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Tag: heart surgery

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.

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Suffering on Synthroid: imagine how horrific it was before the internet

Elizabeth Alexander 1959(Though this post was originally written in 2009, it has been updated to the current day and time and still applies!)

I think back about my mother.

At age twenty-one in 1939, she had most of her thyroid removed due to Graves disease and hyperthyroidism. Because a small part remained, hyper set in once again by 1960 complete with bugged eyes.

So Radioactive Iodine I-131 was the next step to once-and-for-all annihilate the thyroid and hyperthyroid symptoms.  Not long after, as her thyroid hormone levels fell, she was one of the early victims of the “new and modern” T4-only medication called Synthroid.

And all hell broke loose.

Depression enveloped her everyday life—one of her worst lingering symptoms of hypothyroidism due to the shoddy treatment of a T4-only med. I remember her moods, her frequent anger and lack of patience, and her constant counseling appointments.

Why all the counseling appointments? You can imagine that the doctor had no clue that her problems was being on Synthroid with nothing more than T4-only. No direct T3….something which a brain needs.

The last resort–Electric Shock Treatment

By 1963, and right before President Kennedy was shot, she submitted herself to Electric Shock Treatment in a futile effort to control her depression.  What a crock.  She was never again the bright and quick-witted woman I remembered as a younger child. Her brain was fried and she had a new dull flat reaction to life.

And for the rest of her life, she lived on her antidepressant/anti-anxiety med Elavil and had daily constant naps, weight gain, rising cholesterol, dry hair, heart surgery, stiff joints, brain fog and inability to stand on her feet long–her own manifestation of lingering symptoms while on the lousy thyroxine.  Additionally, her long-term use of antidepressants made her emotions completely flat…..

And she did the T4-only horror show…all…by…herself. No internet,  no patient groups and forums, no Stop the Thyroid Madness website, blog or book,  no good doc, no thyroid Facebook or Twitter groups, no other good thyroid books or websites. Nada. I came along as a Thyroid Patient Activist too late for my mother, who died in 2003.

It makes me shudder thinking of that lonely hell.

But then again, it’s not just in the far past: it happened to her only daughter, me, for nearly 20 years. Complete lonely hell of my own with intense and disabling Dysautonomia (an overreaction of my autonomic nervous system) induced by my continued hypo state while on Synthroid and later Levoxyl.

And today, because the mass media or any media personality refuses to speak the truth of the 55 year scandal of T4-only meds like Synthroid, Levoxyl, levothyroxine, Eltroxin, Oroxine, or the cuckoo’s nest of the TSH lab test and range, HUNDREDS OF MILLIONS of individuals still suffer. How stupid can they get.

This is a scandal that has effected a huge mass of individuals globally, past and present,  including those today who STILL linger with undiagnosed hypothyroidism thanks to the worthless TSH lab test or lingering hypo on the lousy T4-only medications. And all the above when we, as patients, have learned a far better way to treat our thyroid problems

Did you have relatives like my own Mom (who died in 2003) who lived the T4-only scandal alone?  Use the Comment form to tell us about them.  Have YOU suffered from a T4 med? Report it to the FDA here.

24 replies