Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
I will be getting my IGF-1 factor checked. I've noticed some subtle changes in my feet...
Really weird! I have exactly the same multiple endocrine diseases as you!. Low Thyroid (Tsh 3.9 without meds, normal but low), High prolactin without meds, low cortisol but in the normal range (200 in the morning), Progesteron and DHEA is not common tested here in Denmark. Vitamin D low but normal.....I also suffer from exhaustion and overweight, fatigue, often nauseaus and forgetfull...
Lots of Doctors has said to me - everything is normal! I figthed to get thyorid meds and it had helped a bit, the normal range is 0.5-4,0 and mine was 3.9 - so everything is fine! I had lots of symptoms of low thyroid - better with medication but still not feeling normal....
I take Cabergoline for two months now - I can only tolerate half a pill a week (0.25 mg).
Greetings gitte
All the levels you mentioned have been in the normal range for me. What has been off is testosterone (low normal now) and Human Growth Hormone - 0. My Endo laughed when she saw my HGH was zero. She said that technically made me a 6 foot 6 person suffering from dwarfism.
Bemused, Are you going to have your tumor taken out?
Maybe in 20 years??
It looks like I will always have the tumor in there. The doctors didn't think they would be able to get enough of it out. Those two black dots at the side of it in my picture are the carotid arteries. One slip there with a scalpel and I'm dead. Up at the top it also a bit sensitive. As long as I stay symptom free and the meds don't bother me too much, and it doesn't grow anymore, I just look at it as extra baggage. Fortunately I have lots of empty room up there.
They tell you to go out and exercise. Even though your body says take a nap.
Hard on a guy when he grows man boobs with this problem .. sigh.
Thyroid hormones are normal though, so I'm not experiencing any problems in that area.
A new problem is cold feet and hands. The weather in my country is really cold now, but it still doesn't explain why my feet and hands are freezing even when wearing triple layers of socks and gloves. Will have to mention that to my endo next week.
I see no problem with problems being in the entire brain, as well as within the Hypothalamus. Something set the stage for our cancers.
I know that Prolactin scours Dopamine in the brain...and the HPA axis of the brain is responsible for so many different things.
I have multiple endocrine problems I am idiopathic hyperprolactinemia (no real answer to why I have it). But here's my recent endocrine issues:
1) Testosterone- hprolactinemia can cause an increase in testosterone for women which equals hair breakage or loss
It seems when my prolactin is high... so his my testosterone.
2) My calcium levels fluctuate which may be related to parathyroid issues. But we are not calling it an issue as of yet.
3) Vitamin D was really deficient recently. Was placed on a high concentrated supplement
4) Cortisol was in the normal range, but low, too. People with chronic fatigue and pain often have low normal or below normal morning Cortisol levels. I always wake up with morning stiffness since having hyperprolactinemia.
5) Thyroid- I am now hypothyroid.
6) Anemia (but that's indirectly connected to my hyperprolactinemia)
6) High Blood pressure. The month my period stopped, I had high blood pressure overnight and chronic nose bleeding.
7) Elevated Sed Rate and CRP
The entire thing with this hprolactinemia is that it can affect a lot of things in your body especially your immune system as there are prolactin receptors on cells in our body related to immune system. A lot of people with lupus and chronic inflammation/fatigue often have elevated prolactin levels.
With pituitary adenomas, at least you know that your pituitary is the main cause for all of these things. But its not comforting either as it impacts many aspects of your health depending on how large the adenoma is and what part of the pituitary it makes contact with.
There is a phenomenon called the pituitary/hypothalamus/thyroid and or pituitary/hypothalamus,/adrenal syndrome where there is an axis between these parts of the body... so when something is off in one.. .it messes up functioning in other parts of the axis (body).
So yes, growth hormone is can be an issue, central nervous system can be affected, etc.
The scary part is that a lot of endos and pcps don't understand this and are not helpful. If you can find a pituitary specialist in your area, you may be better off. Even osteopaths or naturopaths could help you more than your endo and pcp sometimes. However, if you have a connected doctor who is open minded and listen, together, both of you could probably help reverse or at least subside a lot of these issues.