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Paseo
05-14-2008, 01:19 AM
Hello everyone,

I am new to this site and just wanted to get some information before questioning my doctor.

About me, I'm 29 years old, have 2 children, wife, and steady job. I have been dealing with irritability, mood swings, fatigue, low libido, problems with erections, etc for years now (starting around 18/19 years old). I (or any doctor I've had) have not suggested low T as a possibility for these symptoms.

My father will be 57 this year and he was diagnosed with low testosterone. I recently switched to a new insurance and a new doctor. I told my doctor about my father and he wanted to test my levels. That was today and my labs came back online (kaiser permanente). My doctor hasn't seen them yet, but my T level was 291 ng/dl. Futher note: I lift weights 3 days a week, the test was done at 8:30 am after fasting. My levels at this time of day are at their highest levels (from what I have read); especially since I lifted weights the day before (btw, I usually have to force myself to exercise due to fatigue). Also, it seems like I cannot lose any weight. I am just under 200 lbs at 5' 9.5". I watch what I eat, lift weights, and do cardio, but the fat stays.

I have done some research online and it appears that I should have levels closer to 700+ for my age. Can anyone verify this? I want to tackle this head on if it is low. Also, I would like to be prepared when I speak with my doctor about this. If it is indeed low, then I would like to have a list of further testing I need because I have read it could be a pituitary problem or even my thyroid.

Thanks in advance,
Paseo

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hayfarmer
05-14-2008, 12:56 PM
Paseo, it does appear you have low T. Too bad you have had to suffer so long with no diagnosis. You are right 700 is closer to nomal for your age than 291. Unfortunately as you may have found if you have been reading this board, it is very hard to find a doctor who knows how to treat this.

Further testing is done to try to isolate why your T is low. You can have primary hypogonadism (where the testicles are not working well) or secondary (where the brain is not sending enough LH to tell the testicles to make more T). If you can find out why your T is low it will tell you what treatment to try. Tests should include at least total T, LH, FSH, SHBG, prolactin, estradiol, total estrogen, TSH, vitamin D 25OH and an iron panel. Your doctor may just want to run LH, FSH, and total T initially. If LH is high while T is low then you are primary. If LH is normal or low then you are secondary. The other tests are done to try to determine why you are secondary. If you find nothing in the blood work you need an MRI of your pituitary.

I have to wonder how well an HMO doctor will go along with all this or even know what to do. I don't have a good opinion of HMO's though.....hopefully they will prove me wrong here.

Please be aware that if you go on T replacement you will suffer from testicular atrophy which will include low sperm count. How much atrophy and how low the sperm count varies from man to man. This can be avoided by using HCG instead of or along with T replacement. HCG is almost identical to LH and will keep your testicles working. Do a lot of reading up on this here and elsewhere so you are informed.....you fill find your doctor will probably not be informed and is not even likely to tell you the T replacement will make you infertile.

Paseo
05-14-2008, 01:13 PM
Hayfarmer,

First of all, thank you very much for your prompt and informative reply. I have done a ton of reading on this site since yesterday and you are well informed on this subject. I think I speak for everyone when I say thank you for all the time you have put into this website. Ok, onto my reply...

About infertility... I have 2 of my own children with my wife and we are also fostering 2 children (our niece and nephew). My wife just had an IUD put in last month and we have no plans for any more children.

I will get the testing information to my doctor as soon as he responds to my email messages. I am anxious to know what the tests will show and excited at the same time because I have been living this way for quite awhile now. I was told by doctor's in the past that I simply had "the physical manifestation of depression" and was given anti-depressants. They seemed to "help", but never really tackled the problem. I have been worse sexually lately especially my libido.

Once I talk to my doctor I will post again with his reply and subsequently the additional lab tests.

By the way, do you know of any good doctors in the Portland, Oregon metro area?

Thanks again,
Paseo

hayfarmer
05-14-2008, 02:35 PM
Sorry, don't know of any doctors in that area. You could call around to endos specializing in reproductive endocrinology and/or pituitary problems. Also you could try urologists. Ask how many men they treat with hypogonadism and do they test for estradiol in addition to T....and do they use HCG therapy.

Even if you do not want children you may want to pursue HCG. It is a personal choice but I also do not want more children but do not want my boys to disappear forever. Plus, I feel best on the days I take the HCG so I think there are added benefits. ONe thing I noticed on T replacement alone was my testicles would hug my body so close I sometimes had to search for them to make sure they were still there. They would get in the way during sex too which was annoying.

It's very common to misdiagnose this as depression because depression can be one of the symptoms.

I feel your excitement. I was excited too when first diagnosed because I suffered for 3 or 4 years first too. I just don't want you to make the mistake I did and jump into the wrong treatment. I took androgel for 4 years and it just didn't work well for me. T did not get high enough I suspect. I could only get it up to the low 500's typically. Sometimes I felt good but would have periods weeks long where I did not and had ED.

joe132
05-14-2008, 02:48 PM
Not to hi-jack the thread, but im curious, at what dosing were you at on the androgel hayfarmer that got your t to the 500s?

Paseo
05-14-2008, 02:56 PM
Thanks again for the information. I have written everything down and will first see how open my doctor is to do further testing before pursuing a specialist.

So, do you take Androgel and HCG together now or are you using a different form of TRT along with HCG?

As a side note: my father said he was diagnosed, but the doctor's didn't due any further testing, they simply put him on Androgel. He started off at 5 mg and his T levels went up slightly so they boosted him up to 10 mg. His T levels went up slightly again, but not very high so they bumped him dose up to 20 mg. After reading through these posts it seems to me that my dad should be further tested to see if any of his other numbers are out of whack. I think his doctor is simply trying to treat the symptoms and not the potential problem itself.

hayfarmer
05-14-2008, 03:41 PM
I take T cypionate injections once weekly and HCG 4 times a week. 20 mg of androgel a day is a huge dose. It is quite expensive, I hope you dad's insurance pays for it. You can get compounded creams much cheaper and stronger so you don't need to rub in such a huge volume. I agree your dad should have been tested further....this is the norm for treatment - to treat the symptom and ignore the cause. But remember in many cases the cause can not be found. However in some you may be ignoring a condition that could be fatal if not diagnosed correctly.

One other thing on androgel....it can raise DHT more than injections. DHT can lead to male pattern baldness if you have that gene. So, it can contribute to hair loss more than injections for example.

Paseo
05-14-2008, 05:01 PM
Well, I received a reply to my email from my doctor. He said that we would discuss it on Monday when we have our phone appointment to discuss test results. Should I wait until Monday or should I press further and/or start looking for a urologist or endocrinologist?

Also, around the same time these symptoms started I also started having gastrointestinal problems. About 2 years ago I had a colonoscopy and nothing was found so they diagnosed me with IBS. Is it possible that low testosterone could casue gastrointestinal problems?

joe132
05-14-2008, 05:27 PM
Are you on any pills for stomach problems. Ive recently learned/read that some pills for gerd like nexium can cause hypogonadism. Ive been on these pills for years and wonder if thats a contributing cause. Im not sure how they cause the hypogonadism though.

Paseo
05-14-2008, 06:01 PM
yes, I am on omeprazole (prescription Prilosec), but I have only been on them for about 2 years now. I guess they could be a contributing factor, but I have no choice but to be on them probably for the rest of my life. I have scarring so bad in my esophagus that they had to use a balloon to stretch it open. That is an interesting angle and I will look further into it.

Paseo
05-14-2008, 07:26 PM
I was reading other posts today and noticed these other tests:

thyroid
DHEA
IFG-1
E2

Is this in addition to the testing you talked about earlier, hayfarmer, or are they already included? If not, do you recommend this testing as well?

Thanks!

hayfarmer
05-14-2008, 11:14 PM
thyroid would be the same as the TSH test.....E2 is an abreviation for estradiol...the others are adrenal tests. Sometimes people with T issues also have adrenal issues. The adrenals are glands on the kidneys that make various hormones includeing a small amount of T. I'm not much of an expert on adrenal issues so I don't really know if those two tests should be included.

Paseo
05-15-2008, 03:48 AM
Not to push Morgan out of the way, but I have some more information that may or may not be pertinent and I was curious if anyone had any feedback.

When I was 16 I had a dull achey pain in my testicles that at times would force me to sit down. I went to a urologist that said I had a "spermatiseal" (sorry about spelling) on one of my testicles. He was surprised to see that it was on one side of my testicle because he said they were normally surrounding the entire testicle. He said it was nothing to worry about and simply told me to take ibuprofen when it hurt.

Fast forward about 3 years and I was back at the urologist with the same pain. Also, if I let water hit the same testicle while taking a shower it would send a sharp pain through it. The other addition to the wanting to go back to see a urologist happened when I started to become more regularly sexually active. When I ejaculate, one or both of my testicles goes up inside of me. You can see them bulge out of my pubic area. In order to get them back where they belong I would have to physically push them back into my scrotum and this would at best be uncomfortable and at worst be pretty painful.

Anyway, the urologist had an ultrasound done on my testicles and noticed that the one testicle with the pain seemed to be oddly shaped and had a cyst. He also noted that it appeared that the testicle was "backwards". He said that it should be turned the other way and that would account for why it was more sensitive than the other. Regarding the retraction of the testicles into my body, he said that it appeared that when I was very, very young that it was possible that my testicles didn't make it all the way into my scrotum and that they most likely made it down eventually leaving the area they traveled down open. He asked me if I needed to have them surgically moved down and I was unsure. My mother later told me that I had some sort of a hernia when I was a baby, but she was unsure if it had anything to do with my testicles or not.

Basically, I am wondering if anyone feels that this (these) problems could have anything to do with low testosterone?

Before I forget, around the time I went to the urologist the first time (when I was 16) I had just started masturbating. I remember this very clearly because of the pain. I was ejaculating after masturbation and my left testicle (the testicle with the pain issues), hurt so bad I thought I was dying. It was all pains wrapped in one, but mostly it was like white hot burning pain. After that it felt like my testicle "stopped working". It just didn't seem to "act" right. I don't know how to explain that other than the gut feeling I had. Ever since then I have been dealing with a dull achey pain in it. Is it possible that this testicle has "shut down" and could be the cause of my low T levels?

Let me know what your thoughts are...

I will check back in regularly and will let you know how my talk with my doctor goes...

hayfarmer
05-15-2008, 11:12 AM
I guess it is possible your problem is testicular. The only way to know is to do additional testing. If your LH turns out to be high then you will know the issue is testicular. In that case there is not much you can do except to go on T replacement. If one of the testicles is still working you may still want to use HCG also but that would be up to you (assuming your doctor will go along).

Paseo
05-15-2008, 01:27 PM
Is there a way to determine whether each testicle is functioning properly on its own? Also, if it is testicular, would there be any other reasons why they would not be functioning properly (i.e. cancer, disease, etc)? If so, do doctors generally do more testing at this point to determine a cause as to why the testes are not functioning or do they simply diagnose primary hypogonadism and treat it with a combination of TRT and HcG?

hayfarmer
05-15-2008, 08:17 PM
Thats a good question and I don't know the answer. Maybe someone who is primary on the board will answer it. I would expect a urologist to do at least an ultrasound to see if he can find the problem but I don't know to be honest.

Paseo
05-15-2008, 11:03 PM
It would be interesting to know if anyone has an answer to that question.

Also, I don't know if these tests are pertinent, but here are the results of my lipid panel:

Cholesterol 204 - mg/dL
Triglyceride 87 < 150- mg/dL
HDL Chol 35 > 39- mg/dL L
LDL Chol 152 - mg/dL
Cholesterol/HDL 5.8 < 7.9-

And my comprehensive metabolic panel:

Sodium 142 136-148 mmol/L
Potassium 4.3 3.5-5.1 mmol/L
Chloride 104 97-109 mmol/L
CO2 29 22-32 mmol/L
Glucose, Random 97 < 201- mg/dL
BUN 21 9-25 mg/dL
Creatinine 1.1 0.6-1.3 mg/dL
GFR Afr Amer (MDRD) 96 -
GFR nonAfrAmer (MDRD) 79 -
Total Bili 0.5 < 1.2- mg/dL
Total Protein 7.2 6.4-8.0 g/dL
Albumin 4.6 3.40-5.20 g/dL
AST (GOT) 24 5-43 U/L
ALT (SGPT) 15 10-58 U/L
Alk Phos 66 40-129 U/L
Calcium 9.8 8.4-10.2 mg/dL

Any of this pertinent to my low testosterone level of 291 ng/dl at 29 yrs old?

Paseo
05-16-2008, 06:14 PM
Update:

My doctor had me go back to the labs to have my LH, FSH, and testosterone tested.

Here are the results:

LH 4 < 11- mIU/mL
FSH 2 < 19- mIU/mL
Total T 285 (down from 291 on Monday)

From what I have been reading this is generally indicative of secondary hypogonadism because LH and FSH are low while total T is low.

Am I right to draw this conclusion? Also, am I ok to order the next set of labs to see if there is an underlying issue to it being secondary (i.e. SHBG, prolactin, estradiol (ultrasensitive), total estrogen, TSH, Vit D 250H, cortisol, and an iron panel (iron, ferritin, TIBC, sat &)?? If so, any other tests to add to this list? DHEA? IGF-1?

Thanks in advance for the help!

hayfarmer
05-16-2008, 09:00 PM
Yes, this does indicate you are secondary and yes you should run the other tests. If they do not show anything you should get an MRI of the pituitary.

Paseo
05-16-2008, 09:58 PM
I know what LH does from my research, but what is considered a low vs. low-normal vs. normal? Also, what exactly is FSH and its role in the body as it pertains to T and LH? Finally, what is considered a low vs. low-normal vs. normal for FSH??

Btw, anyone see anything from my lipid or metabolic panel to be concerned with? Hayfarmer?

Thanks again for all the help!

hayfarmer
05-17-2008, 01:17 AM
With a lot T level LH should be high....anything below the top of the normal range says you are probably secondary. FSH (folicle stimulating hormone) is what stimulates the testicles to make sperm. It tends to go up and down with LH but not always. When sperm is created the testicles create a hormone (I forget the name) that the hypothalmus recognizes. If too low FSH should go up indicating more sperm is needed. However, when there is something wrong with the pituitary making LH too low, FSH is also quite often too low.

I think you mean what is too high for TSH. TSH is Thyroid Stimulating Hormone. This is a big debate but I would te concerned if it is over 3 and definitely if it is over 4.

Your lipids don't look that great but that is not surprising. Whatever is going on also effects the lipids. HDL is way too low in particular. Not much you can do except to exercise regularly....limit fatty foods.....lose weight if possible......limit alcohol.....eat plenty of omega 3 as in tuna and ground flax seed. I put ground flax seed on salads, sandwiches, and mix it with yogurt.

Paseo
05-17-2008, 07:11 AM
Ok, I will hopefully get these other tests done on Monday so that my doctor and I can discuss what to do next. I think I may have gotten lucky with this primary care doctor. He seems pretty open to doing these tests.

Update on how I am feeling:

For about the last six months or so I haven't been sleeping too well. I will wake up in the middle of the night and then almost every hour until I have to get up. "Normally" I sleep through the night, but still feel tired in the morning. Also, recently I have been falling asleep at odd times and have not been able to stay awake, even after 1 glass of wine. "Normally" I can keep myself awake until I finally go to bed. My libido is almost non-existant. I cannot get aroused unless I am manually stimulated. I have no spontaneous erections and occasionally have an erection when I wake up, but it goes away immediately. "Normally" the erections stay for awhile, even when I try to pee.

Note: when I say "normally" I mean the majority of the time since prior to about 6 months ago, but I have been dealing with these issues for almost 10 years.

Anyway, these are just a few of the symptoms I have had going on for a long time and I am excited to finally have the opportunity to find out what is going on with me. I will keep everyone posted...

Paseo
05-18-2008, 07:15 PM
I have a couple of clarifying questions before I talk with my doctor tomorrow afternoon.

First of all, at 29 years old (just turned 29 on 4/1), a T level of 285 is definitely considered low? I am reading that a 29 year old male should be around 750+.

Also, considering the fact that LH & FSH are low, it definitely points to a secondary cause of hypogonadism. If the tests come out clean and say, HcG is used to increase LH, is it possible that T levels do not increase? If possible, does that mean that a person could have primary and secondary causes of hypogonadism?

Back to T levels. I read a study that compared the levels of low T to mortality rates in geriatric patients. The level of T considered low for a geriatric patient was <300! I'm 29 and have levels less than 300!! They did find a correlation between low testosterone and death.

Anyway, I guess I am answering my own questions, but I have read things that possibly suggest that I don't have low T.

hayfarmer
05-19-2008, 02:56 PM
You definitely have low T. You are very low for your age (an avg level for your age would be around 700) AND you experience symptoms of low T. Don't let any doctor tell you otherwise.

HCG will not increase LH. HCG is a replacement for LH. HCG is almost identical to LH and for most men can stimulate the testicles to make T just like LH does. However, it is possible the HCG will not get T levels high enough. If T does not increase at all while on HCG then it would suggest you are primary and secondary at the same time. In my case T did go up with HCG but it did not get high enough so I am taking HCG and T cyp injections at the same time.

Paseo
05-19-2008, 04:08 PM
Thank hayfarmer. I am just seeing so much stuff out there and sometimes it hard to dig out the truth. I did, however, find an AAEC pdf that had the clinical guidelines in diagnosing and treating hypogonadism.

This is what I have learned from the guidelines as they pertain to myself:

Testosterone levels vary by age of patient so they really don't hint towards a "normal". They did mention that males in general are suitable for treatment at 300 ng/dl or below, but mentioned that they generally had to be symptomatic.

30% of males aged 75+ have testosterone levels of less than 319 ng/dl and this is where most studies are finding that treatment should begin for "aging" men. My levels are sub-300 at 29!!

Based on the guidelines, I fit into the "hypogonadotropic hypogonadism" diagnosis. Low T, Low-low normal FSH & LH.

Still haven't heard back from my doctor about the next round of testing.

Paseo
05-19-2008, 05:24 PM
Hi everyone, just an update for you after my phone appointment with my doctor.

He believes that my numbers "could" point to hypogonadism, but he does not feel comfortable ordering tests that he doesn't know anything about. So, he referred me to an endocrinologist. I don't know any good ones up here in Portland, but I guess I will just have to wait. The office will call me and setup an appointment.

I told my doctor about my other symptoms along with this and told him and I don't want to be treated until I find out what is going on and he commended me for that because a lot of patients demand treatment without further testing.

I still could not convince him to order the new labs. I will just have to wait until the endocrinologist orders the tests.

Anyone have any other ideas? Can I do anything to get these tests done sooner? I know I won't be seen for at least a month.

Paseo
05-19-2008, 06:25 PM
I have been doing reading regarding testosterone testing and different labs. Can someone please clarify the different "ranges" as they pertain to both individual patients and different labs?

My last T test was 285 ng/dl with the range 175-781 ng/dL. How can the range be all the way down to 175? I have read directly from the AAE that levels below 300 were considered hypogonadism.

Thanks for all the help.

hayfarmer
05-19-2008, 09:38 PM
The range is that low because it includes all men of all ages, regardless of medical condition. As you said above, 30% of men over 75 have levels under 319. Well, they are all included in the range the lab comes up with. How stupid is that?

The bigger problem comes in when doctors do not know what the range means. They don't know that if you came in there at age 30 with a level of 225 and had all the symptoms of hypogonadism that you really do have it. All they know is you are normal according to the lab. Bascially, they don't know what they are doing when it comes to treating this disease..........of course this does not apply to all doctors.....just some of them.

Paseo
05-20-2008, 06:24 PM
Follow-up:

I received a call from the endocrinology department saying that someone in some sort of "triage" unit that looks at all the patients and results has ordered a couple more tests for me to take tomorrow morning.

They are for:

Prolactin and Free Testosterone.

Can someone like hayfarmer can touch upon both of these tests and let me know what to expect? Maybe "normal" levels I will be looking for? Also, what each means if it is too low or too high.

Will post the results when I get them back.

hayfarmer
05-20-2008, 11:40 PM
Prolactin is secreted by the pituitary at high levels on orgasm. It has several effects that cause you not to be able to get sexually excited or achieve erection for a period of time sometimes called the refractory time. High prolactin can also be a cause of low T if it remains high all the time. The most likely cause for it to be high all the time would be a prolactin secreting adenoma (or small tumor) on the pituitary. This is a good test to get.

Free T is the T that is not bound to proteins like SHBG and albumin. Free T is the active T that gives you many of the good effects of T. There are multiple test procedures to use for free T so the normal range the lab gives can vary a lot from one test to the next. My doctor thinks the free T tests are not that reliable so he prefers to go by total T and SHBG and estimate what free T should be. If you have your total T and SHBG values handy I can tell you approximately what your free T is....assuming your albumin is not high for some reason.

Paseo
05-21-2008, 09:59 AM
I haven't had my SHBG or albumin tested. They won't test me for that stuff yet. I guess they are going for the more "structured" approach as opposed to just doing it all at once. I'm assuming that they want to rule out a prolactin problem and an iron problem. The only reason I can think of that they are doing the free T test is to see if I have a suitable amount of T available. If that is high enough maybe they will conclude that my total T doesn't need to be higher?

What constitutes a high number for prolactin?

Thanks!

djpatd
05-21-2008, 12:46 PM
Have you ever taken anti-depressants or been exposed to pesticides?

Paseo
05-21-2008, 01:00 PM
When I was around 21 years old they put me on Welbutrin because of my constant fatigue. It seemed to help, but I didn't like some of the side effects. I was on them for less than 6 months. Then I was off of them for many years until about 2 years ago. A rheumatologist thought I had fibromyalgia and gave me Welbutrin XL. I took it for a couple of months, but had some of the same side effects I had years prior so I went off of them. That's when I pretty much gave up with the fatigue, irritability, mood swings, etc. I was starting to have some sexual problems, but they were few and far between. It has been getting progressively worse since.

As for pesticides, no exposure to them that I am aware of.

djpatd
05-21-2008, 01:04 PM
My low T came shortly after an exposure to pesticides plus I was on anti-depressants for many years. If you go to you tube and search PSSD you will hear of some stories of people who were once on anti-depressants and they now have caused long term sexual dysfunction.

djpatd
05-21-2008, 01:11 PM
What saddens me is the medical community will be quick to put a person on anti-depressants and not rule out the root cause. They are too quick to write a prescription, get us out of the office before the next patient arrives.

There are some good doctors like Marc Darrow, M.D. He is in LA (wish I could see him), quoted in Susanne Summers books, and I hear his radio show: Healing, Happiness and Hormones. He too has low T!

hayfarmer
05-21-2008, 07:51 PM
Ahh, that is the key. Find a doctor with low T and you will find a doctor who knows how to treat low T. Great post dj. Why can't you see him?

Paseo
05-21-2008, 10:33 PM
I just received test results from 5/16 that is reporting free T. Tell me what you all think.

Testosterone,Total,LC/MS/MS
254 ng/dL 250-1100

% Free Testosterone 2.75 H % 1.50-2.20

Free Testosterone 69.8 pg/mL 35.0-155.0

And all of what we know so far:

Total T 254 ng/dl 250-1100
% Free T 2.75 H % 1.50-2.20
Free Testosterone 69.8 pg/ml 35.0-155.0
LH 4 <11
FSH 2 <19

Why is my % free T so high?

Does this mean that my free T is high enough at 69.8 even though my total T went down to 254?

hayfarmer
05-21-2008, 11:05 PM
Most likely it means your SHBG is low. Most T is bound to SHBG. Free T is the T that is not bound. So the lower your SHBG number the higher your free T will be. Free T is the important T, so this is good to a certain extent. But your free T is still too low as you can tell by how you feel.

Paseo
05-21-2008, 11:55 PM
So, when the doctors see this are they going to tell me that my T is fine or are they already conceding that my T is low and that is why they are ordering the prolactin and iron tests?

Also, my % was high, 2.75%, but my total free testosterone was only 69 on a range of 35-155. While I am waiting for the prolaction tests, can you tell me what the correlation is between high prolactin and free T? Is it possible that total T would be lowered by high prolactin, but free T would remain relatively normal?

Paseo
05-22-2008, 09:09 AM
In addition to the above questions, can anyone provide me with some answers to some physical issues I have been having?

Last night my wife wanted to have sex and I simply haven't been feeling into it, but we started making out and I noticed that I got an erection, but still didn't feel like having sex. Is this uncommon for what is going on?

Also, when we "normally" have sex, it feels really good, but now it's almost like its "dulled". When I build towards orgasm it's normally a "smooth", almost fluid process, but lately it feels staggered, like it gets a little more here, and then a little more here, so on and so forth until finally I orgasm. Lately the orgasms have been none to small, but this one was a little better.

Can anyone confirm some of these issues?

Also, sometimes I wake up with morning erections, but they are gone before I make it 8 feet to the bathroom. Normally, I have to wait or try to pee at odd angles. I have also noticed that some mornings I don't have erections at all.

Finally, can anyone tell me if these issues seem more or less a problem of low T or can it be further attributable to an underlying cause of low T such as high prolactin vs. normal levels of prolactin.

Thanks,
Paseo

hayfarmer
05-22-2008, 04:19 PM
Your symptoms and loss of sensitivity in the penis are due to low T. High prolactin can also possibly cause some of the symptoms but it is more likely to cause loss of libido and can cause T to be low. The free T in the normal range is due to SHBG being low most likely, not due to other factors. I think your doctors have conceded you have low T which is why they are running additional tests to see if they can figure out why. If they try to tell you no treatment is needed because free T is in the normal range point out to them that you have symptoms of low T and total T is low so you feel you need to be treated.

Paseo
05-22-2008, 04:34 PM
Thanks hayfarmer, I'm hoping to get some of these results soon. One other symptom I wanted to talk about: headaches. I never had headaches until about 2 or so years ago. Now I get headaches almost on a daily basis. I never put this together until I started reading about adenomas & prolactinomas. Can someone get these headaches simply from low testosterone or do they generally get these headaches because they are associated with prolactinomas?

Also, I just received word that my doctor (not the endo) wants me to take a thyroid test. Should I take this test now or should I wait for the results from my prolactin test?

Thanks!

LALOV929
05-25-2008, 12:17 PM
There are so many possible causes of your headaches that you will not
likely know the cause until you get to the bottom of your problems. I
have been told to keep a log of what is going on whenever my headaches
develop as that will help pinpoint the cause. Stress, tension are very
often the cause.
Can't see any reason not to take the simple thyroid blood test right away.
It might help you get the final answers you need that much sooner.
Especially since the thyroid is regulated by the pituitary also.

Paseo
05-25-2008, 01:39 PM
Yeah, I think I will have to go in first thing on Tuesday morning (since the clinic is closed on Monday for the holiday). The headaches can be caused by alot of things, but considering the symptoms together, they seem to point to some sort of adenoma whether secreting or non-secreting. That is why the prolactin test is crucial. Elevated levels >18, usually around 20-50+ generally suggest a non-secreting adenoma or thyroid issues. High levels, generally 250+ suggest a prolactinoma. In any of the above cases, I should at least see some form of elevated levels of prolactin. That will narrow it down some more. If prolactin is "normal", generally <18, but usually around 10, then that suggests that no adenoma exists, but other pituitary or glandular issues could exist.

In short, the thyroid test would come after the prolactin test because low testosterone and other symptoms of low testosterone exist. Whether they test the thyroid or not regardless, I am not sure. But, if that was the case, I would assume that they would simply do a full panel of tests to get them out of the way and since they have not I assume they are following some sort of "structured" approach.

Paseo
05-27-2008, 04:24 PM
The endocrinologist sent me an email regarding the prolactin and iron tests. His email stated that the levels were normal, but he did not state what the levels or ranges actually were. I pressed and he said he would give me copies at our visit on Thursday.

Ok, assuming the prolactin levels are normal and not elevated, can all these symptoms be the cause of something else? A non-secreting pituitary adenoma? Could that cause all the symptoms I am having including headache, nausea, loss of appetite, and all the low T symptoms? Or should I be looking somewhere else? What road should I press to go down? They seem to want to take this one small step at a time and I guess I will be needing a general idea on which way this will be taking me.

Thanks...

hayfarmer
05-28-2008, 12:52 AM
I don't think you can assume the headaches are due to the same problem as the low T. They could be, but there are so many possible causes of headaches that you can't jump to that conclusion. On the T side it sounds like you have run all the tests so far except for TSH? Did you run estradiol and total estrogen? Once you run all these with no red flags it is time for an MRI anyway....the MRI may help look for causes for headaches also.

If you get your iron numbers, post them. Diagnosing hemochromatosis is often difficult even with the iron number in hand.

Paseo
05-28-2008, 06:35 AM
The headaches and pressure started focusing around the top of my left eye towards my nose. I have been getting waves of nausea that make me dry heave and I even vomitted last night. I just woke up feeling nauseaish and dry heaved a few times (2:30 am). I went to urgent care last night and they said my sinuses, ears, etc were clear with no signs of infection, but for some reason it is sounding to them like I have something causing pressure on my sinuses and possibly my optic nerve. They sent me up to see an optometrist and all she did was give me a vision test, pressure test, and look at the optic nerve. No visual acuity test, visual field tests, nothing. She said I was fine. So the doctor sent me out for a CT Scan of my head and the Radiologist said it was "normal". So I am back at square one.

I am also dealing with little to no appetite. The nausea comes in waves, but the loss of appetite is all the time so I know that it is not the nausea that is causing me not to eat.

Anyway, I will post numbers when they are given to me. They are not posting them online where I can view my tests.

Paseo
05-28-2008, 03:12 PM
I got some of the test results back, here they are:

Testosterone, Total, LC/MS/MS 263 ng/dl (250-1100 ng/dl)
Prolactin 5 ng/ml (3-13 ng/ml)
Iron 103 (40-150 ug/dl)
TIBC 262 (225-410 ug/dl)
% Saturation 39% (20-50%)

Testosterone is still low, but prolactin is low too. Do any of the other tests reveal anything? I see the endocrinologist tomorrow. What other tests do I need to ask him for? Estridiol, total estrogen, SHBG?

Thanks,
Paseo

Paseo
05-28-2008, 04:32 PM
And a CBC Test:

WBC 6.9 4.0-10.5 x 10 9/L
RBC 4.81 4.00-5.50 x 10 12/L
Hemoglobin 14.8 13.0-17.0 g/dL
Hematocrit 41.6 37.0-50.0 %
MCV 86.5 82.0-100.0 fL
MCH 30.8 28.0-35.0 pg
MCHC 35.6 31.0-36.5 g/dL
Platelet Count 187 140-375 x 10 9/L
RDW, SD 38.5 36.0-50.0 fL
RDW, CV 12.3 11.0-14.0 %
MPV 9.7 8.6-12.0 fL
% Neutrophils 61.5 - %
% Lymphocytes 27.0 - %
% Monocytes 7.7 - %
% Eosinophils 3.1 - %
% Basophils 0.7 - %
# Neutrophils 4.24 1.80-8.30 x 10 9/L
# Lymphocytes 1.86 1.00-4.80 x 10 9/L
# Monocytes 0.53 0.00-0.90 x 10 9/L
# Eosinophils 0.21 0.00-0.40 x 10 9/L
# Basophils 0.05 0.00-0.20 x 10 9/L

Not sure if this test helps any. Still waiting on thyroid test.

Paseo
05-28-2008, 08:42 PM
Ok, here is the thyroid test:

TSH 1.91 0.34-5.60 uIU/mL

Looks normal to me...

Can anyone back this up? Hayfarmer?

Thanks everyone!

hayfarmer
05-29-2008, 01:17 AM
All the tests look normal. Estradiol and total estrogen would be in order. On the headaches, you should think about seeing a neurologist. Do you know if they were able to rule out a pituitary adenoma based on the CT scan? Probably not but the CT would be better at diagnosing a sinus infection or other issue. You may need an MRI.

Paseo
05-29-2008, 09:36 AM
Thanks Hayfarmer, I will ask for those tests today when I go in. No, the CT Scan didn't pick anything up at all. No sinus infection, etc. I will see if he will schedule an MRI.

Thanks for all the advice. I will post here after the visit...

Paseo
05-29-2008, 11:06 AM
Here is the skinny on my dad's testing (He's 56):

Initial test 1/7/08:

Total Testosterone: 310 ng/dl (250-1100)
% Free Testosterone: 1.18% L (1.5-2.2)
Free Testosterone: 36.6 (35.0-155.0)

They put him on 1 packet of androgel daily and retested him on 3/3/08:

Total Testosterone: 531 ng/dl (250-1100)
% Free Testosterone: 1.39% L (1.5-2.2)
Free Testosterone: 73.9 (35.0-155.0)

At this point they told him to take 2 packets a day and that is when he stopped because he couldn't afford it. So he never actually went to 2 packets. It looks to me like it was working fine and that 2 packets might have done really well for him. Except for the fact that his free testosterone was still pretty low.

Any thoughts?

mh01
05-29-2008, 01:00 PM
Did his symtoms improve?

Paseo
05-29-2008, 02:38 PM
Yes, he said he felt better overall...

Ok, just got back from my endo appt. Disappointing to say the least...

He said that I had no signs of any problems. He said my overall testosterone was low, but since my free T was 69.8, it didn't matter what my total T was. He said there was "no way that anything endcocrine was causing my irritability." He went on to say that the headaches were probably caused by migraines. He said a CT scan would have shown an adenoma big enough to cause headaches. He said a microadenoma would be messing with my pituitary and since my pituitary is fine then I don't have a microadenoma.

Finally, he said the sexual aspect can be caused by many things including depression. And he sent me on my way...

Don't really know what to do from here...

hayfarmer
05-29-2008, 08:12 PM
Sounds like he is as dumb as most of them when it comes to this. You do have some problem in the pituitary/hypothalmus area as shown by low LH in the presence of low T. You have symptoms of low T. And how can he say the irritability is not caused by high estrogen when he never checked it???? There is no excuse for this kind of treatment. Find another doctor.

You father should either ask for compounded T cream which is a fraction of the cost of androgel, or T shots. My doctor tells me the cream can be as cheap as $15-$20 per month. The shots are about the same cost. If he is paying cash the doctor should be ashamed to prescribe something as expensive as androgel.

joe132
05-29-2008, 08:56 PM
Best suggestion ive got is to get really informed on all this, spend time reading through the forum. Then call around to endos/uros/internists. Ask if they specialize in treatingi hypogonadism, if they use HCG, check E2. If you have money and wanna save a bunch of time visit Dr Crisler. I can personaly tell you the man is worth his weight in gold and very good at this.

Paseo
05-30-2008, 04:59 PM
I feel like I have done a ton of reading and research. No one will listen to me that there is a problem. No one I have talked to thinks that it has anything to do with testosterone. My GP said my headaches are vascular and if something is there then it would have shown up in the CT Scan.

Anyway, I have my information out to a urologist that was recommended to me by my boss. His wife recommended a homeopathic doctor that has his degree, can prescribe medications, can order MRI's, etc, and he has been treating people with low testosterone. I will be seeing him in a couple of weeks.

Will keep everyone posted...

Thanks

Paseo
06-18-2008, 09:49 PM
I have an update for everyone... it has been over 2 weeks with the same symptoms. My doctor gave me vicodin, midrin, and propranolol for my headaches. I went to the homeopathic doctor and he agreed that my levels were extremely low for my age. He wanted to run some more tests. Here are the results:

SHBG 11.9 L (13-71 nmol/L)
Total T 149 L (400-1080 ng.dL)
Free T 42.1 L (47-244 pg/mL)
Free T4 0.78 (0.56-1.64 ng/dL)
Estradiol <20 (<56 pg/mL)
Triiodothyronine (T3), Free 2.84 (2.4-4.2 pg/mL)
T3, Total 1.17 (0.75-1.78 ng/mL)

Note that these tests were taken later than the previous tests, around 2:30 pm.

My questions revolve around this especially. Would my T levels be drastically lower due to being tested in the middle of the day? Also, the SHBG seems extremely low for T being so low or is that common?

The homeopathic doctor wants to begin TRT therapy next week. He uses pellets that are inserted under the skin. Can anyone talk about these test results? Hayfarmer?

Thanks in advance!

joe132
06-18-2008, 10:37 PM
Yes your levels are very low, middle of the day shouldnt matter that much. I wouldnt worry about SHBG right now. Wait till your levels are back to where they should be and see where its at. SHBG can fluculate, so id wait till you've reached homeostatis before i messed with that. I wouldnt use pellets though. Requires surgery and probably doseage changes. Id try transdermals first and if they dont get your levels high enough move to injections. Ask about using HCG to keep fertility and prevent testicular atrophy.

hayfarmer
06-18-2008, 11:16 PM
I agree with joe. Yes, levels are lower mid day but not that much lower. You do need treatment. I can't remember if you have run the tests to determine (or try to determine) why your T is low. But you should run LH, estradiol, total estrogen,prolactin, TSH, total T at least.

ALso agree to avoid the pellets mostly because it is so hard to adjust dosage. And I agree to ask for HCG if it is determined from the above tests that you have secondary hypogonadism.

Paseo
06-19-2008, 12:44 AM
prolactin was normal, estradiol normal, waiting on total estrogen

LH was 4, FSH was 2.

This doctor is pretty adamant about using pellets. So far he is the only one willing to even listen to me. I think I will give it a shot first and see how I do. I will try for HcG as well.

He prescribed me Androgel for the next week before the pellets are inserted. Is it ok to start this even if I would like HcG or should I wait?

joe132
06-19-2008, 09:15 AM
Its your body, dont be pushed into something if you dont want it. Like i said, i dont recoment pellets. Why dont you try the androgel first, see what happens. Be advised though, even if at first you feel great again you will probably crash. Your HPTA will sense high t levels and shut down production. This is countered by increasing the androgel and using hcg to keep some natural production going.

Paseo
06-19-2008, 02:05 PM
So, with the pellets, you are saying that it is harder to adjust the dosage? Would it be possible to supplement with androgel if levels were too low and then up the dosage the next time? With the shot you just give another shot if low, but if too high you can only adjust for next time anyway.

My doc is saying that my pituitary is producing LH and FSH normally, but I see it as being low-normal. Would I be a good candidate for restart therapy using clomid? Or should I simply go onto TRT with HcG?

joe132
06-19-2008, 03:20 PM
Did you post your LH and FSH numbers? Restart might be worth a shot, thats what im in the middle of right now. 3 weeks on tamoxifen and my levels are up to 900, just gotta hope it stays decent as i come off. Good luck trying to find a doctor that will give you a restart protocol, most are ignorant about it.

Paseo
06-19-2008, 05:47 PM
Yes, LH is 4 and FSH is 2. This was back in May when my levels were at about 263. How is tamoxifen different from clomid?

Also, can anyone touch upon the SHBG angle? The endo I saw said (without actually testing it first), that my T was low because my SHBG was high, but as my SHBG test shows, my T is low while having low SHBG. The doctor I am currently seeing is baffled as well. Generally, SHBG is high. Any ideas?

hayfarmer
06-19-2008, 11:24 PM
I think tamoxifen and clomid act in the same way but they are different drugs....they bind to T or E receptors and block the T or E from binding.

SHBG is not normally high. It is different for each person. Having low SHBG can actually help you in the T area because it means less of your T will bind to the SHBG which results in higher free T. Free T is the T that you want high and produces the desired effects of T. So, don't worry about it being low as far as T goes. However, some people with low SHBG have other more complicated hormonal issues. I would have to read up on that again to give any useful information.

Paseo
06-21-2008, 12:05 AM
Ok, I am at an impasse. I don't know what to do at this point. I feel torn between different suggestions from different doctors. I want to bring up my last tests that were done in May in the morning:

Total T 254 ng/dl 250-1100
% Free T 2.75 H % 1.50-2.20
Free Testosterone 69.8 pg/ml 35.0-155.0
LH 4 <11
FSH 2 <19

Is it possible that my free testosterone is fine and that everything I am feeling is simply the result of depression and anxiety? How would I even know? My GP and endo seem to think so. My GP prescribed Celexa which I haven't started to take because I want to get more information about the next step. My new doctor seems to think it is my T levels, but he does not do the shot. He only does creams and pellets. So I am starting to wonder if he really knows what he is talking about.

I am feeling really bad. I feel like I am slowly getting worse. Does anyone ever feel like they are on a roller coaster and the highs just never get as high as they got before, but the lows seem to keep getting lower? I'm afraid of taking the cream, feeling better, and then starting to feel worse again when/if my body adjusts to the external T.

Hayfarmer, I am contemplating going out to see Dr. Shippen. I have all of my information ready to fax to him. Is there a way I can get his office fax number from you. I know you may not want to post it here...

joe132
06-21-2008, 04:10 PM
Your T is low, this why your feeling like crap. It may be within limits, but its still too low. SHBG isnt going to be the cause of low T. It may be a factor for why you dont feel as good, but dont worry about shbg now. You need to get your levels up. From what ive read, the majority of people will have SHBG level out once testosterone has gotten to good levels again. If your considering docs, you might think about Dr John Crisler. I know Shippen sometimes dosnt take new patients as opposted to Dr Crisler who always does.

joe132
06-21-2008, 05:37 PM
Well to be honest, they are probably not gonna review your information without becoming a patient. However, i highly recommend Crisler.

Paseo
06-21-2008, 06:36 PM
joe132, I don't know if I can afford another letdown, physically or emotionally. I need answers and treatment. I know there are no guarantees, but I can't waste time and money to be told what the endo here told me. If that is the case then I will just start taking Celexa and forget about it. Sorry... just extremely frustrated...

joe132
06-22-2008, 01:15 PM
Well, you cant just forget about it. Low T leads to manny other health problems, possably death. You need to get treated, taking anti depressants or whatever isnt going to help. Thats why i recommend seeing the best, Crisler or Shippen are good doctors i just prefer Crislers style more.

Paseo
06-22-2008, 02:37 PM
hi joe132,

Thanks for all your help. Everyone here has been great. I just am being pulled in so many directions I don't know which way is up anymore. I am going to contact both doctors first thing on Monday morning to see who is taking new patients and go from there. I will keep everyone posted...

hrt81
06-23-2008, 11:08 AM
Paseo: Shippen will require you to send him a summary letter along with your medical records for his review. You need to call his office first to see if you can get in and get an appointment. About 4 weeks ago, I was able to get an appointment with him as a new patient coming up in August...

hrt81
06-23-2008, 11:11 AM
Joe132: Just curious...Why do you prefer Crisler's style over Shippen's? Have you seen both doctors? I was just wondering because I had considered seeing Crisler as well. I have not yet seen Shippen yet so I have no insight.

Paseo
06-23-2008, 01:06 PM
I made an appointment to see Dr. Shippen in August. But they did recommend a doctor in Washington state. A Dr. Jonathan Wright in Renton, WA. Has anyone heard of him? I am looking into him and will keep my appointment with Dr. Shippen until I find out more.

joe132
06-23-2008, 01:40 PM
A couple reasons i prefer Crisler and the main one being Shippen is going to retire soon, while Crisler may have another 15-20 years. I think Dr Crislers business is run better, he has a well organized staff, emails you with protocols and updates. He also seems to have a better knowledge of all hormones, ive heard of patients of Shippens who say hes great for testosterone but not so much for others. They are both good doctors and im not advertising for Dr Crisler, just sharing my experience

joe132
06-23-2008, 04:06 PM
Actutaly sounds like a good doctor to be honest. Yes vit-d can lead to hormone problems, but you have to be very low. The clomid wont hurt you, and it will show if your own system will work. 1 week wont be enough to restart you, but it will show if you respond. Usualy takes 8-12 weeks to restart.

Paseo
07-03-2008, 01:44 AM
I am back again guys! I've missed everyone ;) Anyway, I finally gave in and made an appointment with Dr. Crisler. It was a hard decision, but I feel Dr. Crisler's methods better match the path of treatment I desire. Not to mention he could get me in a lot sooner... hehehe...

The appointment is at 10:45 am Thursday morning. I will let everyone know how it goes. If everyone remembers I have had symptoms for a long time and am finally narrowing it down to a testosterone issue. My last test was 254 with free T of 69.8, LH of 4, FSH of 2, low SHBG, and fairly normals levels of everything else. I will keep everyone updated.

Wish me luck!

My wife says I can't come back unless he makes me better. She's not kidding.

Lewis68
07-03-2008, 08:32 PM
Good luck to you Paseo. If anyone can help you, it's Dr. Crisler. He is treating me also. Hopefully in a week or two, I'll be feeling back to normal.

Paseo
07-03-2008, 08:41 PM
Ok, here is the low down. All my flights out of O'Hare were either delayed or cancelled. I finally made it into Lansing around 4:30 pm (my original appt was for 10:45 am). He stayed late to see me! What a guy!

Anyway, we ran through it pretty fast considering, but I feel good about our first step. He says that he feels that my levels have been too low for too long for a restart therapy to work. Any response from those who are currently on restart therapy? Is there a time limit of sorts?

So he started me on T/Gel. I have cream that was prescribed to me by another doctor (that I haven't started to take), but it is 7.5% testosterone/1 gram daily. He wants me to use that up at least until the T/Gel comes. He then wants to test my levels in one month. He also prescribed something for my anxiety. I want to say prednisone, but I don't think that was it. It was a cream that I rub on and it was pred something. He thinks that will help take the edge off at least until my T levels are up.

One thing he talked about briefly was HcG, but I'm unsure about how we are going to proceed. I think he wants to see how my levels respond and then use HcG. Does this seem like a common practice or did he miss prescribing it in the rush?

Ok, that's the half of it. Now the waiting game begins. Oh, he also ordered a 24-hour urine test kit. Not 100% sure what this tests for...

Thanks Lewis, hope you start feeling better soon!

hayfarmer
07-03-2008, 09:47 PM
This is Crisler's method. He gets your T levels up first, then adds HCG. Shippen is the opposite. He tries HCG alone first, then adds T if necessary. I like Shippens method better but both are good doctors so I will not question Crisler's approach. Crisler just does not think anyone will do well on HCG monotherapy.

Too bad your time with him may have been cut short but isn't it great that he stayed late for you. How many doctors would do that?

The urine test can test for all sorts of things but primarily is used for testing adrenal issues.

Paseo
07-04-2008, 09:43 AM
It was still about a solid hour. He did a physical exam and asked a lot of questons. They were just quicker than usual.

About the possibility of restart. A lot of my problems started when I was around 21, about 8 years ago. Is this really too long of a time for my body to respond to a restart therapy? Or is Dr. Crisler not a big fan of restart? I am simply asking because we didn't have time to talk about it. If anyone has any experience please let me know!

But I was extremely impressed. They did not have to stay to help me out, but he did and I thank him for it because I really do believe this process will be worthwhile in the long run.

hayfarmer
07-04-2008, 09:35 PM
8 years is a long time. But my suggestion would be if that is what you really want to try, that you tell him and you try it. Do this realizing it may be a waste of time and money but also realizing if there is any chance for it to work it would be worth the risk.

joe132
07-06-2008, 12:59 PM
Im not sure about Dr Shippens restart protocols but i know for fact Dr Crisler likes to attempt a restart if possible. Im on one of his protocols now. To be honest i was somewhat reluctant at first, i didnt want to waste time for something that may not even work. However, i now think its the best thing to start with. My total t was at 160 when i first went to see him. Right now im in the middle of a restart protocol and my total t is at 900. This shows my HPTA is intact and that i have a good shot of getting to run again on its own. If you are young and your pituitary or hypothamalus have gotten lazy in regards to LH and FSH i would certainly try a restart.It will at least show if your HPTA is intact, if your testicles are still working.

Paseo
07-06-2008, 01:50 PM
joe132, how long have you had low T or had symptoms of low T? I'm just trying to find out why he would use restart for some and not others. If he feels I have had symptoms for too long I can understand that, but that seems strange to me.

joe132
07-06-2008, 02:00 PM
My symtoms have been around for about a year. I think it depends on conditions of the testicles, age, pituitary condition. Some people have certain situations where they just arnt able to produce testosterone. Others have situations in which their body has become "lazy" and might be able to get it working again.

moderator2
07-06-2008, 02:10 PM
We need to limit threads to 80 posts or sixty days so that the search function runs faster. Please feel free to start a new thread.

 
 
 




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