testosterone

[ashley]

Hi Dusty,

I'm curious about the amt. of testosterone you take. Dr. F suggested a total of 2.5 mg/day for me, delivered in Duragel (compounded) twice per day (1.25 am/1.25 pm). I have no idea what a usual dose is....

ashley

[ashley]

I'm guessing Dusty you're at a race (hope it's going well!)
Certainly if anyone else takes testosterone, I'd love to hear about your experience!

ashley

[Idaho Dusty]

Ashley,

Sorry!!!!  I did have a race this last weekend and clients in town and school starting.  Last week was hectic!!!

I am on 2 g of testo.  Bless my GPs heart but he doesn't know the first thing about replacement but he does encourage me having the hormones I am supposed to have.  I take 2 g compounded at night.  I will admit that I have been sloppy with my testo research and with testo application (probably too much)

I will start breaking mine up 1g in the am and 1g at night since if that's what Friedman is telling you, it's got to be right.

My last labs were high for total serum testo (don't have the numbers right here) BUT my % free was in low to middle.  My GP didn't know what that meant but he was going to get back to me.  What is says to me is that my SHBG is binding to the testo, leaving very little bioavailable.  Despite having high serum testo, I have no symptoms of inappropriate hair growth, voice deepening, etc.

I LOVE the testo and I feel so much more "even" on it.  My endurance is appropriate for my activity level and my muscles are finally developing like they ought to, not gross, just appropriate.

That was probably wayyyyy more than you wanted to know!

:) Dusty

[ashley]

Thanks!

I guess you must mean 2mg, and not 2 g - that would be a lot!! Both my serum and my free test were low, but the free even lower than the serum. (my SHBG was high). Hope I get some muscles too!! :)

[Idaho Dusty]

Yes, you're right 2 mg!  2 grams and I'd look like the incredible Hulk.  My husband would be upset.

Before supplementation my serum, free and % free were LOW.  Now serum and free are high, % free in normal range.

Do you know why your SHBG was or could be high?

You will get muscles!!!

:)  Dusty

[ashley]

No, I don't know wny the SHBG was high. It could have been because I was tested while on progesterone, that might affect it according to Dr. F. It could be some other reason. Not sure.

I have already noticed more energy. But the last few nights I haven't been able to fall asleep (thats why I'm up now). Wonder if it's from the testosterone. Any tiny thing can give me insomnia. I'll give it a few more days, could be a coincidence. If it persists, I could try taking the total dose in the am to see if it makes a difference.

I feel so, so much better than a few months ago! But still am working on adjusting meds - does that ever really end? I need enough steroid to cover my active life, but don't want to much. I need testosterone, but not insomnia, I'm sure I'll figure it out eventually.

Congratulations on your races.
And thank you for being the most positive and encouraging person I know. Well, we haven't actually met, but still. It's really amazing.

ashley

[ashley]

ps - it wasn't way more than i wanted to know - i always want to know everything because it's really helpful. did you notice any improvement in libido? my husband is really hoping...:)

ashley

[Idaho Dusty]

Ashley,

I'm so glad you're feeling better!

Thank you so much for the complements, I really appreciate them.  I have a feeling that we'll meet in person one day.  It took me 7 years to meet Wanda, a fellow Addisonian, and it was worth the wait!

As far as adjusting meds goes, nope, it never ends.  

Libido better, yes!  Better yet, skin was getting like tissue paper, if you know what I mean, and it's toughened up to normal.  Now that might be TMI!

:) Dusty

[ashley]

I'm glad too.

By the way, the insomnia passed after a few nights. And so did the low steroid feeling (I'm now back to .25 DEX pm plus 5 HC am) - I think I'm just really sensitive, no wait, I *know* that I am really sensitive to changes, and even when they are needed, it takes some time for my body to adjust.

I think we'll meet too - maybe you'll come to med school in VA :)

ashley

[ShannonD]

I agree with Dusty.  I had my "sex hormones" measured.  Progesterone, and testosterone were really low. and estrogen was actually really high.  

I am using both testosterone and progesterone.  I use 1gm testosterone in am and 1gm in pm.  I sleep better.  AM dose makes me feel stronger, and PM dose makes me sleep well.  I have definitely noticed increase in libido, and generally feel quite well with it.  Not too hairy yet, no acne., and my voice is actually increasing in pitch since I started the thyroid med.

From past and current progesterone use.....that will make me teary, sad if I over do it. At right dose it helps me sleep, not get to sleep, but better quality of sleep.

I do not think that starting the testosterone affected my HC.....but who knows.  I did just recently make that change.
Shannon

[Idaho Dusty]

You are sensitive AND you're really good at paying attention to it too.  That's awesome.

Virginia is warm, I'd definitely move there.

:) Dusty

[dollsie]

Hi Gals,

Did all of you use saliva tests for the estro/progest/testo? I spoke with my endo today and he said he wants to start with blood tests, because the last two estrogen measurements have been blood tests. He said he expects everything will be low (estrogen had dropped significantly last time). Even if things come back like we expect, is dosing of the replacement hormones more accurate when a saliva test is used? I will be using bioidenticals.

Also, he wants me to have everything drawn on day 15 of my cycle, but since everything has stopped, I don't know when that is! Does it even matter at this point?

p.s. Thanks for writing about libido and the other "personal" kind of stuff. I've been feeling like a total freak in that department, and it's put a strain on my relationship. I keep telling my guy that once the hormones are straightened out, I'll be myself again...I know he wants to believe that, but so far nothing has really turned out like we thought or were told it would. I'm sure everyone here can relate, which is why I'm so grateful for this forum.

I'm just still a blob in pretty much every way, and to be honest I never feel good. Getting really tired of searching for "what else might be going on", as my docs have put it. Saw the rheumy yesterday, and she wants me to go to NIH. Sometimes I think it's more simple than they suspect...I mean, enough vitamin/mineral deficiencies can make a person feel really bad, right? I'm to the point where it doesn't really matter to me WHY my T-cells have gone bananas or whatever. I think I'd do better with an integrative doc and am looking into that now...has anyone here been treated by (or heard anything about) Dr. Bruce Rind in D.C.?

I'm so happy for everyone who's turning the big corner and exercising again - WAY TO GO!!! Okay, truthfully I'm jealous, but only in a good way. Your stories give me something to focus on, and I know it took a lot of patience and tenacity for you to regain some sense of normalcy...

Thanks a bunch as always,
Leigh

[ashley]

Leigh,

Hang in there. It will get better! I've only had blood tests for hormones - never saliva.
I've read Dr. Rind's website, but don't know him other than that.
 I totally understand that the search for "something else" can be exhausting. In my opininon it's best though to fix all of your hormonal imbalances first. Then, after that, if you still don't feel well start looking for the "something else."
I'm not a doctor, but your case does sound like there was an infection involved. A trial of something like doxycycline might really help you. But I'd deal with the hormones first.

ashley

[Mandy]

Do yo get low tesosterone with Addisons then?  I have low tesosterone aswell..x

[ShannonD]

Mandy,
50% of testosterone in women is made by the adrenal gland, so yes most female addisonian's will get low testosterone.
Also the ACTH secretion assosciated with addison's can interfere with the pituitary's message to ovaries, so there is a possibility of becoming estrogen dominant (and having low progesterone).  There is a possibility that this balance improves on hydrocortisone, but should be checked.
Shannon

[Idaho Dusty]

Also, there's a possibility of the ovaries crapping out all together if your adrenal problems are autoimmune...ACK!  What a pain in the butt!

:) Dusty

[dollsie]

Hi everyone,

Wondering if anyone could pass along good scholarly articles on testosterone dosing in women?

Saw my endo this week and we talked about my nonexistent testo...he agreed that I need it but he won't prescribe! Says it's just "not something they do", there aren't enough studies about dosing, etc. He wants to recheck my estro/progesto. He says if they're low but my FSH/LH aren't high, he'll give me something to stimulate my periods again (not the same as HRT apparently). He has no intention of replacing testosterone.

The doc I may use to treat the Lyme is a holistic guy. He already wrote me a script for estro/progesto if I need them (I'd still want to have them checked again, just to make sure they're really low). He says it doesn't matter if my FSH/LH are high, I need the hormones either way and the HRT itself will make me get my periods again. He will replace testosterone too, just wants to start with the female hormones first. I'd like to avoid getting my wires crossed here, have a feeling the endo would be pretty put-off if I got my meds from someone else.

I'd appreciate any advice on this. Feeling kind of stuck, and not sure what to do. I just want to feel better, and I hate how these little things are so hard sometimes!

Thanks,
Leigh

[Idaho Dusty]

Leigh,

Compilation of testosterone scholarly articles

If your endo isn't willing to replace a hormone that your body makes normally, I'd find a new endo.  Can you just use your Lyme doc?  

I love my testo.  It makes me feel more even and "normal".

Keep your chin up!  I have no doubt that once you get the Lyme treated your life is going to be so much different and you will feel so much better!

:) Dusty

[ashley]

I agree with Dusty, the testosterone makes me feel more even too. I don't know how to describe it another way. Unfortunately, I don't see any change in libido. It might be that I will need to replace estrogen and GH too - waiting on tests-  so that could be part of the issue.

ashley

[dollsie]

Hi Dusty and Ashley,

Thank you both so much for your quick replies and this great info. I know I always say this, but you really are the best. I'd feel really alone with all of this without you all. Today is a really rough day for some reason - just feeling overwhelmed. But I know you've all felt like this too, so I shouldn't complain!

I'm so tired of going from doctor to doctor (especially endos). I'm actually really limited now, because apparently some of them know each other - the last time I tried to make an appointment with a new guy, his office wouldn't even let me, since I'd already seen one of his "close colleagues". The receptionist said it was a conflict of interest. I was about to pitch a fit, but then realized I wouldn't want someone like that treating me, anyway. Unreal how many of these guys are completely unfamiliar with AD, not to mention polyglandular syndrome.

I may end up being managed completely by the new holistic guy. Technically he's Family Medicine, but he's more familiar with the thyroid-adrenal relationship than any endo I've met, and willing to adress the nutritional problems too, write my scripts, etc. My BF thinks that once I'm feeling a little better, I won't really care about who my doctor is anyway. Hope he's right!

If I end up taking the progesterone, will it affect how much testosterone I need? I still get my periods, they're just few and far between. Should I wait until the FSH/LH go up before starting the estro/progesto, even if my numbers are low?

Thanks again,
Leigh