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Year: 2013

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

Exercise reduces T3, Vitamin C lowers high cortisol, Interesting theory about iodine…and more.

POTBELLY PIGDESICCATED THYROID QUOTE OF THE DAY: “I had potbelly pigs as pets for 18 years (my kids were allergic to cats and dogs). I took darn good care of them! Now pigs are taking care of me! :c)”  ~Thyroid Patient Tula

THE STOP THE THYROID MADNESS BOOK IN SPANISH IS COMING OUT LATER THIS MONTH!

Look for a future announcement! It will only be available via the publishing company at first, which is here: //www.laughinggrapepublishing.com

CAN ENDURANCE EXERCISE AFFECT YOUR THYROID?

There has been some hoopla around the net about the possibility of endurance training affecting thyroid function in a negative way, especially in women (but could happen to men). And when women stop their endurance or cardio training, they see their T3 levels come back up where they should be. One article cites 80 difference references about problems caused from excess training or exercise. But what I fail to see mentioned in many articles is the potential physiological reason why. First, more intensive exercise raises cortisol levels (in those with healthy adrenal function–not in those with sluggish adrenal function). Both higher levels of cortisol, as well as increased inflammation, inhibit the conversion of T4 to T3. This inhibition raises the levels of Reverse T3, which lowers the cellular receipt of T3. And here’s something quite interesting also found in this article:

“….low intensity exercise (40%) does not result in significant increases in cortisol levels, but, once corrections for plasma volume reduction occurred and circadian factors were examined, low intensity exercise actually resulted in a reduction in circulating cortisol levels.”

The above biological fact about exercise and cortisol is another reason why intense exercise becomes a no-no if saliva testing proves you already have an adrenal (sluggishness) or HPA feedback issue.

VITAMIN C AFTER A WORKOUT CAN HELP LOWER HIGH CORTISOL–IS THERE SIGNIFICANCE FOR THYROID PATIENTS??

I thought I knew a lot about Vitamin C until thyroid Patient Kristian told me about Vitamin C helping to lower high cortisol. Well Blimey and Blow me down!! This article reveals, via certain studies, that taking 1,000 mg of vitamin C before a workout lowered high cortisol even 2 and 24 hours after the workout, or taking 1500 mg Vitamin C for eight days put cortisol 57% lower….and more. So perhaps we have another treatment for thyroid patients who find themselves with high cortisol (as revealed by a saliva test, NOT a blood test) or a mix of highs and lows. This Psychology Today article says Vitamin C might be an essential part of stress reduction, which a mix of highs and lows in which saliva testing reveals.

IODINE DEFICIENCY MAY NOT BE FROM LACK OF IODINE IN OUR SOIL?

From 2004, the article titled “Nutrition, evolution and thyroid hormone levels — a link to iodine deficiency disorders?” proposes that iodine deficiency may be more about historical changes in what humans now eat rather than a decrease of iodine from the environment. He explains that T3 is actually dependent on the amount of carbs we eat. He states:

While our Paleolithic ancestors subsisted on a very low carbohydrate/high protein diet, the agricultural revolution about 10,000 years ago brought about a significant increase in dietary carbohydrate. These nutritional changes have increased T3 levels significantly. Higher T3 levels are associated with an enhanced T3 production and an increased iodine requirement. The higher iodine requirement exceeds the availability of iodine from environmental sources in many regions of the world, resulting in the development of IDD.

DON’T DISMISS THE INFLAMMATION PROBLEM WITH THYROID DISEASE…

Normally, inflammation is a naturally healthy and positive response of your immune system to counter the infectious problem of a virus, bacteria or fungal excess. It can also be activated by an irritant (picture a splinter in your finger) or damage to your cells from an injury.

But in thyroid patients, especially those who have remained undiagnosed or poorly treated on T4-only meds, the inflammation response can become chronic and problematic! You might even get the diagnosis of Fibromyalgia because of it! And while many thyroid patients may be clear they have inflammation, others may have it with no clue!  See the newest page on Stop the Thyroid Madness concerning the problem of inflammation, how to detect it, and what you need to do about it.

27 replies

If you could turn back the clock, would you have started on NDT instead of T4-only??

CLOCK turning back.bmp“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)?”

The above is an interesting real question asked by a new thyroid patient recently to other thyroid patients in a forum.

She is in the dilemma that so many NEW hypothyroid patients find themselves in when their doctors are pushing T4-only, yet patient experiences as outlined on STTM are saying that NDT was a better treatment for all too many. WHO TO BELIEVE?? Sure, some state they do well on T4-only, but is there more to the story?  Here are the answers from many different individuals in that string, plus more:

  • I would definitely go directly to NDT. NO doubt about it!!!
  • I never would have taken synthetics if I had known then what I know now. I have spent the last 15 years or so (maybe longer including the undiagnosed time) not in optimal health.
  • I agree 100% with the above two comments!
  • I would never have started on synthetic. Straight to ndt!
  • I was diagnosed 6 months ago. I switched after 2.5. I never felt any improvement on levo. If anything felt worse
  • I have been on over 9 different meds for the last 5 yrs. I found the STTM site, switched to NDT and I will never go back to all those drugs/meds! Life is actually returning to my body! The dr’s can keep you sick! Just my own personal experience!
  • I agree with the above. Had I known I would have never of taken Syncrap (Synthroid). Now I’m trying to fix the damage that has been done.
  • I have only ever been on synthetic (nine years), first Levoxyl and most recently Tirosint. If I had to do over, I would have tried NDT first no doubt.
  • On Eltroxin, heart issues were chest pains, numbness on my left arm, tachycardia, inverted t waves on the ECG which led them to believe i had a heart attack. I had a crazy fever and was doing reverse t3 clearout when that happened, but had it not been for synthetic, i believe i would not have gotten that bad. After taking synthetic for just a few months i also became thyrotoxic with large amounts of t4 pooling in my blood which ultimately meant to me i had conversion issues.
  • I’ve been on synthetic for 15 plus years. At the time I was desperate and even though I’ve done mostly natural on a lot of other fronts… I wasn’t aware there was an alternative. It seemed like a lifesaver at the time, as I was desperate. Now, with all the additional issues, which may likely be connected, I’d go with the natural for sure.
  • I took Synthroid, Levothyroxine and Cytomel… none of these synthetics helped me. I think my fibromyalgia diagnosis 15 years ago was due to an undertreated thyroid on Synthroid. I lost a LOT of hair as well! Armour’s resolved my hair loss within a week. It’ll take a while to grow back, but at least I’m not losing handfuls anymore!
  • I would have gone for Natural…I was HORRID on Synthroid
  • A year ago I got so sick I could barely walk to the bathroom. I couldn’t breath, shower, walk, and literally felt like I was dying. MY levothyroxine was raised from 225 to 275 which bought my TSH from 15 down to 2.5 which my NP thought was “great” – all the while I’m telling her I feel like I’m dying.  I will never ever go back to SYNTHETIC (T4-only)!!  Only wish I had even known there was NDT 25 years ago. I JUST heard of NDT 6 months ago through a Yahoo Group and then thank GOD I found STTM.  
  • If you have a choice ndt is a great option.
  • I would too have gone straight on NDT. I spent 2 yrs fighting with my levels (going from hypo to hyper) while taking Synthroid and Cytomel. Not one of the 5 doctors I saw could ever get me regulated. Within 3 or 4 months after I started self-treating (because I was living overseas where they don’t even have NDT) I was optimized…lost almost 40 lbs and felt wonderful.
  • I would have absolutely gone with NDT first…
  • If I had stayed on Synthroid for 6 months, I would not be here now because I would have committed suicide. I was thinking about it at 2 months. Thank God I discovered NDT (Natural Dessicated Thyroid) hormone then and switched.
  • I was on Synthroid for a good 20 years and would have said I was doing great, energy-wise. But I never realized that my rising cholesterol, need to nap and antidepressant was due to Syncrap being inadequate. I wouldn’t do it again, in spite of having better energy than others. 
  • I would not have tried synthetic thyroid first. NDT closely resembles the human thyroid hormones. NDT has T1 and T2 (which they are not even sure what the purpose of these thyroid hormones are yet), T3, T4, and Calcitonin. Calcitonin is important for bone strength. People who have taken synthetic, T4-only thyroid have eventually developed osteoporosis. Our bodies need all the ingredients in natural thyroid.
  • That’s easy. I would have started on desiccated. Why take the risk when T4 has caused so many problems for so many?
  • Yes. I am one who was started on both T4 and T3. I thought it was the right thing. When I switched to Np Thyroid, it was hugely better. It’s true what peeps say about it better even better. I do have good iron and cortisol.
  • Yes, yes, yes.

Another gal mentioned she would have gone to to the high iodine protocol first (on the premise that her hypothyroidism coud have been from low iodine).

Another said she didn’t do well on NDT, but she and any others in her shoes can discover why here i.e. it’s not about NDT–it’s about two common issues that NDT will reveal, and if treated correctly, one can soar on NDT!

Another felt it was a tough call due to some doing well on T4-only…but you have to consider that many aren’t as well as they claim (and are taking meds to bandaid the symptoms of a poor treatment), or they will and do see more problems crop up the longer they are on, in spite of doing well now.

Yes, if I could turn back the clock, I would have had better life experiences.

26 replies

Amazing and brutally honest “Tell It Like It Is” letter to her lousy Endocrinologist

ENDOCRINOLOGIST SOMEECARDFor years, a huge body of thyroid patients have remained hypothyroid, or gotten worse with increasing hypothyroid symptoms, due to believing in their doctors. 

And the worst group of doctors, as reported again and again by thyroid patients, have been Endocrinologists. So when a new person on any patient forum states they are looking for an Endocrinologist, more experienced thyroid patients wince. 

And this is why Stop the Thyroid Madness, and most especially the book, exists–to educate you about successful patient experience and wisdom so that in turn, you can recognize what is good doctoring, and what is NOT…in any physician.

Below is a graphic letter written by an appalled patient about her disappointing experience with her Endocrinologist. Nearly any thyroid patient can identify!

Dear —–,

I am writing to you as an ex-patient.

I saw you as a hypothyroid patient with significant weight gain, extreme fatigue, dry skin and poor concentration. You decided that I was “fine” on 50mcg of Thyroxine because my TSH was 3.9. You also suggested that I attend a bariatric clinic for weight loss.

I saw you a second time with multiple biochemical abnormalities. They were high cortisol, low bicarbonate, high anion gap, detectable CRP, and detectable ANA. You told me that none of these results were anything to worry about. 

I sought another doctor, because whilst you may be comfortable in completely dismissing numerous abnormal results in someone who remains symptomatic of hypothyroidism, I was not comfortable with this.

Since seeking a second opinion, here are the improvements I have experienced:

* no longer gaining weight

* no longer have dry skin

* no longer exhausted 24/7

* bicarbonate is now in the normal range

* anion gap is now in the normal range

* TSH is now 1

* I no longer need to take salt tablets in order to correct salt wasting

I have also received a diagnosis of Adrenal Insufficiency. This was gained via 4 separate saliva samples over a 24-hour period, which allowed me to see my cortisol fluctuations throughout the day. As I explained to you, I felt that my cortisol was too low during the day and too high at night. This is exactly what my salivary cortisol results show.

You ordered a 24-hour urinary cortisol test for me, and I asked if it would show you my fluctuations throughout the day. You said that it would. I want to draw your attention to your completely erroneous statement. I have no doubt that you were simply trying to end the discussion with me.

My urinary cortisol tests were normal, as I expected they would be. But, this normal result did not indicate just how inappropriate my cortisol secretion is. That is, too high at night and too low during the day. I am thankful that I did not remain under your care, as I have no doubt that you would have continued to minimize my concerns regarding my cortisol levels.

The treatment I have received since leaving your care is T3 medication (RT3 and liver enzymes are both abnormal until I correct the cause and then move to Natural Desiccated Thyroid). This is the first time in years that I have seen an improvement in my thyroid health (lowered TSH, increased fT3), and my adrenal health (I no longer require salt tablets). I don’t think you ever bothered to test my aldosterone levels, which I consider to be negligent in a case where the patient is urinating frequently and requiring salt supplementation.

You and your peers are quick to label hypothyroid patients as lazy — not outright, but by your tones and your suggestions. Rather than offer me an increase in Thyroxine, you condemned me to many more months of poor health. You felt I was better off going to a bariatric clinic than changing my medication! And I know that you would never have offered me an alternative thyroid medication. So, under your care, patients such as myself (who have felt no benefit from Thyroxine) are surely just lazy drama queens. Or so your behaviour would indicate. It’s even more distressing that you maintain this attitude despite clinical signs of hypothyroidism (weight gain, dry skin, exhaustion), and despite multiple biochemical abnormalities.

It’s odd that Thyroxine is the standard medication for hypothyroidism, as effective treatment with this requires that T4 is converted to T3. For many patients, it may be a fair assumption that this conversion process will take place. However, for those of us with continued symptoms and biochemical abnormalities despite “adequate” doses, it is clear that something is not happening as it should. For me, the dramatic differences in my health since beginning T3 medication has demonstrated that conversion was not taking place as it should. You and your peers are happy to call me lazy, but I know that a simple medication change is all that was required to regain my health.

I am aware that T3 medication is dangerous for heart health at high doses, and that this fact makes many doctors avoid its use in cases of hypothyroidism. However, I have three reasons to oppose this conduct:

1. Most medications are dangerous in high doses. T3 is not alone in this regard.

2. In someone with hypothyroidism who has experienced no benefit from Thyroxine, supplementing with T3 medication (or even better, natural desiccated thyroid) is just replacing what the body is struggling to create. This does not mean that the patient’s T3 levels are suddenly excessive, or consequently dangerous.

3. The damage done by inadequately treated hypothyroidism is significant, and certainly greater than low doses of T3 supplementation

So, I write to you both despairing at the level of care you provided, and relieved that I’ve found better care elsewhere. I’m sure you’ll ignore this letter, as you and your peers remain adamant that Thyroxine is the only form of treatment, and those who fail to see improvements must themselves be lazy or unmotivated. This attitude is clearly that of people who have never experienced the devastating effects of inadequately treated hypothyroidism. I hope that one day you and your peers will be able to show empathy for patients such as myself, whether you’ve personally experienced hypothyroidism or not. Whilst personal experience of hypothyroidism should not be required in order for doctors to be empathetic, walking a mile in my shoes would no doubt change the way you treat your patients.

I will continue to see improvements to my health with the addition of T3 medication, and I will be thankful that I am no longer under your inferior care.

A happily-former patient of yours

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