negatives of being on steroid medication is that you are more prone to infections. Im always dehydrated. Some days worse than others. I eat alot of soups high in sodium and use sea salt. Any advice from anyone? Doc said to have a high sodium diet when you have adrenal gland exhaustion. Im on 25 mg a day of cortef and 25 mg a day of DHEA. My doc said I will probably be on this dosage for life. I can eventually try to reduce my dosage slowly but if I experience more exhaustion then it means Im not ready to cut back. The doc said my adrenals took quite a beating from the mercury poisoning I was exposed to from my amalgam fillings. I have had my fillings removed but the damage is done. Also the doc said you are replenishing your body with the cortisone it is lacking so your body does not become dependent on it.
  17. sdown

    sdown New Member

    What is T3? Is it a supplement or a drug? Thanks.
  18. Juloo

    Juloo Member

    The things I mentioned before -- glandular extracts, adrenal support supplementation, etc. -- were all part of the alternative practitioner's attempt to get my adrenals up and running again.

    For three years, on and off, I worked w/the Clymer clinic in Pennsylvania, and I credit them with helping quite a lot. First, they BELIEVED me about the chronic fatigue. Second, they gave me some type of proof (in the form of saliva cortisol levels and DHEA level) and a framework in their theory that extrapolates from Hans Selye's work on human adaptation to stress.

    I *knew* that I would test high on cortisol when I first tested. My body was under so much stress that the HPA axis was on severe overdrive. My body was churning out cortisol like crazy even though it really was not required to function at 'high' anymore. And I had burned through nearly all my store of DHEA as well.

    Among the treatments, one of the most important for me at that point was using the supplement Seriphos, which is supposed to 'turn off' the overdrive and conserve the cortisol, and thus the DHEA (cortisol building block) as well. The additional adrenal supplements (and REST) are geared to rebuilding the DHEA and cortisol.

    Unfortunately, the rest I was able to get was not really sufficient, and I had additional stressors down the road, and gradually, having basically run short on DHEA, I ran short on cortisol as well.

    As for the idea of supplementing w/cortisol to support adrenals and whether or not you can ever go off, my reading has found support for *low dose* cortisol supplementation -- enough to turn off your body's adrenals to let them rest, but also as an opportunity to let your body find its set-point that will naturally re-trigger natural cortisol production. Anyone interested can look for information by Dr. William Jeffries, a retired endocrinologist. Even Teitelbaum cites him.

    [This Message was Edited on 12/30/2005]
  19. Juloo

    Juloo Member

    T3 is one of the thyroid hormones. It's whole name is "Triiodothyronine". Technically, bioidentical T3 is not a med, since it is something your body can produce on its own.

    My bottle is labelled "Triodo-L-Thyronine Sod. S.R.(W)". It is a compounded product. Perhaps the "sod." is sodium, and the "S.R." is sustained release? Don't have a clue about the "(W)".
    [This Message was Edited on 12/30/2005]
  20. pawprints

    pawprints New Member

    Just a quick question...do you feel the FFC is doing similiar work to the Clymer Clinic? Did they only have the resources to get you to a certain point and then you needed more help?

    Thanks for your answer.
    Shana