Agromegaly and my growth hormone level

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I was diagnosed with a Pituitary tumour and Acromegaly in February 2014. I was told that I have probably suffered from the condition/ had the tumour for at least 15-18 years. I am 39 years old. My tumour produces an excessive amount of growth hormone. My surgery to remove the tumour was scheduled for march 2014. I did the surgery and doctor told me that my tumour is completely removed after 3 month i did blood test to check my GH level and it was 50 so the doctor start injecting me with sandostatin lar30 every 4 weeks, after 2 month we did a blood test and my GH was 2.63 ng/ml and i became happy and started to feel better after another 2 month i did another blood test and my GH was little higher 3.30 ng/ml i still take the injection every 4 weeks but 1 week ago i wanted to see how my GH level will be befor i take my monthly injection and the result was 6.31 ng/ml i was shocked and talked to my doctor and he told me lets take the injection and do another blood test after 7 days. I did and the results was 12.80 ng/ml i called my doctor and will meet him next week i live in Egypt and Acromegaly treatment is not realy advanced here.

can you help me with any advice of what to do or what to ask my doctor.

Thank you for your time

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  • Posted

    hi

    so sorry to hear about the troubles that you have been going through. Although you say that treatment is not really advanced in Egypt, I think that you can take comfort from the fact that you had the operation so soon after diagnosis.

    It is confusing that your growth hormone levels are fluctuating like that if really all the tumour has been removed. is there perhaps some tumour remaining? eg perhaps outside the pituitary fossa? Your doctor should be able to tell you that, if you have had an MRI after surgery. or if the surgeon has written something in your notes.

    If you look on the website of the pituitary foudation they have some documentatoin that you may find useful. They also have some information directed at GPs which your doctor may find useful. I offered this document to my GP here in UK and he was pleased to take it. As you know, pituitary conditions are very rare.

    best wishes

     

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    • Posted

      Thank you dambudzo

      as you said my doctor asked me to do an MRI on the pituitary and the brain to be sure that no more tumors are there and also told me that next time he will increse the sandostatin lar dose to 40 instead of 30 and he started to give me cabergoline twice a week and will increase the dosage gradually and asked me to do some hormones blood test which i did next day our meeting the GH level start to go down from 12.8ng/ml to 6.3 ng/ml , but the problem is the IGF-1 which is 720 ng/ml (really high) i will meet my doctor next week after i do the MRI but i read that cabergoline + sandostanie may adjust the IGF-1 levels is this right or wrong and is there anything else i can do beside adjusting my protine and calories intake .  

      p.s i love to go to the gym do cardio and lift weights can this harm my heart or no .

      thank you again  smile 

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  • Posted

    Thank you dambudzo

    as you said my doctor asked me to do an MRI on the pituitary and the brain to be sure that no more tumors are there and also told me that next time he will increse the sandostatin lar dose to 40 instead of 30 and he started to give me cabergoline twice a week and will increase the dosage gradually and asked me to do some hormones blood test which i did next day our meeting the GH level start to go down from 12.8ng/ml to 6.3 ng/ml , but the problem is the IGF-1 which is 720 ng/ml (really high) i will meet my doctor next week after i do the MRI but i read that cabergoline + sandostanie may adjust the IGF-1 levels is this right or wrong and is there anything else i can do beside adjusting my protine and calories intake .  

    p.s i love to go to the gym do cardio and lift weights can this harm my heart or no .

    thank you again smile 

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    • Posted

      Hi Zwedru

      i'm so pleased that you are having these discussions with your doctor. good and open communication at these difficult times is very important.

      As for the IGF-1 levels yes that sounds right - because the tumour produces excess growth hormone and the liver converst this into IGF-1. It is the IGF-1 that messes things up in the body, I beleive. This is why it is improtant to measure the IGF-1 as it is a proxy for the growth hormone levels. (if your tumour has produced a lot of GH then IGF-1 goes up and vice versa). Also, in terms of measuring the blood, growth hormone levels change throughout the day whereas IGF-1 is fairly constant. Therefore it is more reliable and meaningful to measure IGF-1.

      I would have thought that doing some cardio / weights at the gym would be OK and probably encouraged by your doctor. 

      Take good care!

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    • Posted

      Hi, I would like to share what I am going through. May be u can help me. I am 28 years old female.

      I have 2 microadenomas one is producing prolactine diagnosed 3 weeks ago for which taking cabergoline and noticed slightly enlarged hand, like thick bone then doctor said it means the other one producing GH and ifg-1 test was carried out.

      My IFG-1 result came yesterday it is 269.7ng/ml is it too much high that require surgery? Is medication enough to handle this much elevation.

      Thanks

      Reema

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    • Posted

      hi

      it is good that you are already seeing a doctor about this and that you have started treatment. that is already a positive step in the right direction. it is also excellent news that yours are micro adenomas. that means that they are lessthan 10 mm across. research indicates that it is easier to treat micro adenomas than macro adenomas.

      but everyone is different and everyone's tumour is different therefore you will have to be guided by your endocrinologist about the medications and the blood test results. please do look at the information on the pituitary foundation website for other information.

      best wishes

       

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