• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Treating with testosterone

Ema

Senior Member
Messages
4,729
Location
Midwest USA
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?
Yes, I take 50 mg preg and 25 mg DHEA. And 2-4 mg estriol which has turned out to be the only form of estrogen that doesn't make my chest swell.

Even on 150 mg preg though, I could only get my level up to about half the Life Extension optimal of 200. So who knows what it is all converting to!

On the amount I'm taking now, my preg is only 62 and DHEA is 280.

My total cholesterol has been quite low, down in the 110s, in the past, but "normal" for me is around 180s. Now it is actually 195, which is pretty good for me. Keto, I eat quite a lot of eggs!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
This should all be individualized. The idea is to normalize your function so your body can do what its supposed to. Hormones get out of whack because our bodies are stressed by immune dysregulation, infections, toxicity, nutrient deficiencies and gut problems. Depending on your age and health history, if you can solve the big problems, hormones should eventually go back to normal, but supporting them while they're not functioning so well is common among functional medicine doctors.

So, test and see what you're high or low in, including cholesterol, which feeds all the hormone pathways. Many of us are low in everything, but what your individual body is doing may be different than other patients.
 

Carl

Senior Member
Messages
369
Location
United Kingdom
The pituitary function is affected in CFS/ME for the same reason that the hypothalamus is affected. Depending upon the degree of pituitary function which can be reduced, as it is in me, where a significant part approx 30% of the right side of the hypothalamus and pituitary was destroy. Most sufferers are unlikely to be as greatly affected as me but it could possibly be having an effect.

To overcome this I use a Chinese herb called Tu Si Zi (Dodder seed) which has been shown in animals to increase the weight of the pituitary gland and it's function, help the hypothalamus and adrenals. It also helps the kidney energy and blood flow. Tones the Liver and Kidney Qi.

This could affect all your hormone levels by improving pituitary function in those sufferers which are most affected and tend to have the highest digestive permeability. It does also tend to lower cortisol by improving kidney energy flow which is usually highly elevated and drives some CFS symptoms.

It is often used with Gou Qi Zi (Wolfberry/frequently corrupted to Goji berry). This can be immune stimulating which might not suit everyone but with my immune system balance it does work okay for me.
 
Messages
14
Its made a significant improvement for me optimizing high normal T levels. Google testosterone replacement therapy in hiv men. Significant improvement in immune function .
so were you below normal or low end of normal before? and is it a coincidence that you had low testosterone or was it the cause of it in the first place?
 

jason30

Senior Member
Messages
516
Location
Europe
To overcome this I use a Chinese herb called Tu Si Zi (Dodder seed) which has been shown in animals to increase the weight of the pituitary gland and it's function, help the hypothalamus and adrenals. It also helps the kidney energy and blood flow. Tones the Liver and Kidney Qi.

I have been reading about dodder seed lately and this herb sounds really interesting.Though I didn't find any known seller. May I ask where you buy dodder seed?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,103
Location
australia (brisbane)
so were you below normal or low end of normal before? and is it a coincidence that you had low testosterone or was it the cause of it in the first place?

I cant confirm it as never had testosterone tested prior to cfs but at a guess id say it was good as i was able to weight train hard and recover and strong sex drive. Since cfs my total testosterone has progressively dropped from a high normal range to 10, i think ranges are 10 to 33. In american units my total T is 300. My free testostrone has always been below normal range 60 to 120 is normal i was below that . My dhea was 2 normal range 2.5 to 15.

Improvements noticed is i can exercise hard and recover. Body composition has changed back towards pre cfs state. Sex drive and wellbeing improved. Neutrophil count is now normal after years of being low.

The other reasons i dont think it was just low T was of different immune tests show it was activated or low function in others. Low T i think is apart of the hpta function that is damaged in many cfsers. Also diabetes insipidus which is the ability to regulate fluid and electrolytes which is signalled by the hpta is whacked, but now treated with desmopressin.

A hiv dr i was in contact with only who uses testosterone and anabolic steroids fir muscle wasting etc in hiv said with my low T levels he said wpuld be impossible for my immune system to function optimally . He did send me a study on trt and nk function improvements i will try and find when i get a chance.
 

Carl

Senior Member
Messages
369
Location
United Kingdom
I have been reading about dodder seed lately and this herb sounds really interesting.Though I didn't find any known seller. May I ask where you buy dodder seed?
Tu Si Zi treats the HPA axis and tones the Kidney and Liver energies. It also has liver protecting, kidney protecting effects and raises antioxidant levels among many other properties. It is probably what has protected my kidney function after being T1 diabetic for so long.

It is available from a lot of places, in Chinese Medicine establishments (Herbalists), online shops such as places like I get mine from and ebay sells it but not in the quantity or for the price I am willing to pay.
I purchased last time from Here before that from Here. Both are owned by the same people but the first site showed lower prices because the 2nd had put up the prices since I last ordered. If you want to try it then I recommend that you get a small amount such as a weeks worth to try it to see if it works well for you. The dosage is 15g/day in divided doses, I take it twice a day. I notice the effect running out after 15-16 hours. Therefore every 12 hours is about the right spacing unless it is taken x3/day every 8 hours. I boil a large pan which lasts me about 3.5 days. They are meant to be boiled for 30 minutes but I boil them for 1 hour.

Gou Qi Zi (wolfberry) goes well with it and it helps tone the kidney/liver energies. The toning effect can be seen in the iris as rings which run around the iris. TCM refer to this as Qi/Chi and many of their herbs tone the Qi in different organ systems. I have looked at TCM and Iridology and noticed the correlation between them and how the TCM meridians relate to the body and iris. TCM says that certain herbs tone different organ systems such as the Liver, the Kidneys, the lungs and the Spleen. Seeing the effect in the iris shows it is a larger area than just the individual organ, the toning effect occurs over a larger area affecting a number of adjacent areas.

After boiling Tu Si Zi, there is a small amount of blue oil on the top if viewed with a good light source. This is probably a volatile oil which might be responsible for the nerve toning effect. German chamomile essential oil is similar but stronger, it tones the liver and lungs meridian. I have used this too, based upon a Herbalife Herbal Aloe drink.

I have watched the changes in the rings in my iris while taking Chinese herbs. The rings become wider and the depth reduces when taken over a long period of time. These are like resistance to nerve function which reduces the function of the area/organ which they traverse. Babies have none of these rings whereas old people have deep and tight rings reducing the function and nerve impulses to their organ systems, there will also be a ring which affects the skin which promotes skin ageing. BTW these rings are caused by repressed drives and emotions and each time something like an emotion is repressed, the ring becomes tighter and deeper. The ring through my liver is very wide and shallow which helps my liver function and emotional state. I have been working on the rings for quite some time. I do intend to totally eliminate them as soon as I have solved CFS and destroyed the infection, so that healing can take place.

Tu Si Zi does tend to produce bradycardia, a slowed heart beat. Mine is around 45-60. I have been taking it since about 1993.

Summary: Cuscuta seed is a tonic that is mostly used to nourish and tonify the kidneys and urogenital system, as well as to strengthen sexual functioning. It helps nourish both kidney yin and yang. It has an astringent quality, helping to preserve essence; it helps prevents the loss of sexual as well as other bodily fluids, thus it prevents premature ejaculation, vaginal discharge, and frequent urination. It helps treat other signs of kidney deficiency like lower back pain, eye floaters, and ringing in the ears. It increases fertility in both sexes, benefits sperm health and motility, and improves vision. Cuscuta also nourishes the liver and spleen, and prevents diarrhea.

Cuscuta has been shown to have high antioxidant content and to protect the liver. It has also shown to have the effects of anti-fatigue, immune enhancement, and anoxia (oxygen deficiency) tolerance in mice.

Cuscuta improves the functioning of the hypothalamus-pituitary-ovarian axis in female rats. It invigorates the reproductive system and reproductive endocrine function in male rats. Cuscuta increased the weights of testis, epididymis and pituitary gland, and stimulated testosterone and Lutenizing hormone secretion both in vitro and in immature rats. The seed has been shown to improve human sperm motility and stabilize sperm membrane function in vitro.​
 
Messages
87
I messaged my endocrinologist to ask if I should still be taking progesterone and if he would prescribe testosterone and monitor it if the current treatment doesn't improve symptoms within a few months. My endocrinologist said as long as I could figure out how to get it filled, he would prescribe. (the schedule-II drug problem). So, as one of the backup plans for a few months from now is to try testosterone. The goal will be to get my testosterone level to the upper women's range (around 60ng/dl). My preference is IM testosterone (Testosterone-depot). Monitor monthly. Also prescribe dutasteride to help prevent side effects primarily the re-stimulation of body hair growth.