Aa
hypopituitarism or prolactinoma?Need some advice!
Hi!
I'm on Dostinex for four years, diagnosis micro prolactinoma. Under Dostinex my prolactin levels became normal, but my health situation is from year to year worse- fatigue, tiredness, low energy, low libido, depressive moods. In June 2011 also a hypothyroidism was diagnosed, I'm taking hormons and the thyroid levels are o.k. now.
But I feel more and more worse, having strong anxiety, a feeling of being in a huge stress, like short before some very important exam, with high heart rate ( 80-100 in a minute), which is causing me even more anxiety. I lost 10 pounds during the last 6 weeks. My doc gave me beta blocker against high pulse and anxiety and this helps somehow, but it isn't a solution. I also have to urinate much more frequently like usual. The doc suggested also antidepressants, but I just don't want to accept that all my problems are mental! I feel there is just something wrong in my body. Recently I finally saw the results of my MRI's and the reviews from the radiologist- he wrote there is only a suspicion that I may have a small micro prolactinoma, but he isn't sure about it! No confirmed diagnosis! But my endo always said I have a prolactinoma and have to take dostinex, no matter of the side effects which I have all the time. Further the radiologist wrote that my pituitary is slightly inhomogeneous with the tendency to loose slightly on its volume, compared with the last two MRI's from three and two years ago.
So now I'm totally confused- do I have a prolactinoma or not?? Do I maybe have a hypopituitarism, when my pituitary is getting smaller? My last blood labs from June 2011 showed that my cortisol and ACTH are still in the norm range, but very low. Would a adrenal weakness match with my symptoms?
I just don't know what to do, I'm totally down because of my symptoms. I have two kids and I can hardly menage my day. I don't trust my Endo anymore and an appointment at another Endo I have on the end of november!
Please, what would you say? Some ideas? I stopped with Dostinex two weeks ago, because the combination with Betablocker was just too hard, my blood pressure was terribly low and I felt totally depressed.
Thank you so much!
Greetings from Germany!
I'm on Dostinex for four years, diagnosis micro prolactinoma. Under Dostinex my prolactin levels became normal, but my health situation is from year to year worse- fatigue, tiredness, low energy, low libido, depressive moods. In June 2011 also a hypothyroidism was diagnosed, I'm taking hormons and the thyroid levels are o.k. now.
But I feel more and more worse, having strong anxiety, a feeling of being in a huge stress, like short before some very important exam, with high heart rate ( 80-100 in a minute), which is causing me even more anxiety. I lost 10 pounds during the last 6 weeks. My doc gave me beta blocker against high pulse and anxiety and this helps somehow, but it isn't a solution. I also have to urinate much more frequently like usual. The doc suggested also antidepressants, but I just don't want to accept that all my problems are mental! I feel there is just something wrong in my body. Recently I finally saw the results of my MRI's and the reviews from the radiologist- he wrote there is only a suspicion that I may have a small micro prolactinoma, but he isn't sure about it! No confirmed diagnosis! But my endo always said I have a prolactinoma and have to take dostinex, no matter of the side effects which I have all the time. Further the radiologist wrote that my pituitary is slightly inhomogeneous with the tendency to loose slightly on its volume, compared with the last two MRI's from three and two years ago.
So now I'm totally confused- do I have a prolactinoma or not?? Do I maybe have a hypopituitarism, when my pituitary is getting smaller? My last blood labs from June 2011 showed that my cortisol and ACTH are still in the norm range, but very low. Would a adrenal weakness match with my symptoms?
I just don't know what to do, I'm totally down because of my symptoms. I have two kids and I can hardly menage my day. I don't trust my Endo anymore and an appointment at another Endo I have on the end of november!
Please, what would you say? Some ideas? I stopped with Dostinex two weeks ago, because the combination with Betablocker was just too hard, my blood pressure was terribly low and I felt totally depressed.
Thank you so much!
Greetings from Germany!
With normal sodium and potassium - that helps think that adrenal function is probably normal (not always, but likely) since when those are wonked, the adrenals are not regulating them.
Your MRI is not being done correctly - aka - not a correct technique for a pituitary MRI and that can impact what is being seen. If your ACTH tube is not chilled that impacts the test. It sounds like you need a specialist! ADH is one part of the picture - there are also other parts that can be tested too and a kidney guy can help you out.
Your MRI is not being done correctly - aka - not a correct technique for a pituitary MRI and that can impact what is being seen. If your ACTH tube is not chilled that impacts the test. It sounds like you need a specialist! ADH is one part of the picture - there are also other parts that can be tested too and a kidney guy can help you out.
Thank you for your answer! My Endo is a regular endo. I found now another doc, who is specialist for pituitary, but I will see him in the end of november.
My MRI is always done with contrast at the beginning, before I go in the machine.
About ACTH I don't have any idea, I just gave the blood, but what happened then I don't know.
I will ask the doc to check ADH on monday too. Sodium and potassium were always o.k.
My MRI is always done with contrast at the beginning, before I go in the machine.
About ACTH I don't have any idea, I just gave the blood, but what happened then I don't know.
I will ask the doc to check ADH on monday too. Sodium and potassium were always o.k.
Cool Name!
Is your endo a pituitary -aka neuro endo, or a regular endo that does mostly diabetes?
When you get your MRIs - are they at a pituitary center and are they dynamic - that is with and without contrast and the contrast is given while you are in the machine so that the uptake of the contrast is recorded on images? That can show smaller lesions while a regular MRI may not show them as well.
ACTH can be low from lab error - was it a chilled EDTA (lavender here) that the tech put in a centrifuge immediately after the draw and was going to promptly freeze? ACTH degrades in minutes after the draw - so if it is not done right - the levels drop like crazy. The frequent urination can be an ADH issue - so they should look at that.
You can certainly have a prolactinoma with normal tests on medication - that is the point of the medication! If you go off the meds (which you should not do without talking to your doc) the tumor can grow and the levels will increase. The meds control the tumor and the levels. You can have other issues. Your doc has to decide if the blood pressure issue is a med side effect or if you have another issue - how are the sodium and potassium levels?
Can you find another endo?
Is your endo a pituitary -aka neuro endo, or a regular endo that does mostly diabetes?
When you get your MRIs - are they at a pituitary center and are they dynamic - that is with and without contrast and the contrast is given while you are in the machine so that the uptake of the contrast is recorded on images? That can show smaller lesions while a regular MRI may not show them as well.
ACTH can be low from lab error - was it a chilled EDTA (lavender here) that the tech put in a centrifuge immediately after the draw and was going to promptly freeze? ACTH degrades in minutes after the draw - so if it is not done right - the levels drop like crazy. The frequent urination can be an ADH issue - so they should look at that.
You can certainly have a prolactinoma with normal tests on medication - that is the point of the medication! If you go off the meds (which you should not do without talking to your doc) the tumor can grow and the levels will increase. The meds control the tumor and the levels. You can have other issues. Your doc has to decide if the blood pressure issue is a med side effect or if you have another issue - how are the sodium and potassium levels?
Can you find another endo?
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
