pituitary tumors

[ill13632]

Hi!  I had a prolactin level of about 30 twice the max of 15 and the endocrinologist though I might have a pituitary tumor?  can you diagnose based on blood test for prolactin only?  
the regular MRIs with contrast I had were normal though but there is a special pituitary MRI
I was put on cabergoline for one month, is that a good medication?  it seems to be a fungus of some kind and causes heart problems in some doses

[rumpled]

Re heredity - when I ask ( I had a prolactinoma and Cushing's, the docs always say no, but at least one says he things there must be at least some component but in knowing many people, only a few families I know have a pit or endocrine tumor run in it - are they evaluating you for MEN?).

Oddly, your IGF-1 seems low which is more consistent with AGHD - given the range you gave, and the prolactin, I don't know the ranges in the UK but that is high in the US (LOL). Did they check GH?

It can take a stim test to really get to the bottom of growth hormone as it is a pulsitile hormone.

There are links in the health pages that can help you as well. Check out the lower right column.

[Twiglet73]

Hi all, been so helpful to read all of your posts. I am currently in investigation due to Acromegaly in my family (2 different members on same side).. Have been seen at St Barts London my Prolactin is 157 and my IGF-1 was 87ng/ml when at 38 it should be between (109-284). I am also waiting to see a geneticist at Great Ormond Street. Am so worried for my 3 children too if it is a genetic thing. Is 157 Prolactin high? Any help and advice would be hugely appreciated, thank you xxx

[ill13632]

thanks very much.  I hope you get many opinions and have a good neurosurgeon for consultation also

[rumpled]

I went to a cardiologist and got a work up - have your PCP run an EKG and if they find anything abnormal, you can get sent over. Mine was caused not by the meds but by the cortisol imbalances.

Your doc has to run more testing to get at the bottom of the symptoms - it could be the prolactin is a red herring so did you get a copy of all the tests to see if they checked all the pituitary hormones or did they go for the common and just stop there? Plus you need to go on to a neuro-endo anyway for full testing (which is more helpful than an MRI) so you have an idea of what is going on. Health pages (nicely hidden lower right) has info and some of the pages have doc lists.

[ill13632]

that is terrible to have 2 tumors.  I need to get another special thin slice MRI
I got the copy of the test and before prolactin wasn't as high as 30.  oh I don't know what is causing my nausea and sleep apnea/exhaustion

[ill13632]

I noticed some chest pain or a little spasm, don't know if that's from caber but that's pretty serious if it can damage your valves

[horselip]

From what I've read about that, it all has to do with the dose. I read that Parkinson's Patients take meds of a very similar class, but in much, much higher doses. That's when there is more risk to the heart valves. It's good to know about and keep an eye on the heart, just case, tho. The lower doses that pit pats take are not as much of a risk.
Horselip

[ill13632]

cabergoline can cause heart valve problems and some regurgitation- I'm not sure how high the risk is for 0.5mg/week.  the FDA pulled a similar prolactinoma drug for this reason
it is an ergot or fungus derivative, wikipedia says it is the first line treatmend for tumors

[rumpled]

Do you get copies of your tests? Prolactin can be increased by other hormones - not just thyroid - and it could be another hormonal issue - not just one issue. For instance, I had two separate tumors a prolactinoma and Cushing's so they kept dismissing the symptoms of the others and basically dismissing the whole situation. So it can be complex.

I would keep a diary of not only what you eat, but symptoms. I would take someone with you to vouch for this (in the US anyway we patients are, like Dr House says, not reliable at all), and any pictures to show changes in weight and your face or whatever if you have them and any records you have. Be persistent.

Pituitary disorders are difficult and take time - so while you need to have a healthy diet (not sure if you are having too few calories which makes the body go into starvation mode - then you cannot lose?) and moderate activity (I would not go overboard in some cases damage can be done in the case of some lesions). There is information in the health pages on the far right at the very bottom that may be helpful as well. Do let us know how it goes - a new thread may help too!

[seib]

In addition to my first posting, I forgot to mention - I seem to have a lower throat issue. This started 3 months ago, It was worse because it was sore. An ultra sound revealed nothing. But I did have a blood inflammation test which did show positive.  My throat feels restricted. I would be uncomfortable if I wore a turtleneck shirt. Any comments about this problem

[seib]

I have a 8mm prolactoma adenoma. I am taking 7.5 mg of bromocriptine each day. I have frequent bouts of sweating (every 2hrs) The sweating increased in the last three months. I have gained weight which is not appropriate to my 1,000 cal a day intake. I am fatigued. The doctor has told me that my Thyroid level is normal. I have an appointment with Dr. Ridout, at Toronto Western Hospital. She is an endocrine specialist in pituitary tumors. I do have diabetes type 2. I welcome any informative comments on diet, this condition or items I should consider.

[rumpled]

When you go, ask for a copy of the MRI (if you want) on CD and you can usually leave with a copy if you ask in advance - or get one 24 hours later with the report. Call ahead to the center and make sure they have done pituitary MRIs before - as in dynamic and have the equipment to give contrast without removing a patient from the MRI machine - aka- uptake is recorded. Ask to speak to a tech if the person answering the phone does not know - it is better to get a good MRI than a cruddy one - so shop around. A 3T one is better too.

Neurologists do not treat pituitary - please find a pituitary center so that you get tested and treated appropriately.

[asthma13]

I have this unexplained central sleep apnea which seems to be from the brain not giving the signal to breathe
the neurologist wrote me a script for this special pituitary mri with other instructions

[rumpled]

I was one of those with a lower number who had a lesion and was told oh no, you cannot have a lesion with levels that low. The levels do not correlate with the lesion nor the size of the lesion - no matter the type of lesion IMHO!

[horselip]

Prolactin can go up just a little, if you have an adenoma that is secreting growth hormone or ACTH.

These are notorious for affecting your blood glucose levels. The mass itself pressing on things could also cause you to  have low thyroid, and low cortisol/growth hormone depending on what you have., The mass usually causes low sex hormones too, ick.

It sounds to me like you need a lot more testing. Have you had an MRI yet? Are u working with a neuroendo?
horselip

[horselip]

Hi
There is no definitive number. I have heard endos say 200 mg per dL is "definitive"  But then my number was a bit higher than this and I had a Rathkes cleft cyst not a prolactinoma. And then through forums, such as this, I've met many with much lower numbers who did have a prolactinoma.
It would be nice if there was such a thing..
Horselipdrksxv

[asthma13]

thanks!  at what prolactin level do you definitely have a tumor?  I've been so tired my cortisol is low I'm almost diabetic and my endo system is all messed up.

[horselip]

Sort of...low elevations like that could be due to other causes.

Cabergoline is only a heart-risk when used in high doses like used for people with Parkinson's. If you stay at the lower doses it should not pose a problem with your heart, but could have side effects -(or not).
horselip