My PCP wants me to wean off Cortef and T3

Discussion in 'Fibromyalgia Main Forum' started by TwinMa, Jul 11, 2006.

  1. TwinMa

    TwinMa New Member

    I've been taking Cortef (hydrocortisone) since last October (through FFC Dr). I really think it has helped with reducing inflammation, reducing pain and alleviating general adrenal insufficiency problems.

    My PCP wants me off of it due to the increased risk of osteoporosis, as well as other side effects.

    I've been thinking of doing this anyway, so I guess I'll SLOWLY start to wean. I'm on 20 mg/day now, so my first step would be to go down to 15 mg/day.

    Anyone else weaned off and had good success? Any bad things happen with going off it? How long did you take to go off it?

    Any other recommendations? Should I start a glandular adrenal? If so, when? Before or during the wean?

    I have to admit, it really kind of scares me to go off, but I feel like it's time.

    Edit to add:
    She wants me off T3, too. I'm taking 37.5 mcg compounded T3 and have been since October.
    [This Message was Edited on 07/12/2006]
  2. NyroFan

    NyroFan New Member

    TwinMa:

    It is good to know that the doctor knows your case and is experimenting with various meds or switching then around or just taking you she seems to be in your best interst.

    I would just be open with her and give her feedback on what she is doing and I would stay close with her while you are detoxing.

    Feel better soon!

    nyrofan
  3. TwinMa

    TwinMa New Member

    T3 is a thyroid hormone and Cortef is hydrocortisone for adrenal insufficiency (hypothyroid). Definitely not interchangeable.

    I am on both. I take 37.5 mcg compounded T3 from the ITC Pharmacy and 20 mg/day of Cortef (generic hydrocortisone from regular grocery pharmacy). Been on both since October.

    I haven't been back to the FFC since Feb. I only went there a total of 4 times. I'd like to be able to do everything through my PCP. Insurance covers my PCP, for one thing. The FFC is just so darn expensive.

    Another issue I have with FFC is that I feel they are too aggressive in their treatments for my liking. I don't feel like they pushed anything on me, but they sure do have a shotgun approach. That may work very well for some people, but I want to take things slow and add things one at a time. I have no doubt they would be fine with this approach, but I can't afford to keep going back just to check in with them.

    I feel like I have learned so much from this board, as well as from reading books like Fatigued to Fantastic and Devin Starlanyl that I am okay right now with managing my health on my own (with periodic checking in with PCP).

    I feel like I got lots of good info from FFC, but also feel like I'm doing pretty well at this point in taking charge of my own health. I still have a pretty big list of things I want to try.

    I'm so much better than I was a year ago. I still have a ways to go and have plenty of bad days, but also have quite a few good days. I've actually strung together several good days in a row, which is amazing. Even my bad days and flares and headaches aren't as intense as they were a year ago.

    Progress!!

  4. victoria

    victoria New Member

    It wouldn't necessarily hurt to wean off the cortef and see how you do. I took it for 6 months and found I didn't really need it again. But others do. Dr. Teitlebaum says that as did the doctor who originally pioneered its use (I had a long phone conversation with the latter about it).

    Also, I have read that not enough can CAUSE osteoporosis - even my gynecologist agrees with that now (originally she didn't like it that I was on it when I was taking it).

    T3... I would really want to doublecheck on that, do some research. Usually when you are taking thyroid hormones as an adult, you don't go off them.

    Ultimately I guess you have to decide in whom you'll place your trust.

    all the best,
    Victoria

  5. TwinMa

    TwinMa New Member

    Whom to place my trust in is a very good question. One I am still trying to sort out. They all seem like they know what they are talking about when you talk to them. But then so many times they contradict each other! Arrrgh!

    You said you were on Cortef for 6 months? How much were you taking? How long did you take to wean off completely?

    Who is the Doc that pioneered the use of Cortef? Can you share any more of that conversation? That sounds interesting!

    My PCP wants me off the T3 because my TSH is very very low, and the fact that taking T3 can increase osteoporosis. My Mom has osteoporosis, so that is a concern.

    I'm nervous about weaning off the Cortef, but feel like it is probably time. I need to see how I do off of it. If I don't need it, I sure don't want to be taking it.

    Going off the T3 is another matter. I'll see how the Cortef goes, and then deal with the T3 issue.

    Thanks for your response.
  6. victoria

    victoria New Member

    I can't remember what all Dr. Teitlebaum said in his book, but I do know it is what got me interested in pursuing it. I then read the book 'Safe Uses of Cortisol' by Wm Jefferies MD.

    I was actually going to try to get an appointment with him and called directory assistance... turns out I got his home ph # as he was retired, and he picked it up... he was 85 when I spoke with him and sharp as a tack still.

    Hard to remember all I asked etc as it was about 2002 or '03 I think. He did reassure me it was safe, he himself had been taking it since he was 50 and realized he was experiencing the same symptoms as his patients. He was taking it along with thyroid medication.

    He compared the hysteria over it to what could have happened had thyroid medication been given in the amounts cortisone had been given. I don't have the book anymore or I would look up the info about physiologic doses relating in a positive way with osteoporosis etc.

    I was taking around 18 mg. of cortef. I think I took about 6-8 weeks to wean off it. As I said, at the time my gyne was against it, but about 18 months later she actually offered to give me a new RX for it if I felt I wanted to use it again. Obviously she'd been doing her homework.

    The book was just reissued and revised in 2004 by the way, 3rd edition, so it must be still valuable information! Here's parts of the synopsis:

    "The 3rd Edition brings up to date the material that so many readers found helpful in the previous editions. The text has been revised and reorganized with current chapters focusing on:
    the history of cortisol use,
    sources of confusion regarding cortisol therapy,
    the significance of normal adrenocortical function,
    generally accepted uses of physiological dosage,
    viral infections,
    miscellaneous clinical conditions, and
    future directions for research and therapy.

    'The author provides explanation and confirmation of the rationale for the effectiveness and safety of the uses of physiological dosages of cortisol in the treatment, not only of patients with rheumatoid arthritis and other autoimmune disorders, but also of patients with chronic allergies, chronic fatigue syndrome, gonadal dysfunction, infertility, shingles, acne, hirsutism, respiratory infections, and other less common disorders.

    'It is a known fact that the influenza virus attacks the human body by impairing the production of the adrenocorticotropic hormone (ACTH), which, in turn, impairs the production of cortisol; the only hormone that is absolutely essential for life.

    '. . .it is hoped that this type of cortisol therapy will not only be helpful in the treatment of the various disorders mentioned but will lead to a better understanding of the factors that contribute to the development of these disorders and ultimately contribute towards their prevention."

    I also took T3 way back in 1993, and really felt good on it. I was 42 at the time. Unfortunately, I was hit with an extreme amount of stress at the same time my doctor wanted me to cycle down on it to see if I could go without it...

    I did poorly, and went back up on it to where I was but couldn't get back to feeling as good as I had ... taking more did not help, I ultimately went back on Armour thyroid med.

    However, I no longer take any more thyroid med as I am doing the marshall protocol (experimental and controversial) and found as I progressed I no longer needed it. Tests over a year ago showed I was fine, I usually do tests yearly and am overdue.

    It is hard to go off thyroid med, if you need it. My MIL has severe osteoporosis altho I'm not sure it's related really to taking thyroid med. How can taking something your body needs and is not making cause an adverse reaction? Anyway, the doctors tried to take her off at age 80 carte blanche, but she felt terrible, so they let her go back on it.

    Hope I didn't ramble on too much and some of this is of use to you... if I had to do it over I would do what I did before and that was to read the books and do the research. So far in my life, I haven't been wrong in doing things this way, in fact I've been better off.

    all the best,
    Victoria


    [This Message was Edited on 07/12/2006]
  7. laura81655

    laura81655 New Member

    The Rheumatologist that I saw at UCSD told me that 10mg. of hydrocortisone is only equivalent to 3mg. Prednisone and that low of a dose should not cause the Osteo or other bad side effects and I could stay on it without any harm.
    You may want to see how you do if you wean off slowly.

    Laura
  8. TwinMa

    TwinMa New Member

    Thanks for all that good information! You definitely were not rambling--that was good stuff!

    It seems like there are two camps when it comes to both cortisol supplementation and T3. First, there are the old fashioned MD's (even young ones) who think any corticosteroid is good for short term use only. That long term use is always very bad. They seem to think Cortef and Prednisone are the same and cause devastating long term effects. They don't seem to recognize the idea of a "physiological dose".

    Same kind of thinking for T3 supplementation.

    Then there are the more open and forward thinkers who look at the whole person. This newer group looks at clinical symptoms rather than just lab test numbers.

    I wish I could find a PCP who is willing to think outside the box, AND was covered by my insurance.

    I'll have to see if I can get that book from the library. Thanks for posting excerpts from it. I really appreciate the information you have provided!
  9. TwinMa

    TwinMa New Member

    I'm glad you found this thread. It's good to know that your Rheumy thinks 10 mg is not a high enough dose to cause osteo problems.

    I'll need all the ammo I can get to show my PCP that low dose Cortef is not a bad thing.

    I think I'll start doing a Pub Med search for cortisol use in physiological doses.
  10. victoria

    victoria New Member

    You'll probably be able to locate Wilson's book easier...

    btw, Dr. Jefferies has a home page online at http://members.aol.com/jefferiesw/ -- It hasn't been updated since 2002, but does have a complete list of his publications.

    I think Dr. Wilson does too, that might be a place to also start for T3 if you can't get the book.

    best,
    Victoria



  11. alaska3355

    alaska3355 New Member

    has weaned off of Cortef this summer. He was on it for 6 months and he took 20 mg. daily. He seems to be no different, so I think he's doing OK without it. Time will tell...so far it's only been about 10 days without any Cortef.
  12. winsomme

    winsomme New Member

    what about DHEA as a substitute?

    i have heard that this could help with adrenal insufficiency.

    i also thought that this was one of the treatments used by the FFC.

    maybe start a new post asking for info on DHEA. i'm sure someone here takes it.

    thanks
    bill
    [This Message was Edited on 07/13/2006]
  13. Empower

    Empower New Member

    I was on Cortef for about 6-8 months, and also Armour THyroid

    I actually think they made my fatigue and anxiety worse

    I did wean off both very slowly

    I had ending up in ER with extreme exhaustion b4 I starting weaning off the meds. The dr in the ER told me the Cortef is very dangerous to take as it supresses the adrenal gland

    I had no problem weaning off both, but make sure you do it VERY SLOWLY and follow dr instructions. If you don't think he/she is weaning you off slowly enough, talk to them
  14. TwinMa

    TwinMa New Member

    Thank you all for your responses.

    I'll definitely check in to Dr. Jefferies and Dr. Wilson's websites.

    I'll also check into the DHEA angle. FFC did suggest taking DHEA with Pregnenolone. That might be a good thing for me to add.

    I'm going out of town for a few days, so no changes in anything right now! I'm just trying to keep stable!