New and haven't a clue!

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Hello everyone! I am new here. I went searching for a forum where someone may understand what I'm going through. I had spinal surgery in August 2017 and was placed on a special floor because my heart rate dropped extremely low and my blood work was coming back abnormal. I was told to follow up with an endocrinologist. So here's what's showing up. My cortisol levels are very high, my tsh is low and my atch is high. An adrenal tumor was found while a ct of my spine was done. I have an appt with my endocrinologist next week. I'm scared. But more than that I'm so tired of being tired and weak and feeling like a failure of a mother and wife!!!

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  • Posted

    Hi Rachel

    My name is Rachel and I’ve had an adrenal tumour. I’m sorry for you it’s an awful worry but all I will say is malignant ones are very very rare only 10% of them. So try not to stress too much. Once it’s out you will feel so much better! Are they taking it out? X

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    • Posted

      Thank you! I appreciate all the advise and support! Im trying to educate myself with these issues yet at the same time not sure what I have... From everything I have read, my blood work and symptoms don't add up to me😕. I will know more on Monday. 🙏

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  • Posted

    I really do not know what to tell you, only 'try not to be scared' 'try very hard to be patient'. Try to get as much help as you can. Physical help and emotional support. I keep my fingers cross for your and make a list of things you should ask your doctor. Ask how big is the tumor. If it needs surgery. Tell him you need a relief to your physical symptoms.Also that you are a mother and a wife and etc, (whatever you need to say in your circumstances). Tell him calmly a list of your symptoms (have a list of them to show him).  Take camomile tea now and again when your anxiety increases, 3 times a day for instance. And above all be happy that the reason for your ill feeling has been found. It is all because the tumor. You will come out of it. Patience is necessary at this time in your life. I hope somebody else can bring peace to your life. I have tried to help from the distance, knowing how difficult is to live with ill health.

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    • Posted

      Thank you for the advise. I will keep everyone posted. I am grateful to have found this forum. I need the support. I will keep all of you in my thoughts and prayers!
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    • Posted

      I just had my tumor out two days ago. Trust me  it has been ruining my life for last an year and a half.  At least now I know what was the reason.  Try to find out the size of the tumor as its very important.  If it's small they may leave it  and watch it unless it's functioning one ,meaning producing hormones.  Best wishes. 

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    • Posted

      Thank you for replying. Im under the impression that it is a functioning tumor because my cortisol levels have been 1st time they were checked in September it was 31.0 and last week it was 28.1

      Along with that my tsh is low and my acth (I believe that's what it's called) is also high. Something I am going to bring up to my dr on Monday is I looked back into my lab results for the last few years and noticed that my creatine levels are abnormal, have been for a good while. Don't know if that's all important since I haven't had any drs bring it up. I will find out the size of the tumor on Monday. Will keep you posted. Thanks again for replying.

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    • Posted

      Irene, what kind of adrenal tumor did u have. They just found a 5.6 cm mass on my right adrenal gland. I’ve had high blood pressure, excessive sweating, I’m type 2 diabetic. I’m having my 24 hour urine test done tomorrow. Doctor is saying he thinks it’s a pheochromocytoma. He doesn’t not believe it is cancer, but I’m still extremely scared. He told me I need to have surgery to have it removed because of the size, and also because I’m having symptoms. No matter how many people I’ve spoken to about this, I’ve been told prob not cancer, but I don’t know how to get this out of my head! 

       

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  • Posted

    Why in the world would you feel like a failure

    Because you have an adrenal tumor?

    Well, please don't

    I have to warn you, having an adrenalectomy

    Is rather risky

    And some patients die a few years on...

    The main thing is doing research to know

    What treatments may work

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    • Posted

      No it isn’t risky at all  if you get the right surgeon.  I had a huge tumour (15 cms) and I’m now healthy and well, mine also  came out safety and easily.  And patients don’t die a few years on (only if it’s cancer that has spread somewhere else) I also don’t think your post is very helpful or supportive at all!!! 
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    • Posted

      Thank you for replying. I feel like a failure because it has become so hard to physically and mentally do normal everyday tasks as well as being a mom of 3. I have an appt with an endocrinologist on Monday. I am praying that she is able to help me and let me know what we are going to do about the tumor. My symptoms and blood work have left me confused. I just don't quite know what exactly is wrong. Im pretty sure that my dr will order more imaging to check the tumor. Im glad that im not alone in being tired of being tired! That there are people that do understand. 😊

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    • Posted

      Unfortunately the best way to treat functioning tumor is surgery. I wish there was another way around but there is not. I had to go through surgery 
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    • Posted

      Rachel, I had terrible, terrible fatigue.  By the end of the day I was sitting on the chair feeling like 100 year old lady. I could not force myself to get up and fix something to eat for my 14 and 2.5 years old children.  So trust me I know how you feel.  Don't worry,I'm sure they will see if the tumor causes all your symptoms.  I'm 2 days post op. And I'm sure I will feel better.  Thanks to this forum. People here were very supportive and open hearted.  You are not alone here. 

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    • Posted

      Well, it is good you had a good surgeon

      But I am confused because you said you had a tumor but then you said you got your tumor out

      Either way, I know it is difficult

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    • Posted

      You could ask your doctor about

      Addison's

      There is something called

      Nelson's syndrome that sometimes develops

      But I don't know much about

      But low dose hydrocortisone

      May help

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    • Posted

      Yes mine was a 15cm benight one on my adrenal gland it had to come out my adrenal and the tumour now all cured feel great and I’m healthy ❤️
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    • Posted

      Hi Rachel

      Im a little more awake now

      Your tiredness could be because

      Of adrenal insufficiency

      This happens sometimes with

      Tumors in the adrenal glands

      It may be a form of Addisons

      Your lucky they found the tumor on

      The ct scan

      I wish you good luck

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