FFC Bioidentical HRT

Discussion in 'Fibromyalgia Main Forum' started by munch1958, Nov 24, 2006.

  1. munch1958

    munch1958 Member

    Can anyone help make any sense of these 3 sets of FFC labs?
    If the columns format correctly when it posts then the first column is the hormone (test), the 2nd is FFC's optimal range, my values in March 06, July 06, and Nov 06.
    The last column is the dose of each med I'm on.

    I'm spending $126 per month on B-HRT (T3, hyrocortisone, estradiol, estriol, testosterone, progesterone) plus another $60 on FFC supplements (Gamma Grow, DHEA (both kinds),7-Keto and regular DHEA plus pregnenolone).

    I dropped many of their other supplements which I can no longer afford. It's so hard to pick and choose what might work. I did do a series of 6 Gamma Globulin shots and am following their new Glutathione Nebulizer Treatment.

    My lab values briefly rose in July (when I was feeling fantastic!) and have now plummeted back to where they were before I went to FFC. Now I feel worse than Cr@p especially after a brief fling with feeling like a human being again.

    Is this definitive proof of what a crash looks like on paper? If I'm not absorbing the meds -- why not? Has anyone else had this problem? If yes, how was it fixed?

    Clearly my FM is due to neuroendocrine imbalances, hypothyroidism, candida, EBV, CPN and food intolerances (soy, gluten, and corn allergies). I am taking a whopping dose of T3(100 mcg) and my T3 level is 245 which is barely at the bottom of the normal range for Quest labs 230-420 let alone FFC's range of 360-450.

    HORMONE Optimal 3/06# 7/06* 11/06# CURRENT
    FFC RANGE HRT DOSES
    ******* ********* ***** ***** ****** ************
    IGF- 1 200-350 86 L 121 L 88 L --
    Progesterone > 10 1.1 L 5.6 L 2.2 L 100 mg 2X
    Estradiol > 70 42 L 65 L ? E3 E2 2/1.25
    DHEA > 200 39 L 131 L <15 L 25 mg. 2X
    FSH <8 15.6 H -- -- --
    LH <8 10.0 H -- -- --
    Pregnenelone 130-230 17 L 33 L 28 L 100 mg 2X
    Aldosterone 20 - 30 30 H -- -- --
    Tot Testosterone 30-60 14 L 68 H 13 L 1.25 mg
    % Free Testosterone 5-8 0.6 L .41 L 0.36 L --
    TSH 0.02 L -- -- --
    Reverse T3: < 145 196 H -- <0.05 L --
    T-4 Free 1.5 - 1.8 1.0 L 0.4 L 0.2 L --
    T-3 Free 360 - 450 22 L 730 H 245 100 mcg
    Cortisol Tot 5-21 21 -- --
    Cortisol Free 1.88 - 4.73 1.28 -- -- 5 mg
    hydrocortisone 3X

    INFECTIONS:
    Candida IGG >=1.0 1.45 H 1.50 H 1.28 H Nystatin 3X
    Candida IGA >=1.0 1.22 H 1.46 H 1.21 H STOPPED 60
    Candida IGM >=1.0 5.00 H DAYS DIFLUCAN
    OR 3.0? 1.12 H .93 H “ 10/15/06
    CPN IGM <1:16 <1:16 <1:16 -- --
    CPN IGG <1:32 1:256 H 1:512 H -- --
    CPN IGA <1:16 1:32 H 1:64 H -- --
    EBV IGM AB >=1.1 0.08 0.10 -- --
    EBV IGG AB >=1.1 4.16 H 3.96 H -- --
    EBV EBNA IGG AB >=1.1 1.53 H 1.72 H -- --
    • took hormones the morning of the test! Was on 7-Keto-DHEA
    # No (T3) Liothyronine, DHEA or Pregnenolone for 24
    hours plus skipped evening doses of DHEA (now
    taking regular DHEA), estrogen, testosterone &
    progesterone

    [This Message was Edited on 11/25/2006]
  2. Slayadragon

    Slayadragon New Member

    I need to look at this more carefully when I'm more awake.

    However, I'm not sure that 100 mcg of T3 is a "whopping dose."

    I take 150 mg, and my doctor has said that it's an average dose and that patients go much higher. He encourages me to keep going up until I get signs of excess, and then to pull back to just below that.

    (The test needs to show that you're not above range, but he doesn't think that would happen for me.)
  3. mollystwin

    mollystwin New Member

    I am also on 100mcg. It's good to hear that it;s not a high dose because I'm sure they are going to increase it due to my body temp is still low. Are you on the compounded FFC T3?
  4. munch1958

    munch1958 Member

    My pharmacist is the one who said 100 mcg. of T3 is a "whopping dose" but I don't think he's got much experience with FM patients. So far, my FFC doctor is reluctant to go higher than this. I don't understand why because my body temp is typically 96.X and I have NEVER gone hyper yet.

    I was diagnosed with hypothyroidism in 1981. I think I have some form of thyroid resistance or maybe I can't convert T4 into T3. I have been tested 5 times for thyroid antibodies and am always negative. The FFC tested me again in March '06 -- also negative.

    Over the years, I've tried just about every thyroid drug on the market. My first thyroid doc had me raise the dose until I got hyper so I know it feels sort of like a zillion cups of coffee. He was old fashioned and relied on body temp and symptoms not lab rages.

    I was on Armour when I first started at FFC. Historically,
    my best dose was to alternate 3 grains with 4 grains every other day. When I moved to Central Illinois from Chicago I could not find a doctor who would continue to prescribe this dose for me because my TSH indicates I'm in the hyper range.

    That's about the time when they started treating lab numbers on a page. When my Armour dose was cut in half in 1999, I got severe costochondritis for the first time ever and my voice became so hoarse my daughter was calling me Mr. Ed. My hair started falling out too. The top of my head looks like the Grand Canyon.

    IMHO, the whole TSH method of treating thyroid dysfunction is a lot of hoey. I think everyone is different so it's a lot of trial and error to find the magical thyroid drug/dose. I'm still searching 25 years later.

    My husband takes Synthroid to manage his hypothyroidism which is due to a multinodule goiter. It frosts my rear that his TSH can go up and down and he has no change in his symptoms. His doc just changes his dose and he never feels any better or worse. He sleeps like a baby too.

    When I got to FFC, I had very high levels of reverse T3 which they say is common on Armour. In the past, I felt horrible on Synthroid alone. Maybe a little T4 with the T3 would help. I gained a ton of weight on Synthroid and Armour. Since I started at FFC and T3, I have lost 30 pounds.

    In August, the FFC doc ordered 2.5 grains of compounded T3/T4 mix. The pharmacy I use sent porcine (Armour) and my FM symptoms were back in just 4 days.

    Then she upped it to 3 grains (T3 28.5 mcg. T4 114 mcg.) from ITC. I believe this is what caused me to crash but I wonder what role 60 days of Diflucan + Nystatin played in all of this. I went from 100 mcg. to 28.5 mcg. so it was probably a severe shock.

    I also was doing the gamma globulin shots every 2 weeks too. The FFC's are very aggressive in their treatment. When I'm trying so many things at once I don't know what works and what doesn't! It's not all bad...My candida levels have come way down. I'm able to tolerate more foods, perfumes and my MCS is better.

    I have Express Scripts and they won't reimburse me for anything ITC compounds since it's out of network. I've had to eat the bills ($44.50 X 3) for the FFC preferred pharmacy. I pay only $18 (my co pay is $25 per RX) from Bellevue in St. Louis for what is "supposed" to be the same exact RX.

    I believe my pharmacy is sending me compounded Cytomel because the bottle says Liothyronine. The ITC bottle says Triido-L-thyroinine. This is the "bioidentical" T3. My other doc said compounding pharmacies all use the same T3 so I don't know who to believe anymore.

    I am struggling to get answers on why my hormone levels are so low. I am faithfully taking every day exactly as instrtucted estradiol, estriol, testosterone, progesterone, T3, hydrocortisone, pregnenelone, and DHEA. Maybe I should get in touch with Suzanne Somers. HA HA!
  5. mollystwin

    mollystwin New Member

    It can be very frustrating trying to figure out what causes a crash!

    The first time I was treated for candida with diflucan I had a severe crash. This was the only thing I was treating at the time so I know it was candida die off. That was before FFC.

    In July I began the gamma globulin shots at FFC and in August had the crash of my life, plus upper resp infection. I believe the GG shots stirred up my immune system and made me sick. Hopefully it increased my immune response so that this doesn't happen again!

    You should call Susan Somers!! She proclaims that she is perfectly balanced and is very fun to be around! LOL
  6. spiritsky

    spiritsky Member

    you are not taking enough thyroid T3 hormone. TSH is low but so is T4 and T3...you're body is not producing anything in the line of thyroid hormone. I would think you need more. The way I figured out my own dosing was to just keep going higher every 5 days until you get to a dose that makes you feel a jittery - then back off to the previous dose that didn't make you feel jittery. You'll know what that means when you get there. I would think from your numbers you could go up to 200mcg and you would still be fine...but if you're going to do it, just go up 25mcg at a time to get there. For me , when I get a small crash it's always from going through a period of stress which makes my need for thyroid hormone to go up. Everybody is different, but just something to think about. Good luck.
  7. munch1958

    munch1958 Member

    Your idea makes the most sense to me! I hope my doc will abandon her old idea of going back to a T3/T4 mix. That was obviously not enough T3 to work for me. If she has the 'nads to stick with the T3 protocol that is the conerstone of the FFC treatment I should be fine. What ever happened to the patient titrating up to a comfortable dose?

    I'm sick of my hair looking like blond straw and falling out everywhere. My skin is dry and flaking. I feel cold and
    have popsicles for toes and fingers. I've got ridge filled fingernails that crack and peel, a hoarse voice, and constipation. With treatment, I look forward to the disappearances of many of these little annoyances.
  8. Slayadragon

    Slayadragon New Member

    Hormones are (as of yet) my most successful CFS treatment other than yeast control. (I have hopes that viral control may help too, but have no evidence of that.)

    Your post is a bit challenging, but let me look. I'm sort of fogged with the herx from the antiviral I'm taking, though.

    Let me look at the general posts before going over the lab results.

    My T3 is compounded, yes. Belmar Pharmacy. it's about $20 for a months supply regardless of the amount of T3 in each pill.

    The "old-fashioned" way to regulate T3 (or thyroid medicine in general) is through lab tests, actually. The four doctors I've known who have worked with me on it (and these have been _excellent_ MD's with degrees from Stanford, Northwestern and Indiana U....can't remember the fourth) have used this approach. They have had me increase until I feel signs of excess, then back off a bit. As long as the lab results aren't high, they think it's fine. (Another very good CFS-interested doctor who doesn't usually _prescribe_ T3 nonetheless agreed that any dosage of thyroid is fine unless the lab tests come up high.)

    I would work on getting them to prescribe more T3, therefore. This is not an unusual approach by any means.

    If I'm reading you right, i think you're being overcharged for your compounds. Look around and see. I've posted Belmar's phone number several times....if you search just "Belmar" you should be able to find it.

    Let's give a go at the labs.

    DHEA doesn't seem to be doing its job even at a high dose (I think 50 mg a day). Are you sure what you're taking is micronized? That makes a difference.

    Getting your DHEA to proper levels might reduce the amount of thyroid you need, FYI.

    It looks like you're in premenopause?

    Those pregnenelone numbers look especially low. I don't know what to say about that. I can't remember if pregnenelone comes in micronized form too. If so, try that. What does Suzanne say about it?

    How much hydrocortisone are you taking? You could go up to 20 mg a day without any problems, it seems. This could reduce stress on your adrenals and thus help them to create more pregnenelone and DHEA on their own (decreasing your need for supplementation). Golan's "Optimal Wellness" has a good chapter on improving adrenal strength in general, which may be what you need (e.g. herbs as well as the hormones, especially if the hormones aren't doing enough for you).

    Surprising that your aldosterone level is high. That's unusual for people with adrenal problems, I think. How's your blood pressure? With that level it shouldn't be too low. (Low blood pressure could account for a crash.)

    Interesting that your progesterone levels remain so low. Again, maybe you should try another form. Are you using cream? I tend to think that the oral prescription form of natural progesterone, Prometrium, works much better (as long as you don't have a fatal peanut allergy). And yes, it does absorb. Depending on your copayment, it could be less expensive (although my copayment on that one is pretty high.) And yes....it's bioidentical. You also could go up to 300 mg per day.

    Bioidentical Esradiol is available in regular prescription form too, in patches. The one I use is Vivelle. (It's an expensive copay for me too though.) I've had trouble keeping my estrogen levels high enough. Maybe a combination of the cream and the patches would work. There's also some complicated concept where some of the estrogen receptors get filled with the wrong substance (something like that), and a particular substance is supposed to reduce the problem. I have to look into that more. Anyway, if your estrogen becomes more of a problem as time goes on, you might consider it.

    I don't know what IGF is. please elaborate.

    Definitely you need more thyroid, both T3 and T4. I'd make it a priority to try to get it wherever and however you can.

    I'm not a big believer in candida tests. After 11 years of this, I think it's best to assume that CFS patients should _always_ be treating for candida on a regular and obsessive basis.

    I'd recommend a variety of probiotics, at 10 billion microorganisms per day (this is 10 regular capsules). I tried less of this in the past, with no results at all.

    Second, no sugar ever!!!! A hard resolution, but worth it. Yeast is very very bad. Read my post from a while back called BPPV if you want a terrifying example. (Try to reduce white flour and fruit juice too.)

    Third, routinely rotating yeast killers is a good idea. Most common are oregano oil (very strong stuff, underused), pau d'arco, citrus seed extract, goldenseal. Nystatin occasionally, maybe. Diflucan is short-term only, if you're having major problems (like my almost-deadly sinus/ear infection) while you're addressing the yeast in other ways for the long run.

    If you get a die-off (they can be intense), be sure to keep regular by any means necessary. You may want to try colonics (colon hydrotherapy). They're a bit taxing, but they solved one such herx for me in a flash.

    I don't know what OR or CPN are.

    I'm not a big believer in testing for individual viruses (EBV, CMV, HHV6, etc.), but maybe that's just me. (My own doctor has stopped doing it much too.) Seriously, at least for me, my immune system seems so shot that it seems sure that at least some of them are always there. It's like the yeast. Killing off viruses in _general_ seems to make a lot more sense to me (especially since there are assumedly a lot of viruses that haven't been "found"---HHV6 was just discovered in 1986, for instance.)

    So little is known about the AV's that it seems reasonable to just pick one and try it, and then switch to another later on (as an experiment to see which ones work best or because rotation could be good in terms of killing a variety of germs without getting resistence). My doctor likes Famvir and, increasingly, Valcyte. For some reason the FFC's all recommend Valtrex, even though it's kind of toxic and I've not seen many true success stories on it (just modest improvements).

    I think a test I recently took of the entire immune function is much more useful at deciding whether to use AV's than measures of individual viruses. A description of the test is floating around on several posts (try the recent one on with Rnase in the topic). The FFC's really should be using this one more often, I think. Maybe they just need to be introduced to it---it's pretty new.

    Even for transfer factor, I think it's probably better just to use one that takes care of a lot of different stuff. Otherwise, if your immune system is as weak as mine, eliminated viruses will just be replaced by others. Just my opinion, though. People on the board seem to _better_ with transfer factors, but by no means "cured".

    Have you been under any stress lately? That could account for a crash, of course.

    I'm due for a hormone review myself (I'd like to check my estrogen and DHEA levels at least), and will report the results.

    Hope this is at least vaguely helpful. Let me know if you have other issues to discuss.

    Bed now....
    [This Message was Edited on 11/26/2006]
  9. munch1958

    munch1958 Member

    Hi Lisa!

    Thanks for looking at my lab results. A fresh pair of enlightened eyes is a big help. Good to know that you've gotten the most benefit from hormonal treatments too.

    I don’t know how I’d categorize my menopausal status. I’m cycling progesterone on days 13-27 so I do have a cycle now. I was taking progesterone every single day but quit that in favor of copying Mother Nature. My candida IGM number was a 3 or a 5 in the beginning of this round of treatment.

    I tried 20 mg. of hydrocortisone but that made my lab work come back with over normal limits. My FFC doc advised me to go to 15 mg. per day. She didn’t order a redraw of cortisol.

    My blood pressure has been insane (170/120) in the past. That was when an idiot doctor told me I didn’t need thyroid supplementation anymore. Within 30 days after stopping Armour I was in the ER. My BP is within normal ranges now and I’m off Atenolol and Clan SR with the 30 pound weight loss and exercise regimen.

    I was using transdermal crèmes but developed polycythemia. My hemocrit was 52.8 (normal 37 - 47). For units of blood were removed a year ago to get my HGB/HCT back to normal ranges. I do believe the phlebotomies triggered the worst crash I’ve ever had since 1981.

    I agree with you that I definitely need more of everything especially T3 & T4.

    For an explanation of IGF-1, the article I’m most interested in is by Robert Bennett.
    myalgia.com/growth_hormone_deficiency_in_fib.htm

    CPN is an abbreviation for chlamydia pneumonia an infections bacteria implicated in many types of human disease. For more on this visit cpnhelp.org

    At the time of my FFC visits, R-Nase-L testing was suspended by Quest Labs. I don’t know why. I’m not sold on the virus aspect of this DD. Everyone has antibodies to some of these very common infections.

    Nothing yet from FFC or as you called it the McMedicine clinics. I got a good giggle over your post on the other thread. Thanks for your input! Linda
  10. Slayadragon

    Slayadragon New Member

    I'm currently of the belief that Epstein-Barr is one of many, many viruses (many of which have yet to be identified) that cause or exacerbate CFS.

    Therefore, the fact that almost everyone has Epstein-Barr makes sense to me.

    My own immune panel suggests that my _total_ viral load is 40x normal. This seems like there's definitely a problem that AV's might help....if used in the right way.

    I'm glad you liked my McMedicine post. Yours is the first reaction I've gotten to it. I will be eager to hear more information that provides more evidence with regard to whether it is true.

    I am glad that these clinics are helping some people, but I hope they do not do so in a way that is so inept that other really good doctors do not experiment in more reasonable ways with the methods they're trying.
  11. munch1958

    munch1958 Member

    I used to use Women's International Pharmacy in Madison, WI because of insurance issues. Then I switched to Bellevue Pharmacy Solutions in St. Louis, MO. Both Power-surge and Hyster Sister websites use this pharmacy for their hormone consultation programs.

    Back in January, before I ever went to FFC, Bellevue ordered a saliva test kit for me. It was shipped to my home with a prepaid mailer. My insurance company paid for everything too! I was charge $35 for the hormone consult fee but that was deducted from my first RX.

    I got the results from the saliva test in a few weeks. That's what got me interested in my hormone status as a contributing factor to my CF/FM. This is also when I realized all of my hormones were below the normal range even though I was taking adequate doses of hormones.

    Step 3 of the 6 step FFC protocol is to balance the hormones. I've never gotten past that phase even though the FFC doctor has put me on "maintenance". That's the main reason why I'm very upset with their treatment plan.

    The entire time I've been a patient at FFC I got my meds
    from through Bellevue. When I started crashing it was on ITC's product. My FFC doctor switched me from 100 mcg. of T3 to 3 grains (28.5 mcg. T3/114 mcg.T4).

    My co-pay is $25 per RX through Express Scripts and ITC is out of network. My insurance has rejected all 3 ITC claims that we've filed. That's $44.50 x 3 that we've had to eat.

    My FFC doc is back to pushing the "bioidentical" T3 from ITC at $44.50 per 30 days supply. I pay $18 for my T3 from Bellevue. The ITC bottle says Triiodo-L-Thyronine. I've probably been getting Cytomel (or Liothyronine) rather than "bioidentical" T3.

    My former doctor states that all of the compounding pharmacies use the same T3 and buy it from the same manufacturers. Granted it may not be compounded the same way or different fillers are used which can affect the rate the meds are absorbed. All very confusing!