Sanity check and questions re FFC test results

Discussion in 'Fibromyalgia Main Forum' started by toronto133, Jan 5, 2006.

  1. toronto133

    toronto133 New Member

    I have had some time to digest the information that I received on my FFC test results. Can any FFC patients out there help me out with some of this?

    I was told my reverse T3 was very high but because my regular T3 and T4 were normal I did not need treatment. Of course I don't want to be treated if it is not necessary, but what was the point of the reverse T3 test? I found that confusing.

    My assumptions on the infectious panel were that they used PCR testing (they did not) and Igenex for Lyme - however this wasn't so. Also, the antibody tests for Mycoplasma were only for Mycoplasma Pneumonia (think there are several types including stomach etc). Is this consistent with the testing at other centers?

    Also, with my hormone testing - I brought in tests that were done in Canada in which the bottem of the normal range was "0". On that basis, all of my hormones were ok - does this mean that the center is looking only to correct those who have too much of specific hormones?

    If anybody has any feedback for me - it would be appreciated.

    Denise
  2. mamaseta

    mamaseta New Member

    Check out this site: drlowe.com

    This may be helpful. I'm trying to find anyone who has been treated to see what their results were.

    Good luck!
  3. toronto133

    toronto133 New Member

    Do any of the board experts know why they do the reverse T3?

    thanks,

    Denise
  4. Pianowoman

    Pianowoman New Member

    There is an explanation of this on the Fibro and Fatigue website under the heading: Are All Chronic Fatigue/Fibromyalgia Patients Low Thyroid?

    Hope this helps
    Kathy.
  5. bpmwriter

    bpmwriter New Member


    the way i understand it, reverse t3 is essentially inactive t3. the docs at the ffc would like to see the ratio of t3 to reverse t3 to be about 3:1, meaning you have 3 times more ACTIVE thyroid hormones than inactive. my original scores were something like 350 (t3) to 262 (reverse t3) so they put me on t3 to try to move me closer to the 3:1 ratio. ideally, your reverse t3 is under 150.

    hope this helps?
    eddie
  6. toronto133

    toronto133 New Member

    My reverse T3 was 260 but the doctor told me that since my free T3 and T4 were within normal range that we could ignore the high reverse T3. That seems to contradict the article or the point of testing for the reverse T3.

    Thank you.

    Denise
  7. Shannonsparkles

    Shannonsparkles New Member

    I've found it very helpful to e-mail the doctor at my FFC when I have questions regarding my tests or treatment. Replies have been prompt and useful. Hope this helps. (( ))
  8. toronto133

    toronto133 New Member

    I wish I had taken the advice of members here and my own instinct and moved to a different center.
  9. Shannonsparkles

    Shannonsparkles New Member

    Which center are you using?

    I wonder if they would forward your test results to a different FFC center doctor for a second oppinion.
  10. bpmwriter

    bpmwriter New Member


    at the atlanta center, a 260 reverse t3 score would have earned you a t3 prescription. interesting, since i thought the protocol was pretty standard from center to center.

    eddie
  11. toronto133

    toronto133 New Member

    It certainly doesn't seem like the protocols are standard or perhaps the center I am going to operates in a different way. Basically my first appt there was not so good - but I returned hoping for the best.

    Thanks,

    Denise
  12. Juloo

    Juloo Member

    My rT3 was 106, and the T3 was 278.

    The ratio is 1 : 2.62.

    I am titrating up on T3 right now -- tomorrow is the last day of the 25s, then I got up to 37.5 (I think). I actually felt the difference when I was on the first bottle (10s).

    My understanding (but I don't know where -- not the FFCs), is that between 3 and 4 would be an optimum ratio.

    My Free T4 was at 0.8 -- the very bottom of the range for 'normal', although other references ranges I've seen put the bottom at 0.9.
  13. elsa

    elsa New Member

    I hope I didn't rattle you by pointing this out yesterday.
    I had replied kind of late so you and Chris may have never seen it.

    I am just very surprised that you are not being treated with T3. My rT3 was 177 and my Free T3 was 361 (370 optimal) so I was almost classic in that I was alittle low in producing T3, but bad at also creating way too much inactive T3 in the form of rT3. I am on T3 and have made it to 75mcgs.

    Remember too that the "test numbers" are not something they live and die for. They also listen to your symptoms. If you have extreme intolerance to cold or very hot temperatures,feel week, are very tired, have dry skin, diffuse hair loss (doesn't have to be balding, just a change in how much you lose during shampoos could be an indicator)

    ... weight gain around the middle, cold hands, low body temperature especially in the morning, then in most cases, a trial of thyroid hormone treatment is started..

    If these sound like you then they take into consideration the entire picture .... in other words, they treat clinically.

    I hope you are able to work this out. I remember that you weren't happy with your initial visit and now this T3 thing is odd. I'll be thinking about you ,.... please keep us posted. I'd like to hear how things work out for you.

    Elsa
  14. TXFMmom

    TXFMmom New Member

    They are looking for the ratios of the reverse to the active.

    I had been on Synthroid for years and they kept checking TSH and used it. FCC checked and put be on the active form as my ratio and the other tests indicated that I had circulating thyroid which wasn't being converted and utilized.

    I think that the FCC's do some good work, they treat patients with respect, and don't tell you are a malingerer. Mine don't do that anymore anyway, with all my problems, but they are willing and open to things.

    However, the Houston FCC's doctor quit. I had seen her just two weeks prior to calling back with a problem from the anti-inflammatory they had me on and she was GONE. No way to get assistance and no way to get assistance on my insurance forms. I WAS TICKED.

    By TX law, they have to give all patients 30 days notice when a doctor leaves a practice so patients can have their records sent somewhere else or whatever.

    I RIPPED THEM A NEW ONE AND SCARED THEM, BELIEVE ME. I am a very good patient, organized, I write down what I need to discuss and what I need, and try to save them time, but I am a terror when someone cuts corners or doesn't do the right thing.

    I called the State Board and could have gotten them in very big trouble. I had to sever my relationship with my rheumy because he thinks they are wacko, and then I was left in lala land.

    They told me that they were having one of their docs in from San Antonio and I could get an appointment in SIX WEEKS.

    HA!!!!!!!!! I told them that they really shouldn't pull that stuff on ANY PATIENT, IT WASN'T ETHICAL, AND WHEN I REMINDED THEM THAT I WAS AN RN, AN ADVANCED NURSE PRACTITIONER, AND A CERTIFIED REGISTERED NURSE ANESTHETIST AND I WASN'T SOMEONE TO MESS WITH, THEY NEARLY HAD A STROKE.

    SOMEONE FROM THE DISTRICT CALLED AND TRIED TO SMOOTHE IT OVER.

    I got in to see my internist and he helped me, but they shouldn't do that.

    CFS and FM, and other immune patients HAVE SERIOUS PROBLEMS AND THEY CAN'T BE LEFT HIGH AND DRY LIKE THAT.
  15. toronto133

    toronto133 New Member

    Let me start by saying that because I am from Canada my expectations from medical care are not that high. It is pretty inconceivable to me that doctors are available by phone between appts or will answer emails. Having assured, ongoing access to a specialist here is pretty much unheard of.

    Elsa, thank you for your good information and concern. I will try to address this issue with the doctor at my next appointment.

    I have decided not to return in person to the clinic but rather will continue by phone (I am 5 hours away and getting into weather issues). Since I have made such a big investment in this, I have decided to tough it out until I see improvement or realize that it is a dead-end (hopefully the former).

    Regards,

    Denise
  16. hopeful4

    hopeful4 New Member

    Hi Denise,
    I started at Cleveland FFC (near family) in March '05, and switched to Seattle FFC (opened later and closer to where I live) in Oct. '06.

    I don't really understand the thyroid info, too confusing for me. My test showed:

    TSH - 2.11 (range .40-5.50)
    T4, Free - 1.1 (range .8-1.8)
    T3, Free - 239 (range 230-420)

    I just want to say, which I'm sure you know, that we are all individuals, and what works for one doesn't necessarily work for another. I've read previous FFC posts in which many other folks are trying to get the right dosage of thyroid or other hormones that's right for them through some trial and error.

    I started out with T3, cortisol, and testosterone. Dr. J. would have recommended estrogen/progesterone also, but I cannot take them due to previous breast cancer.

    With the T3, started out low dose and built up. It turned out that I could not handle the full dose of 50 at all and settled back into the 37.5. I never felt like that helped me at all.

    So, recently at the Seattle FFC, Dr. M. switched me to a T4T3 combo. She started me at 1 GR, which was too much, made me jittery and shakey. Then I kicked back to .25, built up to .50. I could feel that this combo was helping me. Today I just started the full grain and will see how that goes.

    The cortisol and testosterone cream I could not manage, they made me feel extremely anxious like I was going to explode, like a panic attack.

    About the Lyme test. They tested me twice with Quest. Once at the first set of labs, once at the second set. Both came back negative, and at the time I didn't know enough about the testing or about Lyme. I don't know why they bother at all with the Quest testing for Lyme, it is known to be very unreliable. I am going to discuss this at my next Dr. visit.

    So in October I was re-tested with the Igenex Western Blot. This did come back positive. Wish I would have known that in April, I would have saved 6 months.

    On the Mycoplasma Pnuemoniae, I tested positive and positive for echovirus. No other co-infections or active viruses were found. Candida was positive.

    P.S. If you are not comfortable with the center you are at, listen to yourself, take your own advice. The Cleveland center was great, all the staff very supportive and responsive, Dr. J. is considered one of the best.

    Not sure if this is the info you're looking for, but hope something here helps you.

    Take care,
    Hopeful4
    [This Message was Edited on 01/11/2006]
  17. toronto133

    toronto133 New Member

    Thanks also for your post. Your experience is very helpful to me.

    How are you doing? How is your Lyme treatment going?

    Regards,

    Denise
  18. hopeful4

    hopeful4 New Member

    Hi Toronto,
    I'm just in the early stages of Lyme treatment. I was very scared to start the ABX, because of what I've heard about the herxing.

    So I started out very slow, just building up to a full dose the last few days. I've only noticed some increased brain fog and fatigue, but it is intermittent.

    I'm actually thinking it could be from increased candida while on the ABX, which I am noticing even though I'm on a strict candida diet and nystatin for candida and probiotics.

    I started the Boluoke (lumbrokinase) for fibrin in the blodd vessels as a result of Lyme, before the ABX. It seemed to help me think a little clearer. No adverse reactions.

    I'm waiting on some of the other medications as they are tinctures that contain alcohol which I can't have. So I'm looking into alternatives with my Dr.

    Also, reading what I can, getting on lymenet dot org, and talking to people from my state support group.

    BTW, the T3/T4 is helping me noticeably.

    Take care, hope today is a good one,
    Hopeful4
  19. elsa

    elsa New Member

    I think that is a good plan. For the most part people are improving with the FFC's help. I know they are on the right track as it very closely resembles my own treatment plan that I started two years ago. I'm now in remission with still better days ahead.

    I'll be thinking positive thoughts for you.

    Take care,

    Elsa