The answer is yes, and even before I read your post, I was thinking Cushing's.
After reading your post, I am thinking you should really look into Cushing's.
I had it myself. I was not diagnosed bipolar, but I had friends that were. It is well known that it has a lot of depression and other symptoms are associated with Cushing's and your hubs has a lot of classic symptoms. Look it up.
Prolactin is... the most common pituitary tumor but is NOT related to the other types of pituitary tumors - the doctor is an idiot... find another.
Get some baseline testing - ACTH, cortisol, GH, IGf-1, and more - then get a referral to a pituitary center. Let them to the MRI as you will get a proper, hopefully, pituitary MRI (with and without contrast, recording uptake of contrast, called a dynamic MRI).
A neuro-endo won't take you without a basis...
You have to get the diagnosis, then find the source (pituitary, adrenal or other) and remove the source...
It is not as common in men. I know a couple. Not many.
Thanks for your reply. I have been researching Cushings and really suspect he could have it. At the time that he first started having symptoms he had a patch of hair turn white and fall out of his beard. The weirdest things have happened to him and the doctors just say he's mentally ill. I just had to put him in the hospital because he got Lithium toxicity and became psychotic. It's so discouraging. How were you able to get diagnosed? We have been trying for two years to get an MRI. I almost got him one in the Psych unit but it fell through. All of his psychiatrist now say he's not Bipolar but have no interest into finding out what he is. He has been so sick that he can't work and we have to be on Medicaid. He used to work 50+ hours a week. It seems like no one cares because we're Medicaid.
He also has giant hands and feet. He wears a size 17 shoe and has to get XXL gloves. It makes me wonder if his growth hormones were elevated in highschool. He's 6'2 and has huge bones. Even people his height always call him huge.
He very recently started having erectile dysfunction and his sex drive has been decreasing for years. He is only 27!! He used to have a very healthy sex drive and no trouble what-so-ever. Over three years ago we got pregnant but lost the baby. So, he isn't infertile. I feel like he's getting worse and I am sure he probably has fertility issues. We want to start a family but he can hardly shower much less raise kids. Sorry for rambling. He almost killed himself on the lithium and now that he's off isn't suicidal. I'm just frightened. His life is literally on the line and I kid you not, we have had doctors shrug their shoulders at us. His doctor says his thyroid is fine.
It could be that he has acromegaly, or he could have two hormones going off - and have both Cushing's and Acromegaly. I know I had two tumors but it is rare - mine were Cushing's and Prolactinoma. You can also have one tumor press on the part of the tumor that causes that other hormone to go bat crazy.
You need to find a neuro-endo and a pituitary center at a larger hospital or university hospital.
Have you gotten copies of the tests? I was told that my thyroid was *fine* but found they just did TSH and it was the wrong range and I was really out of range anyway. I was not fine.
You have to get to the right doctor - get tests for cortisol, IGF-1, GH, ACTH - all at 8am fasting plus the TSH, FH LH etc. and just a good test of testing that can show major hormones and mineral, 'lytes and all.
It may take a while to find a doc that takes the insurance, but it can be done.
Thanks for all the help. We always get copies of his blood work. We learned that the hard way a few years ago. This is encouraging. We will keep searching and trying to get him help.
One last question. This is strange but we've always tried to figure this out. He developed white patches on his skin as a kid and since he's gotten sick he has been really itchy. A doctor said its not vitiligo. Are there any pituitary disorders that cause white patches? Its a long shot but im looking into anything. He also had MRSA a few years before getting sick.
I learned it the hard way too.
I am not sure about the white patches, but many of us get auto-immune this, auto-immune that. and I had so many skin infections, other infections and just a general downturn in health that it was sad I saw so many docs who were baffled...
I finally had my adrenals removed when pituitary surgery was not successful (my tumor grew back immediately). Most people post op do fairly well, but the damage done can be hidden (muscles, bones etc) and pop up. Nasty disease. Hope your hubs gets a doc who acts pronto.
I have been emailing a neuroendocrinologist the last two days. I didn't mention cushings, just his symptoms. First thing he said was that it really sounds like cushings. He said he would like to take Robert as a patient. I asked how confident he felt that something was wrong regardless of what and he said he was quite suspicious of cushings.
Thank you for your help! You have been one of the people to help us keep going this week. This doctor cost $650 and we havent decided yet but we feel hope for the first time in a while. We are going to a Pituitary patient symposium at Ohio State University this weekend by the pituitary society. I am hoping to network and learn. Robert is really hoping it will be a good experience.
Did you have alot of anxiety with cushings? At night he feels so panicked in his body. Its not mental anxiety, just physical. Tight chest, racing heart, wide awake. Anxiety meds havent helped. Could it be from cortisol? Thanks for all your help. You have no idea what it means to the people you talk to.
Anxiety is a huge component of Cushing's so that is classic.
I was hoping to go to the symposium but I don't trust myself to drive that far anymore. It should be a great experience. I hope you post back after!
I will. It is too bad you can't go. It would be lovely to meet you. I will take notes so maybe I can post an overview in a journal on here. Thanks for everything!
If you don't mind I have another question I could use feedback on. A year ago his TSH had been consistently around 3 or 4 for a few years, so high end of normal. His t3 and t4 were a little low so the tsh seemed appropriate. Now a year later his tsh levels are always below 2 with t3 and t4 still the same. We wondered if this could be a sign of a growing tumor. Do you find that drastic of a tsh drop with consistently borderline low thyroid hormones seems significant? I'm just trying to prepare for doctor appointments.
Also, his prolactin was 13 last time. Is that normal for a man? I know its within normal range but I didn't know of it was ideal.
I don't know normal prolactin for a man. :( but I do know that they only look for an elevation as the hormone is only used for one purpose so you don't want a high level.
Your doc is a ... Not nice man. Mine treats the t3 and t4 to be at top of range so you feel better. He should probably be on thyroid now, but it would change dosages all the time. I was on every color for a while. My TSH was super bouncy before pituitary surgery but we thought it was my thyroid, which was removed (I also had nodules and hashimoto's). I did not get stable thyroid tests however, until I had my pituitary surgery.
Yes he has not had good doctors at all. I think we're gaining ground though. A really goo neuroendo said he would take him on and I am hoping to network at the symposium. Hopefully we can get him some good docs. I will make sure to press about his thyroid hormones along with testosterone then. Thanks!
Good luck and keep us all posted! Fingers crossed!
Thanks. The symposium was really good and we had the chance to ask doctors some questions. I really feel like he has a pituitary tumor but for some reason after meeting people with one I think were both feeling nervous again. Like what if we spend a bunch of money and he's fine? But I really think he has central hypothyroidism and I know thats indicative of a problem.
Now our issue is trying to figure out who to go to. Its so stressful! Our options for who medicaid will pay for are limited. And its hard to tell if a doctor will be good. Today I feel beat down and he is having another anger mood swing. But we learned alot and met some interesting people.
I really hope he can get a diagnosis and have some hope. I am so confused about whether he is physically ill or mentally ill. I have some docs say secondary hypogonadism is usually from a tumor and some who say its not a big deal.
You said you paid for a doctor who didnt take insurance. Did you go to him in person or meet long distance? I am just interested in how long distance works. Do you remember what city he lived in?
My husband jokes "have tumor will travel"...
It is a good bet that based on the symptoms you gave that his mental issues have a physical cause. Having been in the body, I can tell you that it bites major booty because you can't control yourself.
I can tell you doc shopping is a crap shot. I have gone all over and seen docs people have said are wonderful (I hated the guy) and others who were eh, and others who are wonderful.
Distance is a dance. You have to travel back and forth often sometimes at first, and it can cost a lot. At the time, I was working and fueled by cortisol. Heck I could do it! I had the money. Now I do travel 6 hours one way for a doc, but he is in network. I think though he is bored with me.
I will pm more details.
Research about adenomas and pituitary tumors because there is a hormone that controls the coloring of your skin and because of my memory loss I can't remember what it is called and where I read it. I just read it about thirty minutes ago too. There is also one that controls the growth hormone and that is what it said about adults getting too much of this hormone causing acromegaly. But the MRI with and without contrast will need to be done. That is how they have found an area on the right side of my pituitary gland sometimes I wake up screaming and swearing and hitting things and throwing things and it really scares my dogs. I have also been diagnosed with bi-polar depression. I have had the bouts of anger and aggression back since I was around the age of 13 and I told my Dr. About it and he told me I just needed to grow up. But I have also thought I might be oppressed from a demon. It is scary it makes you feel like you are losing your mind. I fear that it will happen out in public and I can't control it.
I'm so sorry for what you've been through. My husband wakes up angry sometimes too. You said they saw an area on your pituitary gland. Was it a tumor? Did you get it removed? Don't let them tell you that your tumor can't cause your anger and depression. You need treatment. Have you had blood work done? Did you have any hormones with excess or deficiency?
I can relate to what you've said with my husbands condition. It really is awful and uncontrollable. When did you get diagnosed?
Update: Robert went to a pituitary center at Washington university. They're screening him for cushings and hematachrosis as well as testing many hormones such as igf-1, testosterone, etc. He gets an MRI in two weeks. Hopefully we will get answers as he has deteriorated in just the last month. Now anytime he does anything physical, even just weed eating, he becomes so exhausted he can hardly rise from a chair. Any stress exhausts him for days as well and throws him into terrible mood swings. I really feel like he could have Cushings. They did the test where he stands up from a chair and he had great difficulty. I feel like that's a big warning sign for a 27 year old.
Does anyone have experience with low dose dexamethasone suppression tests? I'm very worried he will suppress even if he does have cushings. I hope they will do more testing regardless.
I have done all the dex tests. People vary from feeling nothing to great! To bouncing... So it cannot be predicted.... Sorry!
I suppressed on ALL of them even though I had it. In my group frankly most of us did! There is a paper out there that says it is a better test for source than exclusion and based on how the test works, it is... But docs don't think so they just say next! But he should not be ruled in or out based on one test.
Odd about the iron overload disease. I carry the gene. I have cousins with the active disease. My grandfather we think died of it (in retrospect had no idea but the symptoms fit) thankfully easy to treat. Shame they toss the blood instead of giving it to those with low iron!
Thats crazy about the hematachrosis. I was surprised she wanted to screen for it but better safe than sorry.
Im annoyed about the dex test. I wish she would have at least sent us home with a salivary test. Maybe we will get lucky and he won't suppress... I dont actually get the logic of the test though. Why is it cushies arent supposed to suppress?
If you think of it as a source test and the most common source is pituitary (which it is!) the ACTH suppresses ACTH. So basically you are looking to see if the small dose can suppress and if it does the theory is, I think, that the tumor can't be there or it is not a tumor it is ... Suppressable. Ergo not a problem. They do all sorts of suppression tests, low dose. Medium and high dose (high made me gain 20+lbs in a week joy) .
They theory is that a tumo will not suppress. Now I have a blasted nasty thing up there that is pumping out a high near 4000 (6-48). Mine still suppresses down to near nothing.
It can depend on how the person reacts to steroids as well. Like I had very mild tests (when my endo said mild I almost strangled him) but my symptoms were quite severe. Yet I know others that have quite mild symptoms and super duper high tests that are mind boggling. I don't think the docs really reconcile that they just play the numbers and totally ignore looking at what is really happening with the patient.