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how to detransition if you have you used Saw Palmetto.

Started by sp2000, September 05, 2015, 08:04:26 PM

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buttertly

Quote from: sp2000 on September 07, 2015, 03:15:12 PM
I have spent thousand of $$ and seen many Endos. CT scan , xrays of pituitary gland, MRI etc etc, all useless.
My blood cortisol is always higher than normal but saliva is almost nonexistent. Drs don't want to hear a single word about saliva tests. They say adrenals are normal but my body temp is low and hands,feet, legs, arms are very very cold.My TSH is normal (lower than 1 around 0.75 or 0.9 ). Total testosterone is lower than normal. But like I said replacing it did not bring relief. My E2 is also low.Something is stopping my hormones from entering into my cells. This is all I can say.

Latent Androgen insensitivity syndrome?
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sp2000

 buttertly do not know about Androgen insensitivity syndrome but I remember I have read a post on MESO-Rx Forum of a guy who was on Testosterone therapy for years without any issue then because of his baldness he used Saw palmetto and his T stopped working. His symptoms were just like mine. Saw palmetto some how blocks channels of androgen in your cels permanently after which your own T or external T stops working.These changes seems to be permanent.
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HughE

Quote from: sp2000 on September 06, 2015, 10:31:03 PM
I have been to so many drs and Endos. Have been on TRT but the problem is after sides, TRT does not work. It stopped its effects after few weeks. All I was getting was bloating and water in my body.I had to stop it.
Fluid retention is a sign that your estradiol (E2) levels are too high, which is a common side effect with TRT (especially injected T). With testosterone cypionate you shouldn't inject it at longer than weekly intervals, as the half life in your body is not much more than a week, so you end up with very large swings in your T levels, which tends to cause excessive E2 production when levels are at their peak, and leave you with T levels that are too low in the trough period. One way to get around that is to break up the dose into smaller, more frequent injections. I know some of the people on the hypogonadism forums I belong to inject it subq once every 3 days rather than IM weekly, so that the peaks and troughs are smaller and the level more stable. A common practice is to add in a low dose of HCG too, this has the effect of stimulating your testicles to resume hormone production, and seems to give a better overall result for a lot of people (probably because the testicles make several other hormones besides T, which aren't replaced by TRT).

Most of them take a low dose of arimidex (an aromatase inhibitor which blocks the T to E2 conversion) as well, as a way of holding down E2 levels. I myself use progesterone cream for that purpose (without it I get quite bad fluid retention in my legs and ankles). I don't know whether progesterone actually lowers E2, but it seems to have the effect of rebalancing my hormones away from estrogen, so the estrogenic side effects go away. What works in me might not work in someone who had 100 percent of their prenatal development occur as male though!

I've seen people saying that lab measurements for E2 in men often aren't very accurate (since it's ordinarily present in very low levels in males, making it difficult to measure). There's a special "sensitive" test you have to order, otherwise the results are basically meaningless.

If you're on any form of TRT, you should be aiming for total T in the 600 - 900 ng/dl range, anything less runs the risk of symptoms of hypogonadism returning. In the Framington Heart Study, the average total T in normal, healthy men aged 20 - 40 was 723.8 ng/dl. Doctors often try to tell their patients that levels considerably lower than that are "normal", but that's not what the science shows.

Although the active ingredient of saw palmetto isn't finasteride, it does the same thing as far as your body is concerned as finasteride (knocking out the enzyme 5-alpha reductase). Therefore it's possible you could have post-finasteride syndrome. Reading what you've said about bleeding and bruising though, have you had your liver function checked? I know cirrhosis of the liver is one of the things that can cause hypogonadism.
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sp2000

I have done many liver tests, no cirrhosis. My ALT, AST, GGT etc all normal. Indeed once ALT was too low.
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buttertly

Quote from: sp2000 on September 07, 2015, 05:32:03 PM
buttertly do not know about Androgen insensitivity syndrome but I remember I have read a post on MESO-Rx Forum of a guy who was on Testosterone therapy for years without any issue then because of his baldness he used Saw palmetto and his T stopped working. His symptoms were just like mine. Saw palmetto some how blocks channels of androgen in your cels permanently after which your own T or external T stops working.These changes seems to be permanent.

Holy moley. I thought you were having us on. Well it doesn't sound good what you are going through.  Do lots of walking and brush your teeth a lot. Are they furry?
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Cindy

SP, you really need help from an experienced medical team probably at a major teaching hospital.

Those of us who are medically qualified cannot give you medical advice for ethical reasons, and those of us who are not can only give opinion.

Please get a referal to a medical team by your family doctor.
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sp2000

Cindy I appreciate your advice. IF you have read my previous posts then you know why I am here. Drs have no clues. All they can see is my total T is low and cortisol high. They go by book and book tells them to give me TRT which fails. No dr told me to use VitD3, but it really helped me. If I tell any dr about Vit D3 he will never believe me. Trust me sometimes patient knows more than the dr. They say it is anecdotal and move ahead.
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HughE

Quote from: sp2000 on September 08, 2015, 06:22:43 PM
Drs have no clues. All they can see is my total T is low and cortisol high. They go by book and book tells them to give me TRT which fails. No dr told me to use VitD3, but it really helped me. If I tell any dr about Vit D3 he will never believe me. Trust me sometimes patient knows more than the dr. They say it is anecdotal and move ahead.
Yes, until you experienced it first hand it's difficult to appreciate how poor a grasp most doctors have of both symptoms and how to deal with hormonal disorders in men (mind you, their track record in women isn't much better, what with DES, Premarin and Provera!). Here in the UK, it's particularly bad. There seems to be this mindset among the top doctors in the hierarchy that there's no such thing as hormonal disorders in men, and,  unless you've actually had your testicles removed, it's very difficult to get a diagnosis or treatment for hypogonadism. According to the Andropause Society, in the UK, something like 95 percent of men with hypogonadism go untreated, which is pretty bad considering that it completely destroys your quality of life, and sets you up for all sorts of health problems as you get older.

Anyway, if you read my earlier post, it certainly sounds like the intolerable side effects you experienced from TRT were the result of excessive aromatization to estradiol. This is a very common problem (especially with injected T), and the way most people seem to deal with it is by taking a low dose of an aromatase inhibitor (most commonly arimidex). Progesterone cream is an alternative (and the one I use). One good thing about progesterone cream is that you can rub it into your scalp, where it inhibits DHT production and (hopefully) helps to prevent hair loss.

You should check out the Allthingsmale website I linked to earlier, it's run by a doctor who is one of the most clued up ones there is when it comes to treating male hormonal problems.
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buttertly

Quote from: HughE on September 10, 2015, 05:53:08 PM
Yes, until you experienced it first hand it's difficult to appreciate how poor a grasp most doctors have of both symptoms and how to deal with hormonal disorders in men (mind you, their track record in women isn't much better, what with DES, Premarin and Provera!). Here in the UK, it's particularly bad. There seems to be this mindset among the top doctors in the hierarchy that there's no such thing as hormonal disorders in men, and,  unless you've actually had your testicles removed, it's very difficult to get a diagnosis or treatment for hypogonadism. According to the Andropause Society, in the UK, something like 95 percent of men with hypogonadism go untreated, which is pretty bad considering that it completely destroys your quality of life, and sets you up for all sorts of health problems as you get older.

Anyway, if you read my earlier post, it certainly sounds like the intolerable side effects you experienced from TRT were the result of excessive aromatization to estradiol. This is a very common problem (especially with injected T), and the way most people seem to deal with it is by taking a low dose of an aromatase inhibitor (most commonly arimidex). Progesterone cream is an alternative (and the one I use). One good thing about progesterone cream is that you can rub it into your scalp, where it inhibits DHT production and (hopefully) helps to prevent hair loss.

You should check out the Allthingsmale website I linked to earlier, it's run by a doctor who is one of the most clued up ones there is when it comes to treating male hormonal problems.


Wow. That's impressive.
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Dena

I have spent the time after the last post looking in the dark corners of the internet for information on this problem. I found while uncommon, others suffer from the same problem as the OP and the OP is very ill. Saw Palmetto is used to prevent hair loss and for most people it's pretty safe. For a small number the results can be very bad if Saw Palmetto isn't stopped as soon as the first symptom shows up. Very little information about the side effects and treatment of the OP's problem are posted on the internet and much of it is opinion. I came the conclusion that while it looks like Addison's disease, it isn't Addison's because the cortisol levels are high in the OP's blood work. That resulted in the theory that the problem is cortisol resistance. Searches with this idea and Saw Palmetto turned up nothing but I did run across a paper talking about a genetic link in a family for a naturally occurring cortisol resistance.

At this point I looked at Finasteride, a hair loss drug that contains a different active agent, but has the same reported problems that Saw Palmetto has. I made the assumption that both block hair loss through the same mechanism and as Finasteride is a commercial product, it might be better studied. There is something called Post Finasteride Syndrome that looks like the Saw Palmetto problem and it is being studied but nothing on treatment was available so back to the search engine. I changed my search to "Glucocorticoid Resistance" which includes cortisol and I had hits. Better yet, the hits contained a treatment. The problem is I am unsure if the damage will prevent the treatment from working but that is for an Endo to determine. This information was passed to the OP by PM yesterday and he has been on the site after that so I assume he is aware of it. I am posting the links so if somebody stumbles across this post, they will have the information they need.
The warning for both of these drugs is if you feel the least bit ill taking these drugs, stop using them. Recovery appears to be possible if the damage isn't great. If you continue taking the drugs, the damage will become permanent


http://emedicine.medscape.com/article/925564-overview

http://www.biomedcentral.com/1741-7015/9/27
Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
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Bunter

I'm xx (female born) so I don't know about Saw Palmetto or Finasteride, but I want to add that the symptoms sound definitely hormone related. I have/had all these things, including the bleeding gums and nose bleeds. My hormones went crazy after I turned 30, and I have probably an underlying health issue.
When I took (natural and artificial) hormones to help with that the side effects got even more crazy. It's not that uncommon for the pill or other female hormone drugs to damage the hormonal system permanently.
So far, I haven't found a solution, and even for women with that type of problem, the doctors aren't very helpful.
When they are honest, they tell you that science doesn't understand a lot when it comes to hormones.
The current theory in my case is that my hormone receptors work differently.
Also, when you take artificial progesterone, it can permanently affect the testosterone receptors in the body (women have them too). This is the reason why the pill can cause permanent loss of libido in some women.

Added: I just read that Saw Palmetto is a herb medication. It sounds a bit like Agnus Castus, which I have taken. Agnus Castus has a very strong effect on the pituary glad and can change hormone levels, perhaps permanently. Saw Palmetto stays in the system for quite a long time (1 month). Seems to be pretty potent. 

I've also read that some doctors found that people who digest excessive amounts of soy which contains plant estrogen, can seriously deranged their hormone levels. There was wave of vegans with that problem around 2000.

Holy cow: that stuff is *really* potent-
"Pregnancy and lactation

Saw palmetto extract should not be used during pregnancy.[14] The effects of saw palmetto extract on androgen and estrogen metabolism can potentially impair fetal genital development.[15] Saw palmetto extract should also be avoided during breastfeeding due to a lack of available information.[15]" WIKI

It can impair genital developement, you only see that with strong artificial hormones, ususally.

Let us know if you find out more, I'm still researching myself.
Good luck!


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Louidoui

SP2000 any luck recovering? I'm dealing with the same issue from saw palmetto and it's been almost ten years.
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Dena

Welcome to Susan's Place Louidoui. SP200 hasn't been around for about 2 years. I am still keeping my eyes open incase I should see something related to this but this doesn't seem to be something that's received much study. The best bet is any study that applies to Finasteride and with the number of site member that use that drug, it's possible something will turn up here. If there is something I can help you with, let me know.

Things that you should read


Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
If you are helped by this site, consider leaving a tip in the jar at the bottom of the page or become a subscriber
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