Susan's Place Transgender Resources

Hi All,

I have used Saw Palmetto for few months 4 years ago.My testosterone has dropped too low,my testicles have shrunk,  constant fatigue and flu like symptoms. I have a lot of muscle pain and joint pain. I also have very unrefreshing superficial sleep. Always wake very tired. Before using SP I was perfectly normal male. Is there any hope to revert these sides?

Quote from: sp2000 on September 05, 2015, 08:04:26 PM
Hi All,

I have used Saw Palmetto for few months 4 years ago.My testosterone has dropped too low,my testicles have shrunk,  constant fatigue and flu like symptoms. I have a lot of muscle pain and joint pain. I also have very unrefreshing superficial sleep. Always wake very tired. Before using SP I was perfectly normal male. Is there any hope to revert these sides?

That's pretty much the bad effects of removing natural hormones. I've noticed I can't sleep either. I don't have the flu like symptoms but I can imagine it.

Really, your little testosterone factories should bounce back. If I go off the hrt for a week, I'm bouncing off the ceiling.

I don't know if you are still taking SP but if you are, here are the side effects.
In most cases, side effects of saw palmetto are limited to minor discomforts, such as headache, nausea, dizziness, fatigue, or upset stomach. However, saw palmetto has been linked to liver injury in a few rare cases.

If you are still using it then stopping it should cause everything to rebalance. But it sounds like you used it for a few months four years ago? I would suggest that if you haven't used it for over three years and you have these issues then the Saw Palmetto is not the cause. See a doctor, preferably an endocrinologist, immediately to sort out what is going on.

Everything, herbals, hormones can have severe side effects depending on the individual and what else you may be on, your overall physical health etc.

Please go and see a Doctor and tell them honestly what you have been using.

One of the first laws of medicine is dealing with a problem as early as possible has the best outcome, so don't dither, go see a medic.

  I vote doctor as well. Saw palmetto did not stop my libido nor did it drop my PSA levels.

Joelene

Quote from: sp2000 on September 05, 2015, 08:04:26 PM
I have used Saw Palmetto for few months 4 years ago.My testosterone has dropped too low,my testicles have shrunk,  constant fatigue and flu like symptoms. I have a lot of muscle pain and joint pain. I also have very unrefreshing superficial sleep. Always wake very tired. Before using SP I was perfectly normal male. Is there any hope to revert these sides?

It's possible you have post finasteride syndrome, since the biological effects of Saw Palmetto are very similar to finasteride (they both target the same enzyme). However the symptoms you describe sound a lot like ordinary hypogonadism, so maybe the saw palmetto has nothing to do with it and you would have gotten sick with hypogonadism regardless of whether you'd taken it or not. It happened to me, quite suddenly, not long after my 43rd birthday (well, I've actually had symptoms of hypogonadism all my life, it's just that it got dramatically worse at that time).

Going on estradiol HRT should cure those symptoms (and you probably wouldn't need an antiandrogen either), however if that's not what you want to do, you need to find a doctor who specialises in treating male hormonal problems, have some blood work done to establish whether it's primary or secondary hypogonadism, and whether there's any underlying condition (that could potentially be treated) causing it.

Seeing as you presumably have gender issues (otherwise why would you be here), it's possible that the same thing that affected your brain development and your gender identity, also damaged your endocrine system (which is what appears to have happened to me). If so, it was a ticking time bomb that you were born with, and it's only going to continue to get worse as you get older, so your only option is to go on HRT of some kind.

If it's secondary hypogonadism, you have the option of taking fertility drugs (clomid and/or HCG), as an alternative to going on testosterone replacement. A low dose of one or more of these meds might be able to keep things ticking over satisfactorily for a while at least, which would be less invasive than going on T replacement (and also means you remain fertile, an important consideration if there's still a possibility you might want to have kids).

Unfortunately, most doctors don't have the first clue when it comes to male hormonal problems (even endocrinologists, the ones who are supposed to specialise in hormones), so it is important to find one that knows what they're doing.

This is quite a good site, where people should be able to help you further:
http://www.allthingsmale.com/community/forums/male-health-hrt.2/

It's like saying you overdosed on st johns wort. Are you on another baldness drug like finasteride? That'll make you sick.

But saw palmetto? Andbi got drunk on a cup of tea. :D

I dont have any gender issue.
I was searching for SP side effects and found this forum.
I am married and was happy with my male (or ex male) body.
I am not using it, have stopped four-fives years ago.
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.
I was perfectly fine or should say was above average males.Very strong and no sexual issues at all in my whole life.Just a normal healthy male could be. I used SP only for my hair loss. Never used anything before or after SP. All I knew it reduces DHT and that DHT is a culprit hormone.It should be killed in your body because it gives you baldness and causes your prostate to grow. Now I know how important DHT is. I was so brain washed.

In case you weren't aware of it, you posting history is available to everybody on the web site and it reads a bit strange. With the additional information you provided, it makes a bit more sense. If your problems are clearly link to SP then I would suspect it's due to a one in a million reaction to SP and it will take more digging. I found a possible web site already but it went down today and will remain down for 6 days. I will bookmark this thread and if I come up with something I will post it

Back with questions.
1. Were you taking the recommended dose or a much higher one.
2. Did you take other medication of any kind or alcohol or supplements
3. Any surgeries in particular Gallbladder http://www.askdocweb.com/sawpalmetto.html (http://www.askdocweb.com/sawpalmetto.html)
4. I know you said you were healthy but have there been any other medical issues in the past.

Susan's was pretty slow last night so I spent several hours of intense web searching finding out how good the stuff is and very little about the bad side. I did hit a little pay dirt that you may or may not know about. Being unregulated, Saw Palmetto's quality is all over the board, it can be contaminated and the concentration isn't consistent. It's possible to get the good stuff and overdose on it. In addition it's cleared through the Gall Blatter very slowly taking as much as 27 days to clear the system. Knowing this I would be very wary about taking the stuff.

On to your problem. The problem you are seeing most of the time is short lived but I did find a few other cases like your on the web. I didn't find doctors commenting on the problem but what I found suggest the damage is the the adrenal gland which sounds right as so much was affected. Two places suggest vitamin D through a healthy diet might help with the problem but it's not stated as a cure to the the problem.

The adrenal gland is a pretty complex and important part of the body and I don't know I you have attacked the problem from this point of view. I would guess that the odds aren't real good that you will be able to fix the problem but maybe this will help.

I am sending you a link dump by PM of what I found as I don't want the mods having to dig through the links to make sure they are appropriate for this web site.

Quote from: Dena on September 07, 2015, 09:46:45 AM
Susan's was pretty slow last night so I spent several hours of intense web searching finding out how good the stuff is and very little about the bad side. I did hit a little pay dirt that you may or may not know about. Being unregulated, Saw Palmetto's quality is all over the board, it can be contaminated and the concentration isn't consistent. It's possible to get the good stuff and overdose on it. In addition it's cleared through the Gall Blatter very slowly taking as much as 27 days to clear the system. Knowing this I would be very wary about taking the stuff.

On to your problem. The problem you are seeing most of the time is short lived but I did find a few other cases like your on the web. I didn't find doctors commenting on the problem but what I found suggest the damage is the the adrenal gland which sounds right as so much was affected. Two places suggest vitamin D through a healthy diet might help with the problem but it's not stated as a cure to the the problem.

The adrenal gland is a pretty complex and important part of the body and I don't know I you have attacked the problem from this point of view. I would guess that the odds aren't real good that you will be able to fix the problem but maybe this will help.

I am sending you a link dump by PM of what I found as I don't want the mods having to dig through the links to make sure they are appropriate for this web site.

Dena
I think you are right about Gallbladder and Adrenal. While I was on SP and for many months after stopping it I kep having very nasty and bad smelling burps. My digestion was (still today) extremely slow. My food was staying in my belly and I had got (which still present) pot belly.
No I never drank or smoke in my life. I was very health conscious guy. I loved weight lifting and hiking.Now none of these activities is possible.
I took normal dose, 320 mg soft gel caps from GNC store, some from other herbal store. All kept me making weaker and weaker.
you might be right about Adrenal glands. What do you suggest about fixing them.But yes you are right to become normal again is not possible now. All I want is to live fatigue and pain free life again. At least can go back to work like other people. In my present condition sex is luxury not necessity for me. Another side effect is, I am very crying now. I easily start crying.Very emotional.I hate this. When I look my back I don't remember if I ever cried like this in my life.Not even when I was a child.

Quote from: sp2000 on September 07, 2015, 10:16:17 AM

you might be right about Adrenal glands. What do you suggest about fixing them.

There are diet suggestions in the link dump I sent you. I don't know if a supplement would help but after you review the link dump, you might want to talk to an Endo with what you have learned. Be careful with Vitamin D as it is fat soluble and is retained by the body. Overdosing on it is very harmful so talk to a doctor before going over the recommended intake.

few other side effect I forgot to mention.
My gums bleed. Dentist have examined two times and nothing wrong there. I have to use wipes very gently after using washroom as that area start bleeding easily, even sometimes without  using any wipes. My nose bleeds too. My skin is very thin and fragile now.
I get cuts or bruises easily.Also it is so soft that Cloths leave print everywhere, never had this before. My limbs sleep very quickly.
I can not stand on feet right after standing up. Takes me 2-3 minutes.
Bones, especially hip bones are very painful. Can not sit on hard surfaces.Looks like either my muscles are soft there or they don't exist anymore. Hip bones hit surfaces directly.
I have very low blood pressure (below 100) which annoying. It was around 118 before using SP. I have been athelete so it was perfect.
I am taking VitD3 already. It is the reason for me to be alive today. What kind of dangers of taking VitD3 are?

As long as you don't go overboard on vitamin D3 you shouldn't have problems but when in doubt, consult the authority.
As far as bleeding gum, that could be vitamin C or K. You might consider switching to a multi vitamin because you my not be processing your food properly if you still have digestion problems.
https://en.wikipedia.org/wiki/Vitamin_D (https://en.wikipedia.org/wiki/Vitamin_D)

Quote from: sp2000 on September 07, 2015, 10:46:48 AM
few other side effect I forgot to mention.
My gums bleed. Dentist have examined two times and nothing wrong there. I have to use wipes very gently after using washroom as that area start bleeding easily, even sometimes without  using any wipes. My nose bleeds too. My skin is very thin and fragile now.
I get cuts or bruises easily.Also it is so soft that Cloths leave print everywhere, never had this before. My limbs sleep very quickly.
I can not stand on feet right after standing up. Takes me 2-3 minutes.
Bones, especially hip bones are very painful. Can not sit on hard surfaces.Looks like either my muscles are soft there or they don't exist anymore. Hip bones hit surfaces directly.
I have very low blood pressure (below 100) which annoying. It was around 118 before using SP. I have been athelete so it was perfect.
I am taking VitD3 already. It is the reason for me to be alive today. What kind of dangers of taking VitD3 are?

Are you sure you don't mean orchidectomy in place of SP?

You are describing what happens to a male when you remove testosterone. It's a shame you had reactioons to the T shots, because that's what you need.

Quote from: buttertly on September 07, 2015, 11:46:28 AM
Are you sure you don't mean orchidectomy in place of SP?

You are describing what happens to a male when you remove testosterone. It's a shame you had reactioons to the T shots, because that's what you need.

The Adrenal gland is the master regulator of the whole body. Many things including our sexual function are regulated through the Adrenal gland. It appears the SP damaged the gland upsetting the chemical balance for the entire body. T shots only address one of many problems and the only real hope is to address the Adrenal gland. Anything else is just addressing the symptoms.

I did a little more searching and the pituitary gland is also part of the chemical balance game. You will need an Endo to run some special test checking out both areas of your body. Depending on what the failure is, treatment might be possible.

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.

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?

 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.

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.

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

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?

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.

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.

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.

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.

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

http://www.biomedcentral.com/1741-7015/9/27 (http://www.biomedcentral.com/1741-7015/9/27)

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!

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

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.

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