This is interesting. As a pituitary patient with high prolactin I had very severe problems with heat. Also, my heartbeat was so slow I had constant arrhythmias every night. Was sure I was going to die because I woke up choking many times a night & gasping for breath. High prolactin is brutal on the system! Even when my tumour was less than 3mm it caused huge problems so Cabergoline was a miracle in many ways. Although some felt it might damage the heart, it saved me from death, no doubt, by reducing the prolactin to safe levels. A faster heart was more steady so I never had those again, but can never stop the pills and will always be extremely intolerant to heat!
Pituitary tumours, even when small can cause "extremely abnormal" tiredness also. Mine was so bad I sometimes fell asleep on the hard kitchen floor. Even to this day I am totally "out of it" if I don't get a lot of sleep. So all I'm saying here is that it is important to take a simple blood test showing prolactin levels.
Originally Posted by falkenkb
Thanks Jul2 for your recommendations. Her MRI in April showed no change in size. Her other hormone levels were checked when they initially found the tumor and were normal, and they will be checked again this October. Her TSH continues to be normal and Free T4 and T3 are still high. The numbers seem to be very similar each time she is tested.
Question for Helen (or anyone else who knows what this disease feels like): Do you have a hard time in warm weather? I know the thyroid helps regulate body temperature, so I wondered if there was a connection. My daughter seems to have "bad days" when it is pretty warm out. I'm not sure if that is because she is having a harder time sleeping due to the heat which causes issues, or whether she just doesn't feel right when the temp is high.
We cut back her dose of Atenolol from 3/4 tablet daily to 1/2 tablet daily per the doctor's request. It was AWFUL!! We made it a couple of weeks and I called for them to increase the dosage back to what it was. She got very depressed and moody while her dosage was decreased and had a harder time dealing with things. Her teacher noticed, her 9 year old sister noticed, and of course I noticed. She was supposed to do another trial off of Atenolol this summer, but we refused to do it after seeing how the decreased dosage affected her. Do you have any information you can tell me on how Atenolol helps you? I know it lowers her heart rate, but are there other things you notice? It seems that she is very sensitive to needing sleep. I don't know if the lack of good sleep is what makes her "off" or whether it is other symptoms. I think it is the other symptoms that affect her sleep and then snowball on top of one another.
Thanks again for all of your help! She is now 7 1/2 and it is getting easier to find out how she is feeling, but I think she has a hard time explaining things.
Hope you're all feeling well!