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peetiepie
@peetiepie

Posts: 12
Joined: Aug 27, 2018

Prolactinoma then some

Posted by @peetiepie, Mon, Aug 27 1:48pm

I was diagnosed with a prolactinoma in 2013.
I had my last child in 2011 and never stopped lactating ( I'll add that I also had my spine punctured during my epidural and had to have a blood patch) by 2013 my periods had stopped migrains everday. My OB diagnosed me fallowed up with Endo started cabergoline, within a few weeks lactation stopped and periods started again. This is where the AND THEN SOME COMES IN. Since 2011 to now I've been diagnosed with a prolactinoma, fibromyalgia, ostiopeinia, carpal tunnel, raynauds, chronic fatigue, edema, I also have large swollen lyphnodes under both armpits not painful, biopsied and found non cancerous. I have a 7mm non calcified growth in my lung, 2 very small growths on my thyroid, an enlarged non painful thyroid which is visible and embarrassing. Just started getting ovarian cysts during my cycle. Now for daily symptoms. Migraines, joint pain, fatigue I crash about ever 2 hrs, sever anxiety, nausea, constipation, sometimes dizziness that fluctuates from day to day. Complete numbness in toes I have to put them in warm/hot water at least 1× a day. Occasionally chest pains which have been diagnosed as pericardidtis seems to flare up if I don't take diuretics. Also have a small tissue on a valve in heart that seems to stay stable. I've also started gaining weight around my waist at a crazy rate. So my conversation is, I've been a mess since 2011 only seem to be getting worse. I have seen. Cardiology, GI specialist, rheumatologist, endocrinologist, ENT, neurologist and my pcp. numerous scans and blood tests. Almost everthing comes back abnormal but not enough to do anything about. So I just keep getting scanned and my blood drawn while all these drs just wait. I understand for some of these issues that's what they think is best. Just unbelievably frustrated and sad I have 3 children and can't work we are all very happy and have a wonderful life besides my health issues, some days I'm just over it all and feel depressed and helpless I just want to beg anyone for help. I eat very healthy do low impact exercise for at least 20min a day. Drink plenty of water take vitamins. I do what I can.

REPLY

Is there a reason that you have not had surgery for the tumor on your pituitary? As I understand it, that can throw everything off. Do you go to Mayo Clinic or just different doctors for all the different problems?

@nire

Is there a reason that you have not had surgery for the tumor on your pituitary? As I understand it, that can throw everything off. Do you go to Mayo Clinic or just different doctors for all the different problems?

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I've been told that the tumor can be treated with meds so removal would be to invasive. Also that there is a chance it will grow back within 5 years. So I see different drs for every symptom. Most recently I have been scheduale for a sleep apnea test. Looking for central apnea I think.

My thyroid is so enlarged I feel like im being gently choked. My throat is always sore and raspy, it's hard to exercise or even talk alot without getting horse.

I'm not at the Mayo.

@peetiepie

My thyroid is so enlarged I feel like im being gently choked. My throat is always sore and raspy, it's hard to exercise or even talk alot without getting horse.

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We wasted 9 months on local doctors that did almost nothing in that time. I’ve lost complete confidence in our medical system. My son had so many different doctors, one for every symptom. None of them were talking to each other and each was treating him like their specialty was his only problem. It made everything worse. Try to go somewhere like Mayo, where all the doctors talk and your blood work is centrally located. I’m not saying Mayo is the only place but big well known hospitals see a lot more than everyday doctors see. At the very least, get a consult with another doctor to ask about surgery. I’ve heard about many people that were told by their local doctor that they couldn’t have surgery, then a place like Mayo says they can do it. No one should have to feel bad for so long. I had to fight my sons insurance company to let him go to Mayo Jacksonville, but they finally did. So far, I think they have done ok. I’m not as impressed as I’d hoped to be but I think they will eventually help him. Everything just moves a lot slower than I had hoped for, but still not as slow as locally. The blood work they do comes up within about 4 hours so you can see it. The local doctors took about 1 week to get you blood work results. One thing I didn’t like was that when things came back out of range, I had to call the doctors office and ask what was the next step. I think in the end, they will find his problem and fix it, just slow. The doctors at Mayo do take time with you when you have an appt though. You are not rushed thru like the local doctors.

Liked by peetiepie

I just reread your letter about how you feel, after I replied below. You really do need to be seen by a big hospital. You have a ton of symptoms! No one should have to suffer like that. When you have so many symptoms, they are usually tied to one thing. Also, you should hav3 all your hormones checked, including sex hormones and IGF1. I would be very suspicious of a doctor telling me he can’t operate on a pituitary tumor. The big hospital do it all the time. You should go to very good sites like Mayo and Cleveland Clinic ( many others too.) look up all the different symptoms that your particular pituitary tumor causes and see if it fits your symptoms. Write those down and ask the doctor about them…when you see a good one. Don’t look on blogger sites and regular websites. They only confuse people. If you’re going to talk to a good doctor, they will only want to hear about sites that are credible. Good luck and let me know if you find someone to help you out there…it’s a jungle!

Liked by Jamie Olson, lioness

Thank you!

I have a prolactinoma also. Im in the same boat directly after that and within past 6 months ive been diagnosed with PCOS, sleep apnea, hypothyrodism, sjrogens syndromr & systematic lupus. It all seems to relate back to itm ive never had so many problems in my life. Not too mention cabergoline became toxic to my body and i had hives all day everyday for months & anaphylactic shock. All for something oh its just 2 small tumors. They are benign
Shouldnt cause ya much of a problem. Ive never had the lactating problem. Just my periods stopping. Thank goodness

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