Low Testosterone/Possible Brain Tumor - Brain Tumors Message Board

JudeLove · 05-12-2008, 08:04 PM

I am new to this site. <removed> My husband's is 25 and I will be 25 in a little less than three weeks. <removed>

In January of 2007 we started trying to have a baby. We tried for a year with no luck-and this was with me charting my basal body temperature and cervical fluid and timing conception. He had blood work done a few weeks ago that showed a low testosterone level-right around 180. They told him to come back in two weeks and have it checked again. He did and it was still low so our family doctor referred him to a urologist. The urologist examined his testicles and said they feel normal, but took more blood to see if it was primary testosterone deficiency (meaning, testicular apparently). After that, he told my husband that, from time to time, young men come in with this problem and they have a brain tumor that is causing this. My husband asked him if it was serious and he said yes.

1. Why would the urologist jump to such a conclusion like that? I really felt he had no right putting that kind of scare in my husband based off of a low testosterone in his blood and seeminly normal testicles. Granted, my husband has a hard time placing life events correctly and things like that, but he has been like that since I have known him and it isn't a severe thing.

2. From what I can tell, men with tumors that cause this have tumors in their pituitary gland and everything I have read about it points to it not being very serious.

We are just very very scared. We still haven't got back the results from the third lab they did on him and we are so worried. Does anyone have any experience with this? Is the urologist maybe just ruling out a brain tumor first? This is all very shocking to us.

mod-anon · 05-12-2008, 11:35 PM

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Bengie · 05-13-2008, 09:25 AM

Quote:

Originally Posted by JudeLove

I am new to this site. <removed> My husband's is 25 and I will be 25 in a little less than three weeks. <removed>

1. Why would the urologist jump to such a conclusion like that? I really felt he had no right putting that kind of scare in my husband based off of a low testosterone in his blood and seeminly normal testicles. Granted, my husband has a hard time placing life events correctly and things like that, but he has been like that since I have known him and it isn't a severe thing.

2. From what I can tell, men with tumors that cause this have tumors in their pituitary gland and everything I have read about it points to it not being very serious.

1) thats a common cause of low T. he might have been telling your husband the worst thing it could be a pit tumor. He probably also looked at the blood test and saw low LH and low FSH levels (indicating damage to the pit gland) Thats an indicator that there might be a tumor. the doctor was probably telling your husband exactly what he thinks it is. Only an MRI will tell for sure.

2) pit tumors are serious. you can die from them. either they stay small and you die over a long period of time becuase your hormons are screwed up or they grow and you die from them pressing on your brain and arteries inducing a stroke. thats the benign ones. the canceres ones are worse but 95% of the time they are benign. You can also die from the brain surgery you have to have to get rid of them, if they can't be treated wtih meds (some can some can't) (I had to have surgery to rid of mine)

dont want to scare you but also dont want you to think its nothing. Your husband will most likly have to be on HRT for the rest of his life.

rumpled · 05-13-2008, 11:11 AM

It is scary but in the end, be happy that you have a doctor that is taking you seriously.

I had my pit tumor found in 1992 and was told to "ignore" it... following that advice has well, led me to become disabled as 44. Had I received care in 1992, I probably would be in fine shape now. Many of not most doctors find them to be inconsiquential but anyone who has one will tell you the opposite - they are tiny little monsters that pack a whopper for not having size. In the end, when I did have surgery, they found two tumors and imaging did not show what was up there as it was so just keep that in mind.

Hopefully your husband can be treated with hormones but even so, as someone who is panhypopitary, it is not fun to take all the meds every day and regulate everything. I had surgery and now I take lots of medications in the form of patches, gels, shots and pills. Please be supportive and learn all you can.

Hormones so wreak havoc with emotions, memory and a lot of things - so hopefully when everything gets back to normal, he can get back to normal but it will take time. Hang in there.

JudeLove · 05-13-2008, 11:35 AM

I did read that it is so rare for pituitary tumors to be cancerous that it is a cancer that doesn't even have a staging system. So, that is pretty rare which makes me feel better. Obviously, we have to worry that perhaps it is cancer and it didn't start in the pituitary, but I'm trying not to jump to that conclusion. Especially since perhaps his symptoms would be a lot worse if it were that bad.

He does have issues with depression, memory, energy, fertility, and just being able to enjoy life overall. It has caused so many problems in our marriage. Right now, we are separated and trying to get through this. His personality has changed so much over the past two years, it is unreal. He is less loving or attentive to me. He has just stopped caring about everything. He makes very bad financial decisions. I think maybe as a way of self-medicating? This last time that we separated, I almost gave up on the marriage. I am so glad now that I decided not to because now we might have an answer.

We can deal with the fact that he may need surgery or he may need to take HRT the rest of his life. As long as we can be together.

And I apologize for not being anonymous! I'll try to remember that.