Pituitary tumor and fatigue

[crwstar]

Hi everyone - I am curious if any of you have also been diagnosed with chronic fatigue? Pre surgery did you find that fatigue was one of your symptoms. And if you were active did you find that it took longer to recover and get back to normal. What should I be asking my endocrinologist to focus on in relationship to this? adrenals?

I have general fatigue that is exacerbated by activity. All my symptoms spike with activity and I'm wanting to hear what your experience was and what was done.

Thanks for you help.

[crwstar]

This has also been suggested to me. In my early 20's I had episodes where I literally could not stay awake. I'd be driving down the road and have to pull over. That is definitely something to consider.

[LivingInHope]

I have not been diagnosed with chronic fatigue, but am often tired and have low energy levels.

[crwstar]

I've had blood work done - I'll have to take a look and see if I had the suppression test done. The most thorough testing I had done was more than a year ago with the first endo I saw. My last endo visit the doctor immediately told me he doesn't believe my pit tumor has anything to do with my symptoms so I didn't waste my time with futher testing thru his office. Nothing on me is growing as of now except my rib - I'll keep an eye out for any other changes. I was checking my hands etc but it sounds like I would really notice if that was happening. The rib does have me concerned. They keep telling me its constocondritis but its not just inflammed - its growing!!

I'm on the west coast, thanks of offering to refer me though ;-)  We have a pretty good pit specialist here I'm going to go back to. He regularly has pituitary conferences. I haven't been to one yet but am planning on attending the next one.

I keep hearing that its harder after surgery to find someone to follow up with. Hopefully, with more research this will become easier for all of us.

Will definitely keep you posted. You do the same. I don't know as much about the hormone levels but will support in what ever way I can.

[kathy06357]

Hi, at first I thought the tumor was back. The symptoms for Hypothyroidism remind me of how I felt with Acromegaly re: fatigue, weight gain, depression. But with Acromegaly my feet, my hands and my head grew. Everything was also swollen. My face changed shape, especially in the nose. A lot of stuff reversed, but my feet and head are bigger. I did read that rib growth may be a symptom. Have you had the supression test, when you drink glucose and the GH is suppossed to go <1? If you're on the East Coast, I can refer you to an excellent surgeon. Finding an excellent follow-up endo and one for the Hypo has been harder. I'm waiting for a copy of last week's thyroid blood tests to post here, and I have an appointment with a new Endo next week. From what I've heard and info on this website, my numbers indicate I need more Levoxyl. My patience is thin with doctors at this point. Keep me posted on what you find out!

[crwstar]

I am sorry to hear the fatigue and easy exhaustion are back. It can and does change your life in a way unexpected!! I was reading your post about the Acromegaly - did you have any other symptoms. I keep shying away from that as a possibility cause my hands aren't big or growing but I do have a rib that seems to be growing bigger and I read that growth hormone has to do with bones......just makes me wonder, you know.

It is rather frustrating to know how many of us have to wait so many years to get a diagnosis. Are you thinking that you thyroid is causing the exhaustion this time or the pituitary tumor?

[kathy06357]

Hi, I had a macroadenoma that produced Growth Hormone and Prolactin. Fatigue and easy exhaustion were major symptoms. It took about 15 years for me to be diagnosed. All my symptoms were blamed on weight gain, which turned out to be a symptom of Acromegaly. Now I'm trying to get my underactive thyroid treated and the fatigue and easy exhaustion are back. Hate it!

[testdeprived]

YES!!! i have had all sorts of symptoms and both the neuro  surgeon and the neurologist said that my 2mm tumor was just an incidentals finding. i know theyre wrong but i dont knwo what im supposed to do now. i have an endocronologist appoitment in may 30th but thats not gonna help so why bother with.

[AGHDman1]

Thanks for clarifying. I hope that can be taken care of quickly.

[enzymelover]

  Sorry. I wasn't clear.  My son has been tested, and he is deficient in growth hormone, also TSH and ACTH, due to a pituitary cyst. They will not give him growth hormone as long as the cyst is still there, for fear of enlarging the cyst. This is standard procedure.
His lack of growth hormone is the most pressing issue now, for surgery, as his eyesight is good, and overall, he doesn't usually feel too bad.

[AGHDman1]

It sounds to me that at the very least you have a strong case for the need for him to be tested. Lack of stamina (often called reduced exercise tolerance-same general idea) is the hallmark symptom of growth hormone deficiency and your son's lack of growth at a time when he should be growing rapidly sounds suspicious. I think if he is found to be deficient you have a much better chance of getting growth hormone coverage through your insurer than I have had as there is a strong lobby for treating syndromes resulting in short stature in children.

[enzymelover]

  I believe much of my son's fatigue is due to lack of growth hormone, although it presents more as a severe lack of stamina, than daily fatigue. He is taking hydrocortisone for secondary adrenal insufficiency. His vertical growth stopped about three years ago. He just turned thirteen, but still looks nine. However, his weight rose quickly over the summer, and my skinny, malnourished-looking kid is now fat! I know growth hormone helps with fat metabolism. I wonder if this is the reason for the sudden weight gain?

[AGHDman1]

I hope I'm not sounding like a crusader (if you have read any of my other posts in other threads today) but I encourage any one who has severe fatigue like yours, which can not be explained by other pituitary hormone issues,to ask your endocrinologist to be tested for growth hormone deficiency. Fatigue and decreased exercise tolerance are the main initial complaints of this deficiency. I suffer from such terrible muscle fatigue that before I found out I had pituitary problems I actually underwent  testing for multiple sclerosis! Since no one in these threads has mentioned growth hormone as a possible cause for their fatigue, I assume no one else has undergone testing.

[enzymelover]

  You're welcome. Wish I knew more. I'm doin' great.

[crwstar]

Thanks enzymelover......I appreciate your feedback. Hope you are well.

[enzymelover]

Sorry. Other than the 8 am cortisol, I am not familiar with timing protocols. I would like to know more about this myself. I do know that cortisol should rise between 4 and 6pm, so this might be a good time to test.
I guess other pituitary hormones are released as the related glands signal for a needed boost (that whole negative feedback loop thing), but as far as I know, the timing is random, throughout the day. Supposedly, a larger amount of growth hormone is released late at night, but this can be affected by many things, such as abnormal sleeping patterns, or even sleeping with a light on.

I suppose these are good questions for the endo.

[crwstar]

I usually get up anywhere between 7 am and 9 am. Its funny but I have periods where I consistently get up around 7:30 or so and then I get up around 8:30 to 9 am. I don't like sleeping passed 8:30 which I recognize is a luxury for me right now to even say that.  I go to bed around 10 pm or so. Yesterday I simply couldn't stay awake around 1pm in the afternoon and its not like I'm doing anything right now to exhaust myself ;-)

The endo I saw earlier this year did a cortisol test. Is there a specific or better time that should be considered when having this test? And what about other tests on your hormones - is there better timing that should be considered?

Thanks Enzymelover and anyone else who has some input ;-)

[enzymelover]

This was my son's experience also. If your adrenals aren't receiving enough ACTH from your pituitary because of the tumor, you are likely to feel extremely fatigued, especially at those times when you are more active, and your body is calling for more cortisol and adrenaline, which your adrenals won't be able to supply.

What time are you able to get up in the morning?