Being a very healthy, athletic, skinny girl I luckily got pregnant at 23 after only two attempts. My husband and I were very happy and everything was running smoothly. I later started feeling like my hands, face and feet were a little bigger– but the doctors and everyone else thought it was due to pregancy.

By the time I gave birth my ring didnt fit anymore and I looked a lot more swollen and we thought that it was because I was lactating. I breastfeeded for 8 months and by then I still looked different, bloated. I started to develop what my doctors thought was vertigo. I was dizzy a lot, depressed, horrible headaches and tired. I started to go to many doctors besucase I stopped breastfeeding and I kept getting bigger. They told me I had food alergias, nerves, stress, pre diabetes etc. After a while, I started to have milk discharge, although I had stoped breastfeeing a year before.

My feet where 1.5 sizes bigger, my ring which was fixed to fit my larger hand after delivery had to be fixed again to make it bigger. I started to have blurry vision on my left eye. I wanted to get pregnant again but found it was imposible! Every morning I would wake up to huge eyes, my forehead was getting bigger, I couldnt loose weight! I was increadibly insecure since I compared pictures of myself and I was a very different person.

Finally I went to see an endocrinologist in Houston who didnt take time to realize that I had a Macroadenoma of 4.5 cms in my pituitary gland. I had surgery 2 weeks later with one of the best neurosurgeons in the country, Dr. David Baskin. He took out as much of the tumor as he could with a transphenoidal surgery, but the mass was still very big and myIGF-1 levels were still above 1000. I instatly recovered my sight and my nose, eyes, hands and feet started to look a little as they were before. I underwent Radiotherapy with the amazing Dr Bin Teh, in the Houston Methodist Hospital, he is increadibly caring, bright and makes you feel well thoughout the process. Someone with a pituitary tumor usally has 30 sessions but since my tumor was a little more agressive because it was growing at a 10% pace, instead of the normal 1.5%, then we had to add 3 more sessions to really stop it.

I finished my radiotherapy 6 months ago. And started since with 10 mg of Somavert every day. By then, December 15th, my IGF-1 was around 850. By February 16, it was 720, in April, 432, now in June, it is 245! Finally where it should be. My adenoma has reduced in size almost 1 cm since I finished radiation therapy, but I still have a big mass because the biggest side of the mass meassures 2.3 cms but my doctors are very happy with the progress. I also developed a low thyroid level the TSH was .05 and I was put on Levothyroxine .05 mg every day. Now my TSH is .34 so it is getting better

For the past week I stopped Somavert, although it has had amazing effects on me. But I want to get pregnant and since there isnt enough information about this medication with pregancy, my doctors want to see if my growth hormone levels elevate again without the medicine so that I can go ahead and get pregant. They will check my blood at one month and two months. I am very nervous since Ive been feeling my hands bloat again since I stopped, but this is the only way I can know if the radiation has had time to take control over my hormone.

Doctors believe that the tumor will shrink and become a scar thanks to the radiation. They also told me there are risks of developing deficiencies in hormones since the pituitary was damaged first by the tumor and then it can be damaged by the slow acting radiation.

I am now 27, it has been a long journey and I look a lot like before, smaller hands, feet, and face! But my ring size never restored to what it was and my feet, they stayed halfway. My endocrinologist said that my bones could grow a little and I guess they did. I also got 2 cm taller. I sleep well, dont feel tired, rarely get headaches. I will always have to have check ups and monitor any sympom that may come back but I’m very happy with the outcome!

4 thoughts on “My Story With Acromegaly and a Giant Macroadenoma”

  1. Bre Kanzler says:

    Acromegaly
    Thank you for sharing your story. I’m 28/F and I was diagnosed with acromegaly last year after 2 yrs of seeking help for neck pain and headaches. My jaw had grown so much I couldn’t smile and lift my cheek bones the way I used to, my feet grew two sizes, my engagement ring had to be cut off… I too was baffled and attributed the changes to other circumstances like getting older, no periods due to my IUD, not wearing heals anymore, dehydration or summer bloating. My orthodontist finally set me on the right path when I was being fitted for braces. I couldnt chew my food properly due to the jaw growth… He noticed something strange with my head X-rays and sent me to the endocrinologist.
    Anywhos… I had transphenoidal surgery on my 3x3cm tumor. The risidual tumor is being treated with A 1/month injection called Pasireotide (signiforLAR.) It was just approved by the FDA at the end of 2014 so that makes me nervous. But it has my levels down to 340. I haven’t had any radiation as we’d like to still have kids.
    I appreciate you putting yourself out there. It’s a tough thing to talk about.

  2. Please consider sharing your full story with us and others here: https://globalgenes.org/patient_story_submission_form/

    Best,
    Ilana
    Managing Editor

  3. Courtnay says:

    I don’t know if I have acromegaly yet but I think I can relate to some of the symptoms.

    I was pretty athletic growing up and always made a point of exercising during the day.

    As a woman or girl, weight gain is so tough to deal with especially if it is caused by a tumor.

    Anyways I hope in the future , some endocinologists will stop thinking
    Their patient eats too much
    When they are really dealing with a
    Serious medical condition

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