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Help getting PCP to do tests- Desperate

I have posted on here before asking advice about whether my 27 year old husband could have a pituitary tumor. We have enough reason to be suspicious but feel really discouraged about getting doctors to listen. Here's an explanation of our experience.

Two years ago a PCP discovered his testosterone levels were low (below 200). After doing three tests he referred to an endocrinologist. We didn't know what we were doing at the time and ended up at a diabetes clinic with an endocrinologist who accused my husband of doing steroids. After doing testing she apologized, believed that he wasn't doing steroids and started him on Axiron. His prolactin was only 9 and his FSH and LH were in the low-normal range. She said that the problem was his pituitary gland but that she wouldn't do an MRI because his prolactin was fine.

Because of insurance he switched to androgel and a year later her practice had closed. His PCP continued the treatment but his testosterone levels were actually lower than before treatment. At this time we discovered he had low T4 and T3 with a normal TSH level but the doctor didn't think it was bad enough to treat. Frustrated, my husband quit his testosterone treatment. A year ago he got diagnosed bipolar but since this Psychiatrist said he's confident that he's not bipolar after all and has a physical illness with bipolar like symptoms. He was hospitalized after having lithium toxicity and no one would investigate his pituitary gland. I pestered two hospitals and two psychiatrist, but they said their hands were tied even though everyone agreed he might have a problem and probably isn't Bipolar.

Now we are on medicaid because he has been too sick to work a normal job. He's exhausted, always sick, and incredibly depressed with episodes of rage. We went to a doctor who had no interest in evaluating his pituitary gland. His TSH has dropped considerably since even a year ago and we have no idea what his testosterone levels are. He started having erectile dysfunction for the first time, so I am sure they are low. He has plenty more symptoms and if anyone would like to chime in with any advice I would be very happy. Mostly though I need advice on doctors.

I know everyone has their own story of getting diagnosed or even just getting a doctor to check them out. We want an MRI and a full pituitary function test. But, I would be happy just to have fasting blood levels drawn. More than anything we want to get a referral to a new endocrinologist since his closed and honestly wasn't very good. Please, please, does anyone have advice on how to work with the doctors? We're both young and used to be healthy. I'm 24 and haven't really had to work with doctors very much before.  I feel like we just have alot to learn and time is of the essence because he's getting worse by the day. A 27 year old shouldn't have ED and no energy.

Please help. We're desperate. How can we get doctors to do blood work? Does everyone else agree that his pituitary gland should be investigated? I know another member has mentioned Cushings and I really want him evaluated for that.
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Avatar universal
COMMUNITY LEADER
I got sick when I was in my 20's too.

Doctors differ in training and temperament - and have good and bad days. From my take, the general trying they are given is that any pituitary disorder is rare, and some docs seem to find a weird quota that is already met and so cannot even consider anything "rare".

I have had some PCP's do any test I want and others who simply run one and dismiss me. Your hubs has abnormal testing. You can do research and point the doctor, gently, to more testing... which may or may not be received well on that day or at all. So it can take doc shopping and really reading the doc, figuring out if the doc is one who will not take any input from patients, or one who is willing to listen. Most resent being told anything by someone who does not have a medical degree.

I learned to hang back, give minimal info and wait to see. Docs also have very limited time these days with insurance pushing them to see so many patients to make a living, and so they don't get "think" time. They go for the easy solution. In a way this makes sense you have to rule out the easy then go for the rare - the whole hoofbeats means horses not zebras (we pit people tend to wear or relate to zebra's for that reason).

TSH is a pituitary test, but most doctors really fail to realize it.

I have the term "endodud" for a reason... it took me over 10 endos and a lot of travel to find a decent one. I went all over. You should be able to ask for the blood work - it is just a matter of finding a cooperative/smart doctor. It can take time and yes, it is frustrating.
Helpful - 0
Avatar universal
Wow. You have been through so much haven't you? It helps having people like you validate his tests are abnormal so that we know to keep working. 10 endos? You must have felt discouraged. Thanks for the advice. I guess the reason its hard to push on is that we second guess ourselves and think that maybe we're creating a problem that isn't there.

When calling to make the appointment does it help to say we're wanting his pituitary gland evaluated? Or will being so direct make the doctor feel threatened?
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Avatar universal
COMMUNITY LEADER
A normal endo will "say" they can evaluate the pituitary. It has been my experience that few can. You really just need enough testing from the endo to get to a pituitary center.

It helps that you have reached out and started to research, so you will do tests at 8am fasting off meds (take meds after) look up how the test is done and make sure done correctly, keep Urine jugs cold etc. silly things like that kept my diagnosis at bay.

You can say that you suspect a pituitary issue and why but I would wait until you see the doc until you get a feel for if you can push.  I have waited months for docs rated highly in magazines only to find the guy a super dud (he said my thyroid and pit were fine, even though I had super high hashimoto's antibodies, previous surgery with a type of tumor that tends to recur, more nodules on side left, was hypo and felt like poo, he patted me on back and said I did not even need thyroid meds). I actually gave up looking for over a year after that and got much worse. The doc I saw after put in writing that I don't have Cushing's but I knew by then that his office was mishandling my tests, so dropped him and doc shopped. Plus I was cyclical so I found a doc that let me test, but with every normal test he would say, oh, you are fine now. I felt he was blind. If he bothered to look at me, I was anything BUT fine. I often dreamed of kicking him....
Often cried in the car after appointments.

It just is not easy.



Helpful - 0
Avatar universal
What an awful experience. I am happy you stayed strong and continued seeking help. It's so crazy how specialized someone needs to be for this issue. My husband feels so bad he wants to just pay out of pocket and circumvent the insurance companies. My fear is that we will finally get the tests he needs, nothing will be wrong, and he will give up hope of ever getting better. His hope is so fragile right now. I'm afraid of losing him. He feels strongly that he's not mentally ill and that it's physical. Since Psychiatrist haven't been able to help I'm scared that if he doesn't have a pituitary problem he will just give up. Sorry, I am overwhelmed and there are few people who understand. We really want to start a family and he wants to get better. Sometimes he feels like he's made it all up.

Have you ever heard of Dr. Jacob Alan?

How do you feel now? I pray you have found health.
Helpful - 0
Avatar universal
Also, I dont know if I said this but he is not being treated for any hormones right now. He only takes latuda, which is an atypical antipsychotic for his depression. All it does is make him anxious. He stopped TRT a year ago when his levels were still low and his endo had closed.
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Avatar universal
COMMUNITY LEADER
I am stable. The steroids hid things so I was self treating other things so once they receded, I had new things show up.

It is very hard to stay at this so you are not alone in that. It also does not help that often the mental issue is a symptom not a stand alone issue. If you search, you can find papers on that.

I don't know the doc, but when I finally did get my diagnosis it was from a doc who was out of network and did not take insurance. He spent more time, and took  a more detailed look.  I would look up reviews and if you can afford it, I felt the money spent on the one doctor was more well spent that all the co-pays for going in a hole to no where for years.
Helpful - 0
Avatar universal
Do you remember how much it cost? I mean ball park. It wasn't tens of thousands was it? This doctor is based in New York and doesn't take insurance but can meet on skype of you cant travel to him. He does neuroendocrinology and behavioral neurology.
Helpful - 0
Avatar universal
What if we spend tons of money and he's fine? Its all so scary. Do you really believe he needs looked into?
Helpful - 0
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