Results from those taking T3 ?

Discussion in 'Fibromyalgia Main Forum' started by intrigue, Oct 30, 2005.

  1. intrigue

    intrigue New Member

    I am looking for input from people taking T3 thyroid. Particuarly those whose T4 and Tsh numbers are normal, but have way more Reverse T3 then T3.

    I understand many FFC'ers are given this diagnosis and prescription. I also understand this is a bit controversial.

    So, how long have you been taking it? And with what results? Are you taking other hormones (Testosterone, Cortisol etc..)

    Thanks!
  2. ldbgcoleman

    ldbgcoleman New Member

    I have been taking it since May and I am doing great. I was retested and my hormane levels had gone to normal so I am staying on the dose I have. I am losing weight more easily, no side effects. Why is it controversial??? I think it should be controversial that women are told there Thyroids are normal when they are not converting T4 to Free T3. Drs have alot to be ashamed of! Hope this response helps! Lynn
  3. intrigue

    intrigue New Member

    I agree. I've gotten so tired of regular doctors looking at me like i'm crazy. :) I am 31 years old, and I can't tell you how many times over the last two years I've heard a doctor say "Well .... at *your* age ... blah blah"

    As far as the controversy, i've read studies on both sides concerning reverse T3. I never believe everything I read. Though, I am always cautious about taking new medications. Don't want to make things worse... :) Obviously, I wouldn't be taking it if I believed it would harm me.

    Its always uplifting to hear from people who have been doing this for awhile and are reaping the benefits.

    I do feel a little crazy taking all these pills day after day.

    -Ellen
  4. elsa

    elsa New Member



    Not a patient, but my doctor is following a similar protocol. My TSH was fine with Free T4 also fine, but Free T3 was right around low normal. My rT3 was pushing laughable, making a large part of my available T3 .. well, unavailable.

    My doctor is more like the by-gone days using the blood work as a resource or tool only ... not the end all in treating me. My symptoms are given equal if not more weight in his decision process.

    Keep in mind that the reference ranges are hugh. Many also do not discern between ages ... meaning a 20 year old can be lumped in with an 80 year old. The readings may not reflect what is really going on.

    I use only bio-identical compounded HR and am improving. I am not at my optimal dose of T3 yet ... but I did notice a positive difference almost immediately. More energy, relying less on my EDS mediaction and much clearer thinking.

    What I was thrilled to see immediately (like day 3) was a hugh decrease in my diffuse hair loss. I was not looking like a bald person but I was still loosing way too much hair at shampoos, etc. Overall, it is a great treatment plan for me.

    I also have testosterone and Growth Harmone deficits that are out of range by anyone's standards. Reference Ranges (for the most part) are established by the lab that ran the tests ... not a universal code established by endocrinologists, so there are a lot of variences out there. ** Key here is "for the most part" **

    My testosterone was : Total serum 8 Ref. Range 15 - 70
    Free Testosterone : 0.2 Ref. Range .5 - 1.8
    % of Free Testosterone : 0.25 Ref. Range 0.5 - 2.3

    As you can see, my testosterone levels are laughable ... The most important numbers to watch are Free Test. and % of FT.

    My DHEA-Sulfate : 67 Ref. Range 350 - 430
    Pregnenolone should be for me around 200 ... mine = 49

    My IGF-1 is about 1/4 of what my doctor feels is needed.

    I mention all three of these together as my research shows that there is a positive corralation between DHEA-S and IGF-1. Also, low Testosterone can be an indication of adrenal function and hypoputuitarism. DHEA-S is strong indicator of adrenal disfunction.

    At the moment I am on injectable testosterone 1xwk, GH injection 1xd at bedtime and DHEA/Pregnenolone supplementation.

    I also take compounded cortisol for a limited time as a support for my obviously worn out adrenal gland. My cortisol at time of testing was 5.6 ref. range 5 - 21. My doctor would like to see it around 14. Not looking good and at best listed as very low normal.

    Back to the thyroid ... rT3 should not be more then 145 and mine - if memory serves - was 177. I am taking the compounded T3 because, although my fT3 was not too bad, for some reason I am not getting the full benefit of fT3 that I am converting from fT4.

    A large amount of what I am making is ending up in the rT3 pile, leaving me without the juice I need and creating my hypothyroidism symptoms.

    Also, although we are not addressing it, one range has my fT4 "fine", but my doctor wants to think about it as other ranges he is comfortable with has mine as low. (Mine = 1.3 ref. range = 4.5 - 12.0) From one source, "T4 is decreased in hypothyroidism" ... we'll keep an eye on this one.

    Other readings pretty good ...

    That shows me that indeed my HPA axis is not functioning like a healthy person and all the research experts who tout this disfunctioning axis as a hallmark of CFS/FM have the right of it.

    I apologize for this being such a long response to your questions. The endocrine system is so intimately connected that I didn't know how to seperate them and still give you a good idea about me treatment.

    I am a 1/2 full kind of person, yet the more I researched this area the more angry I became. There has been excellent studies going back several years showing hormone level problems with CFS/FM patients, yet there are still some incredible arrogant doctors still insisting that it is a "faulty mind illness".

    How they can ignore the HPA axis studies is beyond me. What is going on in the UK is criminal with their healthcare approach to CFS/FM ... how do they explain these hormone problems?

    Dr. Elizabeth Lee Vliat is a hormone specialist and a FM patient. She took it upon herself to study testosterone in female FM patients and treatment with T replacement. There is an article in the library here on her.

    If we have a muscle problem ... studies have shown and my tests back up ... FM patients have low testosterone and low GH ... testosterone makes muscle and Growth Hormone repairs muscle ... Why in the world isn't this a number one priority in common treatment?!?

    I hope this is helpful. I do feel better ... was in early remission prior to addresing my HPA axis and feel I will be in full remission after this last treatment step. Again, I apologize for it's length ... My understanding is not so thorough at this point to be able to seperate each into independent responses.

    Take care,

    Elsa

    PS I am being monitored very closely, meeting with my doctor every 3-4 weeks, as bringing CFS/FM hormones into optimal levels is tricky and requires lots of tweeking.

  5. sofy

    sofy New Member

    and wound up at the cardiologists. They tested me for everything. It wasnt till after it was all over that the light bulb came on in my fuzzy brain.

    The shortness of breath for even the slightest exertion was from the T3. It was classic. Sure enough when I went off the T3 all that stopped. I now just on Levoxyl.

    Be sure to watch for the side effects attributed to the T3 so you wont have to wind up having all those expensive tests like me.
  6. intrigue

    intrigue New Member

    Elsa,

    Lots of great info. Thanks!

    I actually have HIGH testosterone. (due to my polycystic ovarian syndrome ...another hormonal nightmare)
    But I also have low growth hormone.

  7. hopeful4

    hopeful4 New Member

    I started on 25 mcg. and worked up to 50 mcg. The 25 was too low, the 50 too high, I became agitated and anxious to the max. Now I'm on 37.5 mcg., but really do not feel any different from it.

    However, I'm still working on many other issues:
    All hormones low, but did not do well on testosterone or cortisol and stopped tx. Cannot take estrogen, progesterone, or pregnenalone due to ER+/PR+ breast cancer in 2003. Also, using anti-estrogen types of meds.

    Currently treating for candida and mycoplasma.

    Waiting for results on Igenex Lyme's test.

    What seems to be helping me is taking Provigil, which I resisted taking. I started about 10 days ago. I used to nap solid for 2 hrs. every afternoon. Now I'm not napping, just taking a short rest of 20 minutes.

    Have a great day,
    Hopeful4
  8. TwinMa

    TwinMa New Member

    I have been taking the T3 compounded hormone since Oct 6 or about 3 1/2 weeks.

    My regiment will be:

    5mcg for 10 days
    10mcg for 10 days
    15mcg for 10 days
    25mcg for 30 days
    then re-evaluate whether to go up in dose after the initial two months.

    I am currently on the 15mcg dose. So far I am not noticing huge differences. I have noticed that I get a headache two days after I increase the dose. It is only bad for one day, then I seem to adjust.

    I called the ITC Pharmacy where they compound the hormone to get a bit more info. The woman I spoke with said she was taking it and did not see changes for 4 months. She said after 4 months she felt like a different person. She had her energy back and was sleeping much much better.

    I'm hoping to have a similar result. Keeping my fingers crossed!

    It's often hard to tell which new thing I'm doing is having an effect. I'm currently trying a number of new things, and hope the T3 is one of the good ones! I know I'm only supposed to try one new thing at a time, but that is easier said than done!

    Katy
  9. Wasabi

    Wasabi New Member

    I'm taking 22.5 mcg in the morning and 15 mcg in the late afternoon. I've been taking it since July. I think I noticed a difference within a few weeks, although I can't say exactly when.

    I do know that over all it has made a huge difference. I have much more energy than before and can actually get up and feel like a human being most mornings after the T3 has kicked in, instead of dragging myself around all morning long. Before I started the T3, I felt like I was in a half-coma all morning long.

    I can actually feel the effects tapering off in the afternoon before my second dose, and the afternoon dose gives me a second wind.

    Similar to others who have posted, several prior doctors said my thyroid levels were fine, but none of them had looked at the ratio between the T3 and Reverse T3.

    My FM specialist says the normal ratio is between 1:2 and 1:4 (T3:RT3). The ratio for FM people is often between 1:8 and 1:10. Mine was 1:11.5

    As far as other hormones go, I do take Melatonin at night to help me get to sleep. (I think Melatonin is technically a hormone.) I also have Oxytocin (another hormone) injections periodically to reduce the pain. (I must note, however, that I need the Oxytocin injections much less these days; I'm doing a lot better!)
  10. TwinMa

    TwinMa New Member

    I talked to another person who is on T3. She is currently taking 75mcg. She said it took 2 1/2 to 3 months to see a change. She said when it did kick in, she felt more energy and just generally feels better.

    That's two people I've talked to who give T3 thumbs up.

    Katy
  11. acesk

    acesk New Member

    I'm on 37.5mg T3 - the 50mg made me hyper and feel bad. I have been on it for a year. Really helps my energy.

    Sue in Florida
  12. lalmasy

    lalmasy New Member

    I was on Synthroid (T4) for the past 8 years but for the past several years I have had classic symptoms of hypothyroidism. I am an RN and my MD would always say "your labs are all within normal limits". Well after being diagnosed with Fibro/CFS with no relief I decided to go to FFC. I was found to be extremely hypothroid! RT3 very high and T3 very low.......currently taking 85mcg of sustained release(if it is not SR you can have HORRIBLE side effects) in the am and 10mmcg in the afternoon and I am increasing my daily every week until I feel more "normal". I am finally starting to feel a little better but this does take months for the lab values to increase.
    I was also found to have candida, (finishing 3 months of Diflucan) Extremedly elevated Epstein Barr. CMV and HH6(finishing 3 months of antivirals, low testosterone(taking 5mg/ml cream), Very low pregnolone/dhea/growth hormone........I am on so many nutraceuticals, its not even funny, but we're finally at the point where hopefully I can get rid of some of the pills if my next set of labs come back OK. Good Luck
    [This Message was Edited on 11/02/2005]