Pituitary problem, but NOT a tumor ?

[FoolsGold]

So what could be wrong with my pituitary gland.
The MRI is "entirely normal". Nothing wrong with the pituitary gland and no indication of a craniopharyngioma or anything else, yet all the anterior pituitary hormones seem to be screwed up:

Low LH which leads to low testosterone.

Leptin levels are ultra high. Why?

[rumpled]

Did you have an MRI with and without contrast? Was it using the dynamic technique? Was it a brain MRI or a pituitary MRI?

There are studies that show that you can have normal MRIs and still there can be small adenomas that create problems... they just do not show up.

I know - I had one. I had an MRI in 1992 that showed a 5-6mm pituitary adenoma on the left... I was very poorly advised by several large hospitals in New York City and a large well-known hospital in the midwest that, despite my lactation, that it was an "incidentaloma" and something to be ignored. My prolactin levels were not very high yet I was producing milk fully out of both breasts... when it came to my physical symptoms vs my tests, the docs chose to believe my tests!

I had many MRIs over the years and kept getting sicker, but was ignored... In 2003, I went to a pit center at another place in New York City. Their surgeon read my films and told me I had NO tumor... despite the radiology report saying I had a 2-4mm adenoma or cyst on the left. By this time they were hedging their bets.

I could not give up. I was even sicker and heavier. So in 2004, I went to LA and got an MRI that was dynamic. The report came back - a 2-3mm adenoma on the RIGHT. I about dropped my shorts. The lesion on the left was now just a shadow. The LA endo finally diagnosed me with Cushing's disease and I had surgery.

I did have 2 lesions there - and the one on the right is the prolactinoma that I was told was not possible (so there!!!)... the one on the left was the ACTH secreting corticotroph hyperplasia. It was a slime that was all over - and had they removed it a long time ago... I probably would have been so much better off...

So... imaging is something to do - but you need a good machine, good techniques and a good endo. But normal does not always mean it is normal. A pit endo will know that.

Sorry to babble - but with your LH off, it points to a pit "something" so you need to find an endo that is going to work with you. Have the rest of your pit hormones been tested? Are you going hypopit? Low testosterone can be caused by other things, too. Have you had your DHEA-S tested? Estrodiol?

I cannot respond about leptin... though, sorry, I am not familiar with it.

[FoolsGold]

MRI was of the head.
No contrast medium.
Two physicians without any images had suggested craniopharyngioma.

Note: An incidentaloma relates to the manner in which it was discovered and does not in any way imply that it should be ignored.

[rumpled]

Any reason why no contrast? Allergies?

I understand about the incidentaloma - but sadly, I am quoting the doctors who chose to ignore my symptoms and/or treat me symptomatically which was not effective. For instance, Cushing's gave me acne. I tried topical agents, then antibiotics finally progressing to accutane. And I still had acne. Others can tell similar stories with their blood pressure or diabetes - it will not respond to convential treatment as the cause is not usual. But once the Cushing's is treated, the other issues diminish or disappear.

There could be almost any type of lesion on the pit to cause it not to function correctly. Why are the docs suggesting craniopharyngioma? . www.pituitary.org has this on them:
http://pituitary.org/disorders/craniopharyngiomas.aspx
Sounds like it they normally are big so perhaps that is why no contrast?
Although the write up says the MRI should be with and without...

Again, something up there can be small but still cause a lot of problems. Size does not matter.

[FoolsGold]

Any reason why no contrast? Allergies?Nah. Not allergies. No insurance and a doc who thought I was malingering anyway! It took me a long time to get them to give me a 24hour UFC test when I thought I had Cushings and there was a battle for me to get an overnight Dexamethasone suppression test but once I successfully suppressed, they abandoned all endocrine inquiries.

[rumpled]

That is bull. They don't know what they are doing. I suppressed and my pathology proves I had cushing's. Dex tests are not for diagnosing but rather to show where the tumor is. You need more testing and to get to an expert. Get to another doctor. 1 UFC does not prove a thing. You need more as you can be cyclical. I sure was.

I do know exactly what you are going through... it took me 12 years to get diagnosed and surgery - and I am all the sicker for it. Hence my semi-angry tone when I talk about docs... I had to travel 3000 miles to get help but finally got it and I live right next to a major metropolitan area.

[FoolsGold]

That is bull. They don't know what they are doing. I suppressed and my pathology proves I had cushing's. Dex tests are not for diagnosing but rather to show where the tumor is. You need more testing and to get to an expert. Get to another doctor. 1 UFC does not prove a thing. You need more as you can be cyclical. I sure was.

I do know exactly what you are going through... it took me 12 years to get diagnosed and surgery - and I am all the sicker for it. Hence my semi-angry tone when I talk about docs... I had to travel 3000 miles to get help but finally got it and I live right next to a major metropolitan area.Well, I was going to University-of-Washington Physicians supposedly one of the better HMOs but I had to do battle just to get two UFC tests (even though 2 or3 is in the protocol). They refused to respond when I brought up the Dex Test and false results or the possibility of cyclical Cushings. I had first wanted a Dexamethasone suppression test in 1978, I got one in 2001. So if you are 'semi-angry' you can see why I am fully angry!

[rumpled]

Ok. I was just being polite and holding back. I am really fully angry too.
www.goodhormonehealth.com is where I eventually found help after too many Dr Buttheads... have to warn you his main love is research so he only sees patients once a week at night... and has one person working for him part time so that gets to be frustrating - but I credit him with saving my life so... while it took some time, better than being ignored or told wrong stuff.
Very few docs believe in cyclical cushings - one doc told me hormones don't cycle and he did not appreciate me telling him about periods. There are coming to be more as studies are coming up... but still, that is not helping us now.
I am sure we can trade "amusing" *gag* stories but would rather you feel better. What are your symptoms, besides being too long to list (just guessing here... are you cushie? Do you know about www.cushings-help.com? They have a list of helpful docs, too but most of us have to travel (as I did, 3000 miles as no one in NYC was helpful at all).

[FoolsGold]

Ok. I was just being polite and holding back. I am really fully angry too.
Very few docs believe in cyclical cushings
are you cushie? Do you know about www.cushings-help.com? They have a list of helpful docs, too but most of us have to travel (as I did, 3000 miles as no one in NYC was helpful at all). Its not just that they did not believe in cyclical cushings, they would not even respond to my suggestion of it. Thanks, I did discover cushings-help site but it seems I was dealing with one of the cushing's mimicers, hypogonadism, despite my history of purple striae as a teenager.

One curious and rather humorous aspect of their view of the endocrine system: They had never mentioned a 'Cushing's habitus' to me or noted it in my file. Only after I broached the issue of Cushings, did they suddenly start referring to my 'Cushing's habitus' and once I successfully suppressed on the dexamethasone suppression test, they abandoned their use of the term 'cushing's habitus' in relation to me.

[rumpled]

Again, just shows that your docs do not know what they are doing.
I, too, suppressed. I suppressed to an abnormally low level even. So my docs here said - hah - see, no Cushing's. But the LA doc looked at the same test and said - ah - pituitary source.
Suppression does not mean you do not have Cushing's. I have the pathology to prove it and so do countless others. But it made my battle years longer.
But even some mainstream places acknowlege it is not perfect...
http://www.endocrinology.med.ucla.edu/cushing's_syndrome.htm
"*Recent studies have found cases (up to 18%) of Cushing’s disease which were unusually sensitive to dexamethasone and suppressed on L-DST, making L-DST a test with poor sensitivity. A new hydrocortisone suppression test has been proposed (less potent than dexamethasone)."

I know... it is a struggle for health and it should not be.

[FoolsGold]

Again, just shows that your docs do not know what they are doing.
Recent studies have found cases (up to 18%) of Cushing’s disease which were unusually sensitive to dexamethasone and suppressed on L-DST, making L-DST a test with poor sensitivity. Yeah, they refused to discuss sensitivity and specificity of the Cushing's related Dex test and would not respond to requests for further testing.

Now the docs finally acknowledge I have some sort of pituitary problem but their recommendation that I see an endocrinologist is foolhardy when I have no health insurance left anymore and am much more likely to be looking for an ice floe than surgery on my pituitary gland!

[rumpled]

Do you have any tests that you can send to NIH? Maybe you can fit into one of their protocols and be treated for free.
http://www.clinicaltrials.gov/
Also look at www.pituitary.org and see if there are any studies there that are recruiting patients.
I am sorry you are in this position. I flunked every dex test, including the "gold standard" dex-crh test and my pathology showed Cushing's so I know that the tests are not perfect.
I also know, as I sit here, having lost a job I worked to hard to get, that if you don't get treated sooner rather than later, more damage is done and it is so much harder to recover. I am in my 40's but feel like I am 80.
Good luck to you.

[FoolsGold]

Do you have any tests that you can send to NIH?
No. The constant denial of tests I've endured really makes things just too difficult to establish.
I know I have a few hormones that have consistently tested low and a few high but the tests have been sporadic and poorly selected. Finally the doctors have stopped telling me I am malingering and they've finally stopped yammering at me about hypertension, but its just too late when I have no coverage at all and can't get any tests whatsoever.

[rumpled]

Well... since they *say* you are otherwise healthy...
ask to get into a clinical trial about leptin and send that work down to NIH...
http://www.clinicaltrials.gov/ct/show/NCT00140231?order=9

I am not sure if you are overweight - but that is the only criteria for this one:
http://www.clinicaltrials.gov/ct/show/NCT00392925?order=6
and this one
http://www.clinicaltrials.gov/ct/show/NCT00050791?order=4

I just went to the clinical trials site and typed in :"leptin". Email them about your history and see if you can be accepted or if not, maybe they can see if you can fit somewhere else.

They have free or low cost lodging there as well as you can ask for free tickets from some airlines for medical care.

[FoolsGold]

Thanks for your help, but I'm overage for each of those two studies and also was diagnosed a few months ago with diabetes that also excludes me.

I would think I would be of interest to a clinical study since my leptin levels were so amazingly high.

[dagaz]

I had a tumor on my pituitary and some tissue around it ... I was told by a NS that it had to be removed or I could go blind or worse die from it.

I had my pituitary removed yeah not just the tumor but the whole Dam* thing... It left me with diabetes insipidus, no sex hormones, etc. I'm on steroids, DDAVP, synthroid and things for my other med issues... One thing my FREEKIN NS didn't tell me ... by the way I was 23 years old that the removal of the pituitary leaves both men and women infertile.... I'm female, I was just lucky I had my daughter she was a year old at the time of all of this.

My NS threw out the tumor, he said it got mixed up with the tissue and pituitary??? how's that?

Also the majority of pituitary tumors are benign and dissapear when a woman approaches menopause and a man with age.. also I could have lived on bromocriptine...

I'm thankful for my daughter, we tried pergonal (fertility drugs to ripen eggs and hcg to release them) I got pregnant once after 10 rounds of this tx which only cost $2500 / session.. I misscarried my twins, probably because of the ) hormones.

If you have a adnoma or a tumor... you can live with treatment don't get it removed...

After removal, I got a Cerebral Spinal fluid leak, that's why the multiple brain surgeries and shunting after. It's not worth it, it has ruined my life don't please don't get it removed.... :(

[rumpled]

Dang!!!!
That was one ROTTON neurosurgeon... Truthfully, they can make you go blind and two types of pit tumor potentially can be deadly (Cushing's, Acromegaly) so some DO have to be removed but if this guy could not save anything for pathology then he is a ratfink and deserves to do surgery no more. I only had slime on mine on one side and a 3mm on the other and had pathology for both. I disagree with them disappearing though - where did you get that research?

By the way, if you get with a good, experienced surgeon, this does not happen. Sorry that it happened to you.

I know what you mean about panhypopit... I am only 2 hormones away right now and facing the possibilty as they want to do gamma knife and destroy my pit... not good. It is a lot to manage and somehow the artificial hormones don't make you feel the same as the real ones.

[dagaz]

Actually Rumpled I have My BSN I am Canadian and our studies included great detail on Pit tumors and adnoma's the endocrin system. The Majority do indeed disappear with the decrease in hormone production if indeed they are a prolactinoma or a hormone based tumor. However most endocrinologists and NS are in such a hurry to get them out of there they don't give time a chance or med's for that matter.

Sorry as you can tell I am a little frustrated with the He!! that I have been put through. In Canada your hands are tied there are no chances of charging a DR. with malpractice or launching a law suit against one because they are so well protected.

As for the pathology I was never given a clear answer what happened, I was told it was lost then confused with the actual pituitary...

What I don't understand is my last craniofacial surgery the NS said my "pituitary was visible... So what was that in the sella floor in it's place? another tumor?

They have packed so much fat and muscle into the space it could have altered their view don't you think?

Just thought I would run that by you....

[rumpled]

Can you quote some articles that support that the tumors disappear?

I was only able to find a study on prolactinomas after menopause:
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2265.2005.02364.x This study shows that 80% had shrinkage of their tumor.

That tumor happens to be one that can be controlled, often effectively, with medications. Some people do need to have surgery if the tumor is large.

However, I still beg to differ with something like Cushing's or Acromegaly disappering as those conditions persist past menopause. They are both hormone based tumors. I was not able to find a study even though I did look.

It is a shame the doctor cannot be charged but at least there is a board that could (should) be notified?

As for your MRI, the pituitary is located in the sella turcia. Abnormalities on the sella floor are not always tumors but can be indicative of a tumor on the pituitary itself. And as you have indicated, since you have had surgery, that changed things as scar tissue forms so you really need someone who is experienced to read your films. The fat is absorbed once you are healed. Have you considered sending your films (yourself) for another opinion to, say, Univ. of Toronto, Mount Sinai Hospital in Toronto for a second opinion on your case?

[FoolsGold]

and no indication of a craniopharyngioma ...By this I mean: No indication on the MRI of an craniopharyngioma. There are clinical indications galore but the MRI has been deemed "perfectly normal".

[rumpled]

By this I mean: No indication on the MRI of an craniopharyngioma. There are clinical indications galore but the MRI has been deemed "perfectly normal".

I just sent my "normal" films off to three surgeons for second opinions. So far, the radiologists have always been wrong for me so it would be good to get some additional opinions by surgeons. They see what radiologist does not. Right now my films say normal but I am having vision and hearing issues so I am inclined not to agree with the assessment. An endo should know some surgeons who will take a look for little or no cost.

I know it is hard to fight sometimes - it took me over a decade to get help - but you have to do it to get help. I wish I had done this sooner.

[FoolsGold]

I just sent my "normal" films off for second opinions. I know it is hard to fight sometimes - it took me over a decade to get help - but you have to do it to get help. I wish I had done this sooner.It took me far more than a decade to get even some of the tests that I wanted. The trouble is that as far as an MRI goes, the 'perfectly normal' description was confirmed by one of the top Neuroradiology guys at Anderson in Texas. So I'm left with clinical indications and statements by two doctors, but no confirming radiology at all and one set of non-contrast films that clearly is 'normal'.

[FoolsGold]

So what could be wrong with my pituitary gland.
The MRI is "entirely normal". Nothing wrong with the pituitary gland and no indication of a craniopharyngioma or anything else, yet all the anterior pituitary hormones seem to be screwed up: Low LH which leads to low testosterone. Leptin levels are ultra high. Why?Still not much of an answer, but since I'm without insurance and rather old now, I've pretty much given up on doctors. Only went to one recently after a week of gout pain that was such an unusual presentation for me that I thought I had snapped a bone instead of having gout!
(Note: Ofcourse despite my history of cat bites, there was no testing for exposure to P. multicida which is probably the real cause of the gout.)

[rumpled]

Ah yes... ye ol' 30 second appointments so the doc looks but does not think... I know them well... Why go an extra step... all hooves are horses - no zebras exist.

My husband said I need to wear black stripes to all appointments. LOL...

[Judy4]

I did not read all of this thread, most of the first page and then the last postings.
Here is a doctor that will help you if there is a problem. He will give you lots of time , is a wonderful caring doctor. He helped me so much when i had to flky from Georgia to first get diagnosed. I moved back to LA 3 years ago and started volunteering at his evening clinic this past summer.
He is Dr Theodore C.Friedman and has a website where you can make apts and has his phone #. goodhormonehealth.com He does not take insurance for the visits, but will give you a slip for 50 % for lab work. He is in Los Angeles Ca
judy