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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. Oh man if we are related, that would be funny! If you find the name, let me know. I have tons and tons of paperwork on the Putnams since my great-grandmother was a Putman and one of her sisters did a whole geneology in the 1930's. They actually went around and found many of the grave stones to get information. They spread out all over too - going to Ohio and to Vermont. I have not been able to digest the whole thing. There are tons of letters and a lot of anecdotal information which makes it very interesting. I have only found an aunt that died of an adrenal tumor so far. Looking at the tree though you can see that in some cases only 50% of the children survived but that may have been par for the course at the time. My grandfather lost his older brother to malaria as a baby in Massachusetts (who knew that was in Massachusetts!) and my grandfather later traveled the world and got the same disease himself. I am still entering data so I have no really looked at the full picture yet.
  7. I have been working on my family tree too. I did what Susan did with the DNA and found a lot of distant cousins as I did the health and historical data. So I needed more of a tree so I started one in ancestry.com as well and using a lot of the rootsweb.com free and family sources, I got parts of my family back to the 1600's to England and Germany. The parts in Russia were killed off in the revolution so I am not sure how much information I can get from them. I am still tracking the Swedes. I have a a big family connection to the Putnam family that moved here from Aston Abbots founded Salem, Mass - one was General Israel Putnam who was a revolutionary army general and others were the involved in the witchcraft trials (ack!). The search is fun but it does get rather wild when your brain is fuzzed.
  8. 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.

  9. 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...

  10. JenS

    Hello Hope/Maggie Mae!

  11. 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.

  12. Even the new guidelines that came out said three tests - and if clinical suspicion is high, continue to test, in the case if that rare cyclical thing... oooh. Find a new endo - that one has not a single clue. Not one.
  13. 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
  14. Patient post BLA 2 years ago has and ACTH of over 2000 and rising, and the patient has muscle weakness, hyperpigmentation, MRI comes back clear (Cushing's diagnosis was ACTH secreting corticotroph hyperplasia and MRI before pituitary surgery was also "clear"), IPSS confirmed cells are still there. Is this Nelson's, and should any treatment be done? If so, what? Thank you.
  15. Thanks Ami... At least some of them seem to think it may not be so rare - maybe they should google and find us!
  16. And we all KNOW the dex test is SOOOOOO reliable... so that is a good thing that it is easy! HAH. (note to self - avoid that doc...) Thanks for posting this Mary!
  17. http://jcem.endojournals.org/cgi/content/abstract/92/5/1729 the update Measurement of Serum Free Cortisol Shows Discordant Responsivity to Stress and Dynamic Evaluation Mirjam Christ-Crain1, Sukhdeep Jutla1, Isabelle Widmer, Orestes Couppis, Caroline K?nig, Hans Pargger, Jardena Puder, Ray Edwards, Beat M?ller and Ashley B. Grossman Department of Endocrinology (M.C.-C., S.J., O.C., A.B.G.), Barts and The London, Queen Mary?s School of Medicine, University of London, London E1 2AD, United Kingdom; NETRIA (R.E.), St. Bartholomew?s Hospital, London EC1A 7BE, United Kingdom; and Department of Endocrinology (I.W., C.K., B.M.) and Surgical Intensive Care (H.P.), University Hospitals, CH-4031 Basel, Switzerland; and Department of Endocrinology (J.P.), University Hospital, CH-1011 Lausanne, Switzerland Address all correspondence and requests for reprints to: Dr. M. Christ-Crain, Department of Endocrinology, Barts and The London, Queen Mary?s School of Medicine, University of London, London E1 2AD, United Kingdom. Context: Routinely available assays of adrenal function measure serum total cortisol (TC) and not the biologically active free cortisol (FC). However, there are few data on FC levels during surgical stress and in response to standard pharmacological tests. Objective: Our objective was to evaluate TC and FC levels in different states of physical stress. Design and Setting: We conducted a prospective observational study in a university hospital. Participants and Main Outcome Measures: We measured TC and FC levels in 64 patients: group A, 17 healthy controls without stress; group B, 23 medical patients with moderate stress; and group C, 24 surgical patients undergoing coronary bypass grafting. Cortisol levels in group C were measured basally and at several time points thereafter and were compared with responsivity to a pharmacological dose of ACTH. FC was measured using equilibrium dialysis. Results: In group C patients after extubation, the relative increase above basal FC was higher than the increase in TC levels (399 ? 266 vs. 247 ? 132% of initial values, respectively; mean ? SD; P = 0.02) and then fell more markedly, FC levels falling to 67 ? 49% and TC levels to 79 ? 36% (P = 0.04). After ACTH stimulation, TC levels increased to 680 ? 168 nmol/liter, which was similar to the increase with major stress (811 ? 268 nmol/liter). In contrast, FC levels increased to 55 ? 16 nmol/liter after ACTH stimulation but significantly greater with surgical stress to 108 ? 56 nmol/liter (P < 0.001). Conclusion: The more pronounced increase in FC seen during stress as compared with the ACTH test suggests that this test does not adequately anticipate the FC levels needed during severe stress.
  18. http://jcem.endojournals.org/cgi/content/a.../jc.2006-2361v1 MEASUREMENT OF SERUM FREE CORTISOL SHOWS DISCORDANT RESPONSIVITY TO STRESS AND DYNAMIC EVALUATION Mirjam Christ-Crain*, Sukhdeep Jutla, Isabelle Widmer, Orestes Couppis, Caroline K?nig, Hans Pargger, Jardena Puder, Ray Edwards, Beat M?ller, and Ashley B. Grossman Department of Endocrinology, Barts and the London, Queen Mary School of Medicine, University of London, London, UK (M.C.-C., S.J., O.C., A.B.G.), NETRIA, St. Bartholomew's Hospital, London, UK (R.E.), and Department of Endocrinology and Surgical Intensive Care, University Hospitals Basel, (I.W., C.K., H. P., B.M.) and Lausanne (J.P), Switzerland Context: Routinely available assays of adrenal function measure serum total cortisol (TC) and not the biologically active free cortisol (FC). However, there are few data on FC levels during surgical stress and in response to standard pharmacological tests. Objective: To evaluate TC and FC levels in different states of physical stress. Design and Setting: Prospective observational study in a University Hospital. Participants and main outcome measures: We measured TC and FC levels in 64 patients: A, 17 healthy controls without stress; B, 23 medical patients with moderate stress; and C, 24 surgical patients undergoing coronary by-pass grafting. Cortisol levels in group C were measured basally and at several time points thereafter, and were compared to responsivity to a pharmacological dose of adrenocorticotropin (ACTH). FC was measured using equilibrium dialysis. Results: In group C patients after extubation, the relative increase above basal FC was higher than the increase in TC levels (399?266% versus 247?132% of initial values, respectively; mean ? standard deviation; P=0.02), and then fell more markedly, FC levels falling to 67?49% and TC levels to 79?36% (P=0.04). After ACTH stimulation, TC levels increased to 680?168 nmol/L, which was similar to the increase with major stress (811?268 nmol/L). In contrast, FC levels increased to 55?16 nmol/L after ACTH stimulation but significantly greater with surgical stress to 108?56 nmol/L (P<0.001). Conclusion: The more pronounced increase in FC seen during stress as compared to the ACTH test suggests that this test does not adequately anticipate the FC levels needed during severe stress. Key words: Serum free cortisol ? Surgery ? Stress ? Cortisol binding globulin
  19. Hmmm... but my ovaries are gone, my thyroid is gone - I am hypo hypo hypo this and that... yet my ACTH keeps going up and up, and my path was hyperplasia. Am I an exception (*cough*) or is something else going on... they keep reading my MRIs as post op, normal... but trust is lacking.
  20. With Cushing's being quote rare unquote and testing for it so hard to get and if you happen to be cyclical... well, a person can languish for years, ill, while eating healthy yet having a body that says anything but. How many of us were called liars. I look at my mom who is drinking and smoking herself literally to death, having strokes and diabetes and eye problems all directly related to her behaviour... and then I see us, who have absolutely no control but, with our testing that can be iffy and few doctors on our side especially if you suppress, I could see us getting penalized and there would be nothing that anyone could do, until diagnosis, that could stop it. And already we suffer with jobs... I wonder if they will refund once they find out it was involuntary (due to a legitimate disease?). Nah... life is unfair, and this seems to be the new discrimination.
  21. And just how do they know what stage it is in - like you can know with a pit tumor!!! Hah that is ridiculous... The symptoms can be so subtle or mistaken as other things, he probably did not have a clue - like not sleeping...
  22. My cardiologist told me to eat potato chips... I thought the receptionist was going to keel over and die with shock (she has no idea about my adrenals)... I was raised on a low salt diet and when I moved to Japan, everything tasted so salty to me... but the vegetables (as are most vegetables I tasted outside the US) were fantastic as they are raised for taste, not travel... so are the fruits.
  23. What is ... a shame though is that so many of us have shown is that the DSTs have been the most unreliable tests and yet... those are getting the most prominent "play". It is easier than collecting pee. So using that, now it will be up to discretion of the doctor to continue testing - and based on that, heck, I had to see 10 endos. I like the multiple tests - but I have recently overheard in the office I see locally that the doc will use the low dose DST, give improper directions (wrong time to take pill, wrong time to show up at lab, not tell her it is fasting) and tell her to come back in 6 months... somehow, I do not feel most will get the care that they need and it is sad when this disease has very very bad potential effects on the body.
  24. That is really interesting... but... man then I should have scored high!!! Even my mom considered me boring... dang.
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