Author Topic: Few updates  (Read 2322 times)


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Few updates
« on: December 16, 2016, 09:35:10 AM »
Hi guys,

Just wanted to check in after not being on here for some months now. I have never worked harder than I am right now trying to solve my EA and other symptoms and it's been one doctor's appointment after the other recently.

So I've been having plenty of blood tests recently and have become accustomed to requesting the results and studying them myself.  It's the doctor's job to do this but it appears they are relatively unconcerned unless there are bigger indicators. You need to be in pain or bleeding to death to get any help.

I've had perhaps 6-7 blood tests over the last 3-4 months and a few results have shone a light on potentially what could be going on with regards to my EA.

 I am quite a bit further down the line and I'm currently seeing an Endocrinologist after the Urologist exhausted his knowledge and resources and pretty much said it's all he can do. He is the second urologist to say this to me in 10+ years.

Firstly, my FSH is extremely low - out of range low. This hormone is produced in the pituitary gland in the brain.

Secondly, my SHBG (sex hormone binding globulin) is low - out of range low. This hormone is produced in the liver.

Interestingly I seem to have elevated heamoglobin (g/L) which can happen if a person is dehydrated at the time the blood is taken. I recently requested a private nutrition test (urine test) which came back as a fail due to my creatinine levels being out of range high - the reason given was that I was dehydrated, even though I wasn't and followed the water intake requirements of the test.

This 'dehydration' issue seems to an interesting theme and I do wonder whether it relates to the skin dryness I experience all over my body. It is not just my penis but my lips and skin, especially on my face and scalp which are often dry and itchy. I am always having to manage dermatitis somewhere on my body. I have long since eliminated costmetic products which could potentially be a contact irritant to these areas and I drink more water than most. I recently went back to drinking plain tap water after reading negative press about Brita water filters causing GI symptoms in some people.

I'm not exactly sure how FSH may be linked to my EA, but it is a hormone that is needed for sperm production and the volume of ejaculate now is much reduced than what it was before onset of EA. I experience dryness right through masturbation as well, with less precum being produced. Often times there is no precum at all, just tiny dribbles appear and that is only if I masturbate for a long time. If I masturbate quickly there is guaranteed to be no precum at all. I always masturbate using the foreskin because the head is extremely dry.

In addiction my penis size when flaccid has shrunken massively as well as when erect - some 2 inches or so. This all occured at the same time EA started in '06.

I still experience itching on my rectum and need to really scratch away at the rectum to relieve the itch. I paid for a private GI stool test recently which confirmed I do not have parasites which may be a cause of an itchy rectum for some people. For me the itching occurs specifically after I defecate. Sometimes I wipe so hard to relieve the itch it causes slight bleeding but this is an area that quickly heals up so I am not concerned over the long time. I should also note anal massage/strecthing I had some months ago did have positive affects at the time but I cannot say whether they have been lasting as the irritation is there still.

I am waiting to hear whether I am a celiac sufferer - this is through a blood test. I was recently told I am NOT diabetic or anemic which is good.

I am due to see the endocrinologist again next week and I will ask to test all of the following hormones, some of which will be repeat tests:

Total T          -         unconfirmed
Bioavailable T   -        unconfirmed
Estridol -        (not yet tested)
Free Estridol -      (not yet tested)
SHBG   -      LOW
Prolactin       -  (not yet tested)
DHT       (not yet tested)
LH      (not yet tested)
FSH -    LOW
TSH - upper end but within range

I am having to research and request the testing of these hormones because they are not doing it voluntarily.

I still want ruled out a potential pituitary adenoma as this may be the cause of my low FSH. I want to know specifically why the FSH is suppressed.

My TSH (thyroid stimulating hormone) has been normal the last 2 blood tests, but there was a test some months ago which showed it to be elevated - I put this down to being ill with a cold at the time and hormones will often elevate or be supressed in response to stress/infection.

I should mention that my testosterone was only measured as TEST  and there is no differentiation between free T and total T which is annoying.

My triglycerides are high consistently which research suggests to be an inflammatory marker or precursor to certain diseases. I could certainly stand to lose a few pounds, so this may decrease with lifestyle change and not be related to all above.

What I want to know is what caused my penis to seemingly shrink and shrivel at the same time I developed EA. It is still not clear whether there is a muscular issue at play inhibiting blood flow to the penis or whether this is purely hormonal. This is an interesting thread : I'm curious that perhaps maybe I do suffer from ED, despite not really understanding what that is, and that I was in denial about it. The thing is I can always manage erection and ejaculation, the trouble is I feel very little from start to finish.

So right now I'm still hesitant as to whether this is a pelvic floor issue as my hormones are not what they should be and I await an explanation for this. I still have further hormone tests to do and in addition to this I want to be lyme tested.

I should note also that my vitamin b12 and vitamin d3 levels are well within range, so I've ruled both of this out now.

I am still eating gluten free.

I am still doing pelvic floor exercise but not everyday. I did find that they helped orgasm release but I cannot say for certain whether they improved sensation. I think any aerobic activity will boost the immune system and cause elevations in testosterone.

So this is where I'm at right now.

Apologises for the way this is written - very scatter brained. It's how the information has come to me, I've just typed it out.

Hope you are all well and I will report back soon.


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Re: Few updates
« Reply #1 on: December 17, 2016, 12:12:25 PM »
Hope you're feeling better
I've been feeling a lot better lately but I've taken the opposite approach of just going out and living. I've been obsessed the last year but it got me no where.  I've had some pleasure back and a huge amount of "relief" after ejaculating.  My mind buzzes and I have huge relaxation moments, I've also started to shutter with muscle spasms after ejaculating.

Anyways I have the anal itch issue too. It's pelvic floor related for me because the tightness causes hemmorohids, itching and other ailments

Try to enjoy living out will do wonders

Best wishes


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Re: Few updates
« Reply #2 on: December 28, 2016, 03:10:14 AM »
Hi, Rocket.

Interesting about the endocrinology. The low FSH sounds like classic secondary hypogonadism.

I'd be very interested in hearing about the blood results, and particularly DHT, since almost no one seems to test for that, and mine has always been at the bottom of the range or below.

I have some skin issues as well. In the hair, eyebrows, between eyebrows and above, and face to either side of the nose. Usually not all at one. But it will get red, crusty, and itchy in the hair, with similar but less pronounced problems on the face.

And the incredible shrinking penis. That is interesting. Did the urologist have anything useful to say about that?


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Re: Few updates
« Reply #3 on: January 01, 2017, 02:10:09 AM »

Low SHBG may be linked to development of metabolic syndrome, hyper insulin syndrome, T2 diabetes etc..

Risk are: abdominal obesity, high trigl , bad cholesterol, low shbg

According to pubmed: men with these conditions often develop hypogonadism WITH symptoms .

The symptoms can start before diabetes or pre-diabetes.


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Re: Few updates
« Reply #4 on: January 03, 2017, 08:43:26 AM »
Hi guys, happy new year to you both and everyone here.

Over the past few months I decided it's best to chase the data and I've been having more blood tests since I posted. I also finally have an MRI scan of my brain booked which will look specifically for adenomas or cysts in this region (not sure if I mentioned this before). It's a test I've really had to fight for because the state health system here is terrible.

The overall trend does point towards hormone dysfunction and I relate to a lot of the low FSH related symptoms mentioned in that thread - noticeably the drying out of the glans of the penis and a reduction in ejaculate and pre-cum which occured with the EA.

Thanks for mentioning hypergonadism because I've come across that in conjuction with my abnomal hematology readings as well. It is one of many reasons I want to be lyme tested but the state system is not helping with this so I've identified a private lab which will do the tests which I will have to pay for privately. Before I embark on potential hormone therapy I want to establish whether I have lyme or not. 

This is a good read:

This post in particular:

Dr. James Howenstine, a Lyme Disease expert, states, “Profound dysfunction of the hypothalamus, pituitary, adrenal, thyroid glands and gonads is very common in mycoplasmal, fungal, and anerobic bacterial infections. He goes on to say, “There is considerable evidence that many patients with Chronic Fatigue Syndrome, Fibromyalgia, and Lyme disease have an infectious disease. Lyme disease needs to be considered in every patient with a chronic illness.”

Many of those who have Low Thyroid or Low Adrenal function have also been diagnosed with either Fibromyalgia or Chronic Fatigue Syndrome, which to me are “catch all” diagnoses that Doctors have used in order to “label” us with a disease they don’t understand.

There is considerable evidence that these diseases are actually caused by either a bacteria or virus. And, because of these infections, our bodies’ immune systems’ are weakened. That theory, in turn, pre-disposes us to developing various autoimmune disease as well as Thyroid and Adrenal disorders. My own son was perfectly healthy until he was bitten by a Lyme infected tick. This, I truly believe, set the stage for his own Thyroid to fail."

What is most worrying to me is that I was very active as a youth and I do remember a raised and pink rash which spread outwards at around the age of 10-14 years of age. Strangely this was around the time I remember first experiencing gastro and skin issues which have persisted ever since. The rash lasted for approximately one - two weeks before fading and covered half my chest area. I have never been out of Europe but I have been in many woodland areas as I was very active as a child. When I mentioned about having myself tested to the state doctor's they all drew a blank. I think there is a lack of education of what lyme is amongst general practitioners, it is potentially being ignored at least in this country, and that I find worrying.

I'll keep this post updated and will report back when I get my next round of blood results which are specifically hormone related blood tests, covering (hopefully) DHT, Estradiol, LH (most of the hormones mentioned in that previous link where the issue of shrinking penis and hormones are discussed. The trouble again is the state labs are incompetant. I have had to have repeat bloods taken because they have not provided the information they were supposed to.

On the subject of low SHBG I was tested for diabetes but it came back as normal.
« Last Edit: January 03, 2017, 08:45:47 AM by RocketTN3 »


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Re: Few updates
« Reply #5 on: January 04, 2017, 02:31:53 AM »
Theres x100 times more chance the problems are caused by extra pounds of BF  - specifically visceral distributed then the Lyme angle. I am talking not just overweight but a with specific pattern: visceral obesity, fat on the neck or chin, bad lipids + low shbg. Unlike some women, Guys put it on in the wrong places. Its easy for it to be missed by doctors. Basically its even worse than being 'normal' and tobacco smoker.

Note : diabetes isn't always diagnosed as a rule. This 'metabolic syndrome' appears before that or with diabetes.

This can also raise risk for apnea and a host of other insidious issues. Its known that theres a sexual dysfunction apnea link just like the metabolic thing.


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Re: Few updates
« Reply #6 on: January 05, 2017, 06:00:34 AM »
Many thanks for the suggetion I will raise that with the doctor when I next see them. You could be right, I may have the early signs of diabetes or I may be suffering from metabolic syndrome. The classification confuses me though because even at lower weights (I am not that heavy now) I still retain a fair amount of body fat mostly around my abdominal area. The rest of me is relatively lean. I do not have a fat neck or chin. My symptoms do not improve with exercise. What other factors may influence low SHBG, fatty liver?

Also to say as well that I am waiting on a test for chrons disease, it's called a TTG antibody blood test which will show if I am producing gliadin antibodies to wheat gluten.
I also paid privately for a GI test (stool test) and the results that came back were interesting. The data showed that my calprotein and eosphil protein x were within normal ranges but my secretory IgA was extremely high. Where IgA is high but the other two are low it is likely I suffer from IBS or leaky gut. If all had been high it would likely have been a more serious issue such as chrons disease or some such disease that falls under the umbrella classification of IBD. I also take into account the fact I have genital lichen sclerosus (diagnosed by a dermatologist) which falls under the autoimmune umbella.

So I have confirmed gut inflammation and confirmed lichen sclerosus both autoimmune related -- why? That is what I want to find out.