Testosterone Levels - need your help

[omerbasket]

An hypotheses came up to me today and I want to see if it holds up. I need your help for that (at the end I'll tell you what my hypotheses was, and hopefully we can see if this hypotheses looks good or not).
What I need is from everyone who ever been tested for Testosterone, Estrogen, Progesterone and Cortisol to write the results of all of those tests of his (unless it's too many, and then just use the ones you'd like), along side with the reference values in each test, and tell us how severe his ME/CFS is in his opinion. It would be best if you will rate the severity of the illness that you remember you had when the blood for the test was drawn, but if not just tell us how severe is your illness in general. Let's use the following terms:
1. Mild.
2. Mild-Moderate.
3. Moderate.
4. Moderate-Severe.
5. Severe.

If you've a XMRV test result/s - it would be helpful if you'll share it with us.

Choose the level of severity according to what you think is correct - I don't want to get into formal scales here, it's just in order to see if it's the right direction.

 

[omerbasket]

So, I'll start. I have to say that although my current doctor treats me as if I have CFS, and perhaps she thinks so, I'm currently not formally diganosed with CFS under the fukuda criteria, not to mention the canadian criteria. I'm, however, diganosed with fibromyalgia, although in the last year and a half my primery problem is the felling of fatigue and malaise, like a flu in the stages when you feel better but you are not yet recovered.

These are the testosterone tests I've had up until now:
19.2.2008: TESTOETERONE-TOTAL - 12.5 nmol/L - NORMAL - Reference values: 8.4-28.7 nmol/L. At that time my illness severity was modrate (actually, in those days I first began to feel fatigued and feel like I have a flu)
26.10.2010: TESTOSTERONE-TOTAL - 7.8 nmol/L - LOW - Reference values: 8.4-28.7 nmol/L. At that time my illness severity was mild-moderate (a little bit closer to mild than to moderate).
28.11.2010: TESTOSTERONE-TOTAL - 6.9 nmol/L - LOW - Reference values: 8.4-28.7 nmol/L. Also, FREE ANDROGEN INDEX (which is suppose to tell you how much free testosterone you have, but I've heared that it's not a good test for a man, and I'm a man...) - 64.5 - NORMAL - Reference values: 28-80. At that time my illness severity was mild-moderate (a little bit closer to mild than to moderate).

I sure hope you'll write your results down as well.

 

[August59]

Omer - I think "Total Testosterone" is the least accurate as it includes the testosterone that is bound to "SBGH" (I think). Not that "Total" is less important, but the "Direct" or "Free" is what many watch more closely. I'm having plenty of problems related to this and other hormones and I'll have to finish this in a few hours.

I also think keeping hormone levels sufficient and balanced for health are a greater concern than androgens causing XMRV replication.

 

[Elisa]

Hi,

I am female - but have super low (out of range) testosterone - so my doctor wants to treat it...so here are my labs:

Testosterone 34 (range 0-70) ng/dL
Testosterone, Free 0.18 (range 0.10-.80) ng/dL
% Free Testosterone LOW 0.53 (range 0.59 - 1.59) %

I have moderate at best - to severe ME/CFS/FM - very restricted, mostly housebound.

I am hesitant to take the testosterone because of androgens feeding viruses/retroviruses - and it causes me anxiety - but my doctor feels it important to at least bring it up to within normal range.

Love to hear your theory.

Elisabeth

 

[omerbasket]

I'd like of all of test results - free testosterone, total testosterone, direct testosterone, cortisol in blood and in saliva, progesterone and estrogen, and if you think there is something else relevant - bring it on!

It seems that XMRV loves androgens, cortisol etc. My theory is that the higher your androgens and cortisol, the worse you're feeling. However, I don't know what our body does in that situation. I mean, it might be that our body recognizes that higher androgens and cortisol helps XMRV, and therefore lowering those levels. It doesn't seem that way in my body, but anyway I have no idea if I'm XMRV positive or not.

 

[heapsreal]

Ranges will vary depending on the labs and country, anyway heres my labs
Total T 20.8(10-33)
Free T 41.5(60-130)
dhea 2.1 (2.2-15.5)
E2 147 down to 119 with arimidex(1/2mg twice a week) (40-250) optimal is suppose to be around 90
Prog 2(<3)
Cortisol(morn blood test) 280 (220-660)

Now i did start on a dhea/pregnenolone(50mg each) cream which started well but after a few days sleep worsened and became very adgitated, so stopped and talked it over with my doc who then just suggested pregnenolone by itself at a lower dose as preg increases dhea as well as adding dhea also. While waiting for my pregnenolone cream to come through i started again on the dhea/preg cream but at 12.5mg, it has helped with energy but feel theres more room for improvement with possibly increasing just preg. So i recieved my preg cream today and will start on 25mg a day and see how it go's and maybe increase to 50mg and after a few weeks get more testing done. So far i have dropped and inche on my guts without changing my diet which is always low carb but over the last few years all it was doing was stopping me from gaining weight to quickly. I have read once pregnenolone levels are right and its stabilizes cortisol levels, sleep improves, i hope so. Creams of preg are said to be alot better the tabs as they are absorbed slower and more evenly, tabs can make people fatigues apparently

 

[heapsreal]

With hormones and xmrv, im not real sure where i stand but i do know that with hormones that are out of whack causes alot of problems also, fatigue, increased risks of cancers etc as well as a poorly functioning immune system. I think chronic infection like we have eventually cause adrenal fatigue, which for me is shown in my dhea levels. So when it comes to hormones and treatment i think its a personal thing u have to weigh up, poor hormones has concequences also???

cheers!!!

I'd like of all of test results - free testosterone, total testosterone, direct testosterone, cortisol in blood and in saliva, progesterone and estrogen, and if you think there is something else relevant - bring it on!

It seems that XMRV loves androgens, cortisol etc. My theory is that the higher your androgens and cortisol, the worse you're feeling. However, I don't know what our body does in that situation. I mean, it might be that our body recognizes that higher androgens and cortisol helps XMRV, and therefore lowering those levels. It doesn't seem that way in my body, but anyway I have no idea if I'm XMRV positive or not.

 

[heapsreal]

have remember that when testosterone go's up so does estrogen and this causes alot of the problems people have, as we age we aromatise more testosterone to estrogen, so then we need drugs like arimidex to get estrogen to the right levels, too lower a level can make u feel like crap as well, controlling E2 can help increase FreeT levels

 

[Marco]

Hi Omerbasket

I don't have all the data you were looking for but I do have some of it covering most of the course of my illness (1985 to date) and have included total cholesterol for comparison.

1986

Total T = 25 nmol/L (10.5 30)

Mild to moderately affected.


1999

Total T = 14.9
Total T = 11.1
Total cholesterol = 5.9 nmol/l

Now moderately/severely affected (since 1997) with many new symptoms including flushing and rapid weight gain (12lbs in two weeks!)

2000

Total T = 18.2 (10.5 30)
LH = 2.6 u/l (1.5 9)
FSH = 3.1 u/l (1.5 9)
DHEA-S = 5.2 umol/l (3.3 11.3)

2001

Total cholesterol = 6 nmol/l


2003

Total T = 14.9 (10.5 30)
LH = 2.0 u/l (1.5 9)
FSH = 2.9 u/l (1.5 9)
Total Prolactin = 117 (< 350)
Oestradiol 17B = 112 pmol/l (< 160)


Total T = 16.5 (10.5 30)
Oestradiol = 76 pmol/l (< 200)
Total cholesterol = 7 nmol/l

2005

Total cholesterol = 7.5 nmol/l

By now moderately/severely affected and unable to work. I haven't had any tests since.



Unfortunately the UK don't routinely test free T this even includes a professor of endocrinology. One thing to bear in mind is that the ranges given are for all ages. Male Total T is expected to fall by some 25% from peak levels in late teens/early 20s to those in their seventies. Mine more than halved in just over ten years and I suspect I may be a 'fast aromatiser'.

Looking forward to your theory!

 

[heapsreal]

in reguards to cholesterol, have heard that LDL cholesterol can be high if pregnenolone levels are low, this is because all hormones are made from cholesterol and pump this stuff LDL to try and raise pregnenolone and other hormones,once on pregnenolone they notice their LDL numbers dropping. Also men on trt need to supplement with pregnenolone as now all these other down stream hormones like dhea, cortisol, progesterone are depressed from Testosterone therapy, this can be another reason why guys feel crappy on testosterone too.

 

[omerbasket]

Thanks people!
I hope some more people would share with us their test results, and anyway, when I'll have some time I'll look at it and see if we can get some hint from those results (others are welcome to do that as well...).

 

[SilverbladeTE]

Well, in my case:

Background - I'd say I have "medium severity" ME/CFS, can go a shrot walk 1/day, do a little housework etc.
I've had ME/CFS for 16 years, for about 5 or 6 years it was "mild", then got far end of "medium" after going to college which caused havoc with my health, so I got checked for brain and breast cancer.
Initially the consultant I saw was one of the scum who think ME/CFS = "malingerer" and ignored all the tests and left me to rot for three years...
when his senior finally looked at the case he blew his stack at him for making such boneheaded mistakes.
I had "less testosterone than a 90 year old man" in his words. I was about 30 at the time, and prior to getting ME/CFS I had routinely done weight training/martial arts and was built as we say here "like a brick ****house*

My pituitary was not producing the precursor for testosterone triggering, though he never said any specific amounts except basically "Zero"

After this I wa sput on Nebido testosterone shots which greatly helped (they stopped the, you know sensation of having your insides/energy sucked out of your navel? stopped that, thank God, and helped in other ways to a degree making life much more bearable)

that's my experience on this side of the issue

 

[free at last]

I'd like of all of test results - free testosterone, total testosterone, direct testosterone, cortisol in blood and in saliva, progesterone and estrogen, and if you think there is something else relevant - bring it on!

It seems that XMRV loves androgens, cortisol etc. My theory is that the higher your androgens and cortisol, the worse you're feeling. However, I don't know what our body does in that situation. I mean, it might be that our body recognizes that higher androgens and cortisol helps XMRV, and therefore lowering those levels. It doesn't seem that way in my body, but anyway I have no idea if I'm XMRV positive or not.

This is interesting Omerbasket. sorry i havent been tested for hormones
But would levels of hormones alter dramatically before and after sex, and if thats a yes. next question do patients feel better or worse after it. what a poll that would make lol. Hope others that have tested for this reply. As its really a important question your bring up here,

 

[omerbasket]

I can tell you that I'm diagnosed with fibromyalgia (althought my doctor seems to think that I've CFS) and after sex my pain levels are significantly elevated.

 

[taniaaust1]

Ive had 13 years of canadian criteria CFS/ME, diagnosed offically with CFS/ME by three different CFS specialists.

Tests are interesting things as depending on what type of test you do exactly for the same thing eg cortisol, testosterone.. one gets completely different results from them.

Cortisol .. 13th June 2006 (Random Blood Test) NORMAL 231 nmol/L (normal range 120-620) .. My CFS/ME at time was semi severe
? ? 2007? (24 hr Urine Test LOW 46 (normal range 50-350)
? ? 2008 (24 hr Urine Test) LOW 48? 49? (normal range 50-350) (I wasnt as bad as 2006 CFS wise)
18th Mar. 2008 (24 hr Urine test) very low normal 51 nmol/L (normal range 50-350) (I was in pain and had over exercised just before this test which would of been lower and out of range if i hadnt. Specialist had told me to try to exercise day before to see if it brought up cortisol level into normal range. Pain and exercise only made it move up a 2-3 nmol/L which I believe is probably abnormal response).
31st Oct. 2008 (Random Blood Test) NORMAL 458 nmol/L (normal range 120-620)

Note.. my low cortisol level only shows up on 24 hr urine testing.. but im mid ranges when its taken by blood tests at 10am. I wonder at what time it goes so low that it affects my 24 hr urine results. (studies have shown that a third of CFS women have low cortisol in the mornings). Taking cortisol for the low cortisol didnt make me any better or worst.
..........

Testosterone another tricky thing as my testosterone is in normal range with some tests but when my free testosterone level is taken I have none really available to me. Specialist said that free testosterone is the test you need to go by.

Testosterone.. 5th Sept. 06 NORMAL 1.9 nmol/L (normal 0.4-2.7)
31 Oct. 08 NORMAL 2.1 nmol/L (normal 0.4-2.7)
2010 the standard testosterone tests came back normal
free testosterone test LOW (Specialist ended up giving me a testosterone implant due to it... testosterone implant may of worsened my CFS/ME symptoms with me feeling more tired and I felt aggressive).

(Note.. before I got CFS/ME my testosterone was too high, Ive got PCOS .. the CFS/ME has dropped my testosterone from abnormally high to low.. and I believe CFS/ME also dropped my cortisol out of normal ranges too)
..........

My Estrogen, Progesterone are always in normal ranges but I do get too much estrogen (shown by excess half developed follicles in my ovaries PCOS, I also have reversed FSH/LH with the PCOS.. the too much estrogen issue started before I had CFS/ME).

Other hormones I have issues with is Vitamin D2(that is actually a hormone) very low (im meant to take 4000 IU per day)
13th June 2007 D2 VERY LOW 32 nmol/l (normal range 60-160 nmol/L
17th July 2007 D2 VERY LOW 31 nmol/L (normal range 60-160 nmol/L) (It went down more after a month of supplementation!)
My D3 thou is in normal range
my insulin is HIGH (hyperinsulinemia) so that is being treated too..

One thing I do know that when my CFS/ME was very bad due to over doing stuff which caused relapsing (bedridden half the time), on a couple of occassions my blood sugar came back very low...so obviously it affects that. glucose Feb 2008 VERY LOW 2.4 mmol/L (normal 3.0-6.9)
April 2008 LOW 2.6 Hypoglycemia

Ive got a theory that maybe some my hormones have all dropped and still dropping (except my insulin) as a protective mechanism, to trigger off XMRV less?? I havent been tested for XMRV yet.

(my adrenaline on a relaxed non pain, non stress day came back as 0.12 umol/24 hr (24hr urine testing) HIGH (normal 0.00-0.08) ..so obviously something is wrong there too. (they did the test on several different occassions as the results kept "coming back strange" (way too high??) that they said the test must of gone wrong). 3 out of 4 tests came back as abnormal.

 

[Grape Funk]

Idk about my levels, but i started seeing symptoms of cfs 4 years ago, when i first had a steady girlfriend(hormones probably going crazy) and possibly had ebv, as 5 months later had mono on top of/with CFS.

 

[omerbasket]

I finally checked the results that we have so far. I put it into an excel chart, which you can all see here (the download link is not in the banner, it's down on the right side):
http://www.2shared.com/file/pVcWNRQ5/testosterone.html

I've written down every test I could - some wrote values, some didn't, I did what I could.
Currently, in ME/CFSFORUMS.com and here we had 9 people (including myself) who wrote their results. Of those 9, 8 had sometime in their life a testosterone test which came back low (it was either for total testosterone or for free testosterone - mostly total testosterone). The ninth ("Marco") did not have a test which came back low, but he was also very close to it, when he had a total testosterone level of 11.1 nmol/L while the reference value was 10.5-30 nmol/L. Right now I did not find another interesting substance, but if you will write about the other substances in the chart as well it might be good.

These data are interesting, but I have to say - I strongly suspect that almost only people who had abnormal levels of testosterone have submitted their results. It would really be good if anyone who had ever been chekced for testosterone would submit his/her results (or even just say if it was normal or not), and then we would be able to know if we're on to something or not.

 

[taniaaust1]

Omerbasket.. i think we may be onto something too with this. I would of expected at least a couple of people for the amount of people who responded, to have commented saying they had normal testosterone levels.

(How many out there of us have had normal "free" testosterone levels?).

I guess one could randomly survey 10-15 people in the chat and ask them if they've had their free testosterone tested and if so how was it, that would give us an answer if there definately seems to be a connection or not. (if you do that.. please post the percentage of normal and low here, this has all got me very interested now).

 

[heapsreal]

Hi Taniaaust1, i take it by your name your female, anyway oneway a woman can increase her testosterone indirectly is to used dhea, it seems to work well for women but in men in seems to actually increase estrogen levels, dhea also has been known to increase free testosterone levels. As for cortisol, supplementing with hydrocortisol can shut down your own production, away arounfd this is to use a hormone called pregnenolone, preg is a down stream hormone and is used to make most other hormones that we need like dhea which then filter down to testosterone , it also helps with progesterone levels which then filters down to cortisol levels, as for the adrenaline this could be a counter measure for low cortisol levels as basically adrenaline is the quick energy maker and cortisol is the long acting energy maker, so adrenaline is trying to make up for low cortisol, maybe.

A good starting point is to use pregnenolone transdermal cream which u can get made at a compounding chemist with a prescription, 25mg would be a good starting point for women. Try this for 6 weeks and then retest all your hormones and see how much it has filtered down stream to top up other hormones etc and say for example dhea was still low then supplement with a low dose dhea, even if testosterone is low start with dhea next and retest in another 6 weeks as this can sometimes restore testosterone, if not then testosterone supplementation maybe needed but most women find dhea does the trick, but u might just get away with pregnenolone too. As for cortisol if still too low u can try and increase pregnenolone abit more, then if no luck, sometimes progesterone can help increase cortisol levels.

Hormone modulation can be tricky so definately hunt out a good alternative practioner who knows abit about hormone modulation. Its definately one of those things that needs to be functioning right to have a good immune system, but it has to be within the optimal ranges and not too high or too low.

As for vit D, prohealth sell a really strong vit D supplement 50,000 iu per tablet, i tried to get my levels up using 5000iu a day and didnt do much but then i supplemented these super strong tabs 1 a week for a few weeks and then i take 1 a month now and my levels have been within the high normal range.

cheers!!!

 

[SilverbladeTE]

As was saying in chat
IF the sysmptoms of ME are mostly an autoimmune response to an ongoing infection...

then part of that maybe lowering the testosterone level, hene, it's the PITUITARY that's involved, not the adrenals/testes themselves.
pituitary secrets hormone that controls testosterone output, and is part of the HPA AXIS which seems so involved in ME.


men have about 10 times as much testosterone as women and women are more susceptible to the effects of testosterone...
so if there is a disregulation going on, it could be that women SEEM to have ME more often, because having lowered amounts will hit them harder, as they have less to begin with AND more sensitive to its effects.

So, perhaps why we see more women with ME is merely because men will tend to be less affected by the testosterone isuse and thus, less likelyhood of being severely effected?
Could be we have equal amounts of this disease in male and female, but shows up more strongly in females?

obviously male psychology/culture is a factor as many men don't like coming forward about health issues and are really upset by losing their physical prowess (ok, so, we're still cave men! )