Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi Once again, our boys sound similar! I agree with the components of ADHD, but I don’t think that’s the source—just a symptom! I SO know what you mean about Nick telling you he loves you one minute and punching you 5 minutes later. Noah is the same way. He would have a fit about something like his brother spelling his name. That’s all it takes! We didn’t go with a stimulant, but we did go with treating the Anxiety/attempting to treat the OCD. We’ll finish out the Tenex supply we have and will start Prozac today. I’m scared, but I’m hopeful. Lori From: [mailto: ] On Behalf Of stephaniepaige123@... Sent: Monday, May 18, 2009 11:42 AM To: Subject: Re: ( ) Newly Diagnosed Hi Lori, I am so glad to have found someone who is going through the same thing. Its hard to say if the Ritilan is doing any good. I don't think he should have ever been given the dx of ADHD. My older son I ADHD and my two boys are nothing alike as far as personality goes. I knew that dx was wrong from the start. Its really hard to tell with nick. He is so up and down. He can love me and then punch me in about 5 minutes. He had a fit this weekend because his brother spelled his name. Half the time I don't know if I am coming or going with this kid. I personally don't like the stimulant's, I think he is overly stressed and anxious enough he doesn't need a stimulant on top of it. But, he is the type of kid that does flips over the back of the couch for fun. Good luck with doctors, my advice is to go with your gut. I had to keep pushing to get answers. Some docs are all too quick to hand out meds to " wait and see " what happens. Sent via BlackBerry from T-Mobile From: " Lori Lashley " Date: Mon, 18 May 2009 11:20:34 -0700 < > Subject: RE: ( ) Newly Diagnosed Hey We can cry together!! LOL I do think we should find some satisfaction in relief—WHEN we’re there! It sounds like we both have a lot more to go through before we get there! It is DEFINITELY normal to feel the way you do. That I can tell you from experience with my other special needs child! My son has trouble sleeping also. The Tenex certainly hasn’t helped that! He has Respiaradol as needed, but that boggles my mind. Is that the way it was prescribed for Nick too? I was planning to ask for a stimulant today. Have you felt that Ritalin has helped improve? My appointment is today and I just can’t decide how to tackle it… Lori From: [mailto: ] On Behalf Of stephaniepaige123 Sent: Monday, May 18, 2009 9:34 AM Subject: Re: ( ) Newly Diagnosed Hi Lori, My son was given Tenex because he tends not to sleep. He would stay up until all hours doing all sorts of things. He was given the Ritilan becuase he was originally diagnosed as ADHD but then added Respiradol because the other 2 meds weren't working and the doc said we needed to try the " big guns " of meds because she was starting to suspect he was Bipolar. We have another appointment on Friday to look at med adjustments. This is all happening so fast that I feel like I am in a whirlwind. I am still trying to grasp the concept of what this means for Nick. I have to admit that I am dealing a little with denial as well. I am not sure what to think. Is this normal???? I don't know weather to be relieved or to cry. > > Hi > > > > Boy, do our sons sound similar! > > > > I wish I had wonderful advice, but it sounds like you are farther along than > me! My son just started Tenex and Respiradol (as needed at night). I've > seen no improvement and he wants to eat 24/7. He has extreme social issues, > sensory issues, and perseveration/obsession issues. > > > > I'm going to Psych today to talk about meds, and I'm not happy with the > Tenex so far. (Even though I'd heard great things). I'm curious why they > had Nick on Tenex AND Ritilin. One is a stimulant/one is not. I'm > wondering if I should be asking for a combo like that??!! > > > > Well.sorry I'm no help, but I want you know you have a friend in a similar > boat! > > > > Lori > > > > _____ > > From: > [mailto: ] On Behalf Of stephaniepaige123 > Sent: Friday, May 15, 2009 12:10 PM > > Subject: ( ) Newly Diagnosed > > > > > > > > > Hello Everyone, > My name is and my son Nick is newly diagnosed with AS. I am > feeling pretty overwhelmed with this. I am slightly releieved because we now > have answers that seem accurate but worried none the less. > He was first given the DX of ADHD and ODD, then that turned into Biopolar > and now after more extensive testing he was diven the DX of AS. He is 6 1/2 > years old. He is pretty intelligent but will blow up and have tantrums for > the littlest thing. He has sensory issues with the seems on his socks and > has to wear them inside out, he would much rather be naked then anything > else. When he gets into an uncomfortable situation he will transform into > his alter ego " Buggy " his posture, voice and mannerisms change. He has > little to no friends all though he wants them. He has always been the > " difficult child " . He punched a little girl and knocked out her tooth > because she was speaking spanish. I think he couldn't handle the sound. > He is currently taking Tenex, Risperdol, and Rittlin. These meds have not > been adjusted since the new diagnosis. We have a med appointment next week. > I need help, I have no clue what I am doing!! > > Thanks in advance, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Hello Tina, My name is Tina too! And I have a 4yo son diagnosed with HFA this past January. You will be doing a lot of reading....the Internet has tons of information. Enough to get overwhelmed. Others on this list will send you their saved list of resources I'm sure. It's a great group and very active and a wealth of 'been there, done that' information. You've come to the right place. Welcome to the group! TJ > > My son n who is 4 has been diagnosed with Aspergers and Pervasive Developmental Disorder. I was advised to join an autism group to learn about this disorder and how to help my son. I have no idea what it is or how to help him. Anyway, I just wanted to introduce myself > > > > Tina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 > > My son n who is 4 has been diagnosed with Aspergers and Pervasive Developmental Disorder. I was advised to join an autism group to learn about this disorder and how to help my son. I have no idea what it is or how to help him. Welcome, Tina. A good place to start is to identify what behaviors of your son are bothering you the most and keeping him from having a normal life the most. Then you can ask specific questions, do specific research, and have some focus on helping him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 Welcome to our group, Tina! Roxanna "The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) Newly Diagnosed My son n who is 4 has been diagnosed with Aspergers and Pervasive Developmental Disorder. I was advised to join an autism group to learn about this disorder and how to help my son. I have no idea what it is or how to help him. Anyway, I just wanted to introduce myself Tina An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 The things that helped me most while herxing were 1. drinking lots of water with lemon juice in it, almost constantly and 2. taking an occasional antihistimine. > > I was clinically diagnosed in June and my IgM was positive when the results came back. I remember being bitten in 1992 but was treated for a spider bite. I have had symptoms since 98 that I remember but was tested locally 3 times and it was negative. I currently see a lyme doctor and am taking Doxy. I know I will feel worse for awhile. Two of my children tested highly suspicious and are taking Doxy too. What else should I be taking to help with the fatigue and aching joints. My children are suppose to start taking Olive Leaf Extract from olivus.com, but I don't have that yet. I am tired of feeling terrible and will be going back to work in a couple of weeks. Any help is appreciated. Thanks, Carol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Hi Carol, my story is very similar to yours. I got Lyme in 1991 but was treated insufficiently and subsequent symptoms were not considered lyme related. An internist who happened to be an LLMD diagnosed me in 2005 and I was positive at that time. It has been a long road since then of supplements, AB (I keep relapsing)and for almost a year the Buhner protocol. My 2 cents for what it is worth; get a good doctor whom you trust, who knows a lot about supplements, keeps re-evaluating your protocol and go and see that doctor a lot. My LLMD is trained in " Environmental Medicine " as well and I have been very greatful for that. Their philosophy is to use the least possible amount of medication and invasive tests. My road has been to work on all the different health issues one at the time, to keep after the bugs with intermittent AB and herbs (Buhner protocol helped me a lot)and nutrients. You will need a lot of those, and slowly on your health will return. If my experience is a guide you probably don't realize yet how sick and drained you really are. I feel that the play between supplements, AB, medication and continiously arrising new problems (like side effects from supplements) is too complicated for a lay person to figure out. If you have too, I definately recommend Buhner's book and protocol but with a good guide you will be much better off. Good luck Truus , " Carol " <clpadgett@...> wrote: > > I was clinically diagnosed in June and my IgM was positive when the results came back. I remember being bitten in 1992 but was treated for a spider bite. I have had symptoms since 98 that I remember but was tested locally 3 times and it was negative. I currently see a lyme doctor and am taking Doxy. I know I will feel worse for awhile. Two of my children tested highly suspicious and are taking Doxy too. What else should I be taking to help with the fatigue and aching joints. My children are suppose to start taking Olive Leaf Extract from olivus.com, but I don't have that yet. I am tired of feeling terrible and will be going back to work in a couple of weeks. Any help is appreciated. Thanks, Carol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 I feel that the play between supplements, AB, medication and continiously arrising new problems (like side effects from supplements) is too complicated for a lay person to figure out. If you have too, I definately recommend Buhner's book and protocol but with a good guide you will be much better off. > Good luck > Truus Truus, Which supplements gave you side effects and what are they? I'm just stating this protocol and am wondering what to watch for. Thanks, Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2009 Report Share Posted October 10, 2009 Unfortunately, you never know with this disease. Some people have a mild case and it goes no further. For some of us, it has taken over everything! Be diligent in working with your rheumy. Keep track of symptoms, appts., tests, etc....especially dates. I didn't do that. And now having to apply for SSA and don't have good documentation - would have never dreamt I would need it. We need to give everyone this advice. Better to keep records you may not need than to discover that you need records you do not have. To top it all off, the Dr. I was with when I was first diagnosed, isn't in practice anymore and even though I signed a release, he didn't forward my records! " SuzanneW " <agapesue@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2009 Report Share Posted October 10, 2009 Hi Henrik The answer to your question is that it does not stop. It can go into remission and that is all our hope, but that will require you and your Doctor to find the proper medicines and dosage which varies with each patient. As an example, I have been taking Arava which to this point did a marvelous job, however, my Doctor tells me that there have been some changes to my lungs which is a long term side effect of this medication, so we are faced with starting again. I did, however, have a good 7 years from this medication so you can see what I mean. Good luck and don't be afraid to tell your doctor everything so that he can do his job. God Bless Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2009 Report Share Posted October 10, 2009 Henrik: everyone's different so there's no predicting where the disease might go next. If it's not expanded to other areas, the MTX may be helping more than you realize; but if your current symptoms don't subside soon, talk to your doctor about going to the next level - probably switching to or adding one of the biologics. If you've already tried MTX and it hasn't worked, that will help get your insurance company's approval to pay for the more expensive meds. You should also - even if you have insurance - check out the financial assistance programs they have for the first year. Makes the co-pays a lot more manageable. Joanna Hoelscher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 He needs occupational therapy for the sensory thing...is he receiving that? the school I think has to provide that to you free of charge. My 15 yo aspie was first diagnosed with only sensory integration dysfunction...he had all these issues with tags, shoes, the bumps in socks, water running on his head, long sleeves, short sleeves...you name it, gosh it was annoying. I will tell you it does get better with age, but the OT really helps. We now know he has asperger's as well, but he really needed to get past the sensory thing for us to even notice the aspergers. He has a very high degree of sensory dysfunction. I don't know if the rigid thinking or the meltdowns ever completely disappear, but they do get a little milder and less frequent. My husband also has aspergers as well as my 5 yo, yes you are hearing me right...3 aspies under one roof...CALGON TAKE ME AWAY!!!! SO I have one adult...he is working on a degree in civil engineering, one 15 yo, I am homeschooling him, a 5 yo that I am trying to get back into preschool all with different personalities and therefor differeent " tics " , can you imagine how much of the day I spend walking on eggshells? I also have a 2 yo little girl, who seems perfectly normal...but she is in the terrible twos which is NOT fun. Anyway...I highly recommend the OT he will need it to help him get past some of the sensory stuff. Kelley > > Hi everyone- My son is six years old, and was recently diagnosed with Aspergers and Generalized Anxiety Disorder. This last summer was a real eye opener for all of us. When his first year of school ended, the routine ended. With the routine off, Drew was off. Tantrums, meltdowns, anxiety, rigid thinking, new sensory issues, fears, etc... > > Drew has always had some anxiey issues(especially seperation), and he has always had sensory issues like, we cut all the tags off his clothing, picky eater to the point that he is not gaining weight, social awkwardness, shyness, extremely smart in math and reading, extreme interests- like 1600 bottle caps, baseball stats/cards, cars. > > The list goes on, but this last summer was extreme. It broke my heart to see him feeling like this, especially because it was not like him. I talked with our Pediatr. and she referred us to a wonderful child psych. that has been working with Drew and all of us on how to help him cope. > > I thought that when school started back up in September he would be feeling better in his routine, but he's not yet. Every day it seems their is something new, like now Drew doesn't like his tennis shoes because they are " stinging " him. I hate that he has to feel this way. > > This is my first post, so thanks for letting me share. If anyone has thoughts or ideas, let me know. > > Thanks, > Betsey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 It will probably take a while for your son to get used to his new routine. You should talk with his teacher and see what parts of the day are causing a problem for him, and figure out a way to help him with that. At home, just be understanding that if he is holding it together at school, he may have more meltdowns at home. Let him pick out his own shoes and when you find one he likes, keep to that certain style. Giving him some control over clothes, shoes, food choices, it does help. ~~~~~~~~~~~~~~~~~~~~~~ Suzanne suzmarkwood@... From: BetseyD <babydunkel@...>Subject: ( ) Newly diagnosed Date: Saturday, October 10, 2009, 7:13 PM Hi everyone- My son is six years old, and was recently diagnosed with Aspergers and Generalized Anxiety Disorder. This last summer was a real eye opener for all of us. When his first year of school ended, the routine ended. With the routine off, Drew was off. Tantrums, meltdowns, anxiety, rigid thinking, new sensory issues, fears, etc...Drew has always had some anxiey issues(especially seperation), and he has always had sensory issues like, we cut all the tags off his clothing, picky eater to the point that he is not gaining weight, social awkwardness, shyness, extremely smart in math and reading, extreme interests- like 1600 bottle caps, baseball stats/cards, cars. The list goes on, but this last summer was extreme. It broke my heart to see him feeling like this, especially because it was not like him. I talked with our Pediatr. and she referred us to a wonderful child psych. that has been working with Drew and all of us on how to help him cope.I thought that when school started back up in September he would be feeling better in his routine, but he's not yet. Every day it seems their is something new, like now Drew doesn't like his tennis shoes because they are "stinging" him. I hate that he has to feel this way. This is my first post, so thanks for letting me share. If anyone has thoughts or ideas, let me know.Thanks,Betsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 You must have a huge amount of patience!! What happens in OT? My new approach is talking quietly so the kids have to listen. Ha Ha! I also have a five year old daughter in Kindergarten, she is in speech therapy. Betsey Dunkel From: kell_corg1 <kell_corg1@...> Sent: Mon, October 12, 2009 8:24:04 AMSubject: ( ) Re: Newly diagnosed He needs occupational therapy for the sensory thing...is he receiving that? the school I think has to provide that to you free of charge. My 15 yo aspie was first diagnosed with only sensory integration dysfunction. ..he had all these issues with tags, shoes, the bumps in socks, water running on his head, long sleeves, short sleeves...you name it, gosh it was annoying. I will tell you it does get better with age, but the OT really helps. We now know he has asperger's as well, but he really needed to get past the sensory thing for us to even notice the aspergers. He has a very high degree of sensory dysfunction. I don't know if the rigid thinking or the meltdowns ever completely disappear, but they do get a little milder and less frequent. My husband also has aspergers as well as my 5 yo, yes you are hearing me right...3 aspies under one roof...CALGON TAKE ME AWAY!!!! SO I have one adult...he is working on a degree in civil engineering, one 15 yo, I am homeschooling him, a 5 yo that I am trying to get back into preschool all with different personalities and therefor differeent "tics", can you imagine how much of the day I spend walking on eggshells? I also have a 2 yo little girl, who seems perfectly normal...but she is in the terrible twos which is NOT fun. Anyway...I highly recommend the OT he will need it to help him get past some of the sensory stuff.Kelley>> Hi everyone- My son is six years old, and was recently diagnosed with Aspergers and Generalized Anxiety Disorder. This last summer was a real eye opener for all of us. When his first year of school ended, the routine ended. With the routine off, Drew was off. Tantrums, meltdowns, anxiety, rigid thinking, new sensory issues, fears, etc...> > Drew has always had some anxiey issues(especially seperation), and he has always had sensory issues like, we cut all the tags off his clothing, picky eater to the point that he is not gaining weight, social awkwardness, shyness, extremely smart in math and reading, extreme interests- like 1600 bottle caps, baseball stats/cards, cars. > > The list goes on, but this last summer was extreme. It broke my heart to see him feeling like this, especially because it was not like him. I talked with our Pediatr. and she referred us to a wonderful child psych. that has been working with Drew and all of us on how to help him cope.> > I thought that when school started back up in September he would be feeling better in his routine, but he's not yet. Every day it seems their is something new, like now Drew doesn't like his tennis shoes because they are "stinging" him. I hate that he has to feel this way. > > This is my first post, so thanks for letting me share. If anyone has thoughts or ideas, let me know.> > Thanks,> Betsey> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 We went shoe shopping together and he picked out nike's, but now he says the sides are stinging him. He is only wearing his crocs, and will wear his nike's only during gym class. They bug him, but he says he just has to wear them for a little bit. He does good in school, but as soon as we get in the car, he breaks down. It has gotten a bit better since about the third week of school, hopefully the school structure is helping. What about next summer when the structure ends again? Betsey Dunkel From: Suzanne Markwood <suzmarkwood@...> Sent: Mon, October 12, 2009 9:52:29 AMSubject: Re: ( ) Newly diagnosed It will probably take a while for your son to get used to his new routine. You should talk with his teacher and see what parts of the day are causing a problem for him, and figure out a way to help him with that. At home, just be understanding that if he is holding it together at school, he may have more meltdowns at home. Let him pick out his own shoes and when you find one he likes, keep to that certain style. Giving him some control over clothes, shoes, food choices, it does help. ~~~~~~~~~~~~ ~~~~~~~~~ ~ Suzanne suzmarkwood From: BetseyD <babydunkel (DOT) com>Subject: ( ) Newly diagnosed Date: Saturday, October 10, 2009, 7:13 PM Hi everyone- My son is six years old, and was recently diagnosed with Aspergers and Generalized Anxiety Disorder. This last summer was a real eye opener for all of us. When his first year of school ended, the routine ended. With the routine off, Drew was off. Tantrums, meltdowns, anxiety, rigid thinking, new sensory issues, fears, etc...Drew has always had some anxiey issues(especially seperation), and he has always had sensory issues like, we cut all the tags off his clothing, picky eater to the point that he is not gaining weight, social awkwardness, shyness, extremely smart in math and reading, extreme interests- like 1600 bottle caps, baseball stats/cards, cars. The list goes on, but this last summer was extreme. It broke my heart to see him feeling like this, especially because it was not like him. I talked with our Pediatr. and she referred us to a wonderful child psych. that has been working with Drew and all of us on how to help him cope.I thought that when school started back up in September he would be feeling better in his routine, but he's not yet. Every day it seems their is something new, like now Drew doesn't like his tennis shoes because they are "stinging" him. I hate that he has to feel this way. This is my first post, so thanks for letting me share. If anyone has thoughts or ideas, let me know.Thanks,Betsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2010 Report Share Posted March 4, 2010 Hi All - as my partner was just diagnosed last week I am trying to find some diet rules or hints as to what to avoid, what to take more of. He is on a low dose, to be further tested in 6 weeks. Strangely he has not many symptoms of hypo - his metabolism is good, he is low weight, rather right where he should be (lean) - only has had the mood alterations and the bad fatigue. Although lately, before meds has developed RLS - restless leg syndrome - who knows. Thanks in advance, I have lots to learn. Sharon Toronto .. .. > Posted by: " Dave " dcbaden@... > <mailto:dcbaden@...?Subject=%20Re%3ACan%20someone%20recommend%20a%20doc\ tor%20in%20NC%3F%20-%20update> > dcbaden <dcbaden> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 The first thing that comes to mind is hypoglycemia. If his blood sugar is bouncing around it could produce mood swings. In order to properly test for this he would need a glucose tolerance test. Roni <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: Sharon <sharabc@...> Subject: Re: Re:newly diagnosed hypothyroidism Date: Thursday, March 4, 2010, 9:52 AM Hi All - as my partner was just diagnosed last week I am trying to find some diet rules or hints as to what to avoid, what to take more of. He is on a low dose, to be further tested in 6 weeks. Strangely he has not many symptoms of hypo - his metabolism is good, he is low weight, rather right where he should be (lean) - only has had the mood alterations and the bad fatigue. Although lately, before meds has developed RLS - restless leg syndrome - who knows. Thanks in advance, I have lots to learn. Sharon Toronto .. .. > Posted by: " Dave " dcbaden@... > <mailto:dcbaden@...?Subject=%20Re%3ACan%20someone%20recommend%20a%20doc\ tor%20in%20NC%3F%20-%20update> > dcbaden <dcbaden> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Hi, Sharon; and welcome to the group. Was your partner diagnosed with Hashimoto's? It might help if you could post his lab results [be sure to include the ranges] as some here [not me] are pretty darned good at interpreting them. One should avoid taking certain materials near the time of taking T4 to avoid interference with absorption. I seem to remember calcium and iron being mentioned; hopefully someone more knowledgeable will fill you in. There are also foods known as " goitrogens " that should be limited or avoided if you have hypothyroidism. I also had no hypo symptoms, and my metabolism seemed more to indicate hypEr than hypO. I never had any kind of symptoms AFAIK either before or after diagnose. I just take one pill a day. As a matter of fact I don't pay any attention to the goitrogens; if I happen to want cabbage I eat it. I also don't pay any attention to whether my other medications might interfere with T4 and so far everything has been fine. You will note if you're on this list for a while that quite a number of people are not so fortunate, and have a difficult time getting the medicine right. While that is probably a small percentage overall it's still a very significant number over all. And if you or a loved one is among that number it looms much more significant. Best of luck, .. .. > > Posted by: " Sharon " sharabc@... > <mailto:sharabc@...?Subject=%20Re%3A%20newly%20diagnosed> > sharabc <sharabc> > > > Thu Mar 4, 2010 2:12 pm (PST) > > > > Hi All - as my partner was just diagnosed last week I am trying to > find some diet rules or hints as to what to avoid, what to take more > of. He is on a low dose, to be further tested in 6 weeks. Strangely he > has not many symptoms of hypo - his metabolism is good, he is low > weight, rather right where he should be (lean) - only has had the mood > alterations and the bad fatigue. Although lately, before meds has > developed RLS - restless leg syndrome - who knows. > Thanks in advance, I have lots to learn. > > Sharon > Toronto Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 When you are taking T4 medication it should be taken first thing in the morning on an empty stomach and no food or vitamins for at least an hour. Do not take minerals like magnesium, calcium, etc for four hours. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: <res075oh@...> Subject: Re: newly diagnosed hypothyroidism Date: Friday, March 5, 2010, 7:30 AM Hi, Sharon; and welcome to the group. Was your partner diagnosed with Hashimoto's? It might help if you could post his lab results [be sure to include the ranges] as some here [not me] are pretty darned good at interpreting them. One should avoid taking certain materials near the time of taking T4 to avoid interference with absorption. I seem to remember calcium and iron being mentioned; hopefully someone more knowledgeable will fill you in. There are also foods known as " goitrogens " that should be limited or avoided if you have hypothyroidism. I also had no hypo symptoms, and my metabolism seemed more to indicate hypEr than hypO. I never had any kind of symptoms AFAIK either before or after diagnose. I just take one pill a day. As a matter of fact I don't pay any attention to the goitrogens; if I happen to want cabbage I eat it. I also don't pay any attention to whether my other medications might interfere with T4 and so far everything has been fine. You will note if you're on this list for a while that quite a number of people are not so fortunate, and have a difficult time getting the medicine right. While that is probably a small percentage overall it's still a very significant number over all. And if you or a loved one is among that number it looms much more significant. Best of luck, .. .. > > Posted by: " Sharon " sharabc@... > <mailto:sharabc@...?Subject=%20Re%3A%20newly%20diagnosed> > sharabc <sharabc> > > > Thu Mar 4, 2010 2:12 pm (PST) > > > > Hi All - as my partner was just diagnosed last week I am trying to > find some diet rules or hints as to what to avoid, what to take more > of. He is on a low dose, to be further tested in 6 weeks. Strangely he > has not many symptoms of hypo - his metabolism is good, he is low > weight, rather right where he should be (lean) - only has had the mood > alterations and the bad fatigue. Although lately, before meds has > developed RLS - restless leg syndrome - who knows. > Thanks in advance, I have lots to learn. > > Sharon > Toronto ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Thanks ! I will get a copy of his lab results and post them here. Apparently he is on low level meds, so his condition is not severe. He has been told his calcium came back high and has to cut down on that. Not much other info from his Dr. - always the way - hard to get info 2nd hand in my case. Next testing results time I will be there.. ) Have heard of goitrogens so far too but seems to be a lot of green vegs which are still needed for enzymes and nutrients so I'm being wary.  Sharon  From: <res075oh@...> Subject: Re: newly diagnosed hypothyroidism Received: Friday, March 5, 2010, 10:30 AM  Hi, Sharon; and welcome to the group. Was your partner diagnosed with Hashimoto's? It might help if you could post his lab results [be sure to include the ranges] as some here [not me] are pretty darned good at interpreting them. One should avoid taking certain materials near the time of taking T4 to avoid interference with absorption. I seem to remember calcium and iron being mentioned; hopefully someone more knowledgeable will fill you in. There are also foods known as " goitrogens " that should be limited or avoided if you have hypothyroidism. I also had no hypo symptoms, and my metabolism seemed more to indicate hypEr than hypO. I never had any kind of symptoms AFAIK either before or after diagnose. I just take one pill a day. As a matter of fact I don't pay any attention to the goitrogens; if I happen to want cabbage I eat it. I also don't pay any attention to whether my other medications might interfere with T4 and so far everything has been fine. You will note if you're on this list for a while that quite a number of people are not so fortunate, and have a difficult time getting the medicine right. While that is probably a small percentage overall it's still a very significant number over all. And if you or a loved one is among that number it looms much more significant. Best of luck, .. .. > > Posted by: " Sharon " sharabc (DOT) ca > <mailto:sharabc (DOT) ca?Subject=%20Re% 3A%20newly% 20diagnosed> > sharabc <http://profiles. / sharabc> > > > Thu Mar 4, 2010 2:12 pm (PST) > > > > Hi All - as my partner was just diagnosed last week I am trying to > find some diet rules or hints as to what to avoid, what to take more > of. He is on a low dose, to be further tested in 6 weeks. Strangely he > has not many symptoms of hypo - his metabolism is good, he is low > weight, rather right where he should be (lean) - only has had the mood > alterations and the bad fatigue. Although lately, before meds has > developed RLS - restless leg syndrome - who knows. > Thanks in advance, I have lots to learn. > > Sharon > Toronto __________________________________________________________________ Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new . Click on Options in Mail and switch to New Mail today or register for free at http://mail..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Most goitrogens are usually all right if eaten in reasonable amounts and cooked as opposed to raw. However, if you're hypo, tofu and any other non fermented soy products are bad for you. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: <res075oh@...> Subject: Re: newly diagnosed hypothyroidism Received: Friday, March 5, 2010, 10:30 AM Hi, Sharon; and welcome to the group. Was your partner diagnosed with Hashimoto's? It might help if you could post his lab results [be sure to include the ranges] as some here [not me] are pretty darned good at interpreting them. One should avoid taking certain materials near the time of taking T4 to avoid interference with absorption. I seem to remember calcium and iron being mentioned; hopefully someone more knowledgeable will fill you in. There are also foods known as " goitrogens " that should be limited or avoided if you have hypothyroidism. I also had no hypo symptoms, and my metabolism seemed more to indicate hypEr than hypO. I never had any kind of symptoms AFAIK either before or after diagnose. I just take one pill a day. As a matter of fact I don't pay any attention to the goitrogens; if I happen to want cabbage I eat it. I also don't pay any attention to whether my other medications might interfere with T4 and so far everything has been fine. You will note if you're on this list for a while that quite a number of people are not so fortunate, and have a difficult time getting the medicine right. While that is probably a small percentage overall it's still a very significant number over all. And if you or a loved one is among that number it looms much more significant. Best of luck, .. .. > > Posted by: " Sharon " sharabc (DOT) ca > <mailto:sharabc (DOT) ca?Subject=%20Re% 3A%20newly% 20diagnosed> > sharabc <http://profiles. / sharabc> > > > Thu Mar 4, 2010 2:12 pm (PST) > > > > Hi All - as my partner was just diagnosed last week I am trying to > find some diet rules or hints as to what to avoid, what to take more > of. He is on a low dose, to be further tested in 6 weeks. Strangely he > has not many symptoms of hypo - his metabolism is good, he is low > weight, rather right where he should be (lean) - only has had the mood > alterations and the bad fatigue. Although lately, before meds has > developed RLS - restless leg syndrome - who knows. > Thanks in advance, I have lots to learn. > > Sharon > Toronto __________________________________________________________________ Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new . Click on Options in Mail and switch to New Mail today or register for free at http://mail..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2010 Report Share Posted March 6, 2010 The usual allopathic method to select the correct dose of T4 is to start low and check blood levels of TSH and raise the T4 until the TSH is within the desired range. As I indicated I'm not convinced that goitrogens are a no-no, at least in reasonable quantities but I'm not sure the experts agree with me. My diet is rather horrible from the viewpoint of most health conscious people so to me the benefit of a green vegetable is probably greater than the harm. Regards, .. .. > > > Posted by: " Sharon " sharabc@... > <mailto:sharabc@...?Subject=%20Re%3A%20newly%20diagnosed> > sharabc <sharabc> > > > Fri Mar 5, 2010 10:28 am (PST) > > > > Thanks ! I will get a copy of his lab results and post them > here. Apparently he is on low level meds, so his condition is not > severe. He has been told his calcium came back high and has to cut > down on that. > Not much other info from his Dr. - always the way - hard to get info > 2nd hand in my case. Next testing results time I will be there.. ) > Have heard of goitrogens so far too but seems to be a lot of green > vegs which are still needed for enzymes and nutrients so I'm being wary. > > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2010 Report Share Posted March 12, 2010 Hi Sharon I have also just been diagnosed, I have been reading alot about it on the net. I have read that too much and too little Iodine can be detrimental - anyone else read this? This is found in salt and tea apparently. Anything else you have found out let me know. Jay > > Hi All - as my partner was just diagnosed last week I am trying to find some diet rules or hints as to what to avoid, what to take more of. He is on a low dose, to be further tested in 6 weeks. Strangely he has not many symptoms of hypo - his metabolism is good, he is low weight, rather right where he should be (lean) - only has had the mood alterations and the bad fatigue. Although lately, before meds has developed RLS - restless leg syndrome - who knows. > Thanks in advance, I have lots to learn. > > Sharon > Toronto > > > > > > > > . > . > > > > Posted by: " Dave " dcbaden@... > > <mailto:dcbaden@...?Subject=%20Re%3ACan%20someone%20recommend%20a%20doctor%20\ in%20NC%3F%20-%20update> > > dcbaden <dcbaden> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 The RDA of iodine is about 150 mcg/day and in the US we normally get about twice that much in our diets. You have to have some iodine to live but there is no credible research to support the reported benefits of the massive doses of iodine that some quack sites recommend. And there is considerable credible support for the idea that [especially too much] iodine can be harmful to hypothyroid patients. I don't know how much iodine [if any] is in tea, but it is routinely added to table salt. It may be labeled " iodized salt " or at least the list of ingredients will tell you. I personally don't think you're going to get too much iodine from salt unless your eating a lot of salt or otherwise consuming a lot of iodine products [kelp, for example]. The average person may not show harmful effects from more than 1000 mcg/day of iodine and some people take up to 100,000 mcg/day and swear it is manna from heaven. Other people who take such large doses may in rare cases have negative effects, including death. Luck, .. .. > > Posted by: " jmorrisuk " jmorrisuk@... > <mailto:jmorrisuk@...?Subject=%20Re%3Anewly%20diagnosed> > jmorrisuk <jmorrisuk> > > > Sat Mar 13, 2010 2:36 pm (PST) > > > > Hi Sharon > > I have also just been diagnosed, I have been reading alot about it on > the net. I have read that too much and too little Iodine can be > detrimental - anyone else read this? This is found in salt and tea > apparently. > > Anything else you have found out let me know. > > Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2010 Report Share Posted March 14, 2010 Hi Jay - not having much luck finding out about some natural ideas to get more iodine in the diet - seems to me that this could help altough I know the meds will still be necessary but still...Kelp - yes I know about that but then again how would one incorporate that unusual food into a diet. My dogs are on a raw fed diet and they get kelp daily, but it is actually in powder form that goes into their veggie mix or meat - hardly acceptable to feed to my partner in that manner - don't think he would love me sprinkling kelp power on his cereal. He is on 3 weeks now of the meds, low level and is still fatigued and bothered by emotional ups and downs. Have to wait for 6 weeks to pass for the next blood test. Sharon From: jmorrisuk <jmorrisuk@...> Subject: Re:newly diagnosed hypothyroidism Received: Friday, March 12, 2010, 10:30 AM Â Hi Sharon I have also just been diagnosed, I have been reading alot about it on the net. I have read that too much and too little Iodine can be detrimental - anyone else read this? This is found in salt and tea apparently. Anything else you have found out let me know. Jay > > Hi All - as my partner was just diagnosed last week I am trying to find some diet rules or hints as to what to avoid, what to take more of. He is on a low dose, to be further tested in 6 weeks. Strangely he has not many symptoms of hypo - his metabolism is good, he is low weight, rather right where he should be (lean) - only has had the mood alterations and the bad fatigue. Although lately, before meds has developed RLS - restless leg syndrome - who knows. > Thanks in advance, I have lots to learn. > Â > Sharon > Toronto > > > > > > > > . > . > > > >Â Â Â Â Â Posted by: " Dave " dcbaden@... > >Â Â Â Â Â <mailto:dcbaden@ ...?Subject= %20Re%3ACan% 20someone% 20recommend% 20a%20doctor% 20in%20NC% 3F%20-%20update> > >Â Â Â Â Â dcbaden <http://profiles. / dcbaden> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Some of the kelp has been found to contain undesirable things like heavy metals. In any event there is no credible support for the idea that you need more iodine than the RDA. There are, however, a number of sites promoting even massive doses of iodine for numerous conditions. Personally I would be very leery of any advice given on such a site. .. .. > > Posted by: " Sharon " sharabc@... > <mailto:sharabc@...?Subject=%20Re%3A%20newly%20diagnosed> > sharabc <sharabc> > > > Sun Mar 14, 2010 1:06 pm (PDT) > > > > Hi Jay - not having much luck finding out about some natural ideas to > get more iodine in the diet - seems to me that this could help altough > I know the meds will still be necessary but still...Kelp - yes I know > about that but then again how would one incorporate that unusual food > into a diet. My dogs are on a raw fed diet and they get kelp daily, > but it is actually in powder form that goes into their veggie mix or > meat - hardly acceptable to feed to my partner in that manner - don't > think he would love me sprinkling kelp power on his cereal. > He is on 3 weeks now of the meds, low level and is still fatigued and > bothered by emotional ups and downs. Have to wait for 6 weeks to pass > for the next blood test. > Sharon > > > > From: jmorrisuk <jmorrisuk@... <mailto:jmorrisuk%40.co.uk>> > Subject: Re:newly diagnosed > hypothyroidism > <mailto:hypothyroidism%40> > Received: Friday, March 12, 2010, 10:30 AM > > > > Hi Sharon > > I have also just been diagnosed, I have been reading alot about it on > the net. I have read that too much and too little Iodine can be > detrimental - anyone else read this? This is found in salt and tea > apparently. > > Anything else you have found out let me know. > > Jay Quote Link to comment Share on other sites More sharing options...
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