I was told I possibly have a pituitary microadenoma based on my MRI results, but the doctor wants to do the wait and see approach. The doctor said he was "100% sure this was not causing any symptoms." What are the symptoms a non-secreting, non-functioning pituitary microadenoma may cause?
The doctor told me everything looked fine, except my prolactin was slightly elevated at one point. The doctors stated it could just be an artifact of the imaging or a pituitary microadenoma on the front lobe. I have depression, anxiety, vision changes (especially at night), could go days without food, the worst headaches and fatigue imagineable, weakness, heart palps, diarhea (diarrhea), occasional nausea and I cannot tolerate the cold.
I was never even told a possible size, just that I need to have a follow-up MRI in a year. I had all these symptoms for over five years........long before I knew the word "pituitary", but the doctors say it's anxiety and depression.
Well, your symptoms could certainly be from adrenal and thyroid hormone changes.
My son was diagnosed with a macroadenoma\cyst. They're not sure which. It's 12x15mm.
Anything under 1 centimeter is called a micro adenoma.
My son's is non-secreting. His hormone loss includes TSH (thyroid stimulating hormone),
GH (growth hormone), and ACTH (adrenocorticotropic hormone). His prolactin is high for his age. He is on Levothyroxine and hydrocortisone, for thyroid and adrenal insufficiency,respectively.
He had all the symptoms, including occasional anxiety and depression. In my opinion, from all I have read, even a tiny adenoma can cause debilitating symptoms in some people. I don't know why doctors insist a small tumor can't be causing symptoms such as heart palpitations and fatigue. People have such a variety of personal medical histories affecting their health symptoms.
I think your doctor is 100% wrong. You don't feel "fine", even though your tests are!
Keep a daily record of all your symptoms, and the time of day they occur. Show it to your doctor. Ask for a trial of hydrocortisone (a low dose), and see if you feel any better, after your body adjusts to the drug.
You might ask about having imaging done directly on your adrenal glands, to rule out any adrenal lesions.
You may have to insist your doctor refer you to another endocrinologist, and have the adrenal stimulation test done.
Nutritionists can do adrenal function tests, and will prescribe adrenal support supplements if needed. My son's nutritionist is one of his best "doctors". He would be a lot sicker than he is, if not for her help.
I have tried Cytomel, Hydrocortisone and even Testosterone Injections with little to no help. I went to the Mayo Clinic and they did every test possible and came back saying it was anxiety and depression and had nothing to do with the "possible microadenoma".
What strikes me funny is that all along I complained of my right side feeling the worst and it just so happens that's where they "possible microadenoma" was found. All my TSH, Free T3 and Free T4 tests came back normal but were all almost at the bottom of the range, which to me would suggest a pituitary/hypothalmic axis problem....hence the pituitary microadenoma.
I can't get a doctor to operate or anything and really do not know where to go from here.
Sorry I forgot to ask you, but did your son have the macroadenoma\cyst removed?
Is it possible to have all the symptoms I have although the tests show the microadenoma is not secreting anything? I have read somewhere that even non-secreting, non-functioning tumors can have a whole list of symptoms and cause many problems.
Interesting... I've been meaning to reply and I too have been visiting Mayo Clinic and been on the wait and see approach. It's been 6 months since they discovered my 3x4 micro and I just had another MRI done and that showed no growth. However he the Internist only ordered a thyroid test and said It was normal "GOOD NEWS". So he asked me where do you want to go from here? I replied what about the growth hormone or the cortisol levels and he never answered me only to talk about possible anxiety or depression. I ended my visit with him to see an endo and a shrink in 2 days. This is depressing when the professionals don't think your symptoms exist and I stand by watching my body tire so easily and the weight just comes on reguardless of all the workingout I do. Ihave so many of these symptoms and the blood always comes back normal. I just ordered a book from the PNA(pituitary network association} so hopefully this will give me more info. PNA web site has a ton of info and Mayo Clinic is not one they recommend.
This is so intresting reading everyones posts. I too have these symptoms. I just thought it was because I work a lot so I'm exhausted. Well my prolactinoma was diagnoses 23 years ago, successfully treated with Parlodel for 1 year--then got endometriosis, had my left tube and ovary removed, I did get pregnant and had 2 sons, I had 3 other pregnancies though and lost them far along. I haven't thought much about the prolactinoma until recent, because I am gaining weight daily despite my working out and weight watchers, I am depressed, EXHAUSTED, get frequent infections and have had about 4 fractures in the last 9 years. When I put this all together I think the adenoma history needs to be relooked at. Any comments?
That is very interesting to hear...that the Mayo is not recommended and you and I have went through almost the same situation. Keep me updated if you don't mind.
Since my problems started in around 2003, the doctor's have tried me on Clonezapan, Ativan, Lorazepan, Seroquel, Zyprexa, Risperdal, Zoloft, Cymbalta, Welbutrin, Xanax, Paxil, Paxil CR, Cytomel, Hydrocortisone, Testosterone injections, Avelox, Prednisone, Remeron, Ambien, Ambien CR, Chloral Hydrate, Clomipramine, Buspirone, Lexapro, Lunesta, Ru-Tuss, Amoxicillin, Taurine, Flonase, Lamictal, Invega, Hydrocone, Lortab, Oxycodone, Morphine ER, Metopropal (high blood pressure), Amitryptiline, etc...
All these medicines and I can't tell I'm taking anything. I get the worst headaches and pain behind my eyes, just above my nose and sometimes in the temple area. From time to time it feels like my equilibreum is messed up and I have a hard time hearing. For all these years I've told the doctors my right eye almost feels as though it's lower than my left and it doesn't feel like it tracks correctly. Looking sideways...I feel almost like I'm slow and dumb. I was just so amazed that the doctors came back and said what they found was located on my right side, but they were "100% sure it wasn't causing my symptoms".
Has anyone ever heard of medications possibly not working on a person with a pituitary microadenoma or tumor? I had heard that the medications might not work, because a tumor would block or not process the medicine correctly through the A and B receptors. I have tried to tell the doctors that my anxiety and depression comes from the way I feel and they do not seem like the main factors in my case. To me it seems if that many anti-anxiety/anti-depressants don't work, then maybe there is an underlying cause of them.
i have pituitary microadenoma about 5 x 5 mm. Detected in 2002. No treatment. No testing except prolactin, which has been high from time to time and treated with bromocriptine.
I have thyroid failure of unknown cause. My TSH does go up when I am very hypo, but when FT3 and FT4 are within range TSH is normally very low. I have to keep reminding my endo that because every now and then he gets upset with the very low TSH...
I get MRI to monitor about every 2 years and visual field testing annually. But dr. says the pituitary microadenoma is too small to be significant. Haven't had cortisol testing except morning cortisol once in a blue moon. He refuses to test anything else and he's about hte best doc i've found (at least he doesn't brush me off), so I'll just work with him for now...
Have major problems with weird allergies - can't identify cause but get major itching and flushing.... Anyone else experience this?
I would get another opinion, from a neuro-endocrinologist.
I had an MRI that showed a 5-6mm adenoma on the left.
I saw a few specialists and they told me my tumor was non-secreting, an incidentaloma. They told me my symptoms were thyroid, not pituitary. I had a barely elevated prolactin, and I was tired. My TSH was bouncing all over the place.
Over the years, I progressively got sicker and sicker, but like a good patient, I ignored the pit tumor as I was told to do so by some reputable hospitals instead of trusting my gut.
In the end, the symptoms finally got too horrible to ignore. I was then told by a specialist that my tumor was 'too old" to be causing my issues and their surgeon read my latest films as "no tumor."
I persisted. I found another doctor and gosh oh golly gee... this doctor diagnosed me with Cushing's disease and the new scan found a second tumor on the right - a prolactinoma that was confirmed with pathology.
Alas, all this took so long that I am now disabled from the effect of the Cushing's.
Always get copies of everything, read it and question it all.
I have to say Rumpled is right, you must be your own advocate and go with your gut feeling. I believe some of the doctors use meds like a band-aid and not get at the root of a problem.
I am waiting for my report because I was getting conflicting info regarding which types of hormones they tested for. The only one I know was the prolactin which came back normal. The drs are going to change my blood pressure med. because they think possibly the Spironalactone which is what is in my blood pressure med has been known to cause lactation in men and possibly that is what is causing it in me. I did see the psychologist and he felt at this time some talk therapy would be good for me and to learn some relaxing technics. I take all this with a grain of salt.
My gut says something is wrong so I will keep plugging away at this. It might take a while but I will not give up and maybe in a year or 2 the blood levels will finally show abnormal.
I am going to push to have the doctor remove the microadenoma, as I didn't feel this way 5 years ago until I broke my nose. Maybe breaking my nose did something to the microadenoma or possibly caused it. All I know is my TSH, Free T3 and Free T4 always come back normal, but they are all at the bottom of the range, which suggests a pituitary problem.
Even if it is non-secreting/non-functioning, can't it still cause depression, anxiety, insomnia, headaches, vision problems, etc...?
Has anyone heard the medications might not work correctly because of the adenoma?
The doctors told me it's too small to remove, but at this point I think they should try to remove it as it can't get any worse. Oh, and I really don't believe a doctor who states there "100% sure it's not causing any of my symptoms". How would anyone know until they remove it or something. A broken finger could affect someone different than the next person...you just never know.
I too have been diagnosed with a small (3mm) pituitary microadenoma. My saga began about 3 years ago at age 42 when I started going through "manopause". Symptoms included hot flashes,severe anxiety attacks, sleep problems, sexual dysfunction and disabling fatigue among other symptoms. I went to a urologist who determined that I was suffering from hypogonadism of pituitary etiology. He put me on testosterone gel. This helped with some of the symptoms but my severe fatigue persisted. I had all of the easily done pituitary lab tests done and aside from my LH and testosterone they all came back normal. Perplexed I did alot of research and found a web site about adult growth hormone deficiency(AGHD). It seems all of my remaining symptoms fit the description perfectly. I finally sought out an endocrinologist to determine if I had this disorder but diagnosis turned out to be harder than I thought.The accepted "gold standard" test for AGHD is the insulin tolerance test where the patient is pumped full of insulin in an attempt to drop the blood sugar to what the body considers a dangerously low level. In response the normal pituitary should pump out lots of cortisol and growth hormone. Unfortunately, it turns out I am so insulin resistant that my blood sugar wouldn't drop low enough. After 2 attempts my doctor used an alternative test (arginine stimulation) which showed low growth hormone response. I guess this test is not as solid as the insulin test and my insurance company refuses to accept it as proof and will not cover growth hormone therapy.(I know this treatment helps because while I was fighting with the insurance company a drug company supplied me with free growth hormone and my symptoms improved dramatically!) I am now waiting on another test that adds growth hormone releasing factor to the arginine which is supposed to be more reliable. After all this, my question to this forum is, could this small nonfunctioning microadenoma be causing my symptoms or is it just an incidental finding? My insurance company sure doesn't think it is related!
Ya know, I read somewhere on a university website that growth hormone is normally the first pituitary hormone to be affected by a pituitary lesion of any kind. I shall try to find this info again.
Even if your microadenoma is considered incidental, you could still be suffering from growth hormone deficiency. Keep pushing for tests. Does your insurance co. have other allowed tests for treatment consideration?
The policy is quite vague as to what they will and won't accept as proof of AGHD, possibly because it was last updated in 2006 and this is such a new area of medical knowledge. I'm seeing my endocrinologist on Monday. I'll have to see if they can look into this for me.
i have the same thing the neurologist and neurosurgeon said its not causing symptoms and they wouldnt remopve it, even though from hat ive researched its causing a lot. i have weakness, poor eyesight, and a whole lot of other symptoms.
I had a few MRI's showing micro adenoma back in early 90's.
First endocrinologist thought it was an FSH producing one.
Sent to neuro-opthalmologist...vision fine.
But his notes stated possible micro adenoma cause of pre-mature ovarian failure. Was supposed to see neuro-surgeon for consult...but I DIDNT.
Sure wish I had, when it was easier to see. (prob cause I was on HRT)
Down the road a few radiologists tried to downplay it..saying not sure, not evident on today's scan. And the rest followed.
I am 64 and get migraines every month...now, if it were stress...dont you think I would get them all the time?
Its SO evident...its the pituitary STILL trying to send signals...still raising FSH levels.
One dr. told me...even though these adenomas may be small...they CAN produce high amts of hormones (thus...migraines, like in my case)
My neuro has been of NO help and I know he disbelieves it exists.
I could wear a charm bracelet of all the endocrinologists I have seen.
But remember....they mostly treat diabetes and thyroid.
Do they know anything about the pituitary?
Find one that specializes in disease of the pituitary.
I am onto a new neuro-endocrinologist team out here in Rochester.
I hope all this can be put behind me and I get my life back with no more montly migraines. No more living in fear of the next one.
LISTEN TO YOUR GUT FEELING. ( and to think...I almost bought their noted sales pitch.....ITS JUST NERVES)
You know you body BETTER than any dr. ever will.
I had apparently a microadenoma of the pituitary that was likely a prolactinoma (disappeared years later). I had a high prolactin level once. But with later testing, nothing pointed to a functioning adenoma and the thing shrunk. Mine I don't believe is a typical case.
Finding a neuroendocrinologist who can follow you for this with appropriate tests would be a big plus. The endocrine specialist need to find out with hormonal testing if your lesion is functioning (emitting extra hormones) or non-functioning (not emitting any pituitary hormones). Your lesion is still pretty small, which is a good thing.
Feel free to start your own post and ask questions. Rumpled, the moderator here, has her own experience with microadenomas and is typically very reliable in responding to posts on this forum.
I would take the current tests you have and your MRI and report (always get copies) and move on to a pituitary center. That way a neuro-endo can evaluate you. It does pay to do a lot of research ahead of time so you know if you get a good one so you know if you can stay or move on.
Lesions (which means any type of thingy) on the stalk may compromise the auto-immune system. You say you have issues but not what type.
Sadly, I know from a few of my friends that their fertility docs did not do them any favors but then again, I know so many docs in general kinda mess up too - I had to see bunches and between doc silliness, lab error, etc etc it can take forever to get diagnosed - it took me over 12 years and I know people it took 30! Hence I always advise people to get copies of testing, and read up.
If you have any questions - please ask. As well there are some resources in the health pages and some of those have doc lists.
In October I was on my way to work and felt fine. I went to get out of the van and couldn't walk like my brain forgot how. I felt unbalanced like something was off. Went in to work called my Dr.'s office had an appointment 2hrs later. Dr. thought it was a stroke sent me to ER did a ct scan, chest xray, and a whole bunch of bloodwork spent the night Neurologist came in the next morning said he didn't think it was a stroke lets do an MRI. I did the MRI came back to my room nurse came in said everything was normal I could go home. Put me on Topamax for migraines told me I had a complicated migraine take the Topamax everyday and Imitrex for migraine pain. The next day the Dr. from the hospital calls me and tells me I have a 4mm mass on my pituitary gland go see an endocrinologist and neurologist. So I see the neurologist first he ups my Topamax which I found out is an Anti-seizure medication with tons of symptoms which I was expeirancing & the Dr. just brushed them off & told me to increase my meds so then I called my primary & told her what the Neurologist said and she said to try it. Then I went to the Endocrinologist that told me I have a 4mm pituitary adenoma or an Incedentaladenoma and that they don't produce symptoms & everything I was expierencing was from the Topamax but she wouldn't change my meds. So then I went to a new Neurologist & he put me on Amitriptyline 20mg at bedtime I'm still getting 4-5 migraines a week I have talked to Neurologist about the migraines he says it's normal the first few weeks just give it time. The endocrinologist tested me for cortisol (Normal) TSH (HIGH) I'm hypothyroidism have been for 3 years now. prolactin (normal) and a bunch of other blood tests everything comes back normal. I can't work now I have 3 kids to take care of. My youngest is 8 months old & I won;t carry him because I'm scared my arms will go numb & I'll drop him I don't drive anymore I just feel like I have no life. I'm tired all the time, I'm always mad about something, I HATE my husband all the time, my kids get on my nerves and I don't know what to do. Before that day in October I was normal I don't know what happened to me & now my memory ***** & I can't keep up with a conversation because I forget what we were talking about & that's not who I am. I don't know what to do is all this normal??
First - find another endo - that one clearly has never effectively treated a pituitary patient.
Migraines are pretty common with pituitary. Yeah - dopamax I mean topamax has a lot of side effects... I take it myself. Taper up slowly and see how you do with it and if the side effects are bad - there are others in the same class that may help. They all have side effects it is just a matter of finding what works with the least effects for you.
I got the whole *incidentaloma* thing too - but if that is all the testing they did (and did they do it at 8am fasting?) without doing all the loops and complete testing - ONCE? it is not enough... garbage. BTW - TSH is a pituitary test so they either need to do more thyroid or pituitary testing - something is off. And if you do cortisol you have to do ACTH.
So, find a pituitary center and a decent doc. Some are still duds so it pays to know what is up - like time of testing etc - it can hold up diagnosis to get lab error and all and Doc error so you have to know if you have a good one or an endodud.
The health pages should be helpful. No, it is not normal except for us pit patients.
Hey you guys, Wow! You all describe my husband perfectly. He has been suffering with debilitating symptoms (extreme fatigue, anxiety, headaches, etc.) for YEARS and just found out that he HAD a tumor on pituitary gland that actually exploded/imploded (not sure technical term here) Tumor is gone but symptoms remain. His doctor seems to be on it -but at this point we are only on mega doses of testosterone and STILL experiencing same symptoms. (extreme fatigue, headaches, etc.) Doctor is talking sleep apnea.. (married 30+ years -sure he snores -but still not confident this is right) Has anyone else experienced a exploded/imploded (no longer there but damage to pituitary gland) situation?? Is this super rare?? or what. Thanks for all the intel/imput!
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