Starting the treatment

It took me weeks on the phone to find an endocrinologist who was willing to see me sooner than in one month. I didn't know what kind of tumor I had and that was extremely depressive. I was blessed to find a very decent and honest endocrinologist who agreed to see me. In a couple of days it became clear that I had a giant prolactinoma, which excessively co-secreted prolactin and growth hormone.

I was put on Cabergoline, which whelped me feel more energy. I will know soon whether whether it has any effect on my hormone levels and tumor size. I also asked my endocrinologist to prescribe me Androderm, because my testosterone levels were very low and it affects the mood very much. That helped even more to increase my energy.

Having done something about my prolactin and testosterone I needed to deal with the growth hormone. Sandostatin LAR was the most obvious choice. It took me another week on the phone to negotiate with my insurance company and my nurse how to get it. For some reason it was not covered by pharmaceutical benefits, but by medical. This meant that the drug was supposed to be injected in the hospital and delivered to the hospital with a courier.

In any event, I got my fist injection in mid-May. It is strange, but the very moment I was injected my tiredness returned and I felt extreme weakness and all improvements made by Androderm and Cabergoline were gone completely. I felt so fatigued as never before. On the next day I felt much better, but still felt worse than before Sandostatin.

Acromegaly - how it all began

Exactly one moth ago I was diagnosed first with a giant (5cm) pituitary tumor. After spending a couple of days Internet I self-diagnosed myself with acromegaly. Though a very sad news, it has explained a lot. Oily skin, spreading teeth, tiredness, joint pains, head aches, increased shoe size seemed to be completely unrelated to each other.

By looking at my nose and forehead on old pictures I have now figured out that most probably it started about 8 years ago. It lasted for years and not a single doctor said the word "acromegaly" before. And I have seen many doctors in at least three countries.

My first reaction was depression and re-thinking my life. When I was diagnosed with tumor, I wasn't told whether it was life-threatening or not. I started assuming the worst and reflecting on what have I achieved in this life and what I should do in the remaining time. I even created a "to-do" list of the things I should try to do before I...

I started this blog hoping that that others in a similar situation like myself will find it useful. I found blogs of others on acrmegaly very helpful and felt that not sharing my own experience would be unfair to others.