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Month: June 2013

How a hospital can royally mess a thyroid patient up!! And here’s what YOU can do to avoid this!

hospitalLinda was an informed thyroid patient. i.e. she knew that Natural Desiccated Thyroid (NDT) gave her the best results and had been on it for years and successfully. It changed her life in so many wonderful ways as a survivor of polio.

At 3 grains, it was an amount that removed her symptoms and helped so many issues that T4-only like Synthroid in the past did not.

But she was faced with major heart surgery–the replacement of her heart valve. The current one was quickly failing, and it became serious and necessary to get her into surgery!

And here’s what happened after she was admitted into the hospital:

  • She was immediately put on T4-only

    Their reasoning: her FT3 was too high. They failed to understand that her biological stress was probably causing pooling of T3–common in response to high cortisol, and the latter also causing more Reverse T3, the inactive hormone.. Patients will usually just lower the NDT, not get on T4-only, the latter which is a lousy treatment for all too many. And Linda had once been on T4-only and did absolutely lousy!

  • One of the surgical team doctors, while visiting her several days before surgery, defended the T4. 

    Linda reports that the doc seemed to have no knowledge that a heart needs T3 to function well.

  • She was told she could NOT bring her NDT with her and take it. 

    Linda reports here that she was treated like a moron who couldn’t possibly have a brain on what is best for her.

  • Another doctor gave in, but she was only allowed 1.5 grains  

    A much better treatment plan, says Linda, based on years of her NDT use, even though lower than she wanted. And she credits her insistence for this change.

  • She was put back on T4 for the surgery.  

    “I don’t do well on T4!!”, Linda exclaims. “Why do they think I should be on an inferior treatment when I need direct T3 the most in my recovery? They are so uninformed and brainwashed!”

  • Upon being sent to a nursing home for several days for further recovery, she was also forced to stay on T4-only.

    Linda had a friend come get her and take her home for the rest of her recovery!

She is now back on her NDT, though less until she recovers from the stress of her surgery, which can cause T3 pooling and rising RT3. Lesson learned, says Linda!

HOW TO AVOID LINDA’S EXPERIENCE

  1. Designate a loved one or a few friends ahead of time to agree to be your advocate if you have to go into the hospital. 
  2. Teach your advocates by letting them know what you are on today, why it’s a better treatment for you, and what you want to stick with (even if in lower doses due to the stress effect)
  3. Inform your doctor of what you want or don’t want in a hospital setting.
  4. Create a MEDICAL INFORMATION POUCH. Inform your advocates where this pouch will be.

WHAT SHOULD BE IN YOUR MEDICAL INFORMATION POUCH

Try and find a clear plastic pouch or envelope of some kind. If it’s not transparent, label it with you name and info, such as JANIE’S MEDICAL INFORMATION POUCH, 2013. Place it in a memorable place in your house to be taken to the hospital, if needed. It could even be placed in your vehicle.

Or, create a google doc with all your information, and designate someone’s email as always having access to this information.

Add the following information on a sheet of paper:

  1. the amount of Natural Desiccated Thyroid and/or T3 you are on. Suggest an amount to lower to during the stress of the hospital stay, and to be continued after coming home until better recovery. Explain how you dose it. Make it clear that you do not want to be put on T4 of any kind.
  2. the amount of HC/adrenal cortex/adrenal supports you are on and why.
  3. any other important meds you are on and why.
  4. the name of your doctor and phone number.
  5. the name of close relatives or other friends and phone numbers.

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20130611_192609HAVE SPANISH SPEAKING FRIENDS?? PLEASE POST THIS IN YOUR PRIVATE FACEBOOK PAGE: Porfavor ayudame a difundir que la version en español del libro STTM esta disponible. Porfavor peguen la liga de arriba en sus paginas personales de Facebook. No lo puedo dar a conocer sin su ayuda! //www.stopthethyroidmadness.com/spanish

It translates: Please help me to spread the word that the Spanish version of the STTM book is available. Please post the above link in your personal Facebook. I can’t spread the word (about the book) without your help.

Description: https://mail.google.com/mail/u/0/images/cleardot.gif

11 replies

Walter Reed Medical Center proclaims desiccated thyroid SAFE…and there’s more to the story!

CLAPPING HANDSPatients have known by their experiences the past 110 years that natural desiccated thyroid (NDT) was safe and effective.

Yet it took a recent study at Walter Reed Military Medical Center, and lead by the U.S. National Institutes of Health, to proclaim what patients already knew: Desiccated thyroid extract a safe alternative to levothyroxine in hypothyroidism, as reported on Endocrine Today. Good for Walter Reed Military Medical Center and Thanh D. Hoang, DO, the staff endocrinologist who reported it:

“At the end of the 16-week study, 34 patients (48.6%) preferred DTE therapy, whereas 13 (18.6%) preferred levothyroxine; 23 (32.9%) did not specify a preference, he said. Further analysis confirmed those who preferred DTE lost even more weight over a 4-month period.”

In other words, those doctors throughout the years…and especially negatively-biased Endocrinologists…who have outright proclaimed that NDT was….

  • ineffective
  • dangerous
  • inconsistent
  • unnecessary
  • “fill-in-the-blank”

…might want to eat a bit of the dirt from that potted plant in their office’s waiting room.

And what’s the “more to the story”??

In all probability, there were several patients who had either low iron or a cortisol problem—a common problem for many hypothyroid patients who’ve remained undiagnosed with their hypothyroidism. And with either or both, patients don’t do as well on NDT until they optimize either. And once they do, patients have soared on NDT, as reported for more than ten years!

Also, the TSH lab test was used in this study, and if patients are kept in the TSH “normal” range, they don’t do as well ! Dosing NDT should have NOTHING to do with a pituitary hormone lab result, we have learned over and over.

Bottom line: we might have seen that 48% much higher if the above had been recognized. But frankly, the results of this study are still POSITIVE and underscore what patients have already known and experienced for a long, long time!! Hooray!!

DO YOU HAVE SPANISH-SPEAKING FACEBOOK FRIENDS?

WIth 20130611_191811the Spanish version of the Stop the Thyroid Madness book being out, I could use help in reaching folks who really don’t understand English well-enough to know why they are having problems with their thyroid treatment.

Please consider posting the following on your Facebook page to help reach your spanish-speaking friends from the misery of being undiagnosed or being on T4-only meds like Synthroid:

Pre-ordenar su copia de la versión española del libro DETENGAN LA LOCURA TIROIDEA: Una Revolución de Pacientes en Contra de Décadas de Mala Calidad !! http://www.stopthethyroidmadness.com/spanish/

EVEN WITH DAILY SUPPLEMENTATION, MY OWN VITAMIN D LEVEL FELL

I found myself with a Vit. D level of 45 two weeks ago. That was a shock considering I have been supplementing with 5000 IU’s almost daily and it was, in fact, lower that last time I checked. Sure, there have been intermittent periods where I would run out of my supplement, or forgot it on a vacation. But this was a drastic drop…considering. And my progressive doc wondered out loud if SUNSHINEsomething is going on out there, as she’s seen this with several of her patients.

Granted, we know that one culprit which is huge for thyroid patients is low stomach acid. But are there other causes? Possibly.

In 2011, the National Center for Health Data reported on 9 reasons your D levels can fall. They include living in higher latitudes, pollution, having darker skin, obesity, and getting older. Two other important reasons include gut problems or kidney/liver issues. i.e. if your gut is compromised due to low stomach acid, Celiac, or any other digestive/absorption issues, you will probably need to keep a close watch on your levels and supplementation. And a stressed liver is not helping you either. That’s where doctors will test your ALT and AST to gauge the stress level of your liver.

For me, I’m back on 10,000 IU’s daily.

WANT TO SEE MORE MEDICAL STUDIES WHICH SUPPORT WHAT WE ALREADY KNOW? 

STTM has a page showing several medical research studies which you might enjoy, and can use with your narrow-minded, research-obsessed doctor.

**Have you Liked the STTM Facebook page? You’ll get daily tips and information!

 

 

2 replies

More thyroid patients respond with a resounding YES!!

CLOCKOn my May 17th blog post, I did an interesting blog post about the responses given to a new patient when she asked in a patient group:  “If you could turn the clock back to when you were first diagnosed, would you even have bothered trying the synthetic Thyroxine (T4-only) or would you have jumped right in with NDT (Natural Desiccated Thyroid)?”

I then posted a link to the above blog post in a large STTM-related (which means patient-experienced-related) thyroid group, which produced even more interesting responses from real people to the same question! See below.

Because nothing is more influential than the exact words of others!!

 

  1. Yes! I would have!
  2. Does a bear poop in the woods?
  3. Oh my gosh YES !!!!
  4. YES!!!
  5. YES.
  6. Oh heck yes!!
  7. Thank God for STTM and I started with NDT.
  8. If NDT had been a real option here in Norway, yes I would! Unfortunately it is not. 13 years on Levaxin made me definitely not healthy. After three years on NDT I reckon myself as practically recovered! It is only exceptionally that one can get NDT here in Norway. To get it you must be lucky enough to have a doctor who has 1) heard of the medicine, 2) has the right information about it and not just the incomplete and partly erroneous information they receive during their studies in Norway, and not the least 3) do not care what their colleagues are saying and take the chance to provide the patient NDT. Getting NDT medicine on the same terms as the synthetic is an entirely different game. The synthetic is subsidized by the state. That does not apply NDT, so until further notice, most of us luckiest pay dearly of our own pocket.
  9. If I would have had this knowledge I have today when I was a teenager and first had thyroid symptoms I would have tested if it because of autoimmune destruction. Before starting any thyroid medication my first priority would be to try to find out the root cause of my symptoms. Perhaps I could have been able to avoid meds completely taking food supplements and eating the way my body needs. If hormone therapy would have been what I need then of course I would prefer NTD.
  10. I had a TT in 1976 (probable Graves, but antibodies weren’t tested much in that time). I was put, immediately, on 3 gr Armour. Stayed on that for probably 10-12 years. Was then switched to Synthroid .112. I stayed on that until 1999 with no issues. Something happened about that time to cause Synthroid to stop working for me. Whether it was something they did to the medication or something to do with my changing hormones, but I started to get hypo and was very, very anemic (serum iron level was 7 and Ferritin was 12). It wasn’t until 2008 that I started looking for other solutions to my problems. I tried T3 and several kinds of NDT in an effort to feel better. Followed several different protocols. Finally, I went back to the basics, started on low doses of Erfa and raised it by small amounts every few months and finally leveled out at 2gr as my optimum dose. it’s been a long road of trial and error, but I finally feel normal again.
  11. I would have stayed on Armour. I was diagnosed at age 9 and was told I had to switch to a synthetic in my late 20s. Suddenly I had some health issues and doctors didn’t seem to know why. They said it was because of having kids. What? The issues started years before I had my girls. I went back to Naturethroid several years ago. Thankfully I had some knowledge about things so when my girls were diagnosed as hypo, I already had doctor that prescribed NDT!
  12. Most definitely.
  13. OH, YES!!!! I remember being diagnosed 12 years ago after 10+ years of asking…I thought – FINALLY!!! An answer and I’m going to get better – NOT!!!!!!!
  14. ABSOLUTELY
  15. HECK YES!!!! I think they need to discontinue just T4 meds! It hurts too many of us suffering! I was allergic to them and had not idea for a year! ugh…Thank you NDT!
  16. YES!!
  17. Definitely!!!!! i wish i would have known about it then, took me 3 years to research and find it..thank god for these sites!!!!!
  18. Definitely!! I now know that I have been “settling” for what I thought was the best I was going to feel as a hypo patient. I’ve now been on Armour for 5 months – my joint pain is gone, I’m not freezing all of the time, I’m (very) slowly losing weight, and I have more energy! I’ve also taken charge of my health and am getting my vitamin deficiencies taken care of!
  19. My wish is that anyone who wants it NOW could get it. there are still whole STATES in the US with no physicians who will prescribe it.
  20. hellz to the yeah!!
  21. Absolutely, I wanted to but first doc who diagnosed me barely thought I had an issue
  22. Oh yeah!
  23. I started on NDT. Thankfully I had researched it before my TT (I have Graves) and knew NDT is what I wanted; and thanks to Charlotte, found a fabulous physician to take care of my thyroid hrt needs from labs to meds.
  24. Absolutely! Especially when I first had a problem – many years – over a decade before my TSH was high enough to qualify me for meds…
  25. I was lucky, as first time a minimally low thyroid showed up, (along with adrenal exhaustion) at 31 the md believed in only prescribing NDT armour. But then i had to learn how to know when it was time to come off and on for year as adrenals healed. So at one point when weaned off, then being intro to standard process NDT and now working though a Fibroid tumor in uterus (successfully at this point with no burn off) and menopause.
  26. Makes me sad for my mom who is in Heaven because she suffered years on synthroid and she didn’t have to.
  27. I’ve been wondering over the last few days if my mom is also suffering. Her symptoms and medical issues seem classic to me. I’m going to ask for a copy of her labs from her MD. This is so sad when it’s so preventable — with the right tests and medication people don’t have to suffer like we are!
  28. Yes, I would have started out on NDT first, no question. My endo at the time wouldn’t give it to me, so I tried Synthroid… for about 2 months, with no relief. Lol, I fired that doc and found one that gave me NDT after reading about all the success the group members here have had with it. It was a life changing (for the BEST) decision!!
  29. Me too, I would not be having the issues I am having now, if I had been on NDT!! But on the plus side, thanks to Janie, I am getting better, and have lost 22kgs in weight.
  30. Yes I would in a heart beat! I remember crashing on synthroid only 2 years after using it and that was not a very happy time of my life. I just wish that it wasn’t so difficult to find a Dr. that is ok with prescribing it.I wish that they were more educated on the product. It’s obvious that it works,lol.
  31. Yes, then I would not be on T3 only now…and probably would still have my thyroid!
  32. Yes, I wish I knew about NDT back when I had my thyroid ablation in 2000.
  33. I started out on t3 only but had wanted ndt and got it when i went to hospital thinking i was having a heart attack! THEN the dr had the gall to say ” didn’t we try armour already?” I almost stabbed him as I had been asking for it the whole yr! Other than that i couldn’t even get a diagnosis for 48yrs so yes glad i am on ndt but got a whole lot of catching up to do!
  34. YES! No question.
  35. I have only ever been on NDT!!!
  36. Of course!
  37. Funny b/c I was just looking at a picture of myself from a year or two prior to losing my thyroid and was thinking if I could turn back time I would love to have my body WITH a thyroid back. But if I could only go back to the point where I had to have the TT I would absoeffinlutely choose NDT over T4. If I had any idea how close T4 would come to killing me I would have never done it. I have a very hard time understanding how it is legal (unless used w/T3).
  38. No brainer.
  39. Just did! I started directly on NDT instead of T4!
  40. YES!
  41. I love that I have great hair now. always had thin stringy splitting hair before NDT.
  42. Yes.
  43. It’s only a very short time, a month and a half, but I would have to say yes. NTD gives me something that synthroid didn’t some thing I can’t describe but a feeling of whole. Now I feel stable enough to check out another problem: Depression. I have been off lexapro since end April, mood has been OK until recently. Started reaserching on line and gonna try 5-htp to boost my serotonin levels and see were that takes me. It is your site Janie and all the wonderful people here that have given me the boost to make this leap in to “the wild side” as Wendy Kuh put it! lol  Had hoped that the NDT would handle the depression, but now after reading articles on line, it seems I gotta check out the serotonin. I will be reporting on it here if that is OK.
  44. no, I don’t think I needed it until my gland completely died. But I would have started on it alot earlier than I did. it took forever for a doctor to give it to me.
  45. I know this sounds crazy but are any of you afraid of diseases that could be passed on? My doc has suggested using armor to me but I came home and researched it and it kind of scares me. (From Janie: 110+ years of safe use, so far! And compare that with your risks of being on T4-only…and later she replies “I probably should give it a try”
  46. Of course! But I had to start as a baby in 1978 after my thyroidectomy – conveniently 5 years after the worthless TSH. I was great until my teenage years. Would have LOVED NDT as a child! Instead I was 28 before finding it. I found out about NDT from STTM. Even in nursing school, we were taught NDT was very difficult to control thus they preached T4 specifically Synthroid. It starts in our medical nursing schools! SAD!
  47. Oh yes, 2 and a half years of misery and hospitals. Ill never know how my life may have been different if I had found it sooner.
  48. I’m much more afraid of continuing on the path I have been on for all these years and especially the last 3 years. I became sicker and sicker to the point I could barely walk or breath. NDT was used for a hundred years successfully before T4 meds came along. I don’t believe all the negative hype about NDT. Plus, I’m willing to do whatever it takes to try to get a life worth living again.
  49. If you want to save yourself from complete and utter misery you really should. I thought I was doing just great on synthetic for 17 years until my body finally decided to show me the damage it did. I’ll be lucky if the damage done doesn’t kill me.
  50. oh yes my life is a complete turn around.
  51. YES! If I could turn back the clock, I’d have kept my thyroid gland and gotten a good doc who prescribed NDT. Life’s much better now
  52. I am on T4 and T3. Would you still recommend NDT? (From Janie: Yes, say a lot of patients who switched and got even better results.
  53. I definitely would recommend NDT. I was on Armour but my dr wouldn’t raise me so I raised myself and felt better within a few weeks. Then I ran out and decided to try T4/T3 because I could get it from Mexico with a prescription and hoped it was close enough to Armour. . It’s only been a few weeks and I’m feeling horrible again. Am getting back on NDT asap and waiting to feel good again.
  54. Yes for sure
  55. Absolutely!
  56. yes
  57. Yes, I god madly sick when I started taking synthetic T4.
  58. Oh yes I lost 16 years in $ynthroid hell.
  59. Absolutely.. I lost from 22 to 34 years due to Syncrap meanwhile thinking I was just lazy, crazy and a loser…
  60. YES!
  61. This is a very tough question for. Each event in our lives define who we have become …. the very essence of who we are today is a culmination of the events, tragedies, triumphs, challenges that have brought us to where we are today. It took years of what I am playfully calling medical abuse for me to “jump off the plane” and free fall (so to speak)…And make the change from Synthroid (T4 only) to Nature Throid and eventually To Thyro Gold. It took me getting to my lowest point where my son was so upset, he thought I didn’t want to play with him, my family thought I was ignoring them, my loved ones thought I was playing sick to get out of social events. I quite literally had NOTHING to lose and everything to gain. I was about to lose my job. So, I look at it like this: For those that have read Janie’s books…You know her journey…You know how she got fed up and DISGUSTED with the way things are /were…and ask yourself: Would we have a Janie or an STTM for that matter if we all had the choice to turn back the clock? Think of how many people have benefited from her story and the story of those that found her & STTM, and now  people that followed suite and GIVE BACK to the community because of the Selfless contributions that Janie has made.  To those that say or WILL SAY But she sells her book…She makes money…Look at the time she gives up. Look at what she lost , look at what she’s contributed. FOR ANYONE with a calculator and half a brain cell you will KNOW that she hasn’t even come close to breaking even, nor do I think that even bothers her provided that THE MESSAGE gets out  So that HER STORY…… OUR STORY doesn’t repeat itself and repeat itself . Think for a moment about sacrifice. Giving up ones personal time to HELP PEOPLE. IT IS time consuming. Now lets look @ the overhead. What it costs emotionally, physically, etc to keep this going. If anyone that’s ever done business adds it up, she’s not even close to even, yet she still keeps this going TO HELP PEOPLE ….For me, I can honestly say ……. NO .. I think things in life played out the way they were destined to: to provide people with the strength, determination and fortitude needed to give us all what we need to be where we are today. So I think for me, I am where I am because of the path people before me traveled and I am WHO I am because of the sacrifices those before me made and the sacrifices and chances I made along the way .
  62. Heck yes. Can’t say enough yes ! Would have saved me many sick years.
  63. YES!!!!!!
  64. YES, was called hypochondriac for 20 years by docs
  65. OMG yes . . . I was sick for 7 years before anyone would believe it was my thyroid. Then I was started on “Syncrap” and really wanted to die. I mean really, panic attacks, depression, some days non stop crying, could not sleep, sweating like crazy, heart rate and so strong you could see my chest move. After 5 months of that h*ll, I was moved onto Armour and within a week felt better, but it took another six months to be feeling like I wanted to continue with life. The only good “Syncrap” did, I dropped weight like crazy! But, I was also going crazy, so not worth that.
  66. Well, thanks to all the wonderfully inspiring answers and what I’ve learned from STTM in those weeks – mostly through quiet observations – I have ceased Levothyroxine and started Armour. Within hours of stopping Levo, I could fill my lungs with air. (breathing was getting quite worrying!) Moving into the forth day of my new journey, I feel very optimistic indeed. Thanks to everyone!
  67. Yes….that was over 30 years ago.
  68. good gosh yes! triple yes!
  69. Yes!
  70. I went directly to Armour. I did my research. I just wish I had also gone to Cytomel earlier. I just started that last year and it has made a world of difference. I now take 150 mg of Armour and 10 mcg of Cytomel daily. I started losing weight shortly after introducing Cytomel and I also got some of my hair back.
  71. No, lol. If I hadn’t tried synthroid that one weekend to find out that I couldn’t take it, I might always have a question. I’m glad I found out fast how awful it made me feel and how happy I was to start NT.
  72. i definitely would have
  73. DEFINITELY. T4-only was torture for me – all my symptoms were much worse.
  74. Yes i probably would have
  75. I probably would’ve done a lot of things differently like research more and understand things before doing the radioactive treatment
  76. If I could turn back the clock I would have grown up eating a diet full of fruits and vegetables and more protein, and not have these effing hormone imbalances to begin with…uhhg.
10 replies