Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Hi, Have you been to the website <stopthethyroidmadness.com>? You will find A LOT of info on what works and what doesn't for meds, how to take your meds. I also have hashi's and I can tell you 88mcgs was not enough for me. The antibodies you have because of the hashi's are slowly distroying your thryoid and I believe it also goes after the meds you are putting in your body SO you need to give yourself a bit more. I really recommend this website. It will open your eyes. If you have been taking synthroid for over a year and you still feel bad, something needs to change. Hope this helps. Venizia From: Ms Sheri <kembaluv@...> Subject: Functioning hypothyroidism Date: Wednesday, February 3, 2010, 6:23 PM  Hi All I am a 40 year old married mother of 4 and have had hypothyroidism for a little over a year now. It has developed into hoshimotos thyroiditis. I am on 88mcgs of synthroid. I sometimes have a lot of trouble concentrating during the day and am in bed A LOT. I was just wondering how does everyone else function with their hypothyroidism. Is it normal how i am feeling? I have been trying to do this real estate course online and i keep falling asleep and i am not retaining things as I used to. I have little endurance when it comes to studying. Am i just being lazy or is this all apart of the disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Probably need more meds or different meds www.stopthethyroidmadness.com CW -- Functioning Hi All I am a 40 year old married mother of 4 and have had hypothyroidism for a little over a year now. It has developed into hoshimotos thyroiditis. I am on 88mcgs of synthroid. I sometimes have a lot of trouble concentrating during the day and am in bed A LOT. I was just wondering how does everyone else function with their hypothyroidism. Is it normal how i am feeling? I have been trying to do this real estate course online and i keep falling asleep and i am not retaining things as I used to. I have little endurance when it comes to studying. Am i just being lazy or is this all apart of the disease? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Most people take one simple pill each day and seem to have no complaints whatsoever [probably about 95%]. Among those who do not seem to do well with that treatment brain fog seems to be very high on the list of complaints. On this and similar lists the proportion of members with less than stellar results from standard treatment are _much_ higher; so are the reports of brain fog and other symptoms. Regards, .. .. > > Posted by: " Carol " nelsonck@... > <mailto:nelsonck@...?Subject=%20Re%3A%20Functioning> > venizia1948 <venizia1948> > > > Sat Feb 6, 2010 5:53 am (PST) > > > > I have to disagree with on the brain fog. It is one of the > biggest complaints of people with hypothyroid. Also I agree with Trish > on B12, actually all the B vitamins are very important and so is > magnesium. You should also make sure your potassium and sodium levels > are balanced if you are experiencing puffiness, water retention. > > Venizia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 It's great to hear you're improving. It's so discouraging when people have such a hard time getting relief. I'm glad you kept plugging away until you got help. 5000 people on a list isn't so many when you consider there's about 6.8 billion people on earth. And if you believe some of the lists then perhaps a couple billion of them have some form of hypothyroidism [not a figure I believe, incidentally]. For every person on that list there are over a million NOT on it. Even if you add up all the lists it's no where near a reasonable fraction of one percent. One indication of how few people have problems is the likelihood that if you do happen to be one of those who have problems with T4 only treatment your doctor may have never heard of such a thing. At least if we can believe the reports we so often read. But you're right; I have no idea of how accurate the number is. Best, .. .. > > Posted by: " Carol " nelsonck@... > <mailto:nelsonck@...?Subject=%20Re%3A%20Functioning> > venizia1948 <venizia1948> > > > Sun Feb 7, 2010 11:19 am (PST) > > > > I suspect your number of 95% of people who have no complaints taking > one pill a day is quite high. Just in ONE of my internet groups for > thyroid there are over 5,000 people who were NOT doing well on T4only > meds and are switching over to a combination BECAUSE they had so many > complaints with the T4 only meds. This is from people all over the > world, India, Italy, Australia to name just a few and just one group. > It would be very interesting to get an actual number of people who did > not do well on T4 only and what they changed to and how much better > they are doing. > > For myself, I take T3 only because of a reverse T3 issue. My doctor > and I decided to stay on T3 only was the best route for me. For one > thing, she says that T4 is just a storage hormone anyway. Which I > have heard before she mentioned it. I have not felt this good in over > 20yrs of being on synthroid. I tried Armour for awhile until the Rt3 > became a problem. I have lost over 20#, my cholesterol went from 237 > to 177, I have more energy, I am sleeping SO much better. > Concentration level is amazing, I did not realize how bad that got > until I saw improvement. My eyebrows and eyelashes have grown back > AFTER 20YRs. Teeth marks on the sides of my tongue are gone. These > are just a few of the pluses for me taking something other than a > T4med only. > > Venizia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Wow...so much info..trying very hard to take it all in. I am a vegetarian for the most part. I only eat Fish..no other meat which definetely does not help I know. I will try to get the B12 as well as potassium. Dumb question but will bananas suffice what other foods are high in potassium? I use lots of iodized sea salt. I recently boughr some kelp. I have never tried it before but i hear it is very high in Iodized salt. Thank you so much for your responses. I am learning a lot. I have literally been in bed almost all week. > > > > From: <res075ohverizon (DOT) net> > > > > Subject: Re: Functioning > > > > hypothyroidism > > > > Date: Sunday, February 7, 2010, 4:06 PM > > > > It's great to hear you're improving. It's so discouraging when people > > > > have such a hard time getting relief. I'm glad you kept plugging away > > > > until you got help. > > > > 5000 people on a list isn't so many when you consider there's about 6.8 > > > > billion people on earth. And if you believe some of the lists then > > > > perhaps a couple billion of them have some form of hypothyroidism [not a > > > > figure I believe, incidentally] . For every person on that list there > > > > are over a million NOT on it. Even if you add up all the lists it's no > > > > where near a reasonable fraction of one percent. > > > > One indication of how few people have problems is the likelihood that if > > > > you do happen to be one of those who have problems with T4 only > > > > treatment your doctor may have never heard of such a thing. At least if > > > > we can believe the reports we so often read. But you're right; I have > > > > no idea of how accurate the number is. > > > > Best, > > > > > > > > . > > > > . > > > > > > > > > >     Posted by: " Carol " nelsoncksbcglobal (DOT) net > > > > >     <mailto:nelsonck@ sbcglobal. net?Subject= %20Re% 3A%20Functioning > > > > > >     venizia1948 <http://profiles. / venizia1948> > > > > > > > > > > > > > > >      Sun Feb 7, 2010 11:19 am (PST) > > > > > > > > > > > > > > > > > > > > I suspect your number of 95% of people who have no complaints taking > > > > > one pill a day is quite high. Just in ONE of my internet groups for > > > > > thyroid there are over 5,000 people who were NOT doing well on T4only > > > > > meds and are switching over to a combination BECAUSE they had so many > > > > > complaints with the T4 only meds. This is from people all over the > > > > > world, India, Italy, Australia to name just a few and just one group. > > > > > It would be very interesting to get an actual number of people who did > > > > > not do well on T4 only and what they changed to and how much better > > > > > they are doing. > > > > > > > > > > For myself, I take T3 only because of a reverse T3 issue. My doctor > > > > > and I decided to stay on T3 only was the best route for me. For one > > > > > thing, she says that T4 is just a storage hormone anyway. Which I > > > > > have heard before she mentioned it. I have not felt this good in over > > > > > 20yrs of biing on synthroi`. I tried Armour for awhile until the Rt3 > > > > > became a problem. I have lost over 20#, my cholesterol went from 237 > > > > > to 177, I have more energy, I am sleeping SO much better. > > > > > Concentration level is amazing, I did not realize how bad that got > > > > > until I saw improvement. My eyebrows and eyelashes have grown back > > > > > AFTER 20YRs. Teeth marks on the sides of my tongue are gone. These > > > > > are just a few of the pluses for me taking something other than a > > > > > T4med only. > > > > > > > > > > Venizia > > > > ------------ --------- --------- ------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 You're MOL reinforcing my point: If there were millions or billions of people complaining to doctors then at the very least most doctors should have heard about it from patients like you. .. .. > > Posted by: " Carol " nelsonck@... > <mailto:nelsonck@...?Subject=%20Re%3A%20Functioning> > venizia1948 <venizia1948> > > > Sun Feb 7, 2010 5:01 pm (PST) > > > > I agree with Roni. I do believe that thyroid issues are on the verge > of epidemic if not already. Roni, I also have had doctors want to pop > the pills and I also refused and I am SO glad I did. One was my heart > doctor. He wanted to put me on cholesterol meds and I told him no that > I knew my problems were my thyroid and sure enough once the thyroid > was taken care of so was my cholesterol. I remember his assistant > telling me it was not going to get better than it was. These doctors > need to wise up and start reading their medical journals and maybe be > open minded enough to read books like Dr. Mark Starr, " Type II > Hypothyroidsm " or Janie's " Stop The Thyroid Madness. " > > To you 5000 may not be a lot of people but I say it will become a > larger number as patients get tired of their doctors not listening to > them and going only by TSH rather than Ft3- Ft4, ferritin, adrenals > and how their patients feel etc. Why do you think even on this list, > people come here. They are not getting the answers from their > doctors. They are not feeling well. They want answers. What their > doctors are doing is not working. > > Just my two cents > Venizia > > > From: Roni Molin <matchermaam@... <mailto:matchermaam%40>> > Subject: Re: Re: Functioning > hypothyroidism > <mailto:hypothyroidism%40> > Date: Sunday, February 7, 2010, 6:22 PM > > > > , I think there are millions, if not billions of people that are > misdiagnosed as having some sort of mental illness, rather than > assessing their thyroid and adrenal health. The medical profession and > the drug companies make billions on antidepressants, pain meds etc., > and the doctors all seem to try to give them to you, no matter what > your symptoms are. I have refused those things from every doctor I've > been to, and won't take them, except that I do have take a valium > along with Flecainide when I get an atrial fibrillation attack. I > don't even like to do that, but it helps to calm the heartbeat down. > > <>Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 To some extent I think we find what we expect to find. For the most part I seem to find reasonably competent doctors who are well educated and brighter than the average bear. And I _do_ have a reasonable lay person's ability to make that determination. Regards, .. .. > > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Functioning> > matchermaam <matchermaam> > > > Sun Feb 7, 2010 6:19 pm (PST) > > > > I think 5000 is not a great number, but I believe that there are so > many more that know nothing about their own condition, think their > doctors MUST be acting in their own best interests because " isn't that > what doctors do? " , have no idea that their symptoms are because they > are undermedicated or are so convinced that it's " all in their head " . > It's really a travesty that hypoT patients can't get properly > diagnosed and treated, all in the name of > " more money for me, the heck with you. " > > <>Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Kelp has iodine in it; I don't know about the salt. A lot of kelp also has contaminants in it. Further, if you have Hashimoto's the iodine in kelp can cause very negative reactions. Luck, PS: Would you guys mind trimming your posts? Several on this list have included two or three dozen pages of useless material which are a real PITA. Thanks. .. .. > Posted by: " Ms Sheri " kembaluv@... > <mailto:kembaluv@...?Subject=%20Re%3A%20Functioning> > phenomchild <phenomchild> > > > Sun Feb 7, 2010 7:16 pm (PST) > > > > Wow...so much info..trying very hard to take it all in. I am a > vegetarian for the most part. I only eat Fish..no other meat which > definetely does not help I know. I will try to get the B12 as well as > potassium. Dumb question but will bananas suffice what other foods are > high in potassium? I use lots of iodized sea salt. I recently boughr > some kelp. I have never tried it before but i hear it is very high in > Iodized salt. Thank you so much for your responses. I am learning a > lot. I have literally been in bed almost all week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 - I acrually wonder WHY you feel the need to join Internet Thyroid Support Forums. You have a good doctor, you don't suffer with the symptoms of hypothyroidism, you take levothyroxine only and announce to the world that you do very well on this - and you are lucky enough to find " reasonably competent doctors who are well educated, and to cap it all, you have a reasonably lay person's ability to make that determination. Woo Hoo! We in the UK are a tiny little island, yet we believe that over 250,000 (probably nearer 500,000 if the truth was known) sufferers of the symptoms of hypothyroidism are neither getting a proper diagnosis (because their blood test results are within the reference range) or they are not being given a choice of treatment if levothyroxine doesn't give them back their normal health. We have, here in the UK, the Royal College of Physicians, the British Thyroid Association, the Society for Endocrinology,the Association for Clinical Biochemistry, the British Thyroid Foundation Patient Support Group, the British Society of Paediatric Endocrinology and Diabetes, and the Royal College of General Practitioners authoring new guidelines on the diagnosis and management of hypothyroidism - all virtually banning any T3 containing products. You are wrong when you say that we find what we expect to find. Grant us with more intelligence please. I do NOT find what I expect to find in this awful, awful thyroid world. I expect to find educated doctors who know HOW to diagnose through listening to their patient's medical history, finding out if any members of their family have a thyroid or autoimmune disease, giving them a physical examination to look for the signs of hypothyroidism, following this up with thyroid GLAND function tests to see whether the thyroid is actually producing the thyroid hormones it should be, and if it is, following this up with other tests to see whether that thyroid hormone is actually getting into the cells nuclei - because there are millions of sufferers world-wide who are suffering because of their doctors ignorance. I expect my doctor to be able to produce another thyroid hormone replacement if the mainly inactive levothyroxine isn't taking away my symptoms. I expect my doctor to actually LISTEN to me and CARE about me and do whatever he can to get me well again. A large minority of sufferers are unable to convert the mainly inactive T4 to the active T3 - these thyroid forums are practically made up of them and there are many, many reasons why they are unable to convert. Count yourself lucky that you are doing fine on levothyroxine only, and instead of being sceptical about people like me needing to produce " credible evidence " for you, before you will take this on board - why not help to produce such 'credible evidence'. If you really want to help your members, you can do this by downloading ALL your members names from the Members section of this Forum, and no doubt you will need help to do this, and send out a mass email to them all individually passing on a link (which I will be sending out shortly)to a Questionnaire to enable all those who have been prescribed levothyroxine and remained ill, yet were then prescribed a T3 containing product (synthetic or natural), either in combination with T4 or T3 alone and their symptoms were elimianted or alleviated, to respond to just 3 questions. These questions have a simple YES or NO answer and their responses will be automatically collated online. The whole idea is to produce a world-wide Register of Counterexamples to the levothyroxine-only therapy. The results will then be sent to all the Deans/Heads of all Medical Schools throughout the world and all the Medical Boards etc. to show that, whatever they say, levothyroxine simply does not work for everybody. You want 'credible evidence', then start to download your list of members now ready for when I send out the link. All you (and hopefully a team of helpers) need to do is to put a semicolon after each members name, and then put about 40 email addresses at a time into the Bcc box, with 'Undisclosed Recipients' in the 'TO' Box. I will send all the owners of web sites and Internet Thyroid Forums a covering message to explain what this is all about. My server only allows me to send out 400 emails a day, so again, you will need a team to help you, but we must not find excuses not to do this - I am expecting that every owner will do this, if they really do care about the suffering their members are being put through so unnecessarily. It's time the talking stopped once and for all, and that action was started. Our Register of Counterexamples to levothyroxine-only therapy could be the start. Sheila www.tpa-uk.org.uk In hypothyroidism , wrote:To some extent I think we find what we expect to find. For the mostpart I seem to find reasonably competent doctors who are well educated and brighter than the average bear. And I _do_ have a reasonable lay person's ability to make that determination. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 Yet again I suspect we tend to find what we expect to find. I seem to generally find doctors who seem well intentioned, and often they will spend much more time with me than could possibly be justified by the paltry payment that Medicare allows for the service. When evaluating any proposed social experiment you can IMHO judge fairly accurately whether it is viable or not if you assume this is the most basic principle of human behavior: PEOPLE [ALWAYS] ACT IN PERCEIVED SELF INTEREST. I suspect you can apply the same to doctors too; after all they're human [at least the ones who aren't God! {ggg}]. Some probably became doctors because of a burning desire to be of service to their fellow humans; some because they expected the financial rewards to be great. Regards, .. .. > > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Functioning> > matchermaam <matchermaam> > > > Mon Feb 8, 2010 4:27 pm (PST) > > > > Oh I agree they are brighter than the average bear, but do they > actually want to do things in the best interests of their patients or > their wallets? I've met the good ones and the bad ones, and the > difference is stunning. > > <>Roni > Immortality exists! > It's called knowledge! > > Just because something isn't seen > doesn't mean it's not there<> > > > > From: <res075oh@... <mailto:res075oh%40verizon.net>> > Subject: Re: Functioning > hypothyroidism > <mailto:hypothyroidism%40> > Date: Monday, February 8, 2010, 3:38 PM > > To some extent I think we find what we expect to find. For the most > part I seem to find reasonably competent doctors who are well educated > and brighter than the average bear. And I _do_ have a reasonable lay > person's ability to make that determination. > > Regards, > > . > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 You cannot change the formula in a drastic manner for a drug that has been approved for sale; I doubt you can tamper with the active ingredients at all. If you do you have to treat it as a new drug and go through the approval process; which is very long and expensive. To arbitrarily change a formula without approval would probably be a felony in any country on earth. Further, it would open up such a floodgate of litigation that to do so would be committing financial suicide. That is the exact opposite of the motive you seem to feel they have: To make money. I personally suspect that the effectiveness of Armour may have decreased because of a decrease in the effectiveness of the placebo factor for that medication. Once it became widely known that the formula had been changed [although only the inert ingredients] that may have caused a paranoia among those who do not realize that inert ingredients are exactly that: They are inert for the vast majority of humans; and are chosen exactly for that reason. So the " faith " of the " faithful " proponents was shaken, and the beneficial effects that most all medicines exhibit that are in fact placebo effect decreased. Of course, from a scientific viewpoint this is just idle speculation... AND: There may be some tiny percentage of patients who _do_ actually have a negative reaction to the change in inert ingredients. Again: If you go looking for a conspiracy expecting to find one you probably will IMHO. .. .. > > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Functioning> > matchermaam <matchermaam> > > > Mon Feb 8, 2010 4:25 pm (PST) > > > > But look at all the money they are getting by prescribing Synthroid. > The conspiracy is so strong that they don't even do the proper > testing, so there's no way that they can find the right answers. > I'm sure that to someone who's not having these issues it may seem > very oddball, and very few, but, believe me, it's very much larger > than you could imagine. Look what happened when Forest went and > changed their formula and so many people got sick on it. At first they > tried to hide it and say nothing was wrong and they didn't hear > anything about it. Then they got so much negative feedback they > acknowledged that they changed the formula. Then they got so much more > negative feedback, they finally stopped making it. I don't believe > them for a minute that all they changed was one of the " inactive " > ingredients. > > <>Roni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 Venizia, it's " Hear, hear " . .. .. > > Posted by: " Carol " nelsonck@... > <mailto:nelsonck@...?Subject=%20Re%3A%20Functioning> > venizia1948 <venizia1948> > > > Mon Feb 8, 2010 4:32 pm (PST) > > > > Here, here Roni....very well said!!! > > Venizia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Hi Roni - first, apologies to everybody for my previous message showing no paragraphs. Something went wrong half way through writing the message and I had not noticed all the paragraph breaks had been removed. It will actually be a crying shame if the owners of all the thyroid groups will not go to the trouble of downloading all their members email addresses and sending out a mass email - surely they opened their forum in the first place to help all those who are suffering, and this is one way they could really help. With , it is a very simple task to do, though tedious. All an owner has to do is to go to their Members List, click 'download' and every members email address is listed alphabetically. They then cut and paste it into a Word Doc. If the owner is too busy, they can then write a message to their members asking if any of them will colunteer to add a semi-colon after every name and send it back to them. I have never had any problems with this and there is always somebody who comes along to help. When sending out the mass email, if any owners are too busy, they can ask their members for help. All they then need to do is to send about 400 email addresses to those offering help with a link to the online questionnaire and paste the message from me with an explanation as to why we are needing their cooperation. Members will be told that their answers (Yes or No) to the 3 questions will be collated automatically online once they click 'Submit'. Whoever has offered help will paste about 40 email addresses at a time into the Bcc Box and write 'Undisclosed Recipients' in the 'TO' Box and send these off. This project HAS to be a joint effort between owners and their members, otherwise, we will never bring about change. I will, of course, also be asking all the owners to put the details and the link to the questionnaire onto their web sites - and to this end, we have already found and downloaded the email addresses of a few hundred thyroid groups throughout the world. The questionnaire to compile the Register of Counterexamples is also being translated into several languages including French, German, Finnish, Swedish, Italian and hopefully Russian. If there are any members here who's Mother tongue is not English and you can help with translating it into another language, please contact me at sheila@... <mailto:sheila@...> . I need all the help I can get. Sheila > > Your idea to let the world of medicine see what is going on is a terrific idea. I don't, however, think the owners of these groups are going to do all that work. > > It might be a more effective method to make up your questionnaire to be posted to the groups, and have each person answer the questionnaire and forward it to a preset address. > > Just another idea that might help you accomplish your admirable goal. > > <>Roni It's time the talking stopped once and for all, and > that action was started. Our Register of Counterexamples to > levothyroxine-only therapy could be the start. Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 , One quote comes to mind when I read your ramblings " I cannot help mentioning that the door of a bigoted mind opens outwards so that the only result of the pressure of facts upon it is to close it more snugly " - Ogden Nash. Sheila > I personally suspect that the effectiveness of Armour may have decreased > because of a decrease in the effectiveness of the placebo factor for > that medication. Once it became widely known that the formula had been > changed [although only the inert ingredients] that may have caused a > paranoia among those who do not realize that inert ingredients are > exactly that: They are inert for the vast majority of humans; and are > chosen exactly for that reason. So the " faith " of the " faithful " > proponents was shaken, and the beneficial effects that most all > medicines exhibit that are in fact placebo effect decreased. Of course, > from a scientific viewpoint this is just idle speculation... AND: There > may be some tiny percentage of patients who _do_ actually have a > negative reaction to the change in inert ingredients. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Personally I don't think it's a good idea to supplement something like potassium unless you KNOW you are low. Regarding iodized salt and kelp ...I have a large barge pole and I would not touch either of those items with it! In my view unrefined sea salt is essential but bleached white iodized sodium chloride is not. Kelp has been shown to be contaminated with various nasty things (arsenic for one) so that wouldn't be my choice as a supplement. If it is the iodine you are after then I don't know what to tell you but you could try this group iodine/ Anything you choose to supplement with make sure you have done your research and do not just go along with what someone says ... on this list seems to think that we are all half-brained when it comes to iodine (and maybe other things) and he expresses terror at the thought that someone might be harmed by following the advice, particularly from the iodine group. You are right ..there is a lot of info but just take it little by little ... Trish PS Please to everyone who knows how to do it, please trim your posts > > Wow...so much info..trying very hard to take it all in. I am a vegetarian for the most part. I only eat Fish..no other meat which definetely does not help I know. I will try to get the B12 as well as potassium. Dumb question but will bananas suffice what other foods are high in potassium? I use lots of iodized sea salt. I recently boughr some kelp. I have never tried it before but i hear it is very high in Iodized salt. Thank you so much for your responses. I am learning a lot. I have literally been in bed almost all week. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Hi, Sheila. You no doubt have a great example of one of the main reasons someone might want to contribute to a list like this...yourself. Although possibly part of your motive for being on lists like this is to seek out help for yourself you appear to genuinely care about the needs of others, and to do whatever you can to help them. A lot of your message below demonstrates that IMHO. Therefore you should not be so surprised that others have the same motive. Having obviously sufficient intelligence it should also not surprise you that others might approach that motive differently than you do. One of the main things I try to do is to get people to use critical analysis in evaluating possible treatments, and to be able to avoid the vast number of quacks and con artists who attempt to take advantage of them. I respect and support the US allopathic medical system [despite its many limitations] and the scientific method in general. I approach this list from that world view, and have so stated many times. Now, as to the UK: I think most of us in the US have a great deal of respect for the UK and its citizens. HOWEVER: In the UK you have chosen [or had foisted upon you] a socialist health care system run by one or a number of bureaucracies. Such is the nature of bureaucracies that you tend to get the exact response that you describe: Massive incompetence; inefficient; apparently totally uncaring; self-serving and on and on. Such a system IMHO tends to destroy the very things you seek; and if they are no longer there you cannot find them. I think that is the source of much of your problem, and one of the main reasons I object to a US socialist medical system every chance I get. I won't go further with that here as it is off-topic. More below... .. .. > > Posted by: " SheilaT " sheilaturner@... > <mailto:sheilaturner@...?Subject=%20Re%3A%20Functioning> > campaigner77 <campaigner77> > > > Tue Feb 9, 2010 11:31 am (PST) > > > > - I acrually wonder WHY you feel the need to join Internet Thyroid > Support Forums. You have a good doctor, you don't suffer with the > symptoms of hypothyroidism, you take levothyroxine only and announce to > the world that you do very well on this - and you are lucky enough to > find " reasonably competent doctors who are well educated, and to cap it > all, you have a reasonably lay person's ability to make that > determination. Woo Hoo! We in the UK are a tiny little island, yet we > believe that over 250,000 (probably nearer 500,000 if the truth was > known) sufferers of the symptoms of hypothyroidism are neither getting a > proper diagnosis (because their blood test results are within the > reference range) or they are not being given a choice of treatment if > levothyroxine doesn't give them back their normal health. We have, here > in the UK, the Royal College of Physicians, the British Thyroid > Association, the Society for Endocrinology, > the Association for Clinical > Biochemistry, the British Thyroid Foundation Patient Support Group, the > British Society of Paediatric Endocrinology and Diabetes, and the Royal > College of General Practitioners authoring new guidelines on the > diagnosis and management of hypothyroidism - all virtually banning any > T3 containing products. You are wrong when you say that we find what > we expect to find. Grant us with more intelligence please. I do NOT find > what I expect to find in this awful, awful thyroid world. I expect to > find educated doctors who know HOW to diagnose through listening to > their patient's medical history, finding out if any members of their > family have a thyroid or autoimmune disease, giving them a physical > examination to look for the signs of hypothyroidism, following this up > with thyroid GLAND function tests to see whether the thyroid is actually > producing the thyroid hormones it should be, and if it is, following > this up with other tests to see whether that thyroid hormone is actually > getting into the cells nuclei - because there are millions of sufferers > world-wide who are suffering because of their doctors ignorance. I > expect my doctor to be able to produce another thyroid hormone > replacement if the mainly inactive levothyroxine isn't taking away my > symptoms. I expect my doctor to actually LISTEN to me and CARE about me > and do whatever he can to get me well again. A large minority of > sufferers are unable to convert the mainly inactive T4 to the active T3 > - these thyroid forums are practically made up of them and there are > many, many reasons why they are unable to convert. Count yourself lucky > that you are doing fine on levothyroxine only, and instead of being > sceptical about people like me needing to produce " credible evidence " .. .. You don't need to produce anything for me. You don't need to produce anything to relate your personal experience to others here. HOWEVER: Once you start " prescribing " for others then IMHO you _do_ need to be supported by credible evidence. And I will point out if you promote some quack process or product without any credible support. Last week someone on this list promoted a doctor and his " miracle " cure for cancer [baking soda]. What she failed to tell us is that he had applied his " remedy " to a patient and killed her; further he was convicted of fraud and manslaughter and his license to practice medicine was revoked. Do you think I should just let the quack recommendation stand without pointing out the inconvenient truth??? If a member asks about a product that is essentially just very expensive hamburger with no healing properties whatsoever do you think I should fail to present the correct response??? .. .. > for you, before you will take this on board - why not help to produce > such 'credible evidence'. If you really want to help your members, you > can do this by downloading ALL your members names from the Members > section of this Forum, and no doubt you will need help to do this, and > send out a mass email to them all individually passing on a link (which > I will be sending out shortly)to a Questionnaire to enable all those who > have been prescribed levothyroxine and remained ill, yet were then > prescribed a T3 containing product (synthetic or natural), either in > combination with T4 or T3 alone and their symptoms were elimianted or > alleviated, to respond to just 3 questions. These questions have a > simple YES or NO answer and their responses will be automatically > collated online. The whole idea is to produce a world-wide Register of > Counterexamples to the levothyroxine-only therapy. The results will then > be sent to all the Deans/Heads of all Medical Schools throughout the > world and all the Medical Boards etc. to show that, whatever they say, > levothyroxine simply does not work for everybody. You want 'credible > evidence', then start to download your list of members now ready for > when I send out the link. All you (and hopefully a team of helpers) need > to do is to put a semicolon after each members name, and then put about > 40 email addresses at a time into the Bcc box, with 'Undisclosed > Recipients' in the 'TO' Box. I will send all the owners of web sites and > Internet Thyroid Forums a covering message to explain what this is all > about. My server only allows me to send out 400 emails a day, so again, > you will need a team to help you, but we must not find excuses not to do > this - I am expecting that every owner will do this, if they really do > care about the suffering their members are being put through so > unnecessarily. It's time the talking stopped once and for all, and > that action was started. Our Register of Counterexamples to > levothyroxine-only therapy could be the start. Sheila .. .. I am not the owner here; I am only assistant moderator. The owner has abandoned this list and does not respond to any pleas for help from the only moderator we have [ira Fine] or from me. I do whatever I can to help but Ira has to carry most of the load. You can contact him at: <IRAMFINE@...>. Since Ira is unable to name a full moderator [only the absent list owner can do that] I do not have access to the membership list or to other matters that the owner or moderator only can access. Further, I hesitate to place any more load upon Ira, as IMHO he already carries more of a load than we have any right to expect. If you know of any way anyone here can help you given the facts above please let us know. Incidentally: You aren't trying to produce " credible evidence " ; you're trying to produce a large quantity of anecdotal evidence. It might be not only correct but also serve your intended purpose well but you really should know the difference; if for no other reason than the fact that it's entirely possible that some of those to whom you present it _will_ know the difference and it places you at a disadvantage if you appear to not do so. Regards, .. .. > www.tpa-uk.org.uk In hypothyroidism > <mailto:hypothyroidism%40>, wrote: > To some extent I think we find what we expect to find. For the most part I > seem to find reasonably competent doctors who are well educated and > brighter than the average bear. And I _do_ have a reasonable lay > person's ability to make that determination. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Strange that you feel the need to stoop to name calling; it becomes you not at all. If you or I do such a thing we in reality paint a not very flattering picture of ourselves and really do not tell anyone much of anything about the person we attack. You sound like you're still PO'd that I posted on another list that a concoction for which you seem to have a lot of respect is effectively very expensive hamburger with no healing properties whatsoever; a fact that you may or may not remember was confirmed by Chuck. That's ancient history; you really should let it go. My " ramblings " are fairly well thought out and consistent with the messages I want to send. If your mind works in a logical manner you will not have too much problem following them, or in determining my " world view " of bias. My " rambling " is sufficiently precise that I can discuss matters such as special or general relativity on other lists with those well educated in such matters and receive respectful responses. My mind is not closed to Armour or to T3; there is in fact IMHO considerable credible evidence that some percentage of hypo patients do not convert T4 efficiently or may have some kind of binding or other problem of which I am massively ignorant. I support the idea that Armour and T3 should be available to all patients despite the fact that I in all of the credible research of which I'm aware the benefits of Armour over T4 alone tend to fall to chance or placebo. Still, if I had less than stellar results with T4 alone I would have no problem whatsoever in asking my doctor to prescribe Armour or similar for me. We cannot IMHO ignore all of the anecdotal evidence for Armour, although we must eliminate all anecdotal evidence when we do credible research. While anecdotal evidence can be the " starting point " for credible research it cannot be contained therein. .. .. > Posted by: " SheilaT " sheilaturner@... > <mailto:sheilaturner@...?Subject=%20Re%3A%20Functioning> > campaigner77 <campaigner77> > > > Wed Feb 10, 2010 1:44 am (PST) > > > > > , > > One quote comes to mind when I read your ramblings " I cannot help > mentioning that the door of a bigoted mind opens outwards so that the > only result of the pressure of facts upon it is to close it more snugly " > - Ogden Nash. > > Sheila > > > I personally suspect that the effectiveness of Armour may have > decreased > > because of a decrease in the effectiveness of the placebo factor for > > that medication. Once it became widely known that the formula had been > > changed [although only the inert ingredients] that may have caused a > > paranoia among those who do not realize that inert ingredients are > > exactly that: They are inert for the vast majority of humans; and are > > chosen exactly for that reason. So the " faith " of the " faithful " > > proponents was shaken, and the beneficial effects that most all > > medicines exhibit that are in fact placebo effect decreased. Of > course, > > from a scientific viewpoint this is just idle speculation. > .. AND: > There > > may be some tiny percentage of patients who _do_ actually have a > > negative reaction to the change in inert ingredients. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 It may be easy for the owner to do that, however my attempts to contact the owner have had exactly zero responses of any kind. It's my understanding that everyone gets the same results. There are IIRC about 2600 members on this list and I strongly hesitate to ask Ira to embark upon such a process alone. I don't know of any way that I or any other member can download a list of members, but then there's lots I don't know about such matters. If you know of one perhaps you could enlighten us. How about Roni's idea to post the questionnaire directly to this group? I'm sure some of us would be glad to help; but I don't know how many. Out of 2600[?] members only a dozen or so post regularly. .. .. > Posted by: " SheilaT " sheilaturner@... > <mailto:sheilaturner@...?Subject=%20Re%3A%20Functioning> > campaigner77 <campaigner77> > > > Wed Feb 10, 2010 1:09 am (PST) > > > > > Hi Roni - first, apologies to everybody for my previous message showing > no paragraphs. Something went wrong half way through writing the message > and I had not noticed all the paragraph breaks had been removed. > > It will actually be a crying shame if the owners of all the thyroid > groups will not go to the trouble of downloading all their members email > addresses and sending out a mass email - surely they opened their forum > in the first place to help all those who are suffering, and this is one > way they could really help. > > With , it is a very simple task to do, though tedious. All an owner > has to do is to go to their Members List, click 'download' and every > members email address is listed alphabetically. They then cut and paste > it into a Word Doc. If the owner is too busy, they can then write a > message to their members asking if any of them will colunteer to add a > semi-colon after every name and send it back to them. I have never had > any problems with this and there is always somebody who comes along to > help. > > When sending out the mass email, if any owners are too busy, they can > ask their members for help. > > All they then need to do is to send about 400 email addresses to those > offering help with a link to the online questionnaire and paste the > message from me with an explanation as to why we are needing their > cooperation. Members will be told that their answers (Yes or No) to the > 3 questions will be collated automatically online once they click > 'Submit'. Whoever has offered help will paste about 40 email addresses > at a time into the Bcc Box and write 'Undisclosed Recipients' in the > 'TO' Box and send these off. > > This project HAS to be a joint effort between owners and their members, > otherwise, we will never bring about change. > > I will, of course, also be asking all the owners to put the details and > the link to the questionnaire onto their web sites - and to this end, we > have already found and downloaded the email addresses of a few hundred > thyroid groups throughout the world. The questionnaire to compile the > Register of Counterexamples is also being translated into several > languages including French, German, Finnish, Swedish, Italian and > hopefully Russian. If there are any members here who's Mother tongue is > not English and you can help with translating it into another language, > please contact me at sheila@... <mailto:sheila%40tpauk.com> > <mailto:sheila@... <mailto:sheila%40tpauk.com>> . I need > all the help I can get. > > Sheila > > > > > > Your idea to let the world of medicine see what is going on is a > terrific idea. I don't, however, think the owners of these groups are > going to do all that work. > > > > It might be a more effective method to make up your questionnaire to > be posted to the groups, and have each person answer the questionnaire > and forward it to a preset address. > > > > Just another idea that might help you accomplish your admirable goal. > > > > <>Roni > > It's time the talking stopped once and for all, and > > that action was started. Our Register of Counterexamples to > > levothyroxine-only therapy could be the start. Sheila > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Count yourself lucky > > that you are doing fine on levothyroxine only, and instead of being > > sceptical about people like me needing to produce " credible evidence " > . > . > You don't need to produce anything for me. You don't need to produce > anything to relate your personal experience to others here. HOWEVER: > Once you start " prescribing " for others then IMHO you _do_ need to be > supported by credible evidence. I do not prescribe, nor do I authorise, but I do recommend. I do research and can and do, produce " credible evidence " when this is needed drawn from studies, clinical trials and science that is available. And I will point out if you promote > some quack process or product without any credible support. I do NOT promote ANY " quack " process or " quack " products - if they had " credible support " they wouldn't be " quack " would they? > > Incidentally: You aren't trying to produce " credible evidence " ; you're > trying to produce a large quantity of anecdotal evidence. It might be > not only correct but also serve your intended purpose well but you > really should know the difference; if for no other reason than the fact > that it's entirely possible that some of those to whom you present it > _will_ know the difference and it places you at a disadvantage if you > appear to not do so. I am not producing " anecdotal evidence " (hearsay), I will be presenting data which has been placed directly online by patients subjected to T4 only therapy who continued to have symptoms of hypothyroidism, yet had their symptoms eleviated or eleiminated when given a T3 hormone containing product. Are you about to suggest an alternative and better way? Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 If the owner of this group cannot be contacted then I see of no way the list of members can be downloaded - which is a shame. However, if Ira was given access to the members list, all he has to do is to go to the Members List, click download, copy and paste the list into a Word document and then send to a member who would be willing to do what's necessary. Two minutes work. The link is being sent to all owners of thyroid web site and thyroid Internet forums to enable their readers/members to complete the questionnaire. We will get more signatures if these owners will contact their members individually or delegate this tasks to one of their members, because as you say, out of 2600 members here, only about a dozen at any one time is reading. Sheila > > How about Roni's idea to post the questionnaire directly to this group? > I'm sure some of us would be glad to help; but I don't know how many. > Out of 2600[?] members only a dozen or so post regularly. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 If you lived in the UK, you would also have an extremely dim view of thyroid doctoring. There are many, many other countries throughout the world who have doctors that diagnose and treat similarly to UK doctoring, so you are fortunate to have med schools who understand about the need T3 treatments in some cases. Sheila > Also, I think your extremely dim view of thyroid doctoring is entirely > appropriate for the U.K. but not for other nations. I have several > former students with recent M.D. degrees who tell me U.S. med schools > are teaching both T3 treatments and earlier (low TSH) interventions. One > of them started my son on T4 with a TSH of 4. He is currently being > treated by one of the Endo professors at the med school they all > attended. Same story from them, although they didn't like my theory > about statins suppressing TSH. > > Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 I don't have any terror at the notion that someone might die, but I think it's rather foolish and inconsiderate to provide instructions to someone that have a small chance of killing them without also providing that information. We can make our best judgment IMHO when we have all of the available information. I personally declined a prescription from my cardiologist based upon my evaluation of probable risks/benefits last month. BTW, are you sure table salt is bleached? I don't believe I ever heard that. .. .. > > Posted by: " Trish " fielddot@... > <mailto:fielddot@...?Subject=%20Re%3A%20Functioning> > trishruk <trishruk> > > > Wed Feb 10, 2010 9:02 am (PST) > > > > > > Personally I don't think it's a good idea to supplement something like > potassium unless you KNOW you are low. > > Regarding iodized salt and kelp ...I have a large barge pole and I > would not touch either of those items with it! In my view unrefined > sea salt is essential but bleached white iodized sodium chloride is > not. Kelp has been shown to be contaminated with various nasty things > (arsenic for one) so that wouldn't be my choice as a supplement. If it > is the iodine you are after then I don't know what to tell you but you > could try this group > > iodine/ > <iodine/> > > Anything you choose to supplement with make sure you have done your > research and do not just go along with what someone says ... on > this list seems to think that we are all half-brained when it comes to > iodine (and maybe other things) and he expresses terror at the thought > that someone might be harmed by following the advice, particularly > from the iodine group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Hi Roni, my name is Sheila and I live at Squirrel Cottage, ickornshaw, Cowling, Nr keighley9, BD22 0DH, North Yorkshire, UK. I am the founder/owner of Thyroid Patient Advocacy-UK www.tpa-uk.org.uk <http://www.tpa-uk.org.uk> and run the thyroid support forum thyroid treatment <thyroid treatment> . I opened these to campaign for a better diagnosis and choice of treatment for those patients suffering the symptoms of hypothyroidism. I have been running TPA-UK for six years. I am a sufferer of the symptoms of hypothyroidism who was treated with levothyroxine-sodium only and remained ill with worsening symptoms, but regained my normal health when started on Armour Thyroid by a private consultant. I worked with my NHS endocrinologist to get the facts about natural thyroid extract as there is a lot of misinformation, after which he decided he would prescribe it for me, so I now get this free of charge within the NHS. Because of this, I decided to try to get the true facts to other endocrinologists so they might help their patients who are not getting back their optimal health on T4-only, and have had some success in the UK but realised in the process just how badly sufferers are being treated - or not treated as the case may be. If you need more information, please let me know. Sheila > > A thought just struck me Sheila. You are asking for thousands of names and email addresses, and actually we don't know who you are. Is there some way you could identify > yourself so that we know for sure who you are and what you intend to do with all that information? > > > <>Roni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 I may be wrong, I apologise if that's the case. Trish > > I don't have any terror at the notion that someone might die, but I > think it's rather foolish and inconsiderate to provide instructions to > someone that have a small chance of killing them without also providing > that information. We can make our best judgment IMHO when we have all > of the available information. I personally declined a prescription from > my cardiologist based upon my evaluation of probable risks/benefits last > month. > > BTW, are you sure table salt is bleached? I don't believe I ever heard > that. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Hi, Roni. Please see below... .. .. > Posted by: " Roni Molin " matchermaam@... > <mailto:matchermaam@...?Subject=%20Re%3A%20Functioning> > matchermaam <matchermaam> > > > Thu Feb 11, 2010 12:46 pm (PST) > > > > http://www.purezing.com/living/food_articles/living_articles_badsalt.htm > <http://www.purezing.com/living/food_articles/living_articles_badsalt.htm> > > This is just the first one I found. > > <>Roni .. Interesting site although not altogether reliable; but they do mention bleaching salt. Do you find this statement believable? .. > According to the Salt Institute, Americans consume an average of just > over 400 pounds of salt a year! .. That's well over a pound per day... Further, they state that the drying process [or whatever it is] drastically changes the chemical constituents of salt. .. > High temperature's dramatically alter the chemical makeup of salt. .. Well, salt is sodium chloride before it is heated and it's sodium chloride after it's heated. Nothing of it's basic chemical composition is changed; just the trace elements AFAIK. Thanks, Quote Link to comment Share on other sites More sharing options...
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