Dealing with ED

Frank_London

Redford said:

@Frank_London ;
I'm probably not explaining things clearly, because you still don't seem to understand. Sorry about the poor job I'm doing.   

Never mind. We'll get there!  )

He did come clear to her about everything.

Great.

He saw her once where he didn't tell her about the ED. I contacted her after he asked me to and she now has the full picture. She was leaving for two weeks the day I spoke to her. She isn't back yet, but told me she suspected low T (I only mentionned ED) and would have him tested as soin as she was back. 

See I read that as
1. he saw her, but didn't tell her.
2. He told you to tell her
3. You called her and explained everything
4. She immediately went on vacation for two weeks; she's not back yet.

I fail to see how her being a friend will prevent him from gettinf treated.

Because it's embarrassing and personal, and she is a friend of yours.
But if you're sure it's not a problem for him then okay, let's move on.

Serenity

I wouldn't worry about anything but the total T, and maybe the free T, for now. That way you can rule low T in or out, and then proceed accordingly. If it turns out that his T is low, there's a comprehensive list of tests he'll need to run. 

In the states, you can get a total T test done at a walk-in lab, usually for under $50, and you typically don't even need a doctor's orders. That's the easiest way to go, if it's available where you are.

If he ends up seeing your doctor, you might want him to ask for a sample pack of Cialis, see if that helps. 

Redford

Thanks a bunch for the list. I'll print it. 

After I talked to her, she gave him a call and they discussed testing his testosterone first, but that if it turned out he wasn't low T after all, they would discuss Cialis. 

Getting him tested is no problem. I am positive she will run any test we ask for. He'll get a call a few days after she sends in the request and we'll have results a fee days later. 

Angeline

Redford said:

Do you have a link to the thread?

Sorry got busy later and missed this.
http://marriedmansexlife.vanillaforums.com/discussion/1936/examples-of-utterly-clueless-gps-trying-to-diagnose-low-t

Redford

Thanks!

Frank_London

On reflection, I still thinks he needs to see a different doctor. This whole scenario reads like you and your friend (the doctor) are having conversations with each other and making decisions about him. That's not exactly professional, nor is it empowering him to take charge of his own medical problems.

Redford

@Frank_London ;

Dude, you are making a heck of a lot of assumptions and it's starting to piss me the hell off. Just so you know, I spoke to her once. It was a short conversation. That is it. 

Calling her unprofessional and implying I'm railroading him is uncalled for, mean and ignorant. Not cool, dude, and certainly not helpful. 

Now, would you, for the love of all that's holy, drop the subject?  Finding a new doctor, here, is very hard. I have friends who have been on a waiting list for two years after their own doctor retired and still don't have one. We're not switching doctors. End of discussion. Now, can we please move on?  Because this is a not a productive discussion and I'm done talking about it. You're not helping. 

Frank_London

Redford said:

Calling her unprofessional and implying I'm railroading him is uncalled for, mean and ignorant.

It was none of those things, but sure. I'm out.

Athol_Kay

Frank_London said:

Redford said:

Calling her unprofessional and implying I'm railroading him is uncalled for, mean and ignorant.

It was none of those things, but sure. I'm out.

@Frank_London, @Redford said it wasn't an issue several times over, spread over a few days, and then you said you'd drop it... but then came back for another pass at it. It's really not surprising that you got push back.

You did imply the doctor was acting unprofessionally.

I think we've seen repeatedly how important it is for the wives to become active in following up on questions of low T with there husbands. The guys are always highly avoidant of talking to any doctor, they always require some degree of force to get to be seen and treated. Half the women on the forum with this issue have had to make serious threats along the lines of ending the marriage to get their husband treated, I really don't see how her talking to their shared doctor is some kind of over the top response.

If anything, I'm surprised how easily this is all going down with getting follow up.

Redford

Just so things are clear: 

- Our sex rate changed dramatically during the summer. 

- Four months later, after I told him I couldn't live with not knowing what was happening to us anymore, he told me he has ED issues and that the reason we had less sex was that he only initiated when he felt confident he wouldn't have ED.  He also said he was feeling like crap all the time, had no energy, no focud.  At that time, he said he would talk to his doctor.

- Two months later, he had told her about all the other symptoms and had been tested for a million things, but he hadn't told her about the ED. He said he was struggling with telling her (because it's hard, not because she is a friend). I asked him if he wanted me to relay the message for him. He said yes and was very thankful for the offer. 

- I talked to his doctor and told her he had ommited to tell her about the ED. I knew all the symptoms were consistant with Low T, but I only brought up the ED. 

- She immediately called him even if she was on her way to the airport and told him she would have his testosterone checked as soon as she was back from vacation and that, depending what the results were, she may prescribe Cialis if that's all he needed, but she was pretty confident his T was funky, based in the symptoms. 

- Husband is not very well versed in health/medical stuff and felt overwhelmed. I offered to ask on here for what we needed to look for and he agreed it would be a good idea. 

And so here I am. He asked me for help. I absolutely wasn't going to refuse him just for the sake of letting him deal with his own health problems. It would be cruel. 

Thank you, guys. 

Redford

Husband's doctor was back in the office this morning. She just texted him that he has an apointment for blood to be drawn tomorrow morning. 

The ball is rolling. 

Crashaxe

Your doctor sounds like anything BUT unprofessional, @Redford . 

The level of service you are getting from her is almost unheard of anymore. Getting a doctor that actually gives a crap is extremely difficult anymore. Getting calls and texts from a doctor is rarer than hens teeth.

And you are absolutely doing the right thing in being involved in your husband's situation. It really is a problem for both of you, and a lot of guys have a real issue talking about ED. By stepping in, AT HIS REQUEST, you are helping him seek care in a major way. IMO, that is what loving spouses do.

Redford

I never did update this thread. Six months later, we're back to being in a good place. 

We never did figure out the sudden drop, but when he was tested in February, his testisterone was low. Not dramatically so, but at the very end of the normal range for a guy his age. I don't remember the exact numbers and my phone has since died, bringing its secrets with it. 

His doctor refered him to a urologist and suggested we start fixing what we could on our end. So he went on a ton of vitamin D, a fair amount of zinc, multivitins and B12.

Also, he had a heart monitor for 48 hours and it turned out he was experiencing pretty serious peaks in blood pressure at different times of the day and night. His blood pressure runs in his family and so he was pit in Coversyl.

In the span of two weeks, his blood pressure was back to normal and he was sleeping better. 

After three months, he was feeling much better and his testosterone was tested again with much better results.  

It's now been another six months. I can't say he is back to normal, but his sex drive has returned, the ED is gone, and he is feeling well. 

He will be tested again soon. Next week, I think. No one, even the urologist, understands what happened. I'm just very thankful he feels better. 

Redford

Another update. 

My latest update was 1.5 year ago. Things went back to normal for a few weeks, and then went right South again. More tests, more questions, more frustration. 

His last three tests showed excellent testosterone levels. Yet, the signs remained. It was like low T without the actual low T.  Madening. 

And then it got worse. Excessive fatigue set in. Medical leave. More fatigue. We saw a urologist who couldn't find anything wrong and couldn't help us much, but at least, we could rule out phusical causes as far as his "equipment" goes. Even small wins are wins.  

Then, because we were switching insurance companies, we had to undergo complete medical evaluations, so he went through the whole battery of tests once more. The latest blood and urine analysis were done last week.  

As fate would have it, we were seeing the endocrinologist today. He looked at all the past tests and agreed that something was wrong, but that the T numbers were way too normal. So not an endocrinologic problem. And THEN, he saw that the results from last week's tests were just in and he opened them.  Ding, ding, ding. He thinks we have a winner. 

Hemochromatosis. It's a blood disease where the body is unable to flush out excess iron and stocks it in the organs, causing lesions and dysfunction. It would explain all of his current symptoms and also his fibrillation episodes from the past few years. 

Of course, we'll need a formal diagnosis and we will need to see a bunch more specialists, but the endocrinologist was fairly confident that this is the beast we've been fighting. 

For now, his kidneys seem to be affected the most. His latest results showed protein and blood, and his creatinine levels are pretty high. 

So from what I can tell from reading, several of his organs could be affected:

- kidneys: all of the abnormal test results from last week
- heart: auricular fibrillation episodes from the last few years
- liver: various digestive issues that appeared in the last two years
- pituitary gland: fatigue, sexual dysfunction

At this point, it's all hypothesis. We need to talk to his doctor, get a bunch more referals, and investigate this further to hopefully get a firm diagnosis. But it's a start. 

I'm trying to be his rock and keep things normal for him, but I'm silently freaking the fuck out. So that's that for now. 

Redford

@Serenity
I forgot to tag you in my post above. Just in case this info could be useful to you, regarding ED. 

Serenity

@Redford My daughter also has a blood condition that causes her to retain too much iron. As you say, the iron sits on the organs and causes damage.

To avoid this, she takes a chelator med called Jadenu. It comes in a pill format and is taken daily.

There are older (cheaper) formulations, one that is dissolved in liquid called X-Jade, and another that's taken subcutaneously called desferral.

So sorry you're dealing with this. Just make sure you find a good hematologist. We have one of the best in the country for our daughter, and it makes all the difference. 

Redford

Thank you. 
Can I ask what your daughter's condition is called?  I'm trying to gather all the info I can get, in case hemochromatosis isn't the diagnosis. 

Serenity

Hers is a genetic condition called thalassemia.

Her body doesn't produce enough hemoglobin (the part of the blood that transports iron). It's common amongst Asians (she's Chinese), and people of Mediterranean background. 

I know everything seems overwhelming right now. But you'll gradually sort it all out. You'll do the research, find the experts you need, get the information to make good decisions, and you'll handle it. In time, it won't seem quite so scary. 

Can I ask what your daughter's condition is called?  I'm trying to gather all the info I can get, in case hemochromatosis isn't the diagnosis. 

Katt

My FIL has hemochromatosis.   I don't have much to offer other than to echo the advice to see a good hematologist, one who has experience dealing with the condition .   GPs and other doctors don't typically know much of anything about it.    Good luck!

Redford

Thank you both.