ELSA / Anyone?....Questions re: Hormonal Treatments

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Nov 10, 2005.

  1. CAAnnieB

    CAAnnieB New Member

    Hi Elsa,(Or anyone who knows about hormonal issues)

    I was reading with MUCH interest your replies on the other thread re: your hormonal treatments.

    I was tested for some hormones...My Testosterone is low & my Neurologist/ Pain Dr. prescribed DHEA compounded Rx cream for me. It is very expensive, so I haven't filled the Rx yet.

    I recently went to my GYN Dr. for my annual exam. I brought up the subject of a missing libido (zippo!) to her, showed her a copy of my lab work showing low Test., & she prescribed Testosterone in a compounded Rx for me.

    My question is...Is the horse hormone you referred to in the Testosterone cream? I was going to get it, but now I'm hesitant until I know it's the right stuff!

    You take the DHEA AND the Testosterone? Are they supposed to work together? Is DHEA a precursor to Testosterone?

    What were your test results on Thyroid? Or are you treating with the T3 based on symptoms? I'm convinced that I have a Thyroid problem, but my numbers were "normal". I'm either going to see an Endocrinologist or seek out a Dr. who will treat based upon my symptoms.

    One more question!...Do you know if we can be tested for our Serotonin level? So many Dr's want to prescribe AD's, but how do they know that a low Serotonin level exists & needs treatment? I'm currently taking 5HTP (precursor to Serotonin) as prescribed by my Holistic Dr. I take it at bedtime to help with good sleep, but I think it's lost it's effectiveness. (Been on it for almost 2 years)Maybe I don't even need it & it's a waste of my $!!!!

    Any info or advice you can impart is appreciated! Thanks bunches!

    Blessings & Hugs,
    [This Message was Edited on 11/10/2005]
    [This Message was Edited on 11/10/2005]
    [This Message was Edited on 11/10/2005]
  2. CAAnnieB

    CAAnnieB New Member

    Bumpity Bump!
  3. maripat

    maripat New Member

    I'm taking Estratest. It is a compound of estrogen and testosterone. Between the night (and daytime) sweats and my libido in the garbage can I needed something. Estratest has been a lifesaver.
  4. CAAnnieB

    CAAnnieB New Member

    Thanks maripat & vilke! I will research what you have shared with me. So much to learn!

    Bumping for Elsa...

  5. elsa

    elsa New Member

    I've had an "on the go" kind of afternoon and night, so I just ran across your post .... sorry for the delay.

    It might be easier to follow my treatments if I listed what I was diagnosed with first: 1. Hypothyroidism, 2. GH Deficiency, 3. Pituitary Dysfunction, 4. Adrenal Insufficiency and 5. Testosterone Deficiency

    My doctor used both resources in diagnosing what was wrong ... unbelievable blood testing and many, many symptom questions.

    Some of my deficiencies were clear to see for even the most difficult of docs ... Testosterone, GH, Cortisol ... Others were out of wack but not so horribly blatent though noticable even to the lay person.

    On your testosterone questions ... you can go ahead and fill that compounded rx ... no "horse hormone" in it. The same synthetic progesterone rx'ed in conventional HRT is generic medroxy-progesterone. Yep ... If my male horse is acting too "stallion-like" I'll start him on 10cc medroxy once monthly IM ... This is also found in the birth control shot Depo-Provera. Just not going there you know?!

    My testosterone treatment is testosterone cypionate ... an injectable. I give myself an injection once a week IM. It is the quickest, most effective delivery system and my testosterone was way, way low. Also, injections and sublinguals by-pass the liver and reduce the risk of stomach acids degrading the hormone.

    You're right that DHEA-S is the precursor to testosterone. It's made by the adrenal gland and is the building block to ALL the steroid hormones .... not just testos. With my adrenal gland not doing it's thing well, we are supplementing DHEA directly. ...

    As for treating low testosterone with DHEA instead of testos., ... I think it ends up being a gamble. Since DHEA is the precursor to many hormones and if only testosterone is low then it might be the conversion process that is defective, not the amount of the precursor.

    By adding DHEA, you may end up just making more progesterone and continue to remain low on testosterone. This is just an example, but I hope you see what I mean.

    My blood results showed not only DHEA-S too low, but pregnenolone and cortisol as well. These all support my adrenal insufficiency diagnosis ... and we are replacing them directly for the moment ... Cortisol will only be temporary ... 3 months or so, give the AD.Gland a rest so it can get back up to speed on it's own. My DHEA supplement is DHEA/Pregnenolone 25mgs/100mgs.

    I might hold off filling your rx compounded DHEA ... this is available OTC still and you could very well find a trustworthy supplement to take instead. Just a thought. Oops, unless you live outside the US ... sorry, I tend to think we are all next door neighbors!

    As for treating your testosterone ... get whatever delivery system you like best and fill it. I cannot list all of the symptoms we CFS/FM'ers suffer that can be directly traced to testos. deficiency, but the more obnoxious ones are muscle pain and weakness, loss of libido, decreased energy and well being and cognitive function. ... Sound familiar?!

    I think the majority of people with CFS/FM are also hypothyroid. This particular subject still makes me see RED!! We just did not ... do not need to suffer like this, yet we do everyday .... based on uneducated, closed minded doctors! Whew ... this burns me up and I have good docs!

    If you had the "big three" thyroid markers tested only, then I am not surprised it came back normal. What's needed is Free T4, Free T3, reverse T3 ... T4 is inactive, but available to be converted to the active T3 if needed.

    reverse T3 is an inactive by-product. It inhabits the conversion process ... it also compounds the problem by using up the enzyme involved in the whole T4 to T3 conversion process.

    T4 has a choice ... it can convert to usable T3 or it can convert into rT3 that does absolutely nothing for us ... This robs us of the active, much needed T3.

    My thyroid blood tests showed T4 just a little low, but not bad. T3, again, low ... but not glaringly so. My rT3 was very high ... this means that I have the ingredients, but am getting robbed of the needed active form. I had all the hypothyroid symptoms too.

    I take compounded T3 ... not at my optimal dose yet .. still going through the climbing process. I can tell you that immediately my diffuse hair loss ceased to be! I am getting more and more tolerant to colder temps. I have more energy ... not there yet, but an immediate improvement. I'm thrilled!!

    That's a good question about serotonin levels being checked and yes all the neurotransmitter levels can be done. If it were me. I would google it first, then read up on which doc can do this for you. My first thought would be my ND .. Look for one knowledgable in amino acid and neurotransmitter therapy. They are definately out there.

    I have to watch my serotonin intake ... too much will suppress REM and that's my particular sleep disorder ... Zero REM. Sigh ... this illness is sooo complicated!

    I don't have hugh faith in an endocrinologist being what I term "fair" in treating CFS/FM patients. I am fearful that if the numbers don't scream "diseased", then they won't do a thing to help. I looked to integrated, anti-aging docs with an interest in CFS/FM.

    I hope this helps you somewhat. I can honestly say that I am feeling better and better every week! Oh, I forgot, I'm starting 100mgs compounded progesterone on day 14 of my cycle at bedtime ...

    I'm estrogen dominant and hate it when progest takes a nose dive after ovulation. I don't seem to "come out of it" 'til around day 9. It sucks! But help is on the way!

    I apologize for the length of this post ... I couldn't figure out a way to share what you needed without linking it all together. It's all so delicate ... I feel it's best to treat all of the wacked out hormones at the same time. It seems they rely heavily on each other. The treatment is kinda like a reverse domino theory!

    Ask any questions if you come up with them ... It makes me feel good to be at a stage in my illness that I can maybe help someone else in their recovery or treatment decisions.

    Take care,


  6. CAAnnieB

    CAAnnieB New Member

    Thank you, thank you, thank you! You have given me so much to digest & to research! I truly appreciate your reply/experiences/ info. I am SO convinced that many of my symptoms are due to hormonal imbalances. Some of my Dr's (Holistic & my Neurologist/ Pain Dr.) have begun testing & seem to have some knowledge of the FM-related hormonal problems....BUT, it seems we have just touched the tip of the iceberg. I am investigating going to a Dr. in Sacramento, CA who treats patients similar to Teitelbaum's protocol...a Dr. Michael Powell...Another member here, Wasabi, is being treated by this Dr. & he seems to delve more into the complete testing such as is done at the FFC's. I just found out yesterday that he is covered by my insurance, so that's even better! Of course some of the testing may not be covered, but the office visits will be.

    I'd go to the FFC except I simply can not afford their fees...But I am going to be persistant in my quest to get to the bottom of some of my symptoms. I'm not one to sit back & accept what can possibly be improved!

    Thanks again. If I come up with further questions (which I'm sure I will!) I'll post again...

    Hope you have a great day! I'm VERY happy to hear you are seeing improvement in your health! Yipee!

    [This Message was Edited on 11/11/2005]
  7. lilbird

    lilbird New Member

    My OB here in Santa Rosa checked my hormone levels several times in the last few years. He always told me that they were fine.

    When I first started at the FFC the Dr. could tell just by my questioner that they were out of wack. And sure enough when he did blood work they were very low. He said my progestorone was lower than an 80 year old women. I'm 45.

    He started me on progestorne, testostorone, estrogen and thyroid T3. All bio-identical. Bio-identical are made from plants and do not contain any horse hormone. They are suppose to be lots safer for us.

    When your thyroid was tested did they test your reverse T3? Allot of Dr. don't, but this seems to be a big problem for many of us. If your reverse T3 is to high it will block your T3, which is what you body needs.

    One other thing. I am working on finding a Lyme Dr. in our area. My Dr. has me on a few leads and I think one might pan out. I will keep you up to date.

    I just reread your post and it doesn't really say if you OB is using bio-identical hormones, is he? If so, who is it? I do have the name of one Dr. in Santa Rosa that does us them. I haven't found anyone in our area that takes insurance.

    Wanted to also tell you...... we were talking about Dr. Gordon, and how someone got Hep B from his office. Well, my Dr. told me that she had heard that they do reuse needles. I think I will stay away from there.

    Hope you have a good day.