Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Thank you, Joanne One more thing for me to think about. The endocrinologists around here are a tough lot. The last one I saw was so arrogant that he said he had the article I had with me, written by Cohen on Mito In Adults, but that he had not read it and would not read it. Thanks again. Regards all Sunny > > Hi Sunny, > > Yeah you are right. I have enought thyroid hormone. I am on the low > end of normal. So for years I was told that I was normal. It is > actually something that I researched myself. I found a treatment and > a dr that would write an rx for me. I was pretty desperate at the > time. If you are interested take a look at wilsonsyndrome.com. It > is not exactly what I have, but it got me started in the right > direction. I take Liothyronine(T-3). T-3 is the active form of the > thyroid hormone. What is actually being used in the cells. In Nov. > of 2003 I went to an endocrinologist down at UCSF. He thought he > was going to prove me wrong. He ran a whole battery of tests and > found out that what I was doing was working. I was taking 60 mcg > twice a day of compounded T-3 (which is a very high dosage) and my > TSH was normal. It should have been dramatically suppressed. That > is when he told me. " I don't know why, but you are thyroid hormone > resistent. " Somehow I am not using my thyroid hormone effectively. > The medicine has helped a lot. I even had 3 years that were > basically symptom free. I hope that explains it. > Joanne > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 I'm glad to find out that I am not the only one that has had physician problems, my Grandson " fired " my PCP and got me one that cared what was going on in your life. After Dr. Baker (my orthopaedic doctor of over 30 years came up with a diagnosis of Mytochondrial Dysfunction and not Parkinsons as my neurologist kept insisting that I had, even after two ER trips due to the Parksinsons meds. He refused to talk to Dr. Baker about it and he hung up on him, so Dr. Baker called me and told me of his findings. I told him about my cousin passing away due being in such a deterioated condition from over ten years of being treated for Parkinsons, which she did not have! Her neurologist retired and the one that took her case informed her of that and took her off all the Parkinsons meds, but it ws too late for her. I now am afraid that some type of Mytochondrial Dysfunction is what was wrong with my 48 year old son, I lost him very suddenly August 25th. Dr. Baker wanted me to let him find a different and open-minded neurologist (which he did) and as soon as Dr. Welch saw me he started pulling me off all my Parkinsons meds and he said he was in complete accord with Dr. Baker. I have so many small (I guess) things that need taken care of and Dr. Baker is working on trying to point me in the right direction for which orthopaedic condition that needs to be prioritzed before I can have too much in-depth testing done for Mytochondrial. I will be having some out-patient testing done thursday (one of which is a follow-up brain MRI) I had a gamma knife done in 1999 due to two entirely different types of brain tumors. They blamed my seizures on the brain tumors?? I now require a brace on my right foot (as it turns in like a clubbed foot) and then I guess my right knee is " shot " but even thought my health has improved since I am no longer taking any Parkinson meds nut quoting Dr. Baker, my condition is too fragile to even consider a total knee now or in the near future, so he is referring me to one of the doctors in his group. He referred me to another one for my right hand and I have surgery scheduled April first to take care of a nerve that is caught up someway and they need to get it released so I can regain use of my hand as it is difficult to use a cane with a bum had. Let alone trying to sign a check?? I will let you know what happens. Dolores bionicgirl_bionic pjcrook@...> wrote: I know what you mean. After the Dr. who diagnosed me changed jobs, I went to another dr there at the endocrinology clinic at UCSF. This guy was in his 80's and acted like he hadn't picked up a textbook since medical school. Talk about a closed mind. He declared " There is no such thing! " He then refused to treat me. Which was fine with me. He kept spouting off declarations which I refuted one by one. It actually felt good to have the knowledge to be able to set him straight. I usually am not so bold with drs, but this one just set me off. And I knew what was working for me and had done my research to back up my arguments. Even though he was so rude, I left feeling vindicated because I was able to present my case clearly and concisely. Halleluja ! No brain fog that day. Besides I knew I would never be seeing him again. LOL Joanne Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Thanks, Joanne. Not seeing them again is the best solution, of course. But, we should not have to go through that kind of stuff. Since it does happen, it is good to know others have the same experiences. It reinforces my self concept that I am a reasonable person who has unusual physical symptoms and an irregularity or disease that they just don't know enough about yet. And, for many medical people admitting that they just don't know everything is beyond their limited personalities. That felt good! Sorry if it sounded like ranting, or a broken record, but the mental damage that these experiences can inflict can be great. Regards Sunny > > I know what you mean. After the Dr. who diagnosed me changed jobs, I > went to another dr there at the endocrinology clinic at UCSF. This > guy was in his 80's and acted like he hadn't picked up a textbook > since medical school. Talk about a closed mind. He declared " There > is no such thing! " He then refused to treat me. Which was fine with > me. He kept spouting off declarations which I refuted one by one. > It actually felt good to have the knowledge to be able to set him > straight. I usually am not so bold with drs, but this one just set > me off. And I knew what was working for me and had done my research > to back up my arguments. Even though he was so rude, I left feeling > vindicated because I was able to present my case clearly and > concisely. Halleluja ! No brain fog that day. Besides I knew I > would never be seeing him again. LOL > > Joanne > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Rant away!!! Sometimes it feels good. I know what you mean about drs and their attitudes. That is something that this group has really helped me with. I know there are others out there going throught the same thing I am going through. In fact it is more common than not. When drs especially and sometimes family and friends treat you like your problems are all " in your head " there are times when you get so you start to believe them. I wonder how many people are out there with that terrible burden on their shoulders still? When in fact it is something that is totally out of their control. OK, There is MY rant!!! ) Joanne Quote Link to comment Share on other sites More sharing options...
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