Dealing with azoospermia?

[silverbell]

Taken from my journal and if any of you can shed any light on any of these results it would be ever so much appreciated. Also if you spot any mistakes - I'm still very new to this and am just gathering info from the internet so it might be inaccurate.

I won't go into detail about how depressing the GP was and how he literally turned to DH and said, "We know there's no sperm in there - if there were it would be coming out and there's just nothing at all, so it's not being produced." Which we clearly know is not true, as some sperm is found in men who have no sperm in their ejaculate.

Anyway, clearly he's still as clueless as ever and we went in knowing that.

I'm late posting on here because I've been researching like a mad thing, as we asked for a copy of the results.

I haven't even come up with anything concrete, because it's just all so confusing.

Basically:

Ultrasound is as mentioned before - cyst on left side, both testicles abnormally small, and abnormal echotexture of testicles (something about visual appearance).


Bloods ...

DH has a very, very low Testosterone level 8.8 nmol/L ... which we're finding hard to understand as DH has no trouble in the sex drive department and has never had erectile problems either the whole time I've known him. The only thing he can't do is have sex without a break of a few hours in between, but I hardly think that's a problem!

His Free Androgen index is very low at 26.6. This measures abnormal androgen status. Androgen is basically a hormone and in this circumstance relates to actvity of the male sex organs.

He has a very high FSH at 34.5 iu/L. This regulates the reproductive processes. It indicates testicular failure.

His SHBG (34.9 nmol/L), prolactin (217 miu/L) and LH appear to be OK (although I found different 'normal' ranges for LH so could be wrong here - it's 14.2 iu/L if that helps).

There is a note to say, "Pattern suggestive of dysfunctional H-P-Testicular axis, SHBG and FAI supports dysfunctional HPT axis." I have had a Google and this seems to relate to a disorder of the glands in the brain, but I am still rather clueless.

His results above seem to fit with primary testicular failure, which basically means that the testicles are failing to produce sperm.

This is really, really bad news, as you can imagine. The best result would have been a normal result so at least we'd have thought he'd been making sperm inside him somewhere. These results all seem to suggest that he's not making anything at all.

Obviously I'm just going by stuff I have tried to piece together on the internet and could be entirely wrong, but I don't think I'm far off.

GP said that DH will need to go on Testosterone replacement therapy and that this won't help with fertility, but will be for his own sake as he cannot go through life with this low testosterone level. He has been referred to the Endocrinologists to discuss the blood results and hormone replacement therapy further. We've had a look at what low Testosterone means and I'm finding it really confusing because he just doesn't have half of the symptoms. However, we've read how important it is to get testosterone replacement for men with low levels, as it can affect almost every function in the male body, both physically and psychologically and can have the effect of prematurely aging a man and leaving him more vulnerable to heart disease and mental illness.

It's all very confusing.

I also managed to get myself referred to the Gynaecologists because I told the doc that we wanted to get the ball rolling using donor sperm (I chose not to tell him about successful sperm retrieval ops in azoospermic men). I'm being referred for us both to discuss our options and get me 'worked up'. I thought it was quite amusing that the GP thought I didn't need 'working up' because I had normal bloods ... hmmm, well what would be the point of all the expense of IUI treatments if I had blocked tubes, for example? I'm pretty sure I'll need to be scanned prior to any treatments.

Basically we're gutted as it seems likely that DH has never produced sperm. It's not absolutely 100% written in stone, but it seems to be that way from what I've gathered together. I could be very, very wrong (and I am praying I am), but we'll have to spend the next few days really letting that sink in and getting used to it. I even told DH a couple of days ago that I had very subtly and over time and possibly without even knowing, convinced myself that he has no sperm at all. I said I guessed it was a self-preservation thing so I wouldn't be as disappointed if it were found to be true.

It will be so great to finally see the Urologist and now the Endocrinologist to hopefully shed some light onto this problem and give us just a few answers.

 

[Deb111]

So sorry to read this SB, but I'm glad you have tried not to take the GP's opinions on board. For a start off, as I'm syre you know (but your GP doesn't seem to!) azoospermia is NOT a diagnosis that says a man is not producing any sperm, it simply means there is no sperm in the ejaculate. This 'can' just be due to exceptionally low numbers. He has no right to give you a prognosis like this when he had never even seen a case of this before - but you know that - so let's ignore that and focus on the results.

Ok - here's my take on some of it for what it's worth (and I need to look through some of my research later for more info on some of the results)

That's about the level of my hubby's testosterone. From what we've been told, it's not excessively low, but is a little under the normal lowest acceptable level. Things like clomid, arimadex, tamoxifen can help with that BUT you would need an endo / urologist to tell you whether that is an option based on his other results. My hubby is on tamoxifen to a)boost the testosterone and b)drive his FSH level, which is 17. Your dh obviously doesn't need to drive his FSH.

Now I don't want to get your hopes up and I think you have been doing the right thing all along by considering the worst case scenario, but we were told that it has been known for men with an FSH level of 30 - 40 to sometimes have sperm found.

With regards to the testosterone replacement therapy, giving it to him now will cause negative feedback and will stop the body producing it's own testosterone and he will definitely then not make any sperm. But as I said, there are medications that can at least boost it short term until you have dealt with the fertility stuff.

Did they do an estradiol or estrogen blood test??

I will be back later when I've dug out some of my research!

Big hugs xx

 

[silverbell]

Thanks so much, Deb

Thank you ever so much for your take on things and there's some really interesting info in there that I didn't know. There's so much stuff on the internet to wade through and you don't know whether to believe half of it.

No, they didn't test for estradiol or estrogen - should they have? Bloody typical he's missed it off if so!

I shall be asking the Urologist or Endocrinologist to do Karyotype, CF carrier and y-microdeletions testing anyway, so will add this to the request if it needs to be done. I was going to ask the doc today to request these tests, but he's just so clueless I swear he wouldn't have known what I was talking about, so I had already decided mid-consultation to speak with the Urologist (or now maybe the Endocrinologist) about getting these done.

Thank you so much. It's all so confusing and you've been ever so helpful.

PS Out of interest (and please, please don't answer this if you're not comfortable to discuss it), did your DH have any problems with sex drive, erection etc? It's just confusing us that DH has no obvious symptoms of a low testosterone and yet sex drive and erection problems seem to be the main ones.

 

[Deb111]

I don't think Terry's estrogen / estradiol was initially done, but as I posted in my journal the estrogen : testosterone ratio is almost more important than the testosterone level and that's one of the things that things like tamoxifen help to sort out.

It really might be worth you emailing Dr Ramsay with all the results you have. Tell him that Debbie and Terry that he has been seeing pointed you in his direction. He answered our email very promptly and I'm sure if you ask him, he will tell you whether he feels he might be able to help you and whether it would be worth a visit. He really does seem to be one of the best in the UK.

[email protected]

 

[silverbell]

It really might be worth you emailing Dr Ramsay with all the results you have. Tell him that Debbie and Terry that he has been seeing pointed you in his direction. He answered our email very promptly and I'm sure if you ask him, he will tell you whether he feels he might be able to help you and whether it would be worth a visit. He really does seem to be one of the best in the UK.

[email protected]

Thank you so much, Deb. I have just emailed him I copied out all the results and scan report and gave a bit of the history and asked for his honest opinion. I mentioned you'd pointed me to him.

If anything it'll just be nice to have the view of somebody who actually knows what he's talking about! I'm prepared for bad news, but can't wait to hear what he thinks all the same.

 

[Deb111]

Don't expect too much from his reply - it's likely to be quite brief. But, he will honestly tell you whether or not he feels it is worth him looking into it further and he will not get you there for an appointment just to exploit money out of you. He has managed to get all of Terry's blood tests done on the NHS to save us money

I really hope he gets back to you with some positive news xx

 

[silverbell]

Don't expect too much from his reply - it's likely to be quite brief. But, he will honestly tell you whether or not he feels it is worth him looking into it further and he will not get you there for an appointment just to exploit money out of you. He has managed to get all of Terry's blood tests done on the NHS to save us money

I really hope he gets back to you with some positive news xx

I had a reply back this morning and I got all excited, but it was his PA advising that he's not back until 7 July now, but she would leave my message out for him upon his return.

Thank you

 

[Deb111]

Don't expect too much from his reply - it's likely to be quite brief. But, he will honestly tell you whether or not he feels it is worth him looking into it further and he will not get you there for an appointment just to exploit money out of you. He has managed to get all of Terry's blood tests done on the NHS to save us money

I really hope he gets back to you with some positive news xx

I had a reply back this morning and I got all excited, but it was his PA advising that he's not back until 7 July now, but she would leave my message out for him upon his return.

Thank you

Oh how frustrating! Well if you want to speak to an 'expert' before then you could try Dr Turek. We spoke to him before we found Dr Ramsay. He is based in the US, but ended up giving us very similar medical advice to Dr Ramsay. He will give you a free 10 min phone consultation - it will just cost you the price of the phonecall.

Go to https://www.theturekclinic.com/fertility-doctor-san-francisco.html and click on the 'schedule consultation' button on the right hand side and I think that will let you send an email to his PA, who will get back to you and arrange a convenient time for a chat xx

 

[Bookworm]

Hi All - back again.... I really try not to obsess too much but sometimes I just can't help myself and dropping by and just knowing that other people out there are obsessing about the same thing helps!

First - big congratulations to Mumanddad!!! What an amazing result and nice to know that sometimes it all works out despite the odds

2nd I think I should explain about the CF carrier thing: CF being Cystic Fibrosis. If a man is a CF carrier (meaning he carries the gene but does not suffer the illnesss) it can still cause a problem in the vas deferens (connection) - essentially causing obstructive azoospermia
So with DH brother having obstructive azoospermia (with un-known cause) the consultant at the fertility clinic seemed to think there is a good chance this is the problem. I guess it is so unusual that to have 2 instances in one family must point to a genetic link.

If this is proven correct the good news would be that there is a good chance that DH, like his bro, is producing healthy sperm, just missing the connection... bad news is that if I am also a carrier we have a 50% chance of having children with CF - we live in Ireland and there is a CF gene called the Celtic Gene and is very common here (obviously), we have high instances of CF and one of highest rates of multiple CF children per family.... so we can't rule out the possibility that I'm also a CF carrier, and it brings a new dimension to our decision and whether it would be morally acceptable for us to bring a child into the world that has a 25% chance of being extremely ill.... also because I don't think they would even implant a zygote that they thought had CF (and I read that they do screen) so our chances of even getting to IVF could be halved if they discard some/all

So anyway - we are currently waiting on the results of DH hormone tests and we've also been a bit pushy and got the GP to do the Karotyping and Y-chromosone thing at the same time (with the CF issue it's very likely that'll have to get done anyway so might as well save everyones time and get it done now). My GP is also looking into getting me screened for CF too so that we have all the info we need to make an informed decision.

 

[Deb111]

Found some info about high FSH, normal LH Silverbell

I'm sure the part about differentiating between the different causes may be of interest to others too.

FYI, my hubby's TESE report indicated some areas of hyalinization of the seminiferous tubules and same areas of sertoli-cell only syndrome, but as we also know from the few they found, also some tiny areas producing sperm normally.

"Primary gonadal failure in men and women leads to high levels of FSH and LH, except in selective destruction of testicular tubules with subsequent elevation of only FSH, as in Sertoli-cell-only syndrome"

"In the azoospermic man with normal-sized testes, the differential diagnosis includes hyalinization of the seminiferous tubules, Sertoli cell-only syndrome, gonadotropin deficiency, ductal obstruction, and maturation arrest. Plasma testosterone, LH (luteinizing hormone), and FSH (follicle-stimulating hormone) measurements are helpful in separating these conditions. With hyalinization of the seminiferous tubules LH and FSH are elevated, and plasma testosterone is low or borderline normal. Men with Sertoli cell-only syndrome usually have normal LH and testosterone, but elevated FSH levels. In gonadotropin deficiency LH, FSH, and testosterone are low, and in ductal obstruction or maturation arrest all endocrine studies are normal. To differentiate between the last two disorders, a testicular biopsy is necessary."

 

[Flake-y]

SIlverbell, I wouldn't look too much into the blood results. My DH's bloods all came back normal, & the urologist was very hopeful of finding sperm, thinking it was just a blockage. So it was a pretty big blow when the SSR didn't find any sperm at all.

I think you're always best to consider both scenarios, don't get your hopes up too much, but also, don't assume that one test rules out the possibility of finding sperm. Like Deb said, there still might be sperm there, in small numbers!!!

 

[WANBMUM]

Just wanted to send you hugs Silverbell. Wish I could say something worth while but I am still new to all this and really dont know too much about it, apart from what ive googled and with that i dont know what is true and what isnt. Im so confused.

My OH hasnt been sent for a blood test at all and it hasnt been mentioned?? he has had 3 SA's, a scan and next going for an ultrasound. There really doesnt seem to be a straight forward process does there.

 

[waitingginger]

Hi again bookworm!
i must say it would certainly seem to point to a gentic issue if your OHs brother also has Azoospermia!! as its so rare but at the same time i know its also a relief to have any form of answr as stops your mind from going into overdrive!

Wanbmum, so sorry you have ended up here but please feel free to rant away about all the rubbish doctors or how you are feeling!! its great you and OH can talk about it, i cried all the time at first but it really does get easier to deal with!

silverbell we at an encronologist at the moment! and i must say he is so knowledgable and i feel much more secure with him then with any of the urologits/fertility consultants we have seen so far.

we went to see him and he did an examination and then asked if OH would give 3 lots of blood samples and SAs over a 6 month period so he see the bloods which go with which SA and try and figure out what is happening. we were told that why his hormone levels were not correct they would not even consider an SSR as the likelihood of finding anything with abnormal hormone results was slim. the cause of the abnormal results would need to be fixed first.

we dont go back until september from what i have read my OHs results seem to point to secondary hypogonadism
xx

 

[Deb111]

Sounds like a very thorough endocrinologist Amy. It really does make all the difference when you find a professional you're happy with doesn't it? xx

 

[WANBMUM]

Thanks waitingginger, ya i hate being able to cry so easily! i was always an emotional person, but my eyes now can literally fill up in a second, Ive been like that for a few months now. I hope it does get easier
Last weekend I was at my nephews play, my nephew wasnt even on stage but i got really emotional, a bunch of other little kids were up there & I was thinking if that was one of my children up there i would be so proud, while i was looking at all these parents really not wanting to be there, ha. Yes I am very emotional! Oh well.
Hope the rest of you are ok today?

 

[waitingginger]

Yes, Deb feel much happier with the endocronologist although maybe ask em again after our next appoinment in sept! lol things seem to take a very long time!!

wanbmum, i know its sop hard i bloomin cry and everything! new years eve a random little girl about 3 came up to me gave me a hug and happy new year lady! that was it i was gone in absolute floods in a packed pub

I think when we get our babies we will appreciate every little thing! even though this is a horrible thing to go through i think it will make us all the most amazing parents!!

xx

 

[silverbell]

Thank you everybody

Deb, thank you for the information about Dr Turek but I have to admit I'm not a 'phone person' and will go out of my way to avoid a phone call at all costs, so this is just too much for me to do right now. However, at the advice of a lady on the FF boards, I did email Dr Schlegel in New York and he has replied to me

He said that I was right in that my evaulation of the results does point to testicular failure. However, he said most men with this condition can be effectively treated with sperm retrieval and IVF. He said we needed the Karyotype and Y chromosome tests. Does anybody know who is the best person to ask to get these done? Is it our GP or should we wait for the Urologist??? I'm so clueless. If it is our GP we will have to go to another one, as I have mentioned these tests twice to him now and he has just looked at me blankly.

Dr Schlegel also advised not to let him take Testosterone yet (which we knew) and that an advanced centre would really be best to provide the bgest results. He said a high FSH of 35 does not adversely impact the chance of successful sperm retrieval.

He also attached 2 very detailed 'handout's, which contain lots of information about NOA and the various success rates of sperm retrieval. I've only just started reading it, but it says that research suggests that at least 60% of men with NOA will actually have sperm production in the testes.

I know that we may still find that DH has nothing, but I must admit that this has given us a little bit of hope.

Also, we've been talking about getting Dr Ramsay to help us here as we want the best there is in the country and we will get a loan to pay for it if need be. However, I'm pretty sure that the NHS won't do IVF with privately frozen sperm. Does anybody know if this is correct? In which case, we'll probably go privately for all of it.

We both agreed that we'd want to know 1 million % that there's just no sperm at all in there before going ahead with donor sperm and we feel that the best way to do this is to visit the best there is.

Anybody got any thoughts?

Deb - after your initial appointment with Dr Ramsay, did he start your DH on Tamoxifen straight away to improve hormones or was that at your next appointment? Sorry I don't know, but obviously not 'known' you long and wasn't sure what the timeline was for that sort of thing, as I know he'll want to improve DH's hormones prior to doing any surgery.

 

[Bookworm]

He said we needed the Karyotype and Y chromosome tests. Does anybody know who is the best person to ask to get these done? Is it our GP or should we wait for the Urologist??? I'm so clueless. If it is our GP we will have to go to another one, as I have mentioned these tests twice to him now and he has just looked at me blankly.

Hi Silverbell - because of the familial link in our case the consultant pretty much told us straight of that when the bloods came back we would almost certainly have to get the Karyotype and Y-chromosone tests. They indicated that our GP might do it - stressing the might...

So when getting the bloods we decided to push a bit and see if we could get the GP to do it there and then - basically we had the blank stare you mentioned. Luckily my DH previously worked in labs so he has some experience and was able to suggest that they call the lab and ask if they can run the test and also how the blood should be collected (ie what tube do they use - with or without anti-coagulant).
In our case the lab said yes and it was to be collected in the red tube (with anti-coag.) - however I understand that you could also be refered to genetics for pre-natal consultation for this too(?) it was an option DH's GP was mulling over before DH suggested he just call the lab.

Perhaps you could convince your dr to make a similar call? Or is there another dr at the same surgery that you could opt to see instead if you've lost faith in this guy? Might be easier than switching surgeries entirely (I'm in the UK so basing this on the system over here - not sure where abouts you are)

 

[silverbell]

Thank you Bookworm! I actually work in the hospital, as does DH, and we live in England.

I will give them a call myself I think and see what they say. Can I just check if they would do CF testing too and, again, would this need to be something I need to ask the lab about how to test for etc?

Thank you!

 

[waitingginger]

I dont know about the Urologist, from my expereince they are pretty rubbish and look for any obvious causes and measure size fo testicles, the texture etc and then will forward you to to a fertility specalist! i remeber thinking why didnt we just come here first!

Endocronolgist will do all the blood tests though too!! i dint bother with our GP he openly admited he had never come across it before and ddint know a thing about it but that if we needed him to put pressure on getting tests done quicker or wanted more funding from PCT after we have exhausted all options then to speak to him again and he will try and get us anything we need!!

I think our endo did lots of stuff on our first appointment that a urologist would normally do anyway! my OH has had a thing about having small testicles and the endo had all these balls on a string and he examined my OH and said his werent small they were a 15 out of 20 and this wasnt small at all, its just they had been stiched closely together when he had an undescended testicle repaired as a child. )his testicles are now always known as his 15s lol)

from what i know it will be the endo more than likely who does all the indepth blood tests as i dont think a urologist would be able to interprate them? but perhaps i am wrong? it seems to work differently all over the country but we only saw a urologist once and we wont ever see another one, just the endo and the fertility speaclist!

xxxx