Testosterone,bio-identical-How much? How long?

Discussion in 'Fibromyalgia Main Forum' started by hopeful4, Apr 25, 2005.

  1. hopeful4

    hopeful4 New Member

    My doctor from the Cleveland FFC wants me to take bio-identical testosterone. My labs showed that I'm at 0.32 and the reference range is 0.6-2.6, so I'm low.

    I'm a breast cancer survivor and called my oncologist to make sure it was OK for me to take. She said yes, but was concerned that the recommended dose, 5 mg., was too high and may cause masculinization.

    What can you folks tell me about how much testosterone you may have used, and for how long? Is this temporary, or for the long haul? Did it help you? Did you manifest male characteristics?

    Thanks for your insights.
  2. SusEQ

    SusEQ New Member

    As you probably know, I am a patient at the FFC of Cleveland, also. Dr. J started me on a 5 mg testosterone sublingual troche in November. I had additional blood work done in January 2005 which indicated an increase in my testosterone level. At my appt. in Feb, she lowered my dose of testosterone to 5 mg every OTHER day. I am continuing with the every other day dose until I go back to see Dr. J on May 25th.

    I have not noticed any male characteristics from the testosterone. I was hoping it would help my libido and so was my hubby. Unfortunately, it hasn't helped in that area at all.

  3. rox2

    rox2 New Member

    I had a total hysterectomy in 2000, so I have been down this road before. It is important to get the right kind of test. - I get mine from a compounding pharmacy - the best form is either a sublingual tablet or a cream base (not liquid). If you get the cream base you can adjust according to your symptoms - very important. If you take too much of this you can get really bad migraines, etc.

    Dr. Elizabeth Vliet, in my opinion, has the best books about hormones - her information saved me. Check out if you can the one Women, Weight and Hormones. If you want I can scan the pages about test. and email them to you. Let me know and how do I get your email add if you do???

    I had a friend who is a breast cancer survivor and she went to one of her clinics. So she can't take HRT either.

    Hope this helps.
  4. hopeful4

    hopeful4 New Member

    Hi SusEQ:
    Thanks for your input. Yes I have read many of your posts about the Cleveland FFC, and they helped me decide to go there!

    I see that there is an adjustment period with the testosterone, as with many of the other medications. I spoke to my oncologist today, and she would like me to find out what the lowest dose is that I can start with.

    Hi Rox2:
    Thanks for your comments, too. Dr. prescribed me capsules from a compounding pharmacy, bio-identical. Yes, I was uncertain with all of the hormone concerns re: the breast cancer whether it would be OK to take, and my oncologist said OK.

    I plan to call the FFC to discuss. I think that often, for those of us with Fibro/CFS that our needs are just a bit different than the average person. Our test results seem to be interpreted a little differently, not the standard. So maybe also, the meds/RX are prescribed a bit differently.

    Have a great day, and thanks for writing.
  5. coping1961

    coping1961 New Member

    i am now dealing with all of the hormone stuff. there is a web site that has helped me so much. try typing in hyster sisters. i think that wil get you there with out a web address. they have a whole forum on hormone and are great at answering quetions. from all i have read if i can get all of my hormones in balance my fibro will get better. they belive in using a componding pharmacy to get your hormones right for you and not the cookie cutter one size fits all
    i have found a doctor by calling a compounding phar. and asking which docs. use them for female hormone problems.
    just started a componded projeterone and in just 2 days i feel so much better. hope this helps.
  6. ruby711

    ruby711 New Member

    I take testosterone from a compounding pharmacy and I agree that the cream form is good bec. you can adjust it as needed. It is something you can build up on and you will know if you take to much or to little by various symptoms like headaches or irritability.
    The gel is not the same as the cream. I use to use an oral capsule of 1mg but I switched to an eqivalent amount in the cream. The oral is fine but the cream even better.You can call the pharmacist in advance for beginning dose. I figure out what I want by talking to pharmac. or reading material before calling my docs.

    The benefits build up over time like 2 wks to a month. I don't have any mascul. side effects. My hair grows a lot faster but no facial hair. It can make you crave dairy so be careful not to go overboard or you will end up with high cholest.The testos works better in combo with estrog. although I know estrog. is not a possibility for every women.
    I also highly recommend Dr. Eliz. Vliet's book -"It's my ovaries stupid"for a more complete understanding of HRT.
  7. wishingonastar

    wishingonastar New Member

    I agree with the recommendations to read Dr. Vliet's books. They are terrific and Dr. J. is very familiar with the work. I have been on 5mg of testerone (sublingual troche) since December. When I go back at the end of June, Dr. J. will re-test my testosterone...so that would be six months in total.

    You might also ask Dr. J. to speak directly with your oncologist and have them agree on treatment.

    Good luck!

  8. hopeful4

    hopeful4 New Member

    Thanks so much for your helpful input.

    coping1961: I'm going to look at the hyster sister website, I have heard of it somewhere before, but not checked it out.

    ruby711: I just reserved a copy of "It's My Ovaries Stupid" from the library. Thanks for the suggestion.

    wishingonastar: I contacted the FFC today re: my new Rx's, and what my oncologist said about the testosterone dose. We should get that all squared away soon.

    Thanks everyone for caring and sharing.
    Have a sunny day.