CALL FOR ACTION - PLEASE HELP GIVE THE FEEDBACK THAT'S NEEDED!

PLEASE TELL THE PROMOTERS OF TSH TESTING AND LEVOTHYROXINE (T4) TREATMENT WHAT YOU THINK!!!

PLEASE tell the ATA and AACE how YOU feel about their treatment guidelines that encourage TSH only testing and treatment with Levothyroxine (T4) only.

WE NEED CHANGE NOW!

Please write something that explains how their emphasis on the TSH test and Levothyroxine (T4) only treatment has impacted your life and health. Write as LITTLE or AS MUCH as you want. JUST WRITE!

Tell these organizations the consequences of their guidelines.

The way to do this is to post your comment on the first link and then copy & paste it on the other 3 links:

ATA FB post regarding their 2012 guidelines: facebook.com/ThyroidAssocia...

ATA main wall:

facebook.com/ThyroidAssocia...

AACE FB post regarding TSH supremacy:

facebook.com/TheAACE/posts/...

AACE main wall:

facebook.com/TheAACE

27 Replies

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  • Hi Paul, I don't do Facebook and have no desire to, so is there another way to leave feedback?

    I am finding your book very interesting by the way!

  • No - this is how the USA Endos have asked for feedback. Sorry - if I could change it I would!

  • I'm off to work if not I'd stop and help, but these associations surely have an email address you could forward your concerns to? have a look at their websites x

  • Done and this is what i said

    Please do not just do a TSH test and dish out Levothyroxine it is not the answer. Anyone who has a Thyroid condition needs to have their free T4 and free T3 tested as well as the TSH. Some of us can’t tolerate Levothyroxine (T4) or convert it to T3. T3 needs therefore to be given to some people.

    There is a one size fits all approach to this disease and it does not work. We are all different and needed to be treated as such. Some need medication at night others in the morning to get the best results. We don’t know which works until we try but please can we be told about it by the experts who treat us instead of relying of fellow suffers who we have to search out for help.

    I myself have spent years not well at all and not knowing why all because my TSH was the only test done and Levothyroxine given. I have had to fight for change like so many others.

    THIS IS A COMPLEX CONDITION SO PLEASE TEST IT PROPERY AND TREAT US WITH WHAT IS BEST FOR US AS AN INDIVIDUAL.

    If it was your mother, father, brother, sister or child who you not want the best for them?

    PLEASE STOP THIS MADNESS NOW!

  • Please post in ALL FOUR LIINKS - you probably have already! :)

  • oh yes :)

  • HUGS!!!! Thank you!

  • PLEASE SUPPORT THIS,.

    It is a RARE OPPORTUNITY to get to the USA MEN who tell us how we should be tested and treated.

    PL:EASE post your thoughts on thyroid blood tests and treatment on the four links given. Just work out what you want to say and then post it on all four links.

    Best wishes,

    Paul

  • They will ignore it all and put it down to people being hysterical neurotic hypochondriacs.

    They will only accept proven evidence, so for example if someone was tested and it revealed a lack of conversion into fT3, then after taking T3 tablets their results improved along with symptoms. Concrete test results, then they might listen.

    Even then they will porbably dismiss it as anecdotal or too rare or affected by something else.

    Most doctors are not open to anything which is not strictly by the book.

    Sorry if I sound cynical about this, but you do see an awful lot of ignorant ranting on the Internet, and a lot of doctors incorrectly assume non- medical professionals are all equally ranty and ignorant.

    As an illustattion of ranting, STTM were unpleasant when I briefly joined their forum - they were so closed minded about Levo, constantly insisted it never works and causes all sorts of evil. They banned me for stating that I knew several,people who were fine on Levo. it is the STTM sort of extremism that hinders people with a more balanced point of view from being heard.

    We would need to acknowledge that the majority do well on Levo, and emphasise that a minority do not, and it is this minority who are being let down very badly by the current Levo only paradigm.

    on my iPad so difficult to write coherently haha. Hope it made sense.

    koala

  • I'm the MOST SUPER CYNICAL PERSON ON THIS PLANET. I would race you for the 100 metres cynical sprint and win hands down.

    Just please post. Your chance to VENT at them. We have to hit them with thousands of posts.

    If we do that then they'll know there is a massive issue.

    If we give up then they'll think they've won.

    The minority are close to a 100,000 people - thousands and thousands of people who are sick.

    The old folks who are 'well' on thyroxine are also not so well. I don't believe that the majority are well on thyroxine - this is a myth that we are being fed. Some of us actually believe it and are telling others that this is true. Sad.

    Please let the endos know that their TSH methodology and Thyroxine treatment isn't working!!!!

    PLEASE!!!!!

  • I totally agree with you Paul that the majority are not well on thyroxine. I have more than few friends who have been on thyroxine for a long time and even though they did well perhaps for years, they are NOT doing well as years go by but sadly they simply put it down to ageing!

  • Thank you Ocean. Please post your comments on the four links above.

    Please persuade others to do the same thing.

    Thank you!

  • Could it be that it IS simply due to ageing?

  • If it was just due to ageing then we wouldn't be feeling better with optimal thyroid replacement.

  • I think you are right, Ocean. I have heard this. Have any studies been done on how long T4 monotherapy is successful for? I know several people who have been on it for years who have all sorts of health problems, whether this is because of chronic undertreating or simply because levo becomes less effective over time, I don't know. Perhaps it is most effective in milder cases. Research needs to be done and in the meantime people need to be offered the treatment that best works for them.

  • you are VERY RIGHT Paul, even 'if' they only listen to 'evidence' and 'official test results' if they hear so many of us still being unwell despite this and getting better in our own hands and/or with the help of an 'alternative doctor' who treats us by symptoms or with help of metabolic rate testing like dr J C Lowe did then they surely will have to ask themselves if their way is really the way.

    I have posted and my reply was:

    I am a thyroid sufferer, my TSH was ONLY 4.27 (range 0.24 to 4.20), fT4 was 17.8 (range 11 to 22), my fT3 3.8 (range 3.1 to 6., according to MANY doctors and endocrinologist there was NOTHING wrong with me, even though I was freezing cold in temperatures of 22 degrees even with my thermal vest and 3 additional layers of clothing and a coat/hat/scarf/gloves/thermal socks my hands/feet/body were FREEZING. The fatigue was overwhelming, my body like led, my brain not functioning properly I thought I had alzheimer's coming on (age 42), dry skin, slow bowel movement, carpal tunnel, bradycardia of 43beats per minutes and a blood pressure of 90/50 despite being OBESE and never been to the gym all my life! Low voltage ECG. I convinced my doctor to give me a trial of thyroxine, even though an endocrinologist said it was all my head and I was going to INTOXICATE myself with thyroid hormones. Thyroxine gave me horrible joint pain and having discovered that natural desiccated thyroid hormone was around I wanted to try it. I had to go privately to a doctor who treats hypothyroidism mainly by symptoms (the way we used to which was RIGHT), he let me try NDT and I improved in many ways, however it became apparent my body was 'starving' for T3 as I got to a dosage where I was getting hyper effects but not enough relief from my hypothyroidism. We then tried T3 alone and 3 months after that I was TOTALLY cured of ALL my symptoms. The endo who believes I was intoxicating myself is STILL in denial and thinks I am 'still' intoxicating myself. My cholesterol has gone DOWN from 4.6 to 3.9, I open my bowels daily which I never did in my life! I managed to lose 2 stones (on a diet I have to say before you think it was the T3 only and over a period of months), my brain functions normally again and no longer I make mistakes at work, my fatigue totally dissipated, I no longer need medication for migraines as they've gone, I now have a normal ECG with normal voltage and a resting heart rate of 65 to 70bpm, my blood pressure is now 110/70. If I stayed with a doctor who 'held me hostage' to the TSH I would have never been treated or if treated I would have been KEPT SICK. Thyroid function tests only tell you what goes on IN THE BLOOD and NOT in the cells, you can have all the ft3 and ft4 you like in the blood, if the cells do not use it/uptake it then there is NO POINT in having it! Stop issuing guidelines which limit doctors on how to help us, stop keeping us ill, all we want is to have a normal/healthy life! please.

  • Thanks Paul for telling us about this opportunity to have our voices heard. I have posted the following:

    I am yet another patient who did not do well on thyroxine - in fact it made me feel even worse than before treatment - even when my TSH returned to being in the normal range (at diagnosis it was 18.0). My symptoms included vertigo, severe headaches, tingling hands, feet and head, memory problems, severe anxiety and panic attacks, insomnia etc. etc. I was very lucky to find an enlightened endo who let me try NDT and was not concerned about the resultant supressed TSH. He has helped me to get my health back and understands that the important blood tests are FT3 and FT4 and not TSH. I strongly believe that to understand better what is going on, all patients should be routinely tested for FT3, FT4 and rT3 (as well as TSH), and that clinical decisions should be based on symptoms - not just test results. If thyroxine does not works as a first line treatment, then all other options should be discussed and made available if appropriate. Please, please take this opportunity to review your guidelines and give thousands (if not millions?) of people their health back - everyone deserves the same chance I got.

    I have posted it on all four pages as suggested - they HAVE to start listening to us if we make enough noise.

  • Brilliant ..... thank you Clare.

    On this site the blog posts disappear off the top FAST - is there any way to keep this request 'bumped up' near the top for a week?

    If not possible then could YOU just copy and paste it as a new blog every couple of days - to encourage those that haven't seen it to go to the endo pages and write their comments? Big ask here ..... but this is important to get their attention.

  • Hi Paul - there are 3 tabs at the top of the page which sort the blogs/questions into different orders. On the "Active" tab, a new comment will make the blog go to the top of the page. The default tab is "Newest" though, and as you say, blogs soon disappear onto the next page.

    I will do as you suggest and post a new blog with a link to this one every couple of days for the next week, to keep it visible :)

  • Thank you Clare! :)

  • Hi, I left a comment:

    "I was refused treatment because my TSH was only slightly raised and my free T4 was low normal. The fact that I felt like death and had all the symptoms of hypothyroidism had no weight. The doctor refused to test my T3. The much more reliable urine test showed that I was low in T4 and particularly low in T3. Medical care is supposed to be free in the UK, but I have had to pay to get treatment and have had in effect to be my own doctor and educate myself about the condition since the average GP and even endocrinologists seem to know nothing. Because of the TFT many people remain undiagnosed or are shunted off to the CFS?ME diagnosis or are undertreated and told their debilitating symptoms are all in their minds or due to other diseases. The treatment is a disgrace, in fact a denial of basic civil rights and has a strong element of sex discrimination in that the majority of sufferers are women."

  • Thank you!!! This is great!!

  • I left a comment on the first link and found that it was automatically copied onto the other three pages. Did anyone else find this?

  • It didn't do that for me. Weird and also extremely helpful! :)

  • If anyone hasn't been on the 4 listed ENDO sites in the first message in this thread then PLEASE, PLEASE do so. We need your comments to get through to these people.

    Thank you!

  • Thank you Paul for bringing this to our attention, wish I'd seen it earlier as I believe every bit helps. I have posted to all four sites anyway as below:

    Please Listen to Patients. They know their bodies better than anyone.

    TSH Levels don’t tell the whole story. Thyroxine (T4) doesn’t work for us all.

    I know this because despite 18months on Thyroxine (T4) I did not get better.

    I was delighted to initially be given a reason for my failing health. Hypothyroid, no problem said my GP take this T4 once a day and you’ll be fine. Simple I thought. I loved the concept until it didn’t work.

    Sadly. I felt far worse than before I started on T4. Within weeks I felt toxic, and frightened. My voice failed, I could barely function, by brain and body shut down.

    My GP just kept asking me to be patient and take more T4. Despite asking he refused me any other alternative treatment. Desperate I sort help from a Thyroid expert and tried supplementing my T4 with NT trying to boost the T3. This had some effect and indeed I did feel better for a while only if I cut out the T4 and increased the NT, which contained T4 and T3.

    This also failed and finally left me with Rt3 and Jaundice. The conclusion was that I was unable to tolerate the T4. My only alternative was to try Triiodothyronine (T3) on its own to clear the Rt3 and hopefully improve my Hypo symptoms and give me back my life.

    Recovering with T3 is working.

    I am now almost totally free from all my hypothyroid symptoms and feel so very much better. Normal!

    Please let our GP’s offer alternative medications.

    I want other to be given the chance to try all the available Thyroid medications, which are currently not being offered readily.

    Please don’t rely totally on a one-part blood test.

    Please allow our professionals to give their patients a full Thyroid Blood Test currently only being offered privately Including FT3, FT4, and ReverseT3 alongside the not always so useful TSH.

    Please allow our Professionals to prescribe and monitor medications based on clinical signs and symptoms being given by their patients alongside those blood tests.

    Please allow patients to have other vital clinical tests to be done to make sure their bodies can actually absorb and utilize the Thyroid medications they are then given.

    Every patient that is not getting better on Thyroxine (T4) is costing the NHS and other Healthcare bodies far far more than the alternative options in the long term.

    Hope this brings the blog back up to the top for more to see.

  • Great post - yes every feedback they get helps.

    Thank you!

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