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JenS

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Everything posted by JenS

  1. JenS

    Adrenal Gland Tumor

    What type of pituitary tumor did you have and was it ever treated (sad to ask that, but true - a lot of times they are ignored). Do you get copies of all your testing, MRIs and reports - and did you get pathology if you had surgery? Are you being followed by a pituitary center and a neuro-endo? Have you been tested at all for MEN? Multiple endocrine neoplasia? How is your ACTH? Lung tumors tend to throw off more ACTH if they are carcinoid and there are blood tests for carcinoid - have you had those tests. You have had the PET scan what about an octreotide? Why are you on pred? Is that your post-op replacement? Pred can have a lot of symptoms - how much are you taking?
  2. The dex suppression test is a lousy test of exclusion. Most of us have failed it (myself included) and found later we did have the disease. So I am not a fan of the test. The blood tests should have been 8am fasting - so that is incorrect. You are actually a bit low. Midnights are supposed to be much lower than a morning reading. Your midnights were higher than your morning reading. The doc should have picked that one up.
  3. Wow I have never heard of a neck scan showing a pituitary lesion! I don't know what your lab ranges are (every lab differs) but at my labs, 150 really high so I would get a copy so you can see the range - some end at 34 (the better, more sensitive test) and others at 50 - the test most endos order. If your endo is telling you that the lesion is tiny blah blah blah get to a pituitary center quick - your endo is an endiot - and has no idea what he is saying. Yeah, sometimes they cannot be seen but the tests show you have an issue - you need treatment after more testing. Parathyroid glands can be funny - my issue is after two thyroid surgeries, I only have one left and it is struggling. So I have low PTH, high urine cal, and my cal sometimes dips low - so it just comes and goes - it makes ya feel like poo. I would get the parathyroid thing taken care of ASAP - even though the cushing's will effect bone, the parathyroid stuff will do it much faster. And the calcium can effect your heart and all - so go for it. Multiple issues make it complex - so make sure you get copies and get a decent doc. I would find a pituitary center.
  4. Psuedo Cushing's is very rare. Cushing's is more likely - and anxiety is actually a symptom - as well as the heart problems, weight gain and all. It is more likely that the cortisol is causing the anxiety rather than anxiety is causing the Cushing's (psuedo is actually depression causing Cushing's, not anxiety). Make sure you read up on testing so you get it done properly - correct times, correct methods (keep jugs cold, ACTH done right etc) and get copies of everything so you know what is going on.
  5. Jennifer, New Jersey Pituitary Surgery 2004 Bilateral Adrenalectomy 2006 Radiation in the future for highly elevated ACTH levels.
  6. JenS

    So, he just wants me to blast my body with HC, weight etc. be damned - and forget everything else. I am less than happy.

  7. JenS

    I saw Dr Snyder today. He told me I never had Cushings ever and that my pathology was normal (he considers cortitroph hyperplasia even if it is ACTH secreting not to be a source of Cushing's) so in his mind, my BLA was medically unnecessary. That being said, I now only need to boost my cortisol up and I would feel better. This completely ignores my ACTH that has been rising anyway, and is a...

  8. JenS

    Hello Hope/Maggie Mae!

  9. Recently discovered that a relative thought to have died of thyroid cancer died of an adrenal tumor. Makes you think, huh?

    1. zoe

      zoe

      curious--was the tumor cancerous or cause some type of complication?

    2. JenS

      JenS

      It killed her at a young age - but the family has no real idea. But they think she was really sick, and I am not sick at all.

  10. There is a whole thread on here about depo and Cushing's. I had my tumor show up beforehand, but it was only after the depo that my symptoms went, well, all to heck...and my weight went totally out of control. Of course, it was all my fault. My gyne told me I should take up tennis (true story). Old thread - http://cushings.invisionzone.com/index.php...hl=depo+provera
  11. Good luck on your surgery!

  12. Hey Adina - start posting so people can get to know you and get the support that you need!

  13. JenS

    Hi Anne! You are one complicated case! Keep on trucking.

  14. Would I be too much of a PITA to say... one with survivor, one without, and no years as that gets too complicated? Otherwise Amber is going to look funny wearing this - a year on the shirt, a year on her neck... it is going to cause accidents. Good thing she is in the business of helping them...
  15. I like the ribbon plain... but that is just me... I will get a few for gifts! Of course, large sizes... Wonder if my brother will wear one?
  16. Well, as much as I like the original... probably would be easier just to do a plain ribbon or without the word survivor - just Cushing's in the hump position and we would know where the inspiration came from. At least it may make people ask questions - both the hump and the position of the ribbon might make people think a bit... I hope. Might have to make the website a bit bigger - my prototype got too small.
  17. I think on the hump should be the "Amber tattoo". How would that be?
  18. It worked Mary - and I made up a prototype for ya!
  19. Can we get a shirt that says "Got Hump" and then under that www.cushings-help.com" ? Or could that be misconstrued... Love all your stuff... thanks Mary... I wear my bracelet every day.
  20. Yeah... actually, he wrote some good quotes like: "Most patients go from one doctor to another before Cushing's disease is diagnosed." Isn't that the truth... so while the title is a bit... unfortunate, it actually is a good article.
  21. Excellent extract... makes you wonder if they are going to study Cushing's in this aspect - ah but we are all depressed. Thank you for posting this.
  22. Here is a link. http://www.ironoverload.org/treatment.html Did he have a liver biopsy to confirm the diagnosis? Has the family all been tested for it? Good luck to him.
  23. There is only one treatment for hemachromatosis - and that is regular blood draws to stop the damage. For a while, my one cousin had to give a pint a week. Now they go less often, but still must go. Your brother needs to see someone who knows how to treat this! Why was he diagnosed and not treated! It is an easy treatment, relatively, and the consequences, as you can see, are awful. I hope he gets another opinion. He suffered needlessly.
  24. Is he still being treated - as in- drawing off blood to control it? I am not very familiar with it. I did a lot of research at first but now I don't remember much. My cousins live far away from me so I don't talk to them much. I know one is very healthy and the other has more problems. The third brother did not get it. Bulging eyes is usally indicative of thyroid disease... I suggest you gently get him in to be tested. That can be treated - Grave's disease. But just in case it is something else - no sense in messing around with the eyes.
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