Good point. Dr. Chrisler believes that for this purpose FSH is a more reliable measure of gonadotropin release than LH when taking a single “spot check” of hormone levels.
As I understand it, FSH release occurs commensurate with LH, with LH being more pulsitile and varying. FSH release is more stable, and so should provide a more accurate picture.
Information about Dr. Chrisler’s practice can be found at www.allthingsmale.com
i know of Crisler’s website. I was just wondering what you paid to see him? Also how long did it take for you to get in to see him personally?
Do you mind explaining your overall experience to the detail? How long did he sit with you and discuss ur situation.
I’m not interested in seeing him as I don’t feel a need. I’m just curious.
Thanks
saw dr. chrisler today to go over my 24-hour urine…
T was still low (out of range, low)
DHT was normal
E was normal
“metabolites” were high
5AR activity was normal
…filling in gaps in bloodwork before moving on…will test iron (hemochromatosis), prolactin, and obtain complete metabolic profile…
Your first post in this thread detailing your issues and bloods was late may.
We are now in September.
So three months have passed and the questions to my mind are;
What is your testosterone and LH level now?
What is Dr Crisler saying you should do now?
and most importantly
If your testosterone is still low;
How long are you going to go on with posting a million and one times at this website with bizzare links to possible causes of your problems/finasteride problems wihtout addressing the blindingly obvious issue of your low testosterone level?
If you have low testosterone…do you not think it was about time you treated and replaced it?
Harsh…but to the point.
I really do wish I could make this move along faster. I moved back to Michigan at the beginning of August and saw Dr. Crisler the day after I arrived back. He wanted me to do a 24-urine test, and I wasn’t able to get another appointment with him until just last week (he was on vacation for a week in the middle of August). When I saw him last I suggested alternative explanations for my profile and asked him whether they could be ruled out, so as to avoid committing myself to the wrong course of treatment. Among other possibilities are pituitary damage - I had a concussion in high school that may be responsible (I highly doubt it), and hemochromatosis (I’m of irish ancestry, and I was taking a multi for a while that contained iron).
So before moving on we’ll be looking at prolactin, iron indicators, and other measures that I had not obtained previous. He’s also rechecking SHBG - the first value was low, but I think, because it was labcorp (which he trusts less) he wants to obtain a new value from Quest.
If prolactin and iron come back normal, he’ll attempt to jumpstart with tamoxifen.
So, I appreciate the concern, Hypo, but rest assured, I really am moving about this as quickly as possible. Afterall, I start graduate school this week, and would like nothing more for this issue to be behind me.
I just want to make sure I do it right.
This is not a good enough reason for the time lag and you remaining ill. It is not fair for you to be ill for this period of time if it is avoidable.
If you wish to ascertain the cause of the low testosterone level and rule out pituitary damage then you should have an MRI or CT scan of the pituitary and you should have a dynamic GnRH test or clomiphene stimulation test. The scan will give you an idea of any damage to the pituitary. The stimulation tests will let you know whether the problem stems from the hypothalamus, pituitary or testicles (given your LH and FSH results it is almost certainly of a hypothalamic/pituitary/metabolic in origin and not testicular).
If you produce a reasonable level of testosterone via a stimulation test, which I think is what you would do. Then you would know that you have a poor/sluggish hypothalamus/pituitary that is not producing enough GnRH/LH and know the cause for the lack of testosterone.
None of this of course will alter the fact that something needs to be done. You require some form of treatment.
Hemochromatosis can be ruled out by a simple iron panel tests and if you want to be 100% sure via a genetic test to rule out c282y and H63d other relevant chromosomes……this can be done with virtually no cost and effort.
Again the above absolutely does not effect the fact that you absolutely require treatment to increase your testosterone level.
Sorry if I see to be aggressive or pushy, but I don’t like seeing people needlessly suffering something I think is apparent in your mails.
P.S
In the last week I have had the following tests;
Synacthen dynamic tests adrenals
GnRH dynamic test for the HPTA
Insulin Tolerance test (ITT) dynamic test for HGH
Iron studies
I have obtained my own chromosomal tests for;
Klinefelters
Hemochromatosis
I have also had tests for
Free testosterone
Dihydrotestosterone
Free T3
Free T4
Thyroid antibodies
Random Cortisol
Parathyroid hormone
IGF-1
Full biochemistry and CBC
Liver function tests
Kidney function tests
MRI scan of the pituitary
I have been to about thirty differing appointments in the time of your original post in May. I have been off treatment for a few months and back on treatment in that time.
So what is the point?
The point is you are suffering because things have moved on at a snails pace and I don’t think that you should be in the position you are. Virtually nothing has been done and you are no further forward.
If you spent half as much time in arranging appointments and furthing your situation as you do posting theories on this website you would be in a much better position and might even be benefiting from treatment now.
This mail should fire you up and get you on the case of forwarding your situation, i hope it does.
P.S
I would arther annoy you and get you to pull your finger out and get help than be nice and know you are suffering for longer.
Hypo, I do appreciate the concern, of course, but you must understand my desire to be absolutely certain on this?
Would you yourself continue to speculate about alternative causes, or would you just truck ahead with treatment? I mean, should I suggest the possibility of getting an MRI, as you mention, to definitively rule out pituitary dysfunction? Also, besides my TSH, I don’t think my thyroid has really been looked at…
I mean, is it not essential to be 100% on this, and rule out all possible causes? Are you suggesting you might make appointments with other doctors to have such things examined?
I expect I’ll meet with the good doctor within another week or two (just had my draw friday), so hopefully something will in fact happen soon.
I do.
But you have not gone about it in a timely manner or pursued matter as you should have. As a result It has been evident that you have been suffering for x number of months.
I would have the lack of testosterone evaluated ASAP and move forward ASAP with a treatment regime under the guidance of a endocrinologist or relevant specialist who can guide you on this.
I think you should have a MRI scan, I think this should be routine because A) you have mentioned prior head trauma and B) you have low testosterone and normal LH which points to a hypothalamic/pituitary based cause for the deficiency.
You need to understand that you probably do have a form of hypothalamic/pituitary dysfunction, I mean a low or normal LH level in the setting of low testosterone is inappropriate and in itself abnormal.
This is not to say that you have malformed, diseased or trauma affected pituitary, unless the cause of your problem is head trauma it is unlikely that anything will be found via an MRI scan.
Can you understand what I am saying here?
That you can have an intact pituitary with no recognized disease or malformation or injury via a MRI, that you can also potentially have a good response to a HPTA stimulation test, but that the cause of a lack of testosterone can still be due to hypothalamic/pituitary dysfunction.
It is the above form of dysfunction that I would expect to be one of the major causes of testosterone deficiency in men that have taken finasteride.
I think you should have the MRI, have either a GnRH or clomiphene dynamic stimulation test and get that those iron studies done. This could all be done in a matter of weeks.
Once you have established the form of hypogonadism you should have it treated.
You should get from A to B within weeks, not within months.
All you need to do is have the MRI, have the stimulation test and then decide upon treatment with the relevant specialist….and get on a form of treatment that seems pertinent.
You cannot and in fact will not ever be able to check everything. It is not feasible and certainly cannot be done in a reasonable time frame at reasonable expense without further injuring your wellbeing and wallet.
If you wish to also have growth hormone checked and/or you wish to have the thyroid or adrenals assessed that is fine. If that is what you want to do then go and have them tested ASAP and pay a couple of hundred dollars for the tests.
The bottom line is that you have hypogonadims and that will require treatment irrespective of anything else.
Time is of the essence.
I say that because I know how long it takes to go from where you are now to getting on treatment to altering treatment, to potentially changing the form or dose of treatment, all the delays between etc. This can take years when you push all the right buttons, I know.
If you prevaricate you wont get anywhere.
Since May where have you got, can you say you are really any further forward?
MRI……Stimulation test….Iron studies……Choice of treatment with specialist.
A B C D.
Push the right buttons!
I am already under the care of Dr. Crisler.
Do I start pounding on his door, demanding MRI and stimulation test, along perhaps, as you mention the possibility of growth hormone, thyroid, and adrenals?
As far as I know, he is perhaps the best possible person I could be seeing right now…should I not trust that he is handling this matter correctly?
My labs are currently in processing, and include prolactin…will this not indicate pituitary dysfunction? I assume it is for that reason that Dr. Crisler is looking at it…
Would I even be able to get a different doctor to authorize an MRI for me? I have no copies of my labwork…
I’ve conveyed to Dr. Crisler that I did not think that the dysfunction was related to trauma. The event was in high school, and I continued to have severe acne after the fact (an indicator of androgen production, I assume).
I want to speed things up really, believe me, and I hope I’m not coming across as daft here - you do have more experience than I in handling these matters - but I really just can’t see how I can effectively improve my circumstances as they currently are.
For now, anyway, the plan has to remain the same…as far as I can judge. Hopefully, I’ll see Dr. Crisler next week, and get rolling with treatment. By this point I’ll have checked off both iron and pituitary - as far as can be assessed by prolactin - from my list, and will be ready to proceed with tamoxifen treatment.
Is there some way, specifically, that you might go about this differently, given the specific facts of my case…what, really, would you do if you were me? Can I just go to my local primary care doctor and request an MRI, based only on the fact that bloodwork and 24-urine analysis have been done, by a different doctor, that appear to indicate pituitary dysfuction? Would you have me be more pushy with Dr. Crisler, who I already know to have a great reputation for his ability to handle these sorts of cases?
I take your words to heart, hypo, and appreciate your dedication to myself as well as others on this forum. I will do everything I can to approach this matter with urgency from this point on, but I think the key is to know when urgency can really make a difference and strike while the iron’s hot. Right now, anyways, it seems that waiting another week or two for my current bloodwork to process, and then meeting with Dr. Crisler with the aim being to start on some form of treatment, is my best option.
One last question, actually: If prolactin and iron come back fine, if you were me, would you then request MRI/stimulation test, or would you push forward with treatment, at that point? That seems to be what it will actually come down to, shortly.
Thanks again, hypo.
From my point of view the key is having the MRI and the stimulation test and then getting on a relevant form of treatment.
I think that the additional testing could wait if needs be, even the iron studies.
Should you be knocking down his door?
In my view it is not knocking down someone’s door when you had you first appointment in may and you are still no further forward in September!!
That said look at it this way….
The squeaky wheel gets the grease, quiet babies get nowt.
Should you be knocking his door down?
In my view unequivocally…….YES!
But like I say it is hardly knocking someone’s door down given you have been waiting since May to get somewhere.
Frankly?
NO!
You cannot rely on anyone to push matters of this nature more than yourself. You are the one who benefits the most from pushing matters and the one who suffers most by not pushing matters. You therefore have the most to gain and the most to loose.
Other people no matter who they are have other priorities that take precedent, even those who seem best placed to help you. Therefore you have to put yourself first and push these things. That is in my experience (seventeen years of going through major health problems, multiple life threatening conditions, operations, hospitals and consultants) has always been the best way to proceed.
I used to get these results back within three hours. As for prolactin, testing prolactin can reveal one specific type of pituitary dysfunction, but there are many forms of pituitary dysfunction that it will not ascertain.
You need to get organised. You should request copies of all pathology/tests from the relevant doctor so that you can read them at your leisure or present them to anyone that you wish. In terms of organizing an MRI, Dr Crisler might be able to do that. If he cannot then you need to see an endocrinologist. A decent endocrinologist should be willing to put you forward for an MRI on the basis of your low testosterone level.
If Dr Crisler cannot sort an MRI out and you need an endocrinologist then let me know and I can see if I can help you get contact details of one in your area.
It isn’t particularly relevant, because it is fairly standard to have an MRI when testosterone deficiency is found LH is low or normal, simply because it indicates a possible pituitary issue. I had no head trauma and I had an MRI.
What you have just said is not remotely silly, far from it. You clearly need to pick up the phone and speak to Dr Crisler. You should feel comfortable talking to him, simply tell him your concerns and where you what to go with this and in what time frame. You want an MRI and a relevant stimulation test, be it a GnRH test or a clomiphene stimulation test and that you want to move forward with a relevant treatment once the results have come back in. He should be totally fine with that, if he is not then you are not with the right doctor. But why would he have a problem with you being open and reasonable?
If that is the route you wish to go and avoid the MRI and stimulation test then that is fine. Tamoxifen is a SERM medication and in the same class of drugs as Clomiphene anyway and will in effect be a stimulation test at the same time as treatment. I thought you wanted to be very thorough, but if you want to go that route that is fine. The key is getting on treatment and boosting that testosterone level and soon. You did not give me the impression that you would be getting treatment soon- far from it. The MRI is always something that can wait if you want to get on treatment first, though I would have it at some stage because of the past trauma even if you don’t think it was an issue.
I can’t tell you what to do, only what I would do.
If you can get on treatment by next week I would go along with Dr Crisler. The Tamoxifen will let you know if the hypothalamus/pituitary can work or not and act as a stimulation test and you can request the MRI post treatment. My point has always been to get on treatment ASAP and it was only half way through your last mail that you have mentioned getting on treatment by next week….that is the key.
Treatment can be an arduous process of trial and error and constitute differing medications and dosages being tried……the sooner you start the process the better.
Yes I agree. You threw me a curve ball by saying half way through your mail about getting on treatment by next week. If I were in your shoes I would proceed with the appointment and see what Dr Crisler has to say about the test results, get copies of all your test results, mention that you would like an MRI at a latter date and leave that there and get on treatment. The odds are that these things go wrong before they go right and that either the medication or dosage will not be correct. The sooner you start the process of trial and error the greater the chance of landing the best treatment and results.
You can gauge from Dr Crislers reaction whether or not he has access to MRI equipement. If he is not keen on the idea then simply leave it there and ensure that you make an appointment with an endocrinologist (endos via the healthcare system and hospital connections can always book MRI scans) at a latter date after you have got on treatment. The purpose of an MRI is to ascertain if the cause of testosterone deficiency is of a specific nature- going on treatment in the meantime is not a problem. The stimulation test is somewhat covered by the choice of medication that you would be going on.
Let me know how you get on with your appointment. I’ll take a look at any test results should you wish and can discuss anything to do with treatments or feelings on treatments etc (I have been on most forms of treatments at one time or another).
Half way through the mail most of what I said to that stage became somewhat redundant….I have left in my reactions at the time before the curve ball so you can see what I thought…
I wish I had jumped on this months ago and got you going so that you could be much further down the road and maybe well today but I am happy to hear that something is finally going to happen….
Once again, thanks. All points well taken.
I’ll inquire about the MRI, and hopefully start on the SERM to get T up ASAP.
I’ll update again as soon as my next appointment comes around.
So, talked with Dr. Crisler today…
My transferrin saturation was 51%, just over the top of the range (15-50%)…he said that i might have one of the hemochromatosis genes but that, since my serum ferritin was in range, my current profile was not attributable to hemochromatosis.
…Hypo, I’d be interested if you could weigh in on this.
I got my exact rhein 24-urine number for testosterone: 37 (45-85).
SHBG was 18 (7-49) …Dr. Crisler said this was fine…
Prolactin was fine…
I asked about the MRI…he said it’s something that he “likes to see”, but he doesn’t have the ability to have one ordered…
I was put on a tamoxifen protocol, which I’ll probably start tonight…
so yeah, this is all getting a little tiresome, isn’t it?
I don’t want to start tamoxifen before I become a little more confident that this isn’t an effect of hemochromatosis (or something else for that matter). Just reading about this on the internet, it seems that ‘transferrin saturation’ (especially after fasting, as in my case) is apparently the best measure for hemochromatosis (and mine is definitely high). I also couple this with two other observations about myself that went unmentioned to Dr. John.
heart arythmia: Nearly every time I go for a run, at some point I experience a spasmatic heart beat. I have to stop to allow it to get back in synch. Heart arhymia, so I hear, is a symtom of hemochromatosis.
The fact that my peyronie’s did not develop while on propecia, but rather a year and a half later when I supplemented zinc thinking it would help my low T. The clear temporal relationship involving zinc is hard to ignore. I’ve read that people with hemocromatosis are advised to avoid supplementing zinc.
From americanhs.org/faq.htm:
"What iron levels are considered “suspicious” for iron overload/hemochromatosis?
A: A percent of saturation of more than 40% and/or a serum ferritin of more than 150 are considered suspicious for iron overload/hemochromatosis. It is important to note that in some patients, the percent of saturation can be quite high while the ferritin rather low (this is often the case in children or young adults in their 20’s) or conversely, with normal percent of saturation and a high serum ferritin. Genetic testing can, in most cases, confirm the diagnosis so that treatment can begin. Ask your doctor about liver function tests, if these are also elevated, that is another possible sign of HH."
I know that I’m not on a hemochromatosis forum here, but this seems strikingly relevant to my own situation, it seems…
In any event, I should probably get ahold of those labs.
Of course you can get a hold of those labs.
But remember that iron overload disorders usually take many years/decades to progress. It usually takes decades for the iron stores to build up and cause damage to organs that in turn is shown via inflamation and elevated ferritin. A matter of weeks is extremely unlikely to make a jot of difference!!! even if you had a form of the condition. The bloods can be reeled off by your gp, just go in and ask for an iron panel if you feel an urgency and bob is your uncle or any other relative you care to mention.
Are you any further forward?
You mentioned getting on treatment within a week.
I am. In fact, I have a bottle of tamoxifen sitting in my room right now. But I haven’t touched it yet.
Before I do I plan to rule out hemochromatosis definitively. The genetic test has been sent to me and should arrive shortly. They putatively report back within 48 hours, so I should know my genetic status by late next week, I’d say.
The fact is, “jumpstarting the HPTA” is a bad deal. The odds are against me on this. So why not strive to decisively rule out the treatable possibility first? This is not only a matter of being exhaustive, but of having a little bit of hope that a long-term treatment is in fact possible.
As I noted above, a transferrin saturation of 40% or more is grounds, in and of itself, to be suspicious of the disease. Mine was 51%. In addition, although my serum ferritin was relatively normal, according to this source, this is in fact often the case in “young adults in their 20’s.” I am 23.
In addition, there is this source:
ncbi.nlm.nih.gov/sites/entre … stractPlus
“Our results seem to indicate that hypothalamic dependent gonadal dysfunction can develop in the early state of HE.”
Given the evidence thus far, I believe it is well worth pursuing this one final possibility. I’d like to do this before I play that game once again of using pharmaceutical agents to manipulate my hormones.
Once hemochromatosis is ruled out I’ll begin the medication option. So at earliest, by the end of next week I will have initiated treatment.
It is impossible to definitively rule out hemochromatosis, certainly no genetic test currently in existence can do that. That is because all the genes that can cause the disease have not even been mapped out yet. Most genetic tests even miss out on testing for known causative genes and typically test for C282y and H63d. The genetic test can rule out hemochromatosis to around a 90% degree apparently. This of course leaves a 10% chance of still having the condition.
Which is why total iron, Iron saturation and ferritin are very much key as are hemoglobin, haematocrit etc.
The point is ruling out likely hemochomatosis and potential iron damage and any actual occurring iron damage.
For your situation to be caused by hemochromatosis it would have required on going damage, iron deposits in organs such as the pituitary and such storage should be picked up by the iron panel results.
I agree, but that does not make it any the less worthwhile as the benefits are considerable, hence your current position with tamoxifen being prescribed and sat in your house and ready to be taken as per doctors instruction.
Because it is not a contraindication to the treatment and has no bearing on trying the prescribed medication and in fact is getting in the way of you potentially taking a treatment that could help you as of right now.
And I do not think that what you have said changes anything. Even if you turned out to have hemochromatosis and that it had caused the damage, which is highly unlikely……how exactly would it alter trying the course of treatment that has been prescribed?
The fact is Tamoxifen would still be just as legitimate a treatment for the hypogonadism. The only difference would be that you would also be giving blood in order to de-iron the body.
Although it is possible to have low ferritin and still have the hemochromatosis gene and although it is possible though even less likely to be suffering from iron overload and have low ferritin (possible because in certain rare cases the complex issue can be part of iron metabolism, rather than simple iron storage and also ferritin is an indicator of inflammation as opposed to actual iron storage) high ferritin is highly associated with hemochromatosis and iron overload and low ferritin almost always mean there is no damage to the body due to iron overload and no cause therefore for low testosterone.
So yes you do not have to have high ferritin to be adversely affected by iron overload, but you are highly unlikely to be adversely affected by iron overload and have low ferritin. So straight away the odds of this being the cause of the low testosterone are quite low.
In terms of Iron saturation. Transferin Saturation of 40% would not be likely to point to hemochromatosis or iron overload. They have been talking about reducing the amount considered suspicious to around the 45% mark, at 51% your iron saturation is ground for inspection but nothing more. Certainly it is not something to start crapping yourself about.
Also I would ask was this saturation level via a overnight fasting test?
The test is totally invalid unless the test is fasting.
I personally have the H63d hemochromatosis gene and I have had 86% iron saturation and my current saturation via a fasting test was 60%.
My doctors are unsure if I am simply suffering from slight elevations in iron due to having a carrier gene for the condition or suffering more significantly and have the disease.
In any case I have low testosterone and I am on treatment (there wouldn’t be a reason not to be) and I am benefiting from that treatment as a result irrespective of where any potential investigation on this front may take us.
I see your situation in that regard as similar……accept I am being treated so I probably feel a bit healthier and better than you.
There is no harm in pursuing this possibility, whereas pursuing it off treatment is of the polar opposite in that it absolutely does do you harm as you remain symptomatic and continue to have low testosterone. Treating the low testosterone can also do no harm to the investigation that there is no harm in pursuing.
Other points;
If you think that this is the final one possibility in terms of possible causes for your symptoms then I can tell you that you are totally wrong and that there may also be the potential that your situation was caused by something else and always the possibility for further investigations. I know this full well from years and years of experience. I can also tell you than your genetic test will not rule out a potential genetic cause for either hemochromatosis.
You are in a VERY grey area of medicine. This is as much a black art as it is a science such is the level of what is not known.
You can try and rule out conditions to differing levels, you can rule out blatant causes and you can choose to treat the symptoms and the condition(s) that are found and see if that gets you well. Ultimately all potential causes become redundant if your treatment works and you feel well again and they can confirm that nothing major is going to cause you harm. Even a chromatosis gene becomes of less relevance than actual blatant iron overlaod……hemochromatosis remember does not harm you, rather it is the iron storage that does.
This is all talk though….
You should take the medicine prescribed, waiting like I said serves no purpose whatsoever.
Mmm
Be glad to hear how you get on with the treatment. Whether it works or not, it is a step in the right direction in the sense that it might work and it is something that is tried and in that respect different from doing nothing, which of course has not worked out (more is the pity).
What was your estradiol level the last time it was checked?
Just thinking about the implications of the up coming treatment and what you might expect.
P.S
If I sould a bit cantankerous I apologise, I am just keen for you to be well or at least have the chance of being so by treating your hypogonadism.
If the tamoxifen does not work, please do not assume that this means that other treatments will not work, sometimes it can be a long winded case of trial and error.
Good point. It is irrational, I suppose, and a product maybe of me just wanting to navigate this as conservatively as possible. I will start taking the tamoxifen very, very soon.
I know that my ferritin is not “high,” but I do not know that it is “low” per se, either. In either case I should get my labs in the mail tomorrow, and I’ll post them.
This is, in fact, an overnight fasting number. Not that I was aware of this, but I was getting glucose tested at the same time, so I did end up fasting.
I realize that your case is rather complicated, probably well beyond my own understanding of things, but have your high iron levels never then been speculated to be the de facto cause of the hypogonadism?
All I know is that it is “normal” by Dr. Crisler’s standards. I’ll post the bloodwork tomorrow.
Also one question…concerning a possible cause of the hypogonadism. About a year ago, around the same time I was just quitting finasteride, I had all of my mercury amalgams removed. Now, my dentist was very cautious to limit exposure to mercury during the procedure, and I did take chelating agents at the time (though not as much as he recommended). But I wonder now, could this event have had any kind of adverse impact, as far as hypogonadism is concerned? Just curious.
Thanks.
ncbi.nlm.nih.gov/sites/entre … stractPlus
Now this one really hits close to home for me…
Hypo, you’re absolutely right about there literally being a bottomless pit of possible causes to just drive yourself crazy speculating upon. It does get pretty ridiculous.
Anyways, I was always a really intense runner…All through high school and college I trained like a fanatic and even ran a couple of marathons in fact (which absolutely killed me).
So I guess there you go: another possible cause.
Anyways, yeah, I’m starting the SERM today. I have been inspired…I like the tone of this last article.