Hi!! And welcome to this group. I think you will get a lot of questions answered here even just by reading older threads. I got diagnosed with a microprolactinoma in late 2013 and spent 14 months on cabergoline. It dried up the breast milk, helped with libido but I too had a lot of brain fog, bodyaches, weight gain, fatigue, even shortness of breath at times.

Some of the symptoms improved with cab, some improved after I started Synthroid for low free T4 but even 6 months in the bodyaches and fatigue and brain fog seemed to be getting worse.

I saw a third endocrinologist and she repeated an IGF-1 and later an oral glucose suppression test and found that I did in fact have acromegaly. I just had surgery 3 days ago and awoke with NO brain fog.

I guess my advice is that your diagnosis may change an evolve. Be your own best advocate and YES these tumors cause a lot of symptoms that I could not find listed anywhere. Good luck and hopefully you will start to feel better soon.

Hi there! I've been dealing with elevated prolactin for a looong time. I was diagnosed with a microadenoma in 2006 I believe. My prolactin levels were like 200-300 at the time. I had been experiencing depression, anxiety and severe panic attacks, and of course started producing milk and my periods stopped. For me, I know there was a HUGE connection between this condition and my mental issues. I believe it went on for years due to my un-diagnosed tumor. I was tired all the time, just wanted to nap. I did start gaining some weight, but I attributed that to the antidepressants I'd been on. lol....it's hard to know what causes what! I did also have more headaches than usual, and noticed a severe decrease in libido. The symptoms can vary, so what you're feeling sounds normal for this condition to me! GL to you. You're not alone.

Your aches and pains and generalized weakness are also definitely a symptom.

I can hurt like a toothache...take my medication...and in 45 minutes I'll be taking a walk around the block...feeling great.

Prolactin scours the brain and the body of dopamine...a very important neurotransmitter.

Thanks for the helpful support. I was nervous going in to my first appt with endo. Thankfully, they were very receptive to all my symptoms. I was started on cabergoline and synthroid (for my symptomatic secondary hypothyroidism). I am starting to feel better already- I definitely have more energy. I just feel more human again.. I can't wait to feel 100% again.

I've had my prolactinoma for 20 years now. I've always had low energy levels and nothing really helps me with that. I took cab for about 12 years and it actually shrunk my tumor to 2 mms, but my milk secretion is still here. And all the sudden I've had massive headaches.I wake up with them, they get worse throughout the day and I'm absolutely miserable. It has made me depressed because I no longer want to do anything but sleep because my head hurts so bad. My endocrinologist told me he doesn't think it's the tumor, but I don't know what else it could be? Or why all the sudden after all these years it just started? I've been tested for everything under the sun, I've had 2 nerve blocks and 2 epidurals, I've tried imitrex, topamax, everything. Im taking synthroid also. Have any of you all had headaches? I'm so discouraged because my dr doesn't believe it's the tumor, but I feel like it is! I've had acupuncture, massage, everything. Does this sound familiar to anyone? I Seriously need a listening ear with anyone who can relate and may possibly have advice?

Hi I have'nt been on the site for a while, but I'm still suffering with all the side affects mentioned, the foggy head and pressure head aches are the worst, I was diagnosed in 2007 with a macroprolactinoma, prolactin levels were off the charts at 35,000, I have been on Cabergoline for 7 years, my levels are now 400, but most days if feel so tired and have to push myself to do things, I love line dancing, so I do that 3 times a week, but find it very hard to remember the steps, as my memory is awful, my husband and I take holidays (cruising) as soon as we are back I find it hard to recall the ports of call we have visited within a few days of returning, yet the endocronologist, says it has nothing to do with the Tumor or the medication, I afraid we are just left to get on with it.

I am newly diagnosed and have definitely noticed memory issues and brain fog among my symptoms. I feel like this group is a great resource to discover which symptoms can be linked to the prolactinoma and also discover how others have overcome them. Would love to hear updates on how you all are doing

Hello,
I was interested in your feed. I was diagnosed with a micro prolactaloma 15 months ago. I am from the UK and they only treat tumours over 1cm with the known list of symptoms. I am like you I have none of these known list of symptoms, I am in my early 40s and have a contraceptive coil but still bleed heavley every month, I do not lactate, and my sex drive is fine. However I have very similar symptoms to you, which I find frustrating, uncomfortable and irritating.

My tumor is 7.5mm, and am just waiting for my second MRI results. I ache from head to toe, and have stiff limbs all the time. I cannot loose weight, an example of this is I have just completed a 500 mile bike ride over Europe in 35+ heat and put on weight when all my peers lost up to 20 lbs, I ate all the same meals they did. I get incredibly dizzy in bright lights or if lots of people run past me in high viz gear when I go running. This sensation leaves me nauseous and I look like I am drunk as it effects my balance.

I do feel mentally foggy but have a very active and high level job, which I manage well, however I am constantly judged as physically I do not look the part despite physically performing to the same level as my peers. I have seen 2 specialists now as I move around with my job, but because I do not have the list of noted symptoms no one is interested.( it's like they don't exist with this condition, you have confirmed to me I am not the only one.

Twice a year my bloods elevate leaving me with servre headaches and emotional, but this only lasts 24-48 hours then I am fine again. I have spent a lot of money getting advanced eye tests, due to this dizziness in bright lights but I am told my vision is excellent. I empathise with you, as I feel trapped, but life's for living and i won't let these symptoms or the weight police bother me. I am not sure what the answer is? If anyone can help ofer me any guidance I would be great full.