Acromegaly - Pituitary Tumor symptoms

[Karen3]

How likely is it that Acromegaly greatly affects my sex drive. Even after my surgery in 2005 and having gone through Radio Therapy, I still am sure this is affected - it is non excistent. I know that my growth hormone is still too high and will have another MRI next week.

[rumpled]

I was persistent too - but alas, my symptoms were taken as being a liar (now, my job was as compliance officer, so this just galled me to no end), I was told to exercise and yes, I was put on anti-depressants and anti-anxiety meds as well, that was the problem. I was also given diet meds, acne meds, vertigo meds, in short, they tried to treat me symptom by symptom and nothing worked. It was all my fault.

My fault.

I got sicker and sicker and it was just my thyroid.. now mind you, my pit tumor was found in 1992, but I did not manage to finally get treatment until 2004. I had to leave my local area and fly to the west coast and finally a doctor there said he could have diagnosed me in the waiting room (duh!).

The resulting damage has left me disabled. Joy. I am now panhypopit - not really from the pit surgery as the doc did a nice job but from having other diseased organs removed. But my pit is failing now and my eyes are too but they cannot see it on the MRI even though my ACTH is over 3000... so I am in a pickle. It bites.

[AllMessedUp75]

12 years to diagnosis... I don't think I would have made it. It's been bad enough that every doc that I've seen has said that none of my symptoms are related.

My six months to diagnosis was due to EXTREME persistence. But I was probably 'lucky' (though I don't think 'lucky is quite the word for it) that within a six month period, my life and body literally changed completely, with (no exaggeration) over 100 symptoms that suddenly appeared and left me feeling like I was on my death bed.

Just to mention a few - a severe migraine that wouldn't let up for over 3 months, gaining 80 pounds in 5 months, lack of a menstrual cycle for 4 months, numbness, tingling & pain throughout my entire body, extreme fatigue that left me sleeping for days at a time. AND this was just the beginning.

I made a weekly trip to my GP who just kept insisting I was stressed and depressed and even suggested bi-polar (I was never sure where that one came from). I was prescribed every migraine medication on the market, pain meds, anti-depressants, xanax, ativan, nothing relieved any of my symptoms (the ativan actually produced violent feelings). Finally, my GP actually told me not to come back -- there was nothing more they could do for me. This came without so much as a referral to any one else.

Before these symptoms appeared, I had been living very healthy, happy and successfully with none of these problems before in my life. I had no reason to be stressed or to be experiencing the severe anxiety attacks I had also started having, for apparently no reason.

These symptoms would get so severe, I also became a regular at the ER. Actually, several ER's since I thought I might get somewhere at a different hospital and there are several large hospitals in my area. Several CT scans and tons of lab work revealed nothing.

Once I began experiencing pain in my ovaries, after 4 missed periods, I made my annual appt. with my gyn., armed with all with a list of all of my symptoms, the reports from my previous appts with my GP and ER visits. This was enough to prompt my GYN to do some typical labs for hormones. Thankfully, my prolactin was slightly elevated (34) and she thankfully she took this seriously and ordered an MRI -- which finally picked up the tumor.

The first endo still didn't take anything seriously until I showed him 'before and after' pictures of me (which at this point, I had gained 100 pounds in less than 8 months). Until he seen the pictures, he was ready to send me on my way (something told me to take those pictures with me).

I've never seen a neuro-endo. Just several endo's (mainly specializing in diabetes) and a neuro-surgeon. As I mentioned during my previous post, this isn't even an option right now due to financial issues.

I realize that I need 'real' treatment and that regardless of what any doctor says, all of my symptoms are related to the tumor.

Unfortunately, at this point, I can simply pray and have faith that something will change in the near future that will permit me to receive the proper medical care.

Thanks for your support. I've read many of your posts and they've been very helpful. You're 12 year road to a diagnosis seems to have left you with much needed knowledge for the rest of us -- though I truly don't believe I would have lasted those 12 years. You must be an incredibly strong person!

Love, respect, hope & faith...

[rumpled]

I also find acupuncture to be very helpful.
I had a Cushing's and prolactinoma removed - but the Cushing's tumor grew back, adrenals removed and now I am adrenal insufficient and panhypopit.

The depression is a symptom, not an entity all of its own - if you were treated for all your hormones, you would not have to be on those meds at all.

I am not on them - I see my doc quarterly and get regular tweaks to my med - mainly as I am not stable yet and I am 3+ years post op BLA. Bites.

Are you seeing a neuro-endo? I actually drive 6 hours one way to get to my endo. I have a local doctor in case I have to be hospitalized locally, but it is the endo further away that manages my meds etc. as he is the smart one.

You are lucky with only 6 months to diagnosis! It took me over 12 years.

[AllMessedUp75]

Wow... this forum is awesome. I was diagnosed with non-functioning macro (1.5cm) in 2007. I have over 100 symptoms (that of course are not 'related' to the tumor) that all began within a six month period of being diagnosed.

One symptom was definitely the loss of my libido. I'm 34 now and since before I was married at 17, I had always been extremely happily active and easily satisfied.

For most of the last two years, my libido has pretty much disappeared. Most recently, it makes a minor appearance from time to time but normally lasts for less than 5 minutes (if I'm lucky) and is nearly (almost always) impossible to achieve 'satisfaction', upon any attempt of doing so.

Thankfully, I have a very understanding partner, in all of my medical issues, but most importantly, in this area.

I do try to make every attempt at some sort of intimacy as often as possible (even though this may  only be once every few months). Though the relentless pain, fatigue, weakness (amongst 100 other problems) does make this difficult.

However, I do find that when I can get my body somewhat stimulated in one way or another -- even if it's a tingle that lasts a second -- that my hormones do seem to respond in one way or another. Mostly positive, possibly leaving me with a few hours of feeling a bit better but sometimes negatively, leaving me feeling worse.

Like most of you who have similar complaints to my own, all of my hormones have always been in 'normal' range with the exception of prolactin being slightly (32 - 38) elevated from time to time.

Originally, I was put on the 'wait and see' list and was to be monitored every six months. Unfortunately, I lost my insurance over a year ago and haven't been monitored for the tumor or any hormones, since then.

My only treatment for the past year is your typical meds for pain, depression and anxiety (which of course, appeared shortly before my diagnoses but have 'nothing' to do with the tumor).

I hate the fact that I'm on the meds which are highly addictive but I'm also VERY thankful that I'm seeing a doctor who does take these symptoms seriously and is doing what he can to help me deal with them.

Without the meds, I honestly don't believe I would be sane today -- I hit such a depressed point and the anxiety was so intense, I don't even know if I would be here today.

I've tried a ton of natural and holistic treatments and supplements. The only thing that I can honestly say made any noticeable difference at all was acupuncture. Unfortunately, after I spent all of my savings on these methods and had to end the acupuncture, my symptoms all reappeared within a very short time.

Best wishes to all of you. I know these last few years have been almost unbearable at times for myself and even to those around me.

I feel your pain and heartache... physically, emotionally and psychologically.

Maybe someday the docs will take us more seriously. Maybe someday.

[enzymelover]

Any radiation to the pituitary is likely to cause gradual loss of pituitary function, unfortunately.  rumpled is right to suggest having all of your pituitary hormone levels checked again. You may need to start on additional hormone replacement.

Enzy

[rumpled]

After the radiotherapy, were your other pituitary hormones checked? It can happen that gradually after the radiation that the pituitary feels more effect and well, stops producing other hormones. LH and FSH may be among them and that would effect testosterone and estrodial and thus the libido.
Even so, when you look at the symptoms of high GH, low libido is listed.

Have you been monitored for the rest of your pituitary hormones as well? I am panhypopituitary so I know it is rather a pain...