Blood test came back saying i have ZERO testosterone

[taniaaust1]

Due to having premenstral dysphoric disorder (PMDD) my gyno got all my hormone tests done again as apparently low testosterone can give bad PMS symptoms. (hadnt had all my female type hormones tested in 18 mths) and now my testosterone level which was high normal, (I have a beard so my body was over producing it) but my testosterone is now at ZERO. (im not even 40 years old)

So I ended up having to get a testosterone implant put under my skin.

So I just looked up to see what can cause testosterone issue and it says •Disease or damage to the hypothalamus or pituitary gland. can be one of the causes of low testosterone http://www.buzzle.com/articles/symptoms-of-low-testosterone-in-women.html ... so im wondering who else here has ZERO testosterone levels which CFS/ME may have factored in?

What dont make sense to me is that with zero testosterone, my sex drive is still high... it dont make sense, so Im now worried that maybe my testosterone levels are dysregulated with it going high at times and low at other times??? Is that possible?? Worried now that I may end up finding that I have way too high testosterone with the implant now in me if that is going on.

Im worried now cause i forgot that testosterone is a androgen .. and due to the study which said that androgens may increase viral replication of XMRV.. (what if my body has gone into damage control and zeroed out my testosterone as a self protection thing due to virus?). I tried to voice my fear to the gyno but of cause gyno didnt understand any of my fears of the XMRV stuff and didnt even know of its existance.

 

[Rafael]

" due to the study which said that androgens may increase viral replication of XMRV.. (what if my body has gone into damage control and zeroed out my testosterone as a self protection thing due to virus?) "

I am suspecting something like that happened with me (both the viral replication and the damage control). I wasn't at zero but well below normal range.
I ended up supplementing testosterone for a good while.
When I stopped supplementing - it coincided with an significant improvement in energy.
I didn't recognize the possible negative effect on my health when starting... because there were other things going on => e.g. had some amalgams removed => as I was deteriorating.
So my question to you, TaniaAust; have you noticed any energy swings as you've gone on testosterone ?".
Have you done any say month or two trials of going off ?

 

[Otis]

taniaaust1,

You are right to be cautious. I started testosterone and while it gave me some energy, it immediately threw me into a tailspin from which I have not recovered. My progression has been a steady and accelerating decline with no, even minor, improvements along the way. So in my case I didn't get an improvement when I stopped the testosterone. This convinced me that xmrv, or something very similar, is at work.

I hope you are able to achieve a stable, healthy level of testosterone. Hopefully your blood levels will get monitored. I expect that you're taking much lower doses than they would administer in a male of my age.

Best wishes,
Otis

 

[LaurelW]

I'm wondering about this too. I had my hormones tested recently and I was drastically low on everything except progesterone. I got a prescription for bio-identical hormones from a compounding pharmacy including cortisol, E3, prog. and testosterone. I've only been on it two weeks, but feel dramatically better. I'm wondering if wacko hormones precipitated my crash year ago, or the crash caused the low hormones. I'm hoping I continue to improve, as I can now go out of the house several times a week instead of once. The doses are pretty low, designed to raise me to the level of a postmenopausal woman, which I am. I'd like to hear more about other people's experiences with this.

 

[leaves]

I have the same, I am xmrv + and have very low hormones. i have had amenorrhea because of it for many many years. Drs have pressed me to take estrogen but i have refused. I think I would be a lot worse if I would take the estrogen.

 

[taniaaust1]

thanks everyone for the comments.

My gyno has a theory that me taking testosterone will also help to lower my estrogen levels. (so i guess if it does do that, it may be a good thing. Thou not showing on the tests, my body has produced excess estrogen (as i have ended up with polycystic ovaries. This is where too many follicles are grown at once due to excess estrogen).. I strangely have Polycystic ovulation syndrome but with nil testosterone (used to have highest testosterone thou). (my ratio of FSH and LH isnt normal).

already tried taking natural progestrone for several months but that didnt do anything either positive or negative. (Normal chemical synthesised progestrone, affected me mentally badly, natural fine thou).

Laurel.. as my cortisol is out of the normal range levels and low. I was on natural cortisol for 2-3 mths. That thou didnt do anything in my case thou postive or negative symptom wise.

So my question to you, TaniaAust; have you noticed any energy swings as you've gone on testosterone ?".
Have you done any say month or two trials of going off ?

I only got the implant of it yesterday (ive bled throu the pad they put over the insertion cut) ... so right now its way to early to say. Im slightly tired today (so taking things very easy today.. i wont do anything) but that is to be expected due to having the medical appointment yesterday.

I'll post what effects I think its having when I do know.

I expect that you're taking much lower doses than they would administer in a male of my age.

Yeah.. the female dose would be different.

 

[Rrrr]

i have talked about my own hormone issue due to polycystic ovaries and taking the antiandrogen med called SPIRONOLACTONE in another thread.

in fact, there are two threads where i/we talk about this stuff.

just search for spironolactone.

this med seems to be helping me!

 

[Rrrr]

here are the two threads

http://www.forums.aboutmecfs.org/sh...ng-me-spironolactone&highlight=spironolactone

and

http://www.forums.aboutmecfs.org/sh...-replication-of-XMRV&highlight=spironolactone

 

[xrayspex]

hormones, never had any luck with them, the only thing that seemed to help was vitex/chaste berry for pms, did take that for years and seemed to make me less bitchy etc and then it just seemed to become irrelevant so stopped. I was on the pill like at age 18 for awhle and back in 78 it was stronger and made me break out, who knows what else, wasnt in touch with body then.
Then in early 30s tried it again cus seemed to be getting endometriosis and cysts after cholecystectomy (after that surgery the start of real cfs/fm too) but the pill at that point could not tolerate it anymore felt crazy after 10 days and off it. Did herbs and acupuncture and quit cocacola and the cysts and endometriosis symptoms went away. But I still had killer pms but regular cycle and for 2 days of my period I would be almost bedridden and then back to sort of halfass functional cfs rest of the month, work in desk job ok.

Then period stopped at age 45 but there were no warnings on my hormone tests, they kept saying I was just barely in perimenopause but then I stopped my period completely and its been 5 years now. I tried bioidentical a couple of times but hated all of them, estrogen, progesterone and testosterone so didnt stick with it. Oh yea I had done small amount of progsterone sometimes for pms in the 90s along with the vitex but not as long as the vitex, but 3 years ago it immediately brought on like a fibro flare of pain (prog) and the other hormones made me feel prodomal, yuck.

but when had physical last week found out some stuff is not in a ready-to-go state, if you know what i mean, and I was thinking of trying to get back into the dating pool so she said I should take this stuff tht I am too embarrassed to say the stupid name of on a coed site but its something you use localized to have estrogen get things ready to rock again and she said its bioidentical and such a small amount and only acts in that area etc so I thought yea I will go for it, she doesnt know anything about cfs other than telling me a low drive could be sexual abuse or depression and I was like yeah well thats not me and then I gave her a lecture on the cdc propaganda towards women and cfs/fm the last 20 years, it was probably like a seinfeld episode where she wrote I am into conspiracy theories in my chart later, but anyway back to it, so the first 4 days of this stuff was good, and I was thinking maybe I felt a twinge better even though its not supposed to be systemic but I figured with my mcs maybe it would be like homeopathic estrogen, well then day 5 I got the killer headache and nausea that was totally to the point that is not acceptable so my plan is to get back to normal and then perhaps reapproach in much teenier dose and less frequent.

but now I wonder if that is even ok......anyone ever try that stuff? you can send me private note if prefr......

 

[Mya Symons]

I am wondering if XMRV can use synthetic hormones in the same way it uses the bodies natural hormones. Maybe there is something missing from the synthetic hormones that XMRV needs. I have not been tested for hormone imbalances but the doctor said it is likely for me. Sometimes I will have two periods a month and sometimes I won't have one at all for two or three months. Also, there are times I get break throough bleeding and when I do get my period it is extremely heavy. My doctor said something about estrogen, progesterone and luitenizing hormone being out of wack.

One more thing. Since you admitted it, I will too. I have had to use my husband's beard trimmer lately. I have little patches of hair.

 

[taniaaust1]

I have had to use my husband's beard trimmer lately. I have little patches of hair.

I cant wait to have some electrolisis or lazer therapy done on it to get rid of it. I think its about time i did thou it's costly. My gyno actually gave my boyfriend a lecture on how he should pay for me to have lazer therapy to remove the hair lol.

 

[taniaaust1]

I was on the pill like at age 18 for awhle and back in 78 it was stronger and made me break out, who knows what else, wasnt in touch with body then.
Then in early 30s tried it again cus seemed to be getting endometriosis and cysts after cholecystectomy (after that surgery the start of real cfs/fm too) but the pill at that point could not tolerate it anymore felt crazy after 10 days and off it.

Before i had CFS/ME i tried the pill (synthetic progestrone mini pill), within 24 hrs i had a weird feeling head and ended up feeling just crazier and crazier. I trusted doctors back then so thought I'd adjust to it and that feeling crazy symptom would go away. Unfortunately it didnt and i just got worst so two weeks later while still taking it, I ended up in a mental hospital for a week! (which of cause i stopped the pill then and stopped feeling crazy and got out of hospital).

I gave her a lecture on the cdc propaganda towards women and cfs/fm the last 20 years, it was probably like a seinfeld episode where she wrote I am into conspiracy theories in my chart later

ohhh lol, yeah i'd hate to see what is written up in my medical files by various doctors too.

i hope you get the hormone stuff sorted out

 

[taniaaust1]

im scared right now.. im like on the trip from hell and it seems like it may be the testosterone doing it to me.

i have this extreme intense anger hitting me in waves. The anger is so bad that its given me a headache and making me feel sick and stopping me from being able to go to sleep at all (its now 4.30am in the morning and ive been trying to sleep for hrs... the anger goes but then suddenly comes slamming back).

I dont know thou for sure as i have also borderline personality disorder.. but with that when something upsets me I tend to just get very upset, i very rarely get angry. I are upset with my partner as i feel like my feelings and thoughts have been completely invalided over my fears of having this testosterone but wouldnt expect to get angry like this. This anger i have now is weird (is it normal to feel anger in waves?????).

I emailed him earlier and called him names (ive only EVER done that once before and that time was mild.. but today around lunchtime, my email to him was really bad). That anger then left once i sent the emails... but this.. now?? tonight its come back even more intensely.. I almost get to sleep only to be hit by another wave of it. Im very confused what is going on. Im so angry that i had a horrid thought to kill myself to get back at my partner.. (dont worry i wouldnt do that!!! umm yes i would of tried if I had the right pills here.. im shocked by the thought i had during the intense anger).


Has anyone else here who has been on testosterone had any kind of strange anger response with anger from taking that hormone? I didnt believe it could be that doing this to me but are thinking that now it looks like it may be that as it's been happening for hrs so intensely with constantly coming and going and the whole thing is too weird. ive NEVER felt like what im feeling towards my partner before.

I should be asleep as i have a rare visit from my mother at 9.30am (5 hrs time).. looks like i'll going to be greeting her on no sleep at all.

 

[Rafael]

Hi Tania. Sorry you couldn't sleep ... that brings back a lot of bad memories.
I know our situations are very different but let me add a few things
- I was using compounded testosterone to put on my skin (legs/arms)
- I was able to get blood test monitoring a number of times.
- the dermal absorbance was way more efficient than by stomach (I did a month of pills first)
- I sometimes did experience anger (and predictably increased sexual desire) ...especially if I accidentally put too much on some days
- I definitely experienced a withdrawal on two occasions I went off of it cold turkey (a wilted plant kinda weakness).. but these lasted less than a week.
- My wife was complaining that the cream was getting on the bed and into her and she was starting to grow a moustache too.
- I am lucky all this is in the past for me.

 

[taniaaust1]

Not even 5 mins sleep last night at all. Tonight it is 12.17 am in the morning.. looks like a second night with nearly no sleep (i did fall asleep today for 45 mins). Today and tonight has been like i feel wired thou im tired.. too wired to sleep (i used to get that with the CFS/ME but many years ago).

Yeah.. when taking orally.. everyones absorption is far different so having implant gives specialist more of an idea of what is going on. i wish she had given it to me to try by putting onto skin.

thanks for sharing your experience. (tonight no anger waves... just the wired so i cant sleep thing)

 

[stefie]

According to an early TV inteview with Dr Mikovits & Mrs Whittemore. Three things that they know cause the virus to flare are inflamation, stress, and progesterone. Having said that, I have been on bioidentical hormones for 17 years during which I worked as a floor nurse 40 - 80 hrs a week and did fine until stress totaled me out 4 years ago. I originally had CFS in 1987 - recovered slowly over 4 years and then was fine. I worked, sailed, did major house construction. Then I crashed due to trying to take care of an uncoperative demented mother. Major Stress!!! So bottom line - I don't know what effects hormones have on me (I went on hormones because of sudden loss of hormones due to hysterectomy. Ovaries were also removed because of endometrious). If I have XMRV now I surely have had it in my body for atleast 23 years and hormones didn't seem to affect it. Hysterectomy was done during the recovery period and yet I made it back to normal while on hormones. One note - I have an excellent Endochronologist that I see about every 6 months and do testing to check the horomnes. I don't trust the average gynocologist to be up on this kind of thing and even the average endo doc normally doesn't know much. It takes a lot of searching to find the right doc for this. Suzanne Summers has a book on bioidentical hormones with a list of docs listed in the back. Our female body certainly is complex and can give us a world of problems even without CFS and viruses. Good luck on your search for normalcy - what ever that is.

 

[stefie]

should have worded that better. Normalcy - a state I haven't had in a long time and not sure I remember what it feels like. Sure would like to get back to it tho.