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Can anyone help me? (My strange case with alopecia)
Hey everyone,
Just thought I would post information about my case in the hopes that someone may have answers. I am looking for information and help, Anyone who wishes to come at me with the stories of how dangerous steroids are etc please save it. I am fully aware of the dangers. Here is my story.
I have a full time job in sports, It pays well and I have always enjoyed it, However when competing at the top level I realised that steroid use was huge amoung the top guys. It finally got to the point that I could longer climb the ladder in this sport without using steroids.
I first used steroids in early 2009, I injected testosterone for 8 weeks at 600mgs a week. After I stopped use of the steroids I was advisted to take tablets to make my body produce natural testosterone again, which I did. Around 2 months after I had stopped all use I noticed that I no longer grew facial hair, Also Hair on my arms stopped growing. I never thought anything of it at the time since I had been lucky when using the steroids and had not suffered any side effects. I had no other hair loss. In early 2010 I used steroids again, The dose was a little bigger and longer 800mgs per week for 12 weeks, At around the 5th week I noticed a bald patch at the back of my head. I continued the dose I was taken and when I finished the injections the patch grew back very quickly, Within the space of 3 weeks the patch was almost 90% gone. I once again took pills so my body would begin to re-produce testosterone again (the pills are nolvadex). I woke up one more to see that Patch that was almost gone was starting to re-appear, It was getting bigger by the day, I also noticed a patch on my chest, Over the next few weeks I was losing hair all over my body very quickly. Within 6 to 8 month I had developed alopecia universalis. I remember checking my body, I could not find one single hair. I went to the doctor (I have seen many doctors and must admit that 90% have been really bad in dealing with this condition, Almost like you are wasting their time) I had my bloods check and all came back as normal. I then got an appoinment with the top doctor dealing with auto-immune conditions. He also took my blood samples and informed me that my body was showing no signs of an autoimmune disease (is this normal for people with alopecia ? )
This is the part of my story were I would be interested in finding out peoples opinions. I was not convinced that the steroids had caused my hair loss, I had scannned the internet looking for similar cases but found nothing. I went to another doctor who told me that high amounts of testosterone can make your hairline reced, However he did not think it would cause AU. In late 2010 I used injectable testosterone again. The does was 600mgs for 12 weeks, After 3 weeks I noticed hair growing on my face, By week 5 it begain to grow on my head, I couldnt understand it. I was going through one of the most stressful times of my life and my hair was growing back very fast (white hair that started to get darker with time). It got to the point that after 9 weeks I had to shave my face again. By 12 weeks I had to also shave my head, I was growning hair all over my body. After I stopped injecting testosterone, The hair slowly stopped grown, within 4 weeks I was back to were I started, AU. I decided to see a doctor who delt with hormones and testing. I explained my history and also how my hair grew back with testosterone injections, He took blood samples and check all of my hormone levels which came back as normal. He explained to me that testoterone has no function on hair growth and that he could not see any link between injecting testosterone and hair regrowth. I wanted to get to the bottom of all of this, My bloods were showing no signs of an autoimmune disease. I would spend hours upon hours looking for answers on the internet. I have not found anyone who has lost their hair from steroid use. I decided to try again. I injected testosterone for 10 weeks at 600mgs per week. Once again my hair started to regrow. I have since stopped and so has the growth of my hair so there is a link between testosterone and my hair. If anyone out there has any help for me I would love to hear it. If people want to come on and talk about the dangerous of steroid abuse please save it.
Thank you all in advance
Andy
Just thought I would post information about my case in the hopes that someone may have answers. I am looking for information and help, Anyone who wishes to come at me with the stories of how dangerous steroids are etc please save it. I am fully aware of the dangers. Here is my story.
I have a full time job in sports, It pays well and I have always enjoyed it, However when competing at the top level I realised that steroid use was huge amoung the top guys. It finally got to the point that I could longer climb the ladder in this sport without using steroids.
I first used steroids in early 2009, I injected testosterone for 8 weeks at 600mgs a week. After I stopped use of the steroids I was advisted to take tablets to make my body produce natural testosterone again, which I did. Around 2 months after I had stopped all use I noticed that I no longer grew facial hair, Also Hair on my arms stopped growing. I never thought anything of it at the time since I had been lucky when using the steroids and had not suffered any side effects. I had no other hair loss. In early 2010 I used steroids again, The dose was a little bigger and longer 800mgs per week for 12 weeks, At around the 5th week I noticed a bald patch at the back of my head. I continued the dose I was taken and when I finished the injections the patch grew back very quickly, Within the space of 3 weeks the patch was almost 90% gone. I once again took pills so my body would begin to re-produce testosterone again (the pills are nolvadex). I woke up one more to see that Patch that was almost gone was starting to re-appear, It was getting bigger by the day, I also noticed a patch on my chest, Over the next few weeks I was losing hair all over my body very quickly. Within 6 to 8 month I had developed alopecia universalis. I remember checking my body, I could not find one single hair. I went to the doctor (I have seen many doctors and must admit that 90% have been really bad in dealing with this condition, Almost like you are wasting their time) I had my bloods check and all came back as normal. I then got an appoinment with the top doctor dealing with auto-immune conditions. He also took my blood samples and informed me that my body was showing no signs of an autoimmune disease (is this normal for people with alopecia ? )
This is the part of my story were I would be interested in finding out peoples opinions. I was not convinced that the steroids had caused my hair loss, I had scannned the internet looking for similar cases but found nothing. I went to another doctor who told me that high amounts of testosterone can make your hairline reced, However he did not think it would cause AU. In late 2010 I used injectable testosterone again. The does was 600mgs for 12 weeks, After 3 weeks I noticed hair growing on my face, By week 5 it begain to grow on my head, I couldnt understand it. I was going through one of the most stressful times of my life and my hair was growing back very fast (white hair that started to get darker with time). It got to the point that after 9 weeks I had to shave my face again. By 12 weeks I had to also shave my head, I was growning hair all over my body. After I stopped injecting testosterone, The hair slowly stopped grown, within 4 weeks I was back to were I started, AU. I decided to see a doctor who delt with hormones and testing. I explained my history and also how my hair grew back with testosterone injections, He took blood samples and check all of my hormone levels which came back as normal. He explained to me that testoterone has no function on hair growth and that he could not see any link between injecting testosterone and hair regrowth. I wanted to get to the bottom of all of this, My bloods were showing no signs of an autoimmune disease. I would spend hours upon hours looking for answers on the internet. I have not found anyone who has lost their hair from steroid use. I decided to try again. I injected testosterone for 10 weeks at 600mgs per week. Once again my hair started to regrow. I have since stopped and so has the growth of my hair so there is a link between testosterone and my hair. If anyone out there has any help for me I would love to hear it. If people want to come on and talk about the dangerous of steroid abuse please save it.
Thank you all in advance
Andy
Replies to This Discussion
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Permalink Reply by andy ryan on
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Thank you for your reply Tanya, I did ask the Doctor if he thought the steroids could have supressed my immune system, he said that some steroids like cortisone could have an effect on the immune system but not Testosterone, I shall struggle on for answers :)
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We ar all struggling for answers. Steroids supress the immune system and are one of the first lines of treatment. The latest research out there is showing a gene connected with this condition. In my daughter's case I think a case of mono stressed her immune system and caused the AU but she must have the genetic predispostion for it. I think that the body being stressed and off balance contributed to it which in your case may be induced by the drugs. Noone seems to have real answers which is why we are here. Hopefully better treatments will come soon.
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Permalink Reply by onekeylady on
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Interesting about the mono. I had a severe case of mono in my early 20's so much that they talked about putting me in the hospital. I can't remember ever being that sick. Now in my 50's I had an holistic Dr. tell me that the mono virus still lives in my body, and can continue to live in it for years. I am having my second flare up of AA, and took 1 round of steroid injections and I am starting to see the small white hairs in the spots that have been treated. I am also taking the LDN for a week now and the last 3 days have had less and less hair falling as there had been. I will continue keeping a journal and inputting updates on some of the discussions and blogs. Also updated latest discussion of Symptoms, treatment options, research.
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That is very interesting... I know that some women who have hair where they should not (for example, on face, back, etc), testosterone is usually checked because it could mean the woman has too much.
In terms of the doctor you saw for auto immune conditions - was it just blood work, looking for high anti-bodies, etc? What did he do to come to the conclusion that it wasn't related to auto immune?
Did anyone do a biopsy of the scalp area where you lost hair?
That's really all I can think of...
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I went to see the top auto immune doctor in my country ( I was given an appoinment 18 months away, However my mother knew someone and the doctor seen me as favour) He didnt take a biopsy of my scalp, however he did test my bloods and said that there was nothing within my blood to suggest that an auto immune attact was taken place in my body. I assume since this doctor is the top guy in this field that he knew what to test and look for in my blood work. Also as mentioned the hormone doctor I attended said that testosterone is not thought of as a drug that supresses the immune system.
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Permalink Reply by MattiasP on
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Hi Andy!
I read this post with great interest. Lately I've been having this theory that my AU has something to do with a change in my testosterone levels. I have not yet had my levels measured though. When alopecia started i my case in 2007, my doctor did the usual set of blood tests and all came out normal. I don't think that testosterone was measured, as it is not considered to be a reason for alopecia.
The reason I'm playing w the thought that testosterone might be connected to my AU is a strictly subjective feeling that something in my body drastically changed around the time alopecia started to show. I was training really hard in MMA at the time (no steroid use) and had been for the last couple of years. I have always shown all the signs of naturally high testosterone levels, i.e. competitive, body hair, ability to be controlled aggressive in sports, able to build muscles fast, libido etc. A while before alopecia showed, I was beginning to feel less aggressive, less motivated to fight in MMA, less capable to push myself physically and so on. I know there could be tons of reasons for this.
However, I've been trying to naturally increase my testosterone levels lately, supplementing with vitamins A, C, D and E and zinc, taking ice baths, doing heavy deadlifts and squats (with very short rests between sets), sleep more, eating less fibres and so on. Not seen any change in hair growth yet though, but I think it could be beneficial in the long run.
So my thoughts are really that lack of testosterone, rather than high levels, might have something to do with it. Adding testosterone through injections decreases the body's natural production of the hormone, so the question is if the the body in some way can sense the difference between the two. I don't know. If so, it could sort of explain both yours and mine experiances.
Have you found out anything more since your last post?
Cheers
Mattias
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Hey,
Im still looking for answers, However I am not as obsessed as I used to be :) I know that working out, eating well, Sleep and many other factors can increase you natural testosterone levels, however it can only raise them by a very small amount. When I was talking to my hormone doctor he said that men are usually born with low test levels, He said it was unusal for young men to suddenly start suffering from low test levels unless a person was taken steroids, (or other medications) had a serious illness or suffered an injury to the glands or testicals.
I have joined loads of Steroid forums and have not found a single case like mine except for people suffering from receeding hair lines (cause by too much DHT from Testoserone) (You would not believe the amount of steroids and toxic stuff these people put into their bodies and no signs of people with AU)
Right now i am taken tribulus terrestris (an over the counter test booster) and i have some hair regrowth, However not as much when I am injecting test.
I believe now that when I was taken the Steroids it put my body under a great deal of stress, I was working out 2 hours a day, for 6 days a week. I have read cases of people who lose a great deal of weight becoming AU, Stress from a death, Stress from work, they all seem to put the body into a great deal of stress and some times the body cannot handle it (I put on nearly 2 stone of muscle in 9 weeks)
I do think that when you inject test it DOES supress the immuine system and allows hair to grow . I have had AU for 2 years now and have done 2 cycles of steroids since then. If I took a drug test my test levels would be maybe in the range of 5 to 8 times higher then the average guy. As mentioned I have had regrowth when using test, However my doctor said my test levels (when off steroids) are in the normal range.
I dont think your testosterone levels are the reason. Were just like the thousands of other people on this site looking to pin it down on something.
I suggest you get a full hormone check. As mentioned my doctor was baffled by my case. He said that when you have any kind of auto immune disease it will show in your blood work. I had no signs of this. They were also baffled by how injecting test gave me some regrowth. Both the Auto immune and Hormone Doctor said that there is no link between test levels and hair.
Another thing I can add is that i read up on a few cases of men who had used steroids for so long that now their bodies now produce very little natual testosterone, There was many side effects for men with low test levels, however total hairloss was not one.
I hope this helps, Chin up
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Not entirely sure if this is relevant, but I'll throw it in anyway.....for 36 years I was an average joe, not very fit or very muscular. Early last year I made a great leap in my training, running and lifting weights. Gym 6 days a week.
I had occasional AA (once in uni, once during business problems) before. In the last 6 months I developed large patches, small patches and diffuse alopecia over the crown, where I would (i reckon) naturally recede based on genetic material (thanks Dad! :P). My legs and arms have started losing hair now.
I was taking some thermogenic and creatine which I stopped when I noticed the shedding.
All in all it happened over a 4 month period and, in the back of my mind, I can't help but think I was monkeying with Test/DHT/hormone levels with the training....I guess the Steroid use simply enhances the effects of "natural training".
Not sure if any of this adds to your picture, it's just my experience of training hard and subsequent accelerated (?) hairloss.
Either way, keep the head up ;)
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I believe it is not ruled out a link between hormone imbalance and alopecia, since so many cases in which alopecia begins in puberty, in fact my daughter as many girls began to suffer just when she had the first menstruation.
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Yes, I have been monitoring my AA over the last year and have noticed that I have a new patch turn up just a week before my monthly cycle. My friends consider me to be as calm as Yoda. I figure that something must be linked between hormones and the natural function of the immune system.
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Hi Andy, a long story but theres a point in it I think
In 2007 I went to my doctors for a check up. From that I was called back due to having a high cholesterol count over 11!!!!! but I felt fine. The doctor sent me to a specialist whom prescribed statins, I began taking these tablets (being a man) not following the daily dose but as and when I remembered. At the same time I was going through a paticularly stressful time at work in that they were trying to unfairly dismiss me and others. I continued taking the tablets but as I was not taking them as regimentaly as I should the doctor changed the tablets. The situation at work went further into a potential court case, my failure to take my tablets as prescribed continued I would remember mostly over two months and then fail to renew the prescription until seeing the specialist. Each time I visited the specialist he would every 6 months change the tablets for a stronger version due to my lazy attitude to taking the tablets this went on into 2008. There were small patches of hair missing from the rear of my head but they grew back, I went to see my doctors in 2008 and explained that I felt weaker, less able to concentrate, unable to focus and go to the next gear etc. I explained the situation with the company I worked for and that it was likely to go to court. My doctor diagnosed stress and prscribed tablets, the doctor explained the possible side effects etc and after consideration I decided I should not take them. All this time I was still taking the statin tablets for the control of my cholestorol. By 2009 I had settled out of court with my former employers and had a new job waiting to start.
Went to see the cholestorol specialist in May 2009 we noted some hair loss but again it was linked to stress, he again prescribed a new statin which as I had no other things on my mind I took everyday without fail.
Within months most of my facial hair and body hair had gone and I was feeling weaker, went back to my doctors. I enquired whether statins cause hair loss and after looking on the internet we found mention of it. I enquired whether the statin could have lowered my testosterone levels, the doctor thought not but we carried out a blood test. My testosterone was found to be low, my liver function was several times what it should be. I was instructed to stop taking statins immediately (been taking them for on and off 3 years by now).
Makers of the statin drugs state I am the first official case they have heard of with this extreme hair loss reaction, "official" means if it is not reported specifically they do not count it.
I have been pushing for testosterone injections to see if it would help, the specialist wants to wait and see for how long I am not sure. I am booked into see specialists in skin etc but I feel that trestosterone levels are an issue and the balance is fine between too little and too much.
Hope this info helps you or anyone else who reads it.
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Hi Abdul,
Sorry to hear about the work stuff. Never easy when things like that are happening.
I hope it all worked out for you.
On the hormone stuff, there are "testosterone boosters" that are over the counter used by Sports guys.
Might be safer to elevate your own testosterone production rather than taking shots? That's a whole other argument however....
Downside to testosterone production is of course the earlier onset of MPB (testosterone -> DHT), if indeed you were genetically predisposed to be heading that way in the first instance.
Also, when you are doing your timings, the hair growth phases can tie into periods of stress/events/physiological shock etc from months beforehand (badly explained, but hairloss today usually is associated with a problem from 3-6 months ago, and regrowth can be a bit random, occurring long after the events that caused it have gone away).
Hopefully things will improve for you.
This might cheer you up....a lady at work complimented my hair today (and I am balding/patchy/white all over). She asked if I'd dyed it and said the colour really suited me. I felt bad when I said I hadn't dyed it, you could see the confusion on her face.
Stay healthy and positive!
/Greg
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