Hypogonadotropic (secondary) Hypogonadism ***(losses mentioned)

thistle8677 · February 2016

Hello Ladies,
I'm so exhausted, but I need and want to give a brief update on my fiancé's health.
Since October we've seen a lot of Drs.
PCP, Neurologist, 2 Rheumatologist, Endocrinologist, Urologist, Naturopath & Cardiologist. (Some of them multiple times)...

I've posted about his Hashimoto's Thyroiditis, Mulitple Autoimmune Syndrome & various test results and symptoms previously, but some of the main components are high TSH and extremely low testosterone in addition to a whole list of physical symptoms (migraines, arthritis, hair loss, facial rash, etc.)

The urologist has ruled out any structural reason for Hypogonadism, so we are left with basically two reasons:
Pituitary/Hypothalamus (tumor, swelling, growth)
or
Autoimmune causes (there is one condition in particular that the dr mentioned, but we don't have any answers yet.)

At his age, his testosterone should be between 649-699; his is 163 (this number is after a 100pt drop over the past 3 months.)
It's terrifying and heartbreaking and I looked over at the secondary infertility board, but their initial post states that it's for women undergoing infertility treatments (I am not in that category)...so I don't know where to go. Perhaps an entirely different website...

We are doing an SA, but the Urologist doesn't expect to see any sperm.
Right now we are waiting for a call from a new group of Drs at OHSU which is a hospital and university, so we are hopeful that they will work as a team and finally give us some answers and get my man the proper treatment.
It's not a definite that fertility can or will be restored, but I'm trying to keep positive.

He's only 29 years old (almost 30.)
He has no biological children and this has been a 19mo path of TTC with 3 losses.
Thanks to any and all of you that read this!!
If anyone has any experience with male factor infertility I'd love any advice or information.

Xoxo

Sporty1216 · February 2016

****lurking****

@thistle8677 -- this is all so hard. I am so sorry. I don't have much to offer other than to just say that I am rooting for you guys and hoping for more answers soon. I'm sure this is so taxing on you both. I hope you two can stay strong together as you weather this journey and that you can continue to find good support here (or elsewhere if that suits better).

Anyway. Thinking of and praying for you guys. I always look for your updates and continue to hold out hope that you two will get this all resolved.

rspalding001 · February 2016

I can only imagine how hard this must all be for you both. I think its obvious that you are being an incredibly supportive partner and Im sure that helps him so much. Being powerless in these situations is so frustrating. Thinking of you and wishing you the best!

thistle8677 · February 2016

Thank you so much @sporty1216 and @rspalding001 xoxoxo

How are you feeling @sporty1216? I need to read up and catch up!

Sporty1216 · February 2016

Doing well, thanks, @thistle8677 ! We got to see baby on Monday and everything is looking good. Just over 8 weeks now and anxious to get past the first tri.

Checking in on here regularly to keep track of those of you I got to know during my time here. Rooting for all of you and glad for a way to keep in touch.

thistle8677 · February 2016

@sporty1216 8 weeks!!!

Very exciting! So so happy for you.
I need to take a look at the grad updates.
I haven't had much time recently.
xo

jennh75b · February 2016

I'm really sorry for the struggles you are facing. I hope you find some more positive answers soon!!!!

thistle8677 · February 2016

Thank you

@jennh75b

PoeMasque · February 2016

@thistle8677 can you start your own board on here? I'm sure you are not the only one struggling with this.

The only area of male infertility I know about is related to cystic fibrosis. Ocassionally men will be infertile as their only symptom of the disease (they don't know until they are unable to conceive) due to only a slightly misfolded CFTR protein and a dissected vas deferens.

Best of luck at OHSU, I worked there for 9 years (on the research side) so I know it's a great place. I've heard really good things about their fertility clinics, so you will be in very good hands!

thistle8677 · February 2016

That's awesome @PoeMasque thank you for the idea and encouragement. Are you still in the Portland area? I live in SE Woodstock neighborhood.
My man has a lot of symptoms that point to pituitary/hypothalamus. We just need to rule out a tumor or a side effect of an autoimmune disease.
We were able to conceive 3 times (all resulting in early loss), however his health has taken a nose dive in the past year. He has extremely low testosterone.

PoeMasque · February 2016

@thistle8677 no, I moved a year ago to the Eugene area, but am actually selling my Portland house now. It's in SE near Flavel and 71st (I think about 5 blocks south of Woodstock). Going back I can't believe the traffic that people in Portland put up with! It's crazy!

Im sorry to hear your fiancé has gotten worse in the last year. hopefully they can figure out what's going on and you will be back on track. At least you know you can get pregnant

is he on testosterone injections? They can have some strange side effects (like making your blood super thick!)

thistle8677 · February 2016

Omg @PoeMasque I'm on 70th & Duke. I kid you not! I too am considering selling this summer. It's a freaking nightmare here!!!! I was thinking of heading out to the Dalles, but that's just my instinct...not sure that's the right area for us.

No treatments have been started yet. Testosterone shots are not an option because they actually stunt sperm production. They don't recommend testosterone therapy to men TTC. I have read about hcg shots and clomid for men, but right now we need to rule out a tumor and go from there.
It's really awful waiting.

MntnGirl · February 2016

@thistle8677 I don't have any experience or advice. I am so sorry. Starting a board (as @PoeMasque suggests) might be really helpful for others as well as you. Even though you are just starting on this journey of testing, other people might recognize the symptoms.

PoeMasque · February 2016

@thistle8677 wow! We were neighbors! I used to run in that area all the time, I know I ran past 70th and Duke regularly (what a small world!). The Dalles is very small.....I love the Eugene area, good food, even better outdoor activities than Portland, and NO traffic!

I've been promised a bidding war and crazy-high sales numbers by several realtors for my Portland house, so you should at least be set after selling your house up there

glad your man is not on testosterone injections. Every time I have a patient on them they say it's pretty awful. Although being on hcg or clomid for anyone seems like it could also be hard. Hopefully there's no tumor, and hopefully you find out soon, waiting is soooo hard

Piperella · February 2016

**Lurking**

I just wanted to say I'm so sorry about everything that is going on but I'm glad you are getting a few more answers. I will say that while I did have PCOS and some other issues, the main reason we started with an RE was because of my husband's issues. There are a few girls on the IF forum that are dealing only with MFI. You may want to try there, but I do think that I would have appreciated finding a board specifically MFI. I'm sorry if I'm not in the loop, but could IUI be a possibility (and even IVF if IUI doesn't work?). Sorry to sound daft, but I'm trying to think of helpful things.

thistle8677 · February 2016

Thank you @piperella

My fiancé actually got a wonderful SA report, so at present we are just continuing to see all of his Drs and pursue further diagnosis as well as starting with a new treatment plan from a Naturopath; (this in addition to treatments from his several specialists.)

Hope you are doing well! How are you feeling?

thistle8677 · February 2016

Neighbors! @PoeMasque
I left you a brief PM about that! Haha

PattersRN · February 2016

@thistle8677 I got your message, if you haven't already, check your box again because I hit enter too soon on my first message. Sorry to hear about all your struggles, but glad to hear your fiance's SA was good! I hope his docs are able to get it figured out!

Goldsgirl9 · February 2016

Oh @thistle8677 I'm sorry to read this but happy that it seems like you are starting to get somewhere and some answers with his health issues. So glad his SA was good! Thinking of you.

thistle8677 · February 2016

Thank you @Goldsgirl9 !
I will message you. You've been on my mind! Hope you afr enjoying your pregnancy xoxoxo

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Hypogonadotropic (secondary) Hypogonadism ***(losses mentioned)

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