prolactin secreating and acth secreating tumor questions
Last year I was diagnosed with a prolactin secreating tumor in my ptiuritary gland. Is it at all possibe that this type of tumor can secreat other hormones like acth or cortisol? I go to the gym 5 times a week and hardley eat and seem to be gaining 1-2 kilos a week. Its driving me crazy. i also suffer from insomnia, have trouble concentrating/focusing, and have fatique usually in the mornings. When I had my appointment with my endo last year I told him how I was feeling and he told me to see a psycologist and see a doc for antidepressents. I dont understand why he wouldnt do any tests. Is it because prolactin secreating tumors dont go with cushings disease?To anyone with cushings have they also had high prolactin levels and what treaments are there for cushings?
Funny you should ask that - I had both tumors - Cushing's AND a prolactinoma and it was very difficult to get diagnosed since the symptoms were crazy. However, cortisol can cause elevated prolactin as well from time to time as well as thyroid and lots of other things so prolactin has to be very carefully evaluated. Since a prolactinoma is the most common of the pituitary tumors, most fall in this category and docs who are not pituitary doc may not know enough to test well. Is your doc a neuro endo?
Prolactinomas do cause a lot of mental distress BTW so that is a symptom of that tumor. Treatment - aka effective treatment should help it.
I would get copies of all your testing, films etc and get another opinion.
so may I ask, did you have two types of tumors growing in your pituritary gland? Is it possible that the tumor that is secreating prolactin can also secreat acth? Or are they two different types? I hope that makes sence. Prehaps thats why my endo didnt do any tests cause only one tumor was present?
No Im not sure what an neuro endo is, is that where they use surgery as treatment? When I asked my endo what were my options for prolactinoma he was rude and said I could do nothing or take this drug, which I think only lowers prolactin and not shrink the tumor. He made it seem to be no health issue. Im getting tests done in Aug to test more hormones. Did you also experience hypothyroid and excess estrogen as well?
I had two separate lesions - one on the left (Cushing's) one on the right (prolactinoma) which is not common but I know two others like me.
What can also happen is one type of lesion can grow on the area where another hormone is secreted so it causes both types of symptoms.
Prolactinoma can be treated primarily with medication - Cushing's primary treatment is surgery. A Neuro-endo is simply a pituitary endo - no matter what the tumor and they do not do surgery, they have just done more school so in theory they should be smarter (some are, some are NOT). A neuro-endo would, in theory, test you more thoroughly.
I also had thyroid issues. I had PCOS in addition to other gyne issues (let's face it, I am/was a mess) so all those tests were off - this led to delays in diagnosis as cortisol lowers testosterone usually.
It would be beneficial to you to find a large university or large city center and go to an endo there - or go to a helpful doc listed on a site so you can get properly tested. There are sites listed on the health pages. Get copies of everything!
I was diagnosed in 2000 with a microadenoma 3mm and another type of cyst or tumor that was 2 to 3mm. The said was probably a rathkes cleft cyst or a crainiopharyngioma. I had a slightly high prolactin level and my breasts where lactating. I feel like the jumped to the conclusion i had a prolactinoma and take these pills or not and just dont worry about it. I had undiagnosed PCOS for serveral years before that and had to have 3 major abdominal surgeries for a hysterectmy. I have been diagnosed with allmost everything you can think of: hiatal hernia, gerd, colon issues, even corporal tunnel syndrome, The there is the mental major depression disorder, bipolar, and ADDHD.MY last MRI was in 2007, due to insureance issues and it was 5mm microadenoma and a 3mm cyst or glioma. Now I have diabetes and my eye doc said i have glaucoma and my left pupil is not responding correctly.I am a total wreck and nothing but a shell of my former self.Got any ideas. I feel like im going to have to die to get any help.
Some state hospitals, larger hospitals and NIH take on charity cases - and you can get angel flights to get there.
If you have copies of your records, shop them around (mail or fax, a cheap home fax is so handy! or even using the email fax programs, but I don't have much luck with them but my friends use them) and get opinions that way.
Make up a sheet outlining major symptoms and when, sending reports etc and ask if they can treat you and send off. NIH you have to be sponsored by a doctor but it can be a PCP or even your eye doc. Even the expert here will look at your films for free and that hospital I know takes charity cases (they by accident put down I had no insurance) so it will take some effort on your part, but get a friend or family member to help you and put data together and send some out. The diabetes, eyes, even GI issues can be related to the pituitary!
BTW I had the PCOS too and had the same - several surgeries then hyst.
I only had a 5mm prolactinoma and gained weight like crazy Heaviest I had ever been, and like you was hardly eating. Had it removed surgically and lost most of the weight without even trying during the next year. I was not ever on any meds.
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