Treating with testosterone

[.jm.]

Is there any clinical or non-clinical data related to treating CFS (or simply the symptoms of CFS) with testosterone treatment in women? I ask this because CFS disportionately affects women (though not exclusively). I'm going to see my endocrinologist on Monday and I want to suggest that in the absence of success with other treatment avenues that we increase my testosterone slightly.

This is just an idea in the absence of success with other treatment avenues. My testosterone is very low, and has been for at least the last five years. I was a high performing athlete in this time period, so I know that low testosterone isn't by itself causing fatigue. Though possibly increasing it would benefit symptoms. We should be able to move it back to the high end of the women's range and see if it has any benefit.

 

[nanonug]

Is there any clinical or non-clinical data related to treating CFS (or simply the symptoms of CFS) with testosterone treatment in women?

I am personally not aware of any data regarding treatment of SEID with testosterone, for either men or women.

Do you have a full picture of your hormonal status or just testosterone? Knowing about testosterone just by itself is not very useful. Things like cholesterol, pregnenolone, aldosterone, DHEA-S, estrogens and progesterone, for example, are also important.

 

[.jm.]

Oh, yes.... My sex hormones are monitored and tested every 6 months or so. Everything is closely monitored and regulated by drugs. Life (which proceeded CFS).

 

[nanonug]

Oh, yes.... My sex hormones are monitored and tested every 6 months or so. Everything is closely monitored and regulated by drugs. Life (which proceeded CFS).

How's your estradiol? Is it high-normal, by any chance?

 

[.jm.]

generally in the 40-60 pg/ml range. It was tested in January as 44 pg/mL.

 

[nanonug]

generally in the 40-60 pg/ml range. It was tested in January as 44 pg/mL.

I'm afraid that doesn't tell me much as it varies quite a bit with the menstrual cycle/status. I would need to know in which phase of the cycle you were at the time of the test or, alternatively, if you are postmenopausal. What I am trying to assess here is whether your low testosterone is due to excessive aromatization.

 

[Learner1]

Getting your hormones functioning well can help cognitive function and energy, do that you can work other problems. Dr. Holtorf's model for treating ME/CFS has treating hormone imbalances as a key step - see attached.

Component Three: Balance the hormones

There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunction with these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When they are properly treated and balanced, tremendous results can be achieved.

My doctor and I have found using a DUTCH test, dried urine test of comprehensive hormones to be helpful in optimizing my hormones and helping me function. It can be used pre- or post-menopause.

https://dutchtest.com/patients/

I take tiny amounts of pregnenolone, DHEA, testosterone, and estriol, higher doses of progesterone and hydrocortisone and they have greatly helped my function.

 

[jason30]

Getting your hormones functioning well can help cognitive function and energy, do that you can work other problems. Dr. Holtorf's model for treating ME/CFS has treating hormone imbalances as a key step - see attached.



My doctor and I have found using a DUTCH test, dried urine test of comprehensive hormones to be helpful in optimizing my hormones and helping me function. It can be used pre- or post-menopause.

https://dutchtest.com/patients/

I take tiny amounts of pregnenolone, DHEA, testosterone, and estriol, higher doses of progesterone and hydrocortisone and they have greatly helped my function.

May I ask which supplement or med you use to up DHEA and testosterone?

 

[Learner1]

I take Pure Encapsulations DHEA and have a testosterone cream compounded as there's no FDA approved female testosterone product - all the male products are too strong.

 

[jason30]

I take Pure Encapsulations DHEA and have a testosterone cream compounded as there's no FDA approved female testosterone product - all the male products are too strong.

Thanks!
Did you get the testosterone cream on doctor's prescription?

 

[Learner1]

Yes, and a compounding pharmacy filled it.

 

[Nine lives]

Sadly, my regular MD tried me over year ago with compounded testosterone, and for me, it still kept being bound up (SHBG issue with blood free testosterone 0.2-0.3). It seems almost as if my body does not want to go into an optimal testosterone state, despite my feeling that it would help me feel myself again.

Interesting that a DUTCH test (about a year and a half ago) the showed testosterone excess! (but not in blood tests). But, I was taking oral progesterone at the time. It has now become clear to me that I am progesterone intolerant (feeling drugged, cannot get up in morning, bloating, swelling).

I would be very happy to sort this. Back in 2013 when I was in first remission I could tolerate estradiol patch and oral progesterone 200mg. Felt really good for a while back then, and then it slowly slipped away....

 

[Learner1]

Do you have SHBG SNPs or some of the SNPs in the diagram here?

https://www.pharmgkb.org/pathway/PA145011118

Or any issues here?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365799/

Or, are you missing something to metabolize the hormones?

My body wants to make everything on it estradiol, so though I need them, I take a small dose of all the hormones, except prometrium, which I take a large dose of, along with a tiny amount of estriol (not estradiol, which promotes my cancer).

One other thought, if you're taking horse hormones, and not bioidenticals, that might be part of your issue (and, as an added bonus, raises your risk of female cancers.)

I believe in the DUTCH results more than all the LabCorp hormone tests I've had run. I had stage 3 uterine/ovarian cancer and need to be sure all my hormones are nailed down properly. Following up on the imbalances that DUTCH identified fixed my issues quickly.

 

[heapsreal]

Not sure if a dr would prescribe it but the anabolic steroid anavar is commonly used in females because of its superior side effect profile. It may even lower shbg, low androgenic side effects and is used in hiv and increased immune function is a finding. Another female friendly steroid is primobolan. The main purpose for prescribing these is for muscle wasting disorders, osteoporosis, anemia. Im sure its possible for off label use for hormone replacement, its just the word anabolic scares drs off even though they are safer then testosterone itself.

Also many transdermal testosterone products are not well absorbed in many men which why many move to injections for hormone replacement therapy.

 

[Nine lives]

Do you have SHBG SNPs or some of the SNPs in the diagram here?

https://www.pharmgkb.org/pathway/PA145011118

Or any issues here?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365799/

Or, are you missing something to metabolize the hormones?

My body wants to make everything on it estradiol, so though I need them, I take a small dose of all the hormones, except prometrium, which I take a large dose of, along with a tiny amount of estriol (not estradiol, which promotes my cancer).

One other thought, if you're taking horse hormones, and not bioidenticals, that might be part of your issue (and, as an added bonus, raises your risk of female cancers.)

I believe in the DUTCH results more than all the LabCorp hormone tests I've had run. I had stage 3 uterine/ovarian cancer and need to be sure all my hormones are nailed down properly. Following up on the imbalances that DUTCH identified fixed my issues quickly.

Despite my homozygous COMT, my estrogen levels on the DUTCH were perfect levels and tended towards good methylated estrogen.

The problem with all tests is that are just a snapshot in time. Ideally, continuous monitoring may show some interesting patterns, but who can afford to do these tests every day!

 

[Learner1]

I agree! They do help with major course corrections, though. I have found that in different people, the usage of the pathways differs, so you need to learn the dynamics of yours and work with it.

When I feel my hormones are out of whack, my doc spot checks a couple and I usually know how to adjust.

Good luck getting yours sorted!

 

[Ema]

Is there any clinical or non-clinical data related to treating CFS (or simply the symptoms of CFS) with testosterone treatment in women? I ask this because CFS disportionately affects women (though not exclusively). I'm going to see my endocrinologist on Monday and I want to suggest that in the absence of success with other treatment avenues that we increase my testosterone slightly.

This is just an idea in the absence of success with other treatment avenues. My testosterone is very low, and has been for at least the last five years. I was a high performing athlete in this time period, so I know that low testosterone isn't by itself causing fatigue. Though possibly increasing it would benefit symptoms. We should be able to move it back to the high end of the women's range and see if it has any benefit.

I also have this situation, low testosterone and low normal estradiol.

I have taken every manner of testosterone in every dose up to 2 mg/day, and never had any luck with it. It didn't improve my symptoms or even raise my levels on labs so who knows where it was actually going.

But HRT is important so it's worth a shot. Some people have much better success than I did.

 

[Learner1]

Have you tried adding pregnenolone or DHEA to see if they will convert to either? I found out that if I take more than a tiny dose of pregnenolone, it drops down to become estradiol. Also, is your total cholesterol low?

 

[Ema]

Have you tried adding pregnenolone or DHEA to see if they will convert to either? I found out that if I take more than a tiny dose of pregnenolone, it drops down to become estradiol. Also, is your total cholesterol low?

Do you mean me, or the OP?

 

[Learner1]

@Ema Yes, I meant you, FWIW. You seem to know a lot, though, so you probably know what to do!