FAQ - prolactinoma
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What are my options if I have a prolactinoma that is cabergoline resistant at 2mg per week?

I have a macro prolactinoma. It measures 1.4cm by 1cm. It is interfering with my testosterone production and causing hyperprolactinomia. My prolactin levels are over 450ng/ml. Do I have any other options other than surgery?

As you are probably aware your cabergoline can be titrated up to 4.5mg per week, if you can tolerate this, you don't mention if any side effects already experienced.

Your Physician may consider the possibility of Testosterone Replacement Therapy.

Surgery may well have be attempted if medical interventions are not sufficient to reduce the tumour size and reduce serum prolactin.

Stress reduction also has a part to play, regular exercise, if you are able, is effective at reducing this.

Good luck to you, all the best  (+ info)

How do I lose water retention after baby and having a prolactinoma?

I just had a baby (4 and a half months) and I had major toxemia -- I retained about 60 lbs of water most of which I got in the last trimester. I have now had the baby but still have retention in my ankles, feet, and a little in my face. How do I get rid of this. I also have a prolactinoma which I take bromocryptine for. Help!

Keep your feet up as much as possible.

Cranberry juice is a natural diuretics. I would try that.

Soaking will also help drain the fluid out.

I take an Herbalife product, cell-u-loss. It helps with my water retention, but mostly my swelling from a broken ankle last year.

If nothing else works, talk to your doctor.  (+ info)

Does anyone have experience treating a Prolactinoma during pregnancy?

I had primary amenorrea due to a prolactinoma, and responded to Dostinex/Cabergoline. Then I got pregnant, and was told to stop taking the meds. As a result my prolactin level rose very much during the first two months and I miscarried.
I consulted a fertility org. and they told me they recommend staying on the meds when pregnant until there's a heartbeat from the baby.

Anyone with experience on this?

I have had 3 children while having a 6mm prolactinoma. I had a huge problem with dehydration while pregnant...always in LD with IV's. Dehydration can cause you to contact and start labor. I guess I can see how that can happen. All my lil came out healthy. I did have a lot of headaches and now that I am nursing my littlest one I take Tylenol/codeine for the headaches. I took it during and after pregnancy...with no complication. I wish your well  (+ info)

Does anyone else who has a Prolactinoma also have Fibromyalgia?

2 years ago I was diagnosed with a prolactinoma. I noticed that it made the fibromyalgia worse... specifically muscle fatigue. Does anyone else have these health conditions and do you think there is a connection between the two?

have you been checked for


Prolactinoma can cause a pituitary problem--which has many similar symptoms to FMS

It is true that another medical condition such as Prolactinoma can trigger FMS, but it is also true that it could judt be the Prolactinoma.

Many docs label any pain--even pain due to anotehr condition such as Prolactinoma as FMS--even though it is only the original condition

even if you were diagnosed with FMS first--it may have been a misdiagnosis-they may have missed the prolactinoma  (+ info)

Did anyone else had primary amenorrhea due to a prolactinoma?

I did not start getting my period as a teenager when I should have, and after some tests the doctor said i have excess prolactin due to a pituitary tumor. I'm curious how common this is. I've been reading the questions here and I see alot of people have high prolactin levels, but I'm curious how many people didn't start getting their period to begin with because of it.

No.  (+ info)

Can Prolactinoma patients stop Bromocriptine after some years?

My father is taking Bromocrptine (12.5 mg/day) since 2004. Now his Prolactine level is normal.

Prolactinoma is a very very rare disease in males
In Prolactionoma the goal of treatment is to return prolactin secretion to normal, reduce tumor size, correct any visual abnormalities, and restore normal pituitary function. In the case of very large tumors, only partial achievement of this goal may be possible. Because dopamine is the chemical that normally inhibits prolactin secretion, doctors may treat prolactinoma with bromocriptine or cabergoline, drugs that act like dopamine. This type of drug is called a dopamine agonist. These drugs shrink the tumor and return prolactin levels to normal in approximately 80 percent of patients. Both have been approved by the Food and Drug Administration for the treatment of hyperprolactinemia. Bromocriptine is the only dopamine agonist approved for the treatment of infertility.
Bromocriptine treatment should not be interrupted without consulting a qualified endocrinologist. Prolactin levels often rise again in most people when the drug is discontinued. In some, however, prolactin levels remain normal, so the doctor may suggest reducing or discontinuing treatment every two years on a trial basis.

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I have Prolactinoma, a tumor on the pituitary gland... Looking for others who have it.?

I am a 28 yr old wife & mom of 2. Just recently diagnosed with a Prolactinoma, which is a tumor in the brain on the pituitary gland. I have tried several different avenues of trying to find others with this problem and have had no success. I've googled it, yahooed it, etc. If anyone here has it, I would love to know your treatment and outcome or if you are still going through it.
Thank you!

I had one. Actually, I had two tumors - the prolactinoma and Cushing's disease so I had to deal with two at once. I ended up with surgery. I did take the med - parlodel for a short time. I was mostly told to ignore my tumor but this was quite a while ago. It was bad advice.

Normally this type is taken care of with meds - and often for as long as needed. If the tumor does no respond, then surgery is considered.

Make sure you have a really great doctor! If it comes to surgery, get someone super experienced and do not be afraid to travel.

You may find a yahoo group on the topic - or at least on pituitary tumors. Good luck!  (+ info)

I have a prolactinoma and does it affect water retention & weight gain or loss?

I went from 145 to 234 with my last pregnancy and 60 lbs I lost immediately as just water due to toxemia. I am now at 186 and have water retention and difficulty losing weight. I am taking bromocryptine which makes me feel groggy. I am at a loss as to whether or not other people are having a similar experience or having any knowledge to help me.

If water retention and hormone imbalance is the cause of your weight gain then I may have a trick for you. Something that always works for me is to put a few ounces of cranberry juice in a bottle of water 4x's a day. Cranberry is a natural duretic and it helps keep the water of. I have a similar hormonal imbalance. I did some reasearch on prolactinoma and it doesn't seem to cause weight gain directly although hormone issues aways affect your weight because they control your bodily functions.

Hope this helps  (+ info)

Has anyone heaard of something called Prolactinoma?

It has to do with the pituitary gland and it controls all of your hormones.

A prolactinoma is a type of tumor of the pituitary gland. It secretes a hormone called prolactin. This hormone is normally secreted by the pituitary in small amounts, but is overproduced when that type of tumor is present. Tumors of the pituitary gland can secrete other types of hormones as well, but a prolactin-secreting one is the most common type. Symptoms can include irregular periods in women, and milk production from the breasts of either women or men. You can also have double vision or restricted field of vision because the pituitary gland is so close to the nerves that control your eyes.  (+ info)

I have Prolactinoma a tumor on the puititary gland does anyone know anything about this?

I was recently dignosed with this does anyone have any information about it? I have tried searching the net but not very helpfull. Does anyone here have it?
Should I be worried about the pain between my eyes and my nose bleeds? and are those related?
Sorry know its gross but not sure who to ask and it is yahooo wuestions for those whom seek answers.

A prolactinoma is a tumor of the Hypofesis which is a gland in your brain also called pituitary gland. normally the way a prolactinoma manifest itself is through head aches, Amenorreah or missing out on a period, dizziness and decreased vision, all though I've never heard of a nose bleed it is possible that it is related.

More often than not, prolactinoma respond wonder full to dopa drugs, the problem with these drugs is that they have kinda nasty side effects, if that fails to work surgery is another option, and now with a procedure call transesfenoidal surgery, it's really a walk in the park compared to the old days

Make sure you talk about this with your doctor, what to expect from the side effects and when to decide if surgery is right for you  (+ info)

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