Your husband is a victim of bad advice. They are treating ONE of the hormones that are low without treating the reason it is low. And not once did you tell me what type of tumor he has - so they have not done the testing to determine what he has to treat the source aka the type of tumor.
So, you have to do all you can to find a pituitary center. Larger hospitals and university centers will have one. Get copies of all tests and MRI reports. Even though you get a neuro-endo (that is what you need) some are still... lacking in skills so it pays to read up and know if you have a good competent doctor.
The doctor will probably wean him off the testosterone which, BTW is causing some but not all of the emotional and mood symptoms. Pit tumors tend to cause a lot of those symptoms anyway. Adding testosterone - which can convert to estrogen - has that been tested - can really mess things up a lot.
He may not have LH and FSH - any testing on that? Or cortisol can lower testosterone as well.
As for changes, OMG - my husband is thrilled my tumor is under control. I know a lot of people get divorced over their tumors. The emotional toll is great and not easy to control (impossible for the person with the tumor for the most part!) and it is just awful.
So, if you can hang in there and drag him to a pituitary center - I hope you can get a decent doc, and get the type of tumor, and the treatment he really needs. The size of the tumor IS NOT a factor here so if someone says that just walk away - they are not skilled. Even a tiny little one can do a lot of damage. So there is information in the health pages - read up and ask more questions.
Thank you so much for responding back. I'm not sure what type it is and he will not allow me to go to the dr.s with him. I showed him a post on here about this topic and he got upset and defensive. He doesn't see I'm not against him I'm just trying to figure out how to fix the problem. I'm at such a loss of what to do. I do not want a divorce. How do you help someone that doesn't think he needs help. I told he he doesn't recognize the changes but others do. I truly believe that the tumor and med or and lack of proper meds is the issue. He thinks because the tumor is tiny that it cannot be affecting him. I'm thankful I found this sight because now I know I'm not insane and others have experienced this. Your advice alone makes so much sense to me. I always thought it was strange a dr would just prescribe testosterone and that's it.
When you are *in the body* you cannot see it - I know I could not. It is not his fault. And the doctors are just wanting to toss pills at it - after all, why treat the source when you have the reps coming to your office pushing pills and the insurance companies pushing you to cut office appointments to 1 minute - who can think! The docs now get paid hardly enough to cover staff, insurance, office space and all so they need to see numbers, not a patient that takes time.
Neither one of you is insane and he is suffering. The good news is that the tumor is benign 99.9% of the time. The bad news is that not knowing the type really works against you - the most common type does a number on you emotionally and hormonally, but there are a couple of types that can have symptoms that can (but not often or always) lead up to death. So it is important to know the type and treat what you have. Mine left me disabled!
The testosterone is not working - and it won't as the pituitary is just going to work against it. I had for years docs that treated my symptoms and it never worked. That was my clue that it was more, but the docs just called me a liar and said I was not compliant with meds or my diet etc. But I knew that I was very compliant so it was a battle between *all patients are liars* and *hey dude I am really sick!*.
Oh I know it's not his fault and even when he is in his worst mood I could never and would never turn my back on him. At the same time he isn't even willing to even think all this is connected. I told him that he wouldn't recognize a behavior or mood change in himself. I'm just trying to figure out a way to get him to realize he needs to go back to the dr.'s. I wish he would let me go with him so I can explain to the dr. that her testosterone cure isn't helping. The scary part is even if he does go to the dr. I won't know what he is telling her. So it worries me that he will never get properly treated.
I got my tumor removed couple of months back. I had low Testosterone as well. It seems to be coming back up (went down to 80 coming back up 287 right now, I want it to be 600).
I did not take any shots. I don't think I had any mood swings although my wife complained a little.
I would really encourage him to let you go with him to the doctor. You are his partner and have his best interests at heart. Plus it helps to have someone there as it can be a lot of information to take in and the other person can recall things you cannot.
I only had one doctor that allowed us to tape record the appointment but usually I need another person as some information can be upsetting and then it is hard to really listen well. Plus the information is complex and the other person can ask questions and take notes to help.
You can be working together so he gets healthy as it works out better for both of you. If you got sick I am sure you would want him there.
Andy - It may be that you did not supplement as the shots are pretty known for causing swings even in healthy people. I know with my tumor and my low T, I had swings. Different people, different tumors, different hormones off can cause different issues. What type of tumor did you have?
Hi, Bella. I'm a male, and can perhaps understand better how your husband's feeling over this. I take growth hormone and testosterone. It is possible he has a growth hormone deficiency which can cause or at least contribute to his feelings, physical and mental. With regard to testosterone replacement, modern thinking is to use a testosterone gel which is applied to the upper body in the morning, daily. This mimics the body's normal morning peak. That's why men get an erection in the morning. The testosterone is highest then. When you take a testosterone injection, your level first goes very high and then gradually lowers. Often, before the next injection, your levels are too low.
I find that the daily gel keeps me on an even keel, and so do the other guys here in the UK where it is the standard treatment. I think the gel costs more than the injection. Lack of testosterone and growth hormone in men affects them differently than women. Taken together they seem to have a much more beneficial effect.