Jump to content


Member of the 1000 Post Club
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About happy41

  • Rank
    Member of the 1000 Post

Contact Methods

  • Website URL
  • ICQ

Profile Information

  • Gender
  • Interests
    Gardening, astronomy

Recent Profile Visitors

2,823 profile views
  1. I tired completeing it, but It keeps kicking me back to the beginning of the survey when I complete question number 27. Do other folks get a "completed" page or the same thing?
  2. There is a belief by some European researchers that this is indeed the case. Thus cabergoline. My dopamine levels were off the charts low. The primary researcher on this issue is in the Netherlands. There are some papers on research with frogs that shows low dopamine causes familial pituitary and other endocrine tumors. Interestingly the pituitary tumors that are described are in the center of the pituitary with tentacles reaching throughout the pit, which sounds exactly like what some of our tumors look like.
  3. Seems like that might be a real impediment to Cushings "declaring" itself. When the kidneys have a gag order.
  4. Excess cortisol causes small blood vessels to overgrow. the kidney is especially reliant on those vessels to work properly. The lower GFR is not surprising. The interesting question is whether a lower GFR can lower UFC results, masking the severity of Cushings in some people. I suspect it can. The consensus guidelines only address severe kidney disease, but other studies show a linear relationship.
  5. With your history, I think that psychologically, it would be really important to go home and think about your options rather than rush right into surgery. I didn't realize that you have had two spinal fusions. Was this the result of a car accident or loss of bone causing problems, because the second can be caused by Cushings. Maybe this will help your husband. Doctors are very specialized and what we really want from them is their experience. If you wanted to file a patent, you wouldn't hire a lawyer who does divorces or DUIs. The divorce lawyer is going to know what happens in divorces and wht the pitfalls there are. JD or no, he/she is going to be clueless about what happens in the patent office. The divorce lawyer is probably not going to know a whole lot more than you, and will cost you alot of money. Or on a more manly note, you aren't going to hire an electrician to do serious plumbing or vice verse. Both may work in a house, but they are not interchangeable -- at least if you want to have work done to code. As you said, this doctor doesn't know anything about Cushings. So, even if you tell him what tests to order (and are you really sure you know what tests to order for yourself), what are you going to do if you get an abnormal response? He's not going to know how to get approval of GH from the insurer, he's not going to know what to dose, he's not going to know what follow up tests to order to make sure the treatment is working and dosed properly. If you have Cushings, a neurosurgeon is not going to take a referral from an abdominal surgeon -- he's going to want a referral from an endo. Would you really trust a doctor to self-refer on an adrenalectomy? Who's going to monitor you steroid levels after surgery? If you want to be your own doctor and write your own prescriptions, why not just go down to Mexico and buy your own drugs off of the street? Make your own guess on the dosing. Monitor yourself with mail order tests. Because in terms of safety level, I don't think there is much of a difference between being your own doctor and being your own doctor and having some shill with an MD sign off on your labs and prescriptions. Your husband wouldn't want you going to Mexico and coming up with your own home brew treatment, would he? If you don't still have cushings, he is not going to be able to say so with the definitiveness that will allow you to push other doctors to pursue another diagnosis and not say -- well, but you had cushings, are you sure you aren't just not cured?"
  6. I would go to Seattle if I were in your shoes. I would get what testing I could get done and then I would take some time to digest it and make a good decision that you feel comfortable with. I don't think you have a doctor nearby who has a clue. I went through your posts this afternoon. By what you said, you had a bypass surgery without the doctor doing the workup he needed to do. I only saw two positive test results for Cushings -- while they were diagnostic, I don't think I have seen anyone here cleared for surgery on just two test results (IPSS is not used for diagnosing Cushings, it is used to figure out if the cause is pituitary or adrenal). The surgeon did what you said is a very aggressive first surgery. The more aggressive the pit surgery, the more likely you are to lose pituitary function -- growth hormone, female hormones and thyroid hormones. I have not seen you post any test results checking how you are doing on those hormones. I assume that nobody is checking them. Growth hormone and thyroid hormone deficiencies can cause substantial fatigue and muscle pain -- I know because I have experienced both. symptom-wise they and fibro can seem similar, but treatment-wise, they are two very different things. First of all, you need to have a diagnosis that is based on facts, including solid labwork. If all you get in Seattle is someone checking your pituitary hormones and seeing where you stand there, the trip is worth it. You may find out that you are very growth hormone deficient and that is your main problem. If you are not getting any thyroid replacement and have lost TSH, you really need to get replacements. If you get some better data on where you stand in terms of cushings, all the better. With respect to a failed surgery (or cushings in general), from my experience it is very hard to predict how long you can "hold on" before you have problems. I had several endos think I did not have cushings "bad enough" to warrant my first surgery. In retrospect, was clear from how poorly I tolerated surgery that it probably would have been better for me to have gone on keto and improved my condition before having surgery. My BLA I tolerated the surgery very, very well. But, even though I didn't have fantastically bad test results, my kidney function became impaired -- enough to meet the diagnostic criteria for chronic kidney disease. I goofed around with not so great local doctors after the first surgery and I really regret it. You may find yourself having waited six months for this doctor's treatment, gotten sicker and maybe then you won't be well enough to make the trip to Seattle. You never know. Make sure YOU feel comfortable that YOU understand what the doctors are recommending, why and that you feel comfortable that they have the expertise to make good recommendations. You are the person who has to live with their decisions, not them. Hang in there!!!
  7. Here is the site for clinical trials. www.clinicaltrials.gov After even a successful Cushings surgery, one can (will) have muscle pain. That doesn't mean that you have fibro. There is something called steroid myopathy (which you can have if you still have Cushings) and it takes time to heal. If you are growth hormone deficient or thyroid deficient, you will have muscle pain and weakness and that will be fixed with appropriate hormone replacement. One of your posts indicated that the surgeon took most of the pit. Are you sure that you are not hypopit? Are you sure that you are not really, really low on thyroid. You can get pretty sick if that is not treated. Are your current doctors smart enough to test something beyond TSH? Fibro is typically treated by a pain specialist, a rheumatologist, or a neurologist. I don't understand why a general surgeon would be treating it.
  8. Reputable research includes appointing an instituitional review board and reporting it in a registry of clinical trials. Clinical trials are closely regulated. Normally, clinical trials have a "principal investigator" who is someone who specializes in the condition being studied. The reference here looks to me to be a person who is a general surgeon who does abdominal surgery. This doesn't look to me like someone who would normally be supervising a Cushing's study, unless maybe related to techniques for adrenalectomy. but he seems to be more of a surgeon you would see to have your hemorrhoids fixed. http://www.ratemds.com/doctor-ratings/1348...CALOOSA-AL.html I guess I would be really surprised about a doctor in Alabama that nobody has heard about having a study with 100 Cushing's patients in it. Dr. F's slides at the Magic Foundation two years ago covered something like 80 patients. So, this guy would have more cushing's patients than Dr. F and nobody has heard of him????? I have not seen any clinical trial reported in the NIH database seeking to evaluate the use of celebrex and mobic to treat Cushing's disease. I have spent an enormous amount of time looking at what has been published in the medical literature related to cushings. I have never seen an article equating Cushing's with fibromyalgia. In fact, from what I understand, fibro patients can have LOW cortisol, not high. As I understand it, Fibromyalgia is primarily a neurologic disorder with respect to how the body perceives pain. It is related to something called "substance P." I has nothing do to with Cushings. So I have no idea of how fibromyalgia would "cause" Cushings. So, I guess the real question is whether you think you never had cushings and want to investigate other diagnoses. Whether that makes sense depends on how strong your original test results were and if you think that your symptoms are now different than what they were before surgery. And what your current test results are. It sounds to me that the guy is really telling you that he doesn't think you have Cushings, but have fibro instead, and wants to treat the fibro. you are scheduled for Seattle this weekend. Why not go to seattle, see what your numbers are, and make an informed choice based on the test results? Has this guy actually examined you and seen your medical records??? Maybe you can post his research and folks can make more sense of what the guy is saying.
  9. No, healthcare in the UK does not pay for everything. My understanding is that to make everything "fair" for everything outside of primary care they take the cost of a treatment and multiply it by the numbers of years of additional high quality life it will gain you, divided by the number of good years you have. They call this a "QUALY." If it costs more than $50k a year (or something like that -- I don't remember the actual number), the treatment is denied as too expensive. Most advanced cancer medications don't meet the cutoff, so they have been making exceptions on a drug by drug basis. Her drug hasn't gotten through the bureaucracy yet, so she is SOL. I suspect this is why Cushings folks in the UK have such a hard time getting testing and treatment and GH. This is what the treatment "boards" on the exchanges in the US health care bill was modeled after -- it is effective at lowering costs -- of course at the expense of those who have uncommon diseases who don't have good lobbying organizations. If you don't have a good lobbying group, and your illness is weird and the treatment expensive, you can eventually expect to pay on your own.
  10. Mary, thank you for all that you do for Cushings! It appears to me that we DO have federal funding for Cushings research -- and, for a rare disease, pretty substantial funding -- about $2 million a year. Or about $1000 per person who is diagnosed with Cushings in the US each year. It is spent supporting Dr. Neiman at NIH and her staff. I suspect that a substantial amount of it is spent for Dr. Neiman to travel to conferences and provide educational talks to other endocrines and to pay for the endocrine fellows in their clinic. If people think there are other, higher priorities, they need to contact the head of NIH and ask. His email address is francis.collins@nih.gov. He is the geneticist who found the gene that causes MEN I. So he should know what cushing's is. Items that I think should be a priority would be: 1. Funding to allow Dr. L and Dr. F to compile and publish the results of their research on what tests work well for diagnosing cyclic cushings and what tests do not work as well. I would bet that $100k each would be more than enough to each would allow them to hire a full time researcher to analyze the data and get a publishable article put together. 2. Funding to characterize the hyperplasia that cyclics seem to have both with respect to the pituitary and adrenal glands. There is research going on in Europe that hypothesizes that it is caused by deficiencies in dopamine, which would dovetail well with the use of cabergoline for some cushing's patients. MDA, Swedish and Elmbrook undoubtedly have enough pathology samples from us to provide a pathologist with plenty of "stuff" to work with. I bet a year's worth of a full time pathologist in a government funded situation and support would not cost more than $300k. 3. Genetic testing with family groups in order to identify the gene that causes cyclic cushings -- since it seems to have a high incidence of multiple family members who are affected. I have less of an idea of what that would cost, but it did not take hundreds of families to find the gene for MEN I. I suspect that we have enough families for such a study just with the people who participate on this board. In short, I think that if we gave up the "training" funding and put it into research for a couple years, the trainers would have something far more useful to be talking about and training new endos in.
  11. http://jcem.endojournals.org/cgi/content/abstract/93/5/1526 Download the full version. But get a different doc. If you have to argue this hard, you need to see someone else.
  12. Sooo how did the appt on the 25th go?!?So excited to hear!! Who did you meet with?!? Hope it is good news :)

  13. Do you have the link for this? Some of our "favorite" endos and surgeons have email addresses and it might be useful to forward this to them to remind them of the risks of failure to diagnose.
  • Create New...