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-   -   Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared (http://www.healthboards.com/boards/pituitary-disease/741738-low-hormone-levels-possible-pituitary-gland-tumor-need-some-info-kinda-scared.html)

Ryan8004 03-26-2010 11:42 PM

Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Hi folks, I am a 19 yrs old male and a college student who has always felt fatigued and slow ever since I can remember. I am 5'9, 200lbs 14-16% BF. I recently went to the doctor for my fatigue. My friends have always joked around with me about how I take so many naps during the day. Finally it has started to affect my school work, and this was the main determinate of goin to the Dr.

I went and talked to the Doc. and told her about my symptoms she told me at first it could just be my work load since I'm taking more hrs than normal. She wanted to run some blood tests though, so they drew some blood, and contacted me a week later. I went in today and talked to the Doc. again and she said that I had a low thyroid so Hypo (right?) it was like .88 or something like that. The thing she said was weird though was my TSH level which was .6

Now this is what scares me :( she said that I need to have a MRI of my head to see if there is a tumor on my pituitary gland. I've never had surgery before, and this just freaks me out to be honest.

My questions about my TSH and Hypo throid are as follows: What is the dangers of this surgery? What does this mean about my future in the military? What meds are the best to treat this problem? Now with saying all of this she said it may not be a tumor and my pituitary gland may be messing up. Which would be worse tumor or messing up in the gland?

Now onto other things since I got that off my chest, I've been a nervous wreck today with that. Since this has affected my testosterone and Growth Hormone why am I still pretty big musculer wise(at least I like to think so lol)? I also have symptomes of hair loss (will this ever come back with getting everything regulated?).Symptomes of Late puberty which makes me have little body hair, baby face (I still look 10 minus the receding hair line lol, I mean I still get carded going to the movies and I'm in college). With this late puberty thing is there a chance I will grow taller when I get my TSH and Thyroid under control? Will I lose some weight? Are my growth plates even still open? In talking about my height I havent grown since I was 13 or 14 I was 5'9 in the 7th grade :(.

I prolly sound like a cry baby right now I just have a lot of things goin through my head right now and want to talk to people that are going through the same thing. I would appreciate any responses or personal stories. Thank you all very much in advance!
-IC, Ryan

Aussieween 03-27-2010 01:14 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Hi Ryan,

I'm a newbie too, so can't actually offer you any valuable insight to what may or may not happen, just letting you know that I'm hearing you and I understand how scared you must be. Have you spoken to your parents or friends so that you can have their support? I have found that once you start communicating with your loved ones things seem to be a bit less stressful.

Take care

Irene:wave:

sparkie 03-27-2010 04:47 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
You mentioned testosterone and growth hormone...did the MD test these? Do you have the results to post? It would help if you could get a copy of your tests and post the results and lab ranges, then perhaps you could get more input. Did she do a cortisol? Did she suggest an ACTH stim test first? I would be surprised if your insurance would even approve a pituitary MRI first without having further hormone blood tests. In any event, when all these hormones, adrenal/pituitary, are out of whack they may point to a pituitary issue. I had a CAT scan of my adrenals first, but my MD did hmmmm and hawww whether to do a pituitary scan first or adrenal (my hormones tested low as well).

Ryan8004 03-27-2010 05:12 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
The Doc didn't really go into much detail about everything but I was takin to get more blood drawn for testing, and I have an MRI schedueled for this wed coming up. Everythings already been approved, with the cortisol they tested that today since I just got out of bed when I got there lol. I should have the results of a lot more blood work wed. I can post some of that stuff if it would help out? On the ACTH stim test I hope she doesn't run that I don't wanna fast, I like my eating. I will post my results on wed. I really like the doctor I have up here at the University hospital, which makes things a whole lot easier for me. I trust her and it's hard to find Doctors like that now an days. Thank you for you response!


Irene! Thank you also for your response!!! I did contact my mother first person I called lol, great woman!! My mother also has thyroid problems she's the one that told me I need to get it checked out. What's goin on with ?

Hope all is well with both of you!
-IC, Ryan

Island chick 03-28-2010 09:20 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Aloha Ryan,

This is my first post, have been reading forever, but untill now have not seen anyone else post with this condition. I have gone through exactly what you are dealing with, my MRI came back fine, and after a ton of bloodwork was diagnosed with hypo pituitary hypothyroidisim. I started med immed and will go back in 3 weeks for follow up bloodwork. This all started in Dec and was diagnosed by the middle of Jan. My doc was looking for any abnormalaties as well as a tumor on my pituitary as well. She said it is standard to rule that out at the begining, so take a deep breath and keep us posted. There really isn't a ton out there abouth this disease.

Aloha,
Liz

kw6 04-07-2010 10:49 PM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Ryan,
I am now dealing with the same problems as you. Everything went downhill about 4 months ago. I was in college in the best shape of my life and then all of a sudden it went to crap. One night I had a heart rate of over 300 bpm and was diagnosed with wolff Parkinson white syndrome. I had an emergency procedure which took care of the arrythmia. That left me pretty anxiouse and depressed becouse my heart was now acting really weird and I could not lift weights for a while. Things eventually got worst and all i could think was that their was a problem with my heart. All tests showed that everything was okay with my heart. I eventually began getting fatiqued. I body aches and somedays I fell like I'm 70. Most doctors blew me off and said I had anxiety. I finally found a good doctor and he told my it sounded like my pituitary. I had the test and yesterday found out my pituitaty hormones are way low and my testosterone levels are at the average of 55 yr old man. I feel lathargic almost every day. I ache, some days I can barely walk and my heart rate spikes with minimal excercise. I have also had many problems with my vision and severe dizzyness. The last 4 months of my life have been hell. I suffer everyday. Tomorrow I will have my mri. My doc tells me this isn't that hard to fix. I think I can easly go through with it after already having a procedure done on my heart. I just want to feel like I'm not dying. I'm glad to hear there are others going through some of my same problems. Hope everything works out.
Kevin

mommain 04-16-2010 07:56 PM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
I'm very new here as well and hope all of you get positive results soon!

I am 28, mother of two kids, and always been healthy! I just started having all the hypo symptoms as well as headaches/dizziness, and all kinds of things! My endo says to get my TSH level under control (it was 49 last week) before doing an MRI or any other head tests!!! I am not very patient, but getting closer to normal range every day now.......

javelina 04-17-2010 07:30 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Ryan, you will need to follow your health care closely and ask for copies of all the labs you have had (and you can post the results here for input). Low TSH and low thyroid hormones can point to pituitary dysfunction. Depending on what part of the pituitary is affected other hormones can be out of whack too (but some can be normal). You need to have all of them tested and the MRI is a very good idea to check for an adenoma. But don't go off thinking you will be having brain surgery at this point, in the first place not everyone who has hypopituitarism has an adenoma and there can be other reasons for low pituitary function or for low TSH with low thyroid hormones. Also not all adenoma are treated surgically, some are treated with drugs. Try to take this one step at a time and not project scary things like brain surgery when you are not close to getting that diagnosis at this point. :)

Be sure to get the right thyroid testing done as well as check important vitamin and mineral levels. Ask for free T3, free T4, and thyroid antibodies; TPO and TG. Get a ferritin level as well as vitamin D and B12.

KardiaMou 04-29-2010 05:43 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Make sure you get more testing. You may want to ask your doctor to do a test called an IGF-1as well as other tests and an MRI is a definite.. If your growth hormone levels are not normal, it may indicate a pituitary tumor that is NORMALLY found in middle-aged men. However, as a 24 yo female, I was found to have a pituitary tumor that stained for excess growth hormone, causing a rare condition called acromegaly. It also stain for prolactin. The level of fatigue I have due to this, most people cant understand...it is life-altering.

If in fact you have a pituitary tumor that increases your IGF-1 levels...run...not walk to the BEST neurosurgeon you can find. Acromegally is not just a tumor you remove and life goes back to normal. It is a LONG process. It is treated as aggressively as a cancer, due to the side effects, lasting/associated health problems, and the increased mortality rate not due to the tumor itself, but the medical conditions/complications it creates.

I am not a doctor and dont know what you have, I am simply going off your information, and my background with a pituitary tumor that was found due to increased growth hormone levels.

One more thought, not all neurosurgeons specialize in this surgery. Originally, my insurance sent me to a doctor who had NEVER done one of these particular surgeries, and had never seen a patient with what I had. He seriously look at me and said, "what are you doing here"? Thank God, my mother is a physician who was with me, called the insurance company and threatened them with a lawsuit if they didnt allow me to go under the care of a doctor who specialized in the specific type of tumor I have. They did :)

I dont know where you live, but I was beyond lucky that one of the worlds top doctors for this particular type of tumor was 10 minutes from my home. He happend to train under the doctor who pioneed this surgery in Canada. The surgeon who did my surgy is doctor [B]Alain De Lotbiniere, you can find him under a Google search in West Harrison NY. [/B]He gets a lot of cases from doctors who did this surgery without expertise, and he has to go in and fix the mess. If you live anywhere within a reasonable distace, I cant recommend this doctor enough. I have seen people fly in, just to consult with him. He is a Frenchmen with a cool demeanor, but ignore that...it is his hands and his top-notch skills you want, if needed. He is listed as one of America's top doctors...and he sooo is.

I hope this has helped in a small way. Dont let fear keep you from getting medical care and the proper tests. If it is this type of tumor, they tend to be fast growing. Good luck!

HeyLtsSusieQ 05-12-2010 03:37 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
You definitely need to get with a good Endocrine doctor. I also have been suffering with the fatigue, weight gain, and a few other things for almost 3 years. Took them that long to put all together to find out that I have a 8mm tumor on my pituitary. My thyroid level was non existant and I have a very low cortisol level. I am now taking thyroid meds, tumor meds to shrink, and a serious dose of vitamin d once a week. 50,000 units to be exact. I hope it starts to work soon cause my thyroid meds have been being upped every 6-8 weeks since last September. My thoughts and prayers are with you.

Jul2 01-26-2011 05:22 PM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
[QUOTE=Ryan8004;4213009]Hi folks, I am a 19 yrs old male and a college student who has always felt fatigued and slow ever since I can remember. I am 5'9, 200lbs 14-16% BF. I recently went to the doctor for my fatigue. My friends have always joked around with me about how I take so many naps during the day. Finally it has started to affect my school work, and this was the main determinate of goin to the Dr.

I went and talked to the Doc. and told her about my symptoms she told me at first it could just be my work load since I'm taking more hrs than normal. She wanted to run some blood tests though, so they drew some blood, and contacted me a week later. I went in today and talked to the Doc. again and she said that I had a low thyroid so Hypo (right?) it was like .88 or something like that. The thing she said was weird though was my TSH level which was .6

Now this is what scares me :( she said that I need to have a MRI of my head to see if there is a tumor on my pituitary gland. I've never had surgery before, and this just freaks me out to be honest.

My questions about my TSH and Hypo throid are as follows: What is the dangers of this surgery? What does this mean about my future in the military? What meds are the best to treat this problem? Now with saying all of this she said it may not be a tumor and my pituitary gland may be messing up. Which would be worse tumor or messing up in the gland?

Now onto other things since I got that off my chest, I've been a nervous wreck today with that. Since this has affected my testosterone and Growth Hormone why am I still pretty big musculer wise(at least I like to think so lol)? I also have symptomes of hair loss (will this ever come back with getting everything regulated?).Symptomes of Late puberty which makes me have little body hair, baby face (I still look 10 minus the receding hair line lol, I mean I still get carded going to the movies and I'm in college). With this late puberty thing is there a chance I will grow taller when I get my TSH and Thyroid under control? Will I lose some weight? Are my growth plates even still open? In talking about my height I havent grown since I was 13 or 14 I was 5'9 in the 7th grade :(.

I prolly sound like a cry baby right now I just have a lot of things goin through my head right now and want to talk to people that are going through the same thing. I would appreciate any responses or personal stories. Thank you all very much in advance!
-IC, Ryan[/QUOTE]


Anyone who has their symptoms diagnosed and taken care of early is lucky. I wasn't. About one in five people have a pituitary tumour. In some of those people the tumours grow and cause massive massive problems. Weight gain is one of them and yes, in most cases when those tumours are taken care of, the weight will come off fairly quickly and you won't even have to "try" to lose it. Isn't that nice?

This is because people with growing tumours tend to sleep far too much. It's not that they eat more than most people; it's just that they eat and simply go to sleep right afterward. Many have virtually no energy at all, so it's almost impossible to exercise. All they can think about is sleep. For some reason their body "needs" this sleep and they can't fight it off no matter how hard they try.

Yes, tumours are very dangerous to remove, but if they are removed when they are under 1cm in size, the outcome is better. I have known two people myself who had theirs removed with no problem. Just make sure the surgeon has done a couple of hundred of those operations before working on you, and that a student won't be doing it instead.

If you wait until the tumour gets bigger than 1cm it may be very difficult to remove and may require radiation which will destroy many of your normal brain cells as well as the diseased cells. It may also recur.

Your hair loss could be as a result of the gadolinium contrast used when you are under the MRI's. It could also be the result of your thyroid problems. Once the tumour and thyroid problems are taken care of, the hair growth should resume.

Since the continued growth of the tumour can totally destroy your sexual desires, this isn't good either. So hopefully you will be put on a good medicine that will destroy the tumour which may help you avoid an operation. Generally the pills are the best bet, although you have to be careful they aren't too strong because they can make your heart beat pretty fast and can be hard on the heart. I think you are in great hands.

pursable 03-30-2011 06:22 PM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
Wanted to throw my two cents in on this because I have been dealing with a Pituitary adenoma for about three years now. The doctors told me it has been growing in my head for up to 15 years wich I found to be a crazy statement. I first noticed my eye site starting to go bad at around 41 and my weight going up so fast I couldnt control it, my hair was disapearing I went to several eye doctors who fitted me with glasses and they did nothing, but they didnt listen to me and thought I was crazy. Finally I called a doctor freind and he rushed me in for an MRI the next day got the call It was huge 6cm the biggest they have seen it was pinching off my opticle nerves and my main artery to my brain. I was refered to a Endo doctor and a brain surgeon they sceduled an opperation for a week away I was freekin out. The next day I get a call from the surgeon the opperation was off, the Endo doctor said it could be treated with meds and they could shrink it. Four MRIs later they have shrunk it by 75% my eye site is back no more headaches alot is better I am on hormone replacement because my testo. was so low. I have to say the doctors are not the greatest to work with they just dont seem to know exactly what to do I feel like a gineapig sometimes. Do your research and alot of it. You dont have to assume you need a opperation or radiation to remove these anymore the meds are incredible and do work. I have been reading here alot and this is my first post of many I hope.

Jul2 04-01-2011 01:21 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
People with these problems have a lot of difficulties, and serious ones too, made even worse by neglect from doctors who have no idea what's going on. Even when they do find out, the great percentage of doctors are so uninformed about the diseases that can be caused by this that they refuse to believe their extremely tortured patients and this drives the patients nearly insane.

I had developed so many serious sicknesses that I was afraid to tell the doctor about all of them (and am still afraid to this day) because they happen so fast that it's embarrassing! Doctors clearly don't like patients who are so sick and will quickly write on their records that they are hypochondriacs. They will also hope that these patients leave and go to some other doctor. You can see it in their faces.

This disease is dreadful once the tumour grows. My tumour had already caused such serious problems by the time it was only 3mm that it stopped my menstruation totally, and even then it was totally neglected for years. By the time it had become a full blown adenoma and I had developed cancer and even more serious things, I got treatment.

A lot of people with pituitary tumours will also have mega skin problems of all shapes, colours, shapes, and sizes, which are about 99% likely to also be "totally disregarded" by doctors. Few if any of these patients will ever be sent to specialists, but instead these skin problems will be either ignored or simply sprayed off by the dozens.

I had also developed hair loss and really serious heart problems both of which were also totally disregarded even with proof on an EKG. I have a lot of soft tumours as well.

But dostinex surprisingly cleared up the heart problems that had become increasingly worse and scary for years, (even though many sites say this drug actually makes them worse). Unfortunately it also seemed to raise my thyroid level but a 1/2 drop of iodine every day for a week or two seemed to stop the hair loss. (My own treatment).

Today I believe the heart problems were "caused" by the very high prolactin level which was immediately reduced with the headaches when I started the dostinex. In fact, both headaches and heart problems ceased entirely (although I suspect damage is still there that I can't feel). It was a total miracle!

It makes me think that of all the heart problems in the world, and with one in five people having pituitary tumours, probably a LOT of people dying from heart attacks have probably really died from the pituitary tumour causing them that could've been easily treated from the start, but doctors simply didn't check for that.

I don't care what anyone says. As far as I'm concerned, a growing pituitary tumour is one of the worst diseases, both physically and mentally, that people can get -- mentally because of the anguish that so many of these patients go through to even get doctors to believe them in the first place, and physical because they often won't be treated even with so many serious physical problems, until they've developed extremely serious problems.

Jul2 04-01-2011 01:32 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
[QUOTE=pursable;4719498]Wanted to throw my two cents in on this because I have been dealing with a Pituitary adenoma for about three years now. The doctors told me it has been growing in my head for up to 15 years wich I found to be a crazy statement. I first noticed my eye site starting to go bad at around 41 and my weight going up so fast I couldnt control it, my hair was disapearing I went to several eye doctors who fitted me with glasses and they did nothing, but they didnt listen to me and thought I was crazy. Finally I called a doctor freind and he rushed me in for an MRI the next day got the call It was huge 6cm the biggest they have seen it was pinching off my opticle nerves and my main artery to my brain. I was refered to a Endo doctor and a brain surgeon they sceduled an opperation for a week away I was freekin out. The next day I get a call from the surgeon the opperation was off, the Endo doctor said it could be treated with meds and they could shrink it. Four MRIs later they have shrunk it by 75% my eye site is back no more headaches alot is better I am on hormone replacement because my testo. was so low. I have to say the doctors are not the greatest to work with they just dont seem to know exactly what to do I feel like a gineapig sometimes. Do your research and alot of it. You dont have to assume you need a opperation or radiation to remove these anymore the meds are incredible and do work. I have been reading here alot and this is my first post of many I hope.[/QUOTE]


You've got a great brain surgeon. Dostinex works absolute miracles and brain surgery is really dangerous so you should feel relieved.

Jul2 04-01-2011 01:39 AM

Re: Low hormone levels. Possible pituitary gland tumor need some info..Kinda scared
 
[QUOTE=HBJul2;4670491]
Generally the pills are the best bet, although you have to be careful they aren't too strong because they can make your heart beat pretty fast and can be hard on the heart. I think you are in great hands.[/QUOTE]

I'm responding to my own earlier post because I want this to be noticed. Yes, those heart warnings are on the Dostinex, but for me anyway, it "REVERSED" very bad heart problems.


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