Why we need to be more proactive as a group.

[medstudentmike]

I am a med student that recently was diagnosed with secondary hypogonadism. I will tell a little of my story and why I think it is important for us to all be pushing for more research into the area of hypogonadism. Anyone who has had normal testosterone and then hypogonadism will understand that the symptoms of this problem are no joke. The impact on your bio-pyscho-social well being is significant.

My symptoms started up about 1 year ago. I started feeling very tired, then noticed obvious strength changes in the gym, next I started having headaches, then generalized fatigue, decreased libido and poor concentration. When the fatigue hit, I went to my GP and asked to investigate things. Hypogonadism was the farthest thing from his mind. He ordered a typical blood panel involving FBC for anemia and other issues, EBV testing, ESR, TSH. Nothing significant on those so he ordered another few tests for weird and unlikely viruses. There is a saying in medicine about not chasing Zebras... Fatigue, low libido, and strength changes are likely hypogonadism until proven otherwise.

It took one quick google search to see that anyone with low libido should have their hormone levels checked. So finally I had a testosterone level ordered. No suprise in that it was low. The symptoms had been going on for over a year at that point. I went to an endocrinologist and mentioned all the previous symptoms and a 12 pound weight loss. It took several appointments and 4 blood tests revealing testosterone below the reference range in order to finally be diagnosed with secondary hypogonadism. When I asked questions regarding this disorder of the endocrinologist it seemed fairly evident that it wasn't an area of interest for him.

At one point in these visits I had a doc mention medical student syndrome. I train in the gym without the use of steroids and look quite healthy. This is not true of alot of doctors. So when someone who looks very fit starts complaining of muscle loss and fatigue it is often discounted. Some docs jump to the easy conclusion of psych issues or body dysmorphic syndrome, which doesn't really fit when you have measureable changes such as weight loss, strength decrease and hormone biochemistry below reference ranges. (But you need to think to measure the hormone levels before you can actually find the problem).

The point to all the above is that hypogonadism still is not on the radar for most doctors. My symptoms were fairly obvious to be the result of low testosterone and yet that was the last thing examined. I exercise and look fairly healthy but that does not really excuse the lack of ordering the biochemistry for the problem.

In my medical course so far there has been one problem based learning session dedicated to Men's health. That session related to Erectile Dysfunction. ED is pretty much a simple issue these days. I can summarize it by simply saying that 80-90% of males with ED have an underlying vascular problem that usually responds to viagara. Medically it isn't really rocket science that you try viagara with an older man suffering from ED unless he otherwise tells you that there is a psychological component to his problem. Male hypogonadism seems to be much more educationally interesting since it involves looking at endocrinology, ageing, more physiology, on top of all the same pharmacological and psychosocial issues related to ED.

In researching my condition I was suprised to learn that hypogonadism is at a much higher level in men than previously thought. I am talking about young males, not a decrease of testosterone related to ageing. A review paper suggested that statistically there are at least 1/100 young males with this issue. Other peer reviewed articles show that the current generation of men have lower average levels of testosterone than the previous generation. Decreased testoserone levels in younger men is a huge problem medically in that there are associated links to earlier mortality, decreased bone density, cognitive issues, relationship and sexual dysfunction, weight loss and myalgia.

The current interest in testosterone is centered around it's use in athletes. The fact that there has been a change in average T levels in this current generation and that hypogonadism is more common than previously thought has been pushed to the back burner because the media and political attention of testosterone use in sports.

Developed nations currently have ageing populations. The population proportion of those over 60 is rising. These ageing males could potentially improve their quality of life if suffering from symptoms of low testosterone. As a lobbying group older men likely have the most power to sway the government adjusting policies regarding testosterone. Younger men such as myself need to get proactive as well and try to make it an interesting topic for the media. As a group of patients we all need to be more vocal on the issue and try to bring it into focus in the medical profession and bring it into medical school curriculums because currently the medical profession in large seems somewhat ignorant on the topic. Until some of these things change there are going to be lots of patients that will have issues getting diagnosed and treated for their problems.

[The_Skeptic]

One of the problems about being proactive is that many men, including myself, are embarrassed about having low testosterone. Especially among younger men.

[medstudentmike]

Originally Posted by The_Skeptic

One of the problems about being proactive is that many men, including myself, are embarrassed about having low testosterone. Especially among younger men.

I realize this is a problem too. I was thinking of writing an article to a medical journal regarding my experiences but for me the problem is not only being young with low testosterone but also admitting my health issue to my peers who tend to be quite critical of one another!

However, if no one says anything then change is going to be a long time in coming.

One helpful suggestion that doesn't involve going public:

I would imagine that many of us simply changed doctors when we realized the lack of knowledge and understanding with the current doc. A more proactive approach would be to have someone knowledgeable in the area write that GP a letter. Communication between specialists and GPs is encouraged anyways. You can simply ask that your endocrinologist writes a letter to update your GP (or previous endocrinologist lacking understanding) about the condition. This means that you may help change the understanding of 1 GP which may sound trivial but GPs are often the gateway to referral on to specialists so it is important.

[The_Skeptic]

Originally Posted by medstudentmike

I realize this is a problem too. I was thinking of writing an article to a medical journal regarding my experiences but for me the problem is not only being young with low testosterone but also admitting my health issue to my peers who tend to be quite critical of one another!

However, if no one says anything then change is going to be a long time in coming.

One helpful suggestion that doesn't involve going public:

I would imagine that many of us simply changed doctors when we realized the lack of knowledge and understanding with the current doc. A more proactive approach would be to have someone knowledgeable in the area write that GP a letter. Communication between specialists and GPs is encouraged anyways. You can simply ask that your endocrinologist writes a letter to update your GP (or previous endocrinologist lacking understanding) about the condition. This means that you may help change the understanding of 1 GP which may sound trivial but GPs are often the gateway to referral on to specialists so it is important.

A few years ago, I visited a new endo after moving into my current area. I had been on TRT for ten years, but I had just started reading this forum, therefore learning about HCG for the first time.

I asked the endo to prescribe me HCG and he flatly refused because I had told him earlier in an unrelated conversation that I was not exactly looking to be fertile. I had not ruled it out either. It was just a casual question.

So I never went back to him again, but I've always been tempted to write him a letter along with several caseloads of studies that indicated that HCG could be very beneficial to men with hypogonadism.

He was an older man, so I figured he wouldn't have paid attention anyway. But HCG is nothing new. It has been researched for hypogonadic men for more than two decades with strong support that it could be beneficial.

Then I had another endo who told me to "double up" when I told him the Testosterone wasn't working as it should. I later learned it was E2, which he was obviously ignorant about. I also considered sending him a letter.

But what stops me is the fact that I am not going to be informing these doctors of some new breakthrough. It's all been out there for decades. If they didn't take the time and interest to learn about it through their professional peers, then they sure as hell are not going to listen to a patient.

[cjones]

E2 definitely needs more attention from the medical profession. A hormone that causes shrinkage and ED when too high or low and stresses all the glands in the process shouldn't be ignored...

[dysfunctional]

Sorry I didn't mean for you to write the letter as a patient. I meant for you to have the expert that you are seeing regarding the condition write a letter. The scenario is more related to GPs although I think there are quite a few endocrinologists lacking knowledge in this subject.

Whenever a GP refers a patient to a specialist, that specialist should write a letter to original GP outlining the diagnosis and treatment protocol chosen. These types of letters are a form of professional communication that you might not see as a paitent although it would likely be placed in your file. They do make a difference since they come from a specialist to a generalist. These letters are supposed to be part of normal patient care. Sometimes they are not written if the patient does not specify they are under the care of a particular GP. I was suggesting that you make sure a letter is wriiten outlining your case and the treatment so that the GP can learn from it. Having an endocrinologist write to another endocrinologist may help but then you are getting into a more confrontational situation since the ignorant endocrinologist make take being "educated" as insulting.

A patient writing a letter will not make much headway. You could possibly bring in some peer reviewed articles regarding the subject. However the odds are that the doc will not take too much heed. Egos abound in medicine.

[Temujin]

This discussion hit a lot of my hot buttons:

A: Testosterone use in sports has definitely demonized testosterone supplementation, to the detriment of those of us with a real problem.

B: It would be nice if your endo would write a nice letter to your GP, but when the endos all seem to be more ignorant of hypogonadism than even the GP's, it's hard to get that discussion started. Has ANYONE here found an endo who gives a shit about low T?

C: HCG seems like a no-brainer, with obvious benefits and no downside at the low doses we take, but mention it to most docs and it's like you're from Mars. My GP said she could lose her license if she prescribed it to me.

D: Regarding the large population of men with this problem, another huge high risk group is diabetics. Male diabetics have a 50% greater chance of getting hypogonadism than other men. This is well-known and well-supported, but though I have been diabetic for twenty years, I have never had a doc suggest that my T be checked.

E: All of which brings me to my last point, which is that we have to take charge of our own medical care, and this forum has been an absolute godsend in that regard. You know what your symptoms are, and your friends here have told you how you need to treat them, so go beat your doc over the head until he gives you the care you need, and if he won't do it, go find another doc, and another, and another, until you find one who will listen to you. That's my way of being proactive, but I think one of you guys should go on Oprah and tell the world that you can't get it up and you're not going to take it any more!

Thanks, Mike, for a great post.

Originally Posted by dysfunctional

Sorry I didn't mean for you to write the letter as a patient. I meant for you to have the expert that you are seeing regarding the condition write a letter. The scenario is more related to GPs although I think there are quite a few endocrinologists lacking knowledge in this subject.

Whenever a GP refers a patient to a specialist, that specialist should write a letter to original GP outlining the diagnosis and treatment protocol chosen. These types of letters are a form of professional communication that you might not see as a paitent although it would likely be placed in your file. They do make a difference since they come from a specialist to a generalist. These letters are supposed to be part of normal patient care. Sometimes they are not written if the patient does not specify they are under the care of a particular GP. I was suggesting that you make sure a letter is wriiten outlining your case and the treatment so that the GP can learn from it. Having an endocrinologist write to another endocrinologist may help but then you are getting into a more confrontational situation since the ignorant endocrinologist make take being "educated" as insulting.

A patient writing a letter will not make much headway. You could possibly bring in some peer reviewed articles regarding the subject. However the odds are that the doc will not take too much heed. Egos abound in medicine.

[pmgamer18]

Yes this sounds good but Endo's are out they are not good Dr.'s for most things I have in the last 7 yrs. on the boards heard one bad story after the other about seeing Endo's for bad Adrenals, Thyroid and Testosterone.

I myself have seen 7 Endo's in the last 23 yrs not one got it right. Each one would not even look at my labs from my Dr. They all wanted me to come off TRT to retest so I did this 6 times and all they found out was how sick they made me. The cost to my BCBS was over the top each one told me I am Primary my Testis don't work good enough to keep my T levels up.

Two yrs. ago I read at Dr. John's site All Things Male - Center for Men's Health his free TRT: A Recipe for Success and his HCG update. I added HCG to my T shots and my levels doubled. I am not Primary but Secondary. Yet my Dr. tried to tell me my levels went up because the HCG got my Adrenals to make T. I don't think ones adrenals can make you go from 600 to 1200 just adding HCG. Today looking back at my labs they were screaming this that I am Secondary.

So now we treat my low Cortiosl, Thyroid, Aldosterone, DHEA and Testosterone. Not one Dr. figured this out I had to do it. To think going like this for 23 yrs paying out all that money.

As it turns out I am Hypopituitary do to a bad auto accident where I had a bad head injury. Today with all the info out there still Dr.'s can't even treat a Thyroid problem right just read the boards they are full of posts. Far more the use men with low T.

I feel when we see a Dr. and he scans the labs and tells us we are find in the normal range and when we tell him how dam bad we feel all he can do is offer Prozac he should not get paid.

The last Endo I seen I called and asked all kinds of questions got all the right answers went to see him and the same crap. Stop your meds your labs are not good I need to retest you using my lab. I asked this last Endo how many men is he treating and he told me I was his first. I told him as I got up and was leaving don't your dare send me a bill.

[cjones]

Phil is right. Anti depressants are adrs favourite fashion accessory these days no matter how bad you feel you will be told everything is fine. I don't know what to say about Endos especially in the UK. From what I have read in America go for an Osteopath and in the UK get a private Dr through thyroid uk to get better. I have the internet to thank for knowing anything at all

[Sargovar]

I'm with Cjones.. if it weren't for the internet, I would still be in the dark about all these things. Worse than that, I would probably believe the docs when they'd lie straight to my face and tell me that "everything is fine", and that "it's all in my head".

I would most likely still be on SSRIs and feel totally miserable.
Thank god for the internet and forums like these!

Recently I think I managed to make a huge leap forward in terms of getting through to a doctor when I talked to my dad about these issues, and saw that he was fully reciprocating and open to what I was telling him. I could tell he believed me when I told him that there was something wrong with me on the inside, not just in my way of thinking or my brain neuro transmitters. He even agreed that my testosterone levels were low in the presence of such high LH numbers, especially for someone so young, and out of his own volition came up with the idea of talking to some sort of big chief endocrinologist from his workplace about the idea of possible treatment options.
Of course, I was kind of not happy about the mention of an endocrinologist, especially one in some sort of position of authority over 'lesser' endocrinologists (though in my book, all endocrinologists are of a lesser caste when it comes to their usefulness in treating male hormonal problems).. such a doc must have an ego the size of Hindenburg! But naturally I didn't voice my dissent, as I was all too happy with him simply listening to me in the first place!

I think I'll have to convince my dad further to forgo the role of middle man and forget about the endo. As a licensed doctor (even though ne nowadays works as a professor in public health), he has every right to prescribe whatever he wants to whomever he wants. It's just a matter of twisting his arm (and making the best case I can, showering him with medical studies that prove my case, and prove the usefulness of the compounds that we need that are rarely prescribed; hCG, Arimidex, Armour etc etc).

It would certainly be easy if I had a doc so 'close to home', and a huge asset to all of us (simply by the virtue of another good, knowledgeable doc being in existence.. there can never be too many Dr. Johns, Mariancos etc!).