Role of testosterone in ME/CFS

meandthecat

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from Dr Bells talk
'You have to be able to explain why children get it in equal sex ratios. Why do [in] adults more women than men get it? Why do some people get better without treatment, up to 80%? Why do some people get disastrous symptoms in this area? So when you look at all these symptoms, these theories tend to fall apart fairly soon.'

I'm sure that somewhere I saw it mentioned that men over 45 get it more as well. This makes me wonder about the role of Testosterone as a protective of neural tissue. Again somewhere I saw a reference to Testosterone injections for treating MS.

I have been using DHEA and it seems to have helped a lot with cognitive issues though perhaps less with stamina. It has not been a quick fix but over 9 months a slow build.

I wonder if anyone has any thoughts on this as there is probably as much expertise here as you could find anywhere.

thamks ed
 

muffin

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Testosterone in women

My Testosterone levels were tested and found to be very low for a woman. I tried the bio-identical Testosterone to see if it would help with energy, pain, sleep. but it only made me angry and irritable.

There must be studies out there on what role Testosterone plays in men and women so we'll have to go looking. But my Internist said that "they" (the medical community) did not really know what or how much was needed, etc.

Others - chime in?
 

Navid

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just tested this a few weeks ago. my testosterone level is extremely low for a female too....haven't tried treating it. most meds i take just make me feel worse.
 
T

thefreeprisoner

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You know this theory may turn out correct, but not in quite the way you suggest.

This is from Judy Mikovits' talk the other day:

This U3 region is highlighted because this is sort of the on/off switch of the virus [XMRV]. This turns it on to make more of the particle in your genome so this signals your cellular machinery to start making more virus and what Steve Goth's lab showed (and he graciously gave me these slides about mid summer) was that there's only three responsive elements that turn on this virus that he can find so far. Two are called glucocorticoid response elements and they're shown here. When a protein actually recognises that exact sequence and sits down it tells the virus to turn on replication. And so interestingly enough, what turns on the virus? Hormones. Progesterone, androgen receptor and testosterone and we don't know all the other hormones.
If XMRV causes ME, it's hormones such as testosterone that turn it on... erm, I mean activate it.

Rachel xx
 

heapsreal

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i think they generalise too much about hormones turning xmrv on, cortisol i can see but androgens like testosterone have opposit affect then cortisol, so i wonder if it can strengthen the iimune system where as cortisol lowers immune system. Hormones are a yin and yang , always one that does the opposite to another, eg insulin and glucagon. just my thoughts, cheers
 
T

thefreeprisoner

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As I understand it (but I am generally a bit rubbish at science) the XMRV virus may have a receptor on it for hormones of any sort.
I doubt it is to do with the function of the hormone but just the fact that lots of hormones are running around.

Rachel xx
 
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yes, the yin yang effect may be in the immune system. But the virus may be a different story. It will react based on it's genetics, totally separate from the normal function of the immune system.

Tina
 
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Hi Ed:
Our CFIDS Specialist keeps a CLOSE eye on my sons Testosterone as well as my own as a 47 year old female. So far...we have not had to have these adjusted. However.....normal and IDEAL range for DHEA in a woman my age was supposed to be over 220 and I tested at 27, so I am on DHEA 35 mg per day. I have been on this for about 4 months and my DHEA blood levels have risen to 97. My son Blake was at 47 and is now at 112 after 14 months. Our specialist specified that we were to only use DHEA from a compounding pharmacy, thus he wrote us a prescription for such. Apparently...there are problems with DHEA over the counter? Our cost is $68.00 US for 90 tablets.....so a 3 month supply each. I noticed a decrease in Migraines within the first month and cognitive clearing of my brain fog....it is "one" tool amongst a plethora that we use in our treatment protocol. I notice the remergence of Migraines and sleep issues immediately when discontinuing DHEA. Also, I lost about 50% of the hair on my head......it is thickening and growing back again with the DHEA! Best.Julia
 
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I've had high testosterone for years so it's strange to here of female ME sufferers on here having very low testosterone levels.

I've no idea what effect my high testosterone level has had on my ME. I'm on the oestrogen pill and antibiotics permantly as it causes inflammed acne when left untreated -like some teenage boys have the pleasure of getting! Every time I stop the meds it comes back. I certainly feel better being on the pill than not, but then periods have always made me worse and I only have to have one every 3 months on the pill good times :victory:

I've recently had my hormone levels tested again and been called in to see my GP, not sure why will find out friday..
 

garcia

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DHEA - good or bad?

I think the biggest open question right now on the role of hormones & XMRV is whether taking DHEA would be beneficial, since unlike the other androgens DHEA is crucial for a good immune response. One of the things it does is boost NK Cell number & function.

For example DHEA seems to be a key hormone in Aids-prevention. Levels of DHEA correlate directly with prognosis in that disease. DHEA has also been shown to inhibit HIV-replication.

Not only that, but here is the money-shot so to speak. I think you'll like the following quote:

HIV is not the only virus that can be inhibited by DHEA. An interesting study conducted at the University of Tucson in Arizona investigated the effect of DHEA and melatonin on the immune function and tissue vitamin E levels in healthy mice and mice infected with leukemia retrovirus, which leads to murine (mouse) acquired immune-deficiency syndrome (AIDS). The retrovirus causes a loss of tissue vitamin E, a decrease in T helper 1 (Th1) cytokines and an increase in T helper 2 (Th2) cytokines, as well as a reduction in B and T cell count. Both DHEA and melatonin prevented the drop in B and T cell proliferation, and the increase in Th2 cytokines. When melatonin and DHEA were used together, however, they were more effective. When administered simultaneously, DHEA and melatonin were also able to prevent vitamin E loss and reduce lipid peroxidation in the liver. Supplementing these two hormones also increased tissue vitamin E levels in healthy mouse. The results suggest that the combined treatment with DHEA and melatonin may be of use as adjunct therapy against retroviral infection.
The quote is from a Life Extension article on DHEA. Well worth reading.
 

meandthecat

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Thanks for that link Garcia DHEA has certainly given me a sense of 'ease' which hadn't been there for some time. I was one of those who never caught a thing, a cold would last a couple of hours, never developing. Last autumn, about 5 months in to the DHEA use I got Flu, flattened for a week but what a triumph for it felt like my immune system was in balance once more. I now wake up feeling like I have slept, the elevator sometimes makes it up an extra floor, I can be more vigorous but may not have more stamina.
I have found melatonin useful sometimes when the sleep cycle is out, I will look into that more.
I have tied to talk to a couple of consultants about DHEA use, they seem interested if bemused, you can see the 'Is he/isn't he a..fruitcake' going on behind the eyes but in the end there's a thousand more people out there to see and it goes nowhere.
As a rider to this I was found to have a high PSA level, which for men is not good. With no other factors found it maybe that this is a side effect of increased testosterone and a risk.
 
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What is considered a normal testosterone level for women? I had mine tested a while ago- 2.3 nmol/L, which my GP seemed to think was ok. I tried googling but was too foggy-headed to understand the different units!

I've been on LDN for a couple of weeks, and have noticed increases in energy, strength, stamina, and sex drive- I wonder if it has a direct effect on hormones? Or whether it's just the effects of the immune regulation.