× These pituitary tumors (also called adenomas) secrete excessive amounts of prolactin and are the most common type of pituitary tumor seen clinically.

Looking for someone that could explain these symptoms

  • Posts 26
  • Thank you received: 1

Replied by carolk on topic Looking for someone that could explain these symptoms

Hi There,

I agree with what Tammy said. You need to see an experienced pituitary endocrinologist. If you are located in the U.K here is a link to the U.K. Pituitary Foundation's list of known pituitary endocrine specialists:


Pituitary disorders are quite complex and are considered a rare disease. I can't stress enough how important it is for you to see a pituitary specialist to get a correct diagnosis and treatment!
3 weeks 5 days ago #10764

Please Log in or Create an account to join the conversation.

  • Posts 105
  • Thank you received: 6

Replied by pnaadmin on topic Looking for someone that could explain these symptoms


I am not a medical professional so I do not have answers for you. I do recommend that you find a pituitary endocrinologist that can help you get to the bottom of your symptoms. Most endocrinologists specialize in diabetes and metabolism, you need one that has experience with the pituitary hormones, both prolactin and DHEA are related to the pituitary. Specialists are more likely to have the training necessary to order the right testing and figure out what is going on. 

Here is a link to a list of pituitary specialists:


We also have a list of pituitary centers:


A pituitary center may also be helpful because they have multi-disciplinary teams that all work together to determine the best course of treatment based on your individual case.

I hope this information is helpful and that you are able to get some help soon. Feel free to contact us if you have any questions.

Take care,

Tammy Mazzella
3 weeks 6 days ago #10763

Please Log in or Create an account to join the conversation.

  • daronofsky
  • daronofsky's Avatar Topic Author
  • Offline
  • Fresh Boarder
  • Fresh Boarder
  • Posts 1
  • Thank you received: 0

Looking for someone that could explain these symptoms was created by daronofsky

Although I am here on due to slightly elevated prolactin levels over the last few months, however this could have been over my whole life, just I feel this is part of my much larger issues over the last 10/15 years. To do with very low energy, and other issues.When I was a teenager I started to fall a sleep after eating. Not just lethargic or low energy. I would drop a sleep. As well as this i got no energy from food at all, if anything i had more energy the less i ate. My parents put this down to being a teenager. This is when my attention and focus seemed to disappear and I became constantly tired. Focusing on anything for any length of time caused me great discomfort, at times became painful, causing head aches, sometimes even putting me to sleep. This got worse as I got older. In my late teens I started to see blue sparks every now and then which I told my optician who told me it was dehydration, however I felt it was all connected, as well as this at around the same time my heart would start racing for no reason, usually at night. It was as if I had be pumped full of adrenaline, like something out a movie, really beating so hard and fast I thought it would burst. One night I got up and asked my parents to feel my chest, they thought I was having a heart attack. They convinced me to see a doctor, they referred me to a heart specialist. At the time I was sleeping all the time. The doctor said there was nothing wrong. As I went into my 20s still constantly tired all the time, I started to get depressed. This happened almost like clock work, after so many months I’d have a point where I had to take a week off from work, relationships, everything and just sleep. I felt like my brain had run out of something and sleeping helped.Over my 20s my diet was a lot of sugar and caffeine to stay awake. Consuming large amounts of cola. This kept me awake and functioning, however left me falling dropping a sleep without any notice.
During this time, i set fire to my flat a number of times falling a sleep while cooking, I was disciplined at work for sleeping in, as well as dropping out of college due to non attendance due to sleeping.
I also started developing sores on my scalp and my scalp started to become red and inflamed as well as losing hair, this never went away and still effects me.In my mid 20s I started taking modafinil, I also changed my diet to first no gluten then to high fat low carbs to see if this would help with my energy levels. It did. I got a promotion, a stable relationship. My focus and concentration however were still terrible and I would still be tired all the time, just not to the same extent. However whenever I had a high carb meal, I would revert back to sleeping all the time. Dropping a sleep after work.In October last year I started getting a pain in my lower right side, it was painful but I thought it would go away.  I was no longer fully digesting my food properly, even easily digestible foods where making their away unchanged though my body.In January this year I decided to reach out to help fix my focus and concentration. I was diagnosed with ADHD with attention and focus being the main issue. I came off modafinil and went on long acting stimulant lisdexamfetamine, which put me to sleep. After 6 weeks I changed to Ritalin. This also put me to sleep. During this time I had private tests done to see if I could find the root cause of the pain in my right side. This showed higher than normal prolactin levels. My doctor dealing with the ADHD told me he had never heard of anyone having High prolactin levels with out taking anti psychotics, which i was not,  I asked if this could have effected the way the medication was working and contributing to my falling a sleep? I was told no. He told me he did not feel comfortable treating me further as he wanted me to have the prolactin issue looked at.My GP at the time was trying to get to the cause of the pain on my right side.  I had a number of tests done, during this time i had blood in my stool and still not digesting food correctly.
After seeing a specialist nurse, i had the two tests that are normally done at the beginning of symptoms like this, tests for food poisioning and internal bleeding.  This showed CAMPYLOBACTER, after a course of antibiotics the pain lessened. However this looked like i had something for a long time that should have cleared up on its own after a few weeks.However I asked to be referred for the higher than normal prolactin, but due to the other hormones being within the normal range, i was asked to have the test don’t again.I have had my thyroid, b12 and active b12 as all as other tests done on off for the last few years.The only tests that have shown anything out of the ordinary was higher than normal prolactin and higher than normal DHEAs
3 weeks 6 days ago #10762

Please Log in or Create an account to join the conversation.

Moderators: [email protected]membershipcoordinatoradministration