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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

British Thyroid Association still thinks a TSH up to 10 is borderline NORMAL????

A thyroid patient from the UK, and a member of Thyroid UK, reminded me of the ongoing travesty in the UK concerning the TSH lab test. And I thought it was worth revisiting due to its extreme absurdity. Quoting from www.brf-thyroid under FAQ, then Hypothyroidism, then Treatment:

The most sensitive indicator of developing hypothyroidism is a rise in the TSH result. Generally a TSH result of <5 is regarded as biochemically ‘normal’, a result of 5-10 is borderline and a result of >10 (in a patient who is not acutely ill) is regarded as consistent with hypothyroidism. The biochemical results have to be considered along side clinical symptoms, and together they determine the point at which the physician will introduce Thyroxine therapy.

Yikes. 5-10 is only BORDERLINE hypo?? What planet to they live on?? I have come across MANY thyroid patients on internet groups who have had a TSH below 3 with RAGING hypothyroidism, and for YEARS being told they were normal. Never, ever has the TSH been a “sensitive” indicator until it finally rises enough to reveal it….but that can be YEARS in the making, and the patient is now living with adrenal fatigue to further complicate their ongoing hypothyroid condition. The TSH lab test does NOT work.

Then from http://www.british-thyroid-association.org/Guidelines/, and downloading the 2006 final version of the UK guidelines for the Use of Thyroid Function Tests , and reading 3.2.2, comes this:

The decision on treatment of patients with subclinical hypothyroidism should be guided by repeated TSH measurements. When TSH is elevated but <10 mU/L there is no consistent evidence of an association with symptoms, secondary biochemical abnormalities (hyperlipidaemia), cardiac dysfunction or cardiac events.

No consistent evidence of an association with symptoms?? Then what ARE those symptoms that thyroid patients have experienced over and over and over, even with a TSH as low as the 2’s??? And repeated TSH measurements?? There is a huge body of thyroid patients across the world who have had years of a NORMAL TSH yet raging hypothyroid symptoms.

They also add:
There is evidence of improvement in the lipid profile and symptoms when patients with modestly raised TSH (mean 11.7mU/L) were rendered euthyroid with thyroxine

Calling anyone “euthyroid” (normal thyroid-wise) on a T4 med, with an average TSH of 11, is so laughable that it stands on its humorous own.

The Dark Ages persist in the diagnosis and treatment of hypothyroidism. What a shameful, blind-sighted travesty! Are you from the UK and dealing with the backwardness? Talk to us by replying to this blog (and be patient–comments don’t always show up quickly.).

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The walking SILENT SUCKERS of Synthroid, Levoxyl & Levothyroxine treatment

It would make an incredible horror movie. The plot: stunningly convince at least hundreds of millions of individuals worldwide that what has always been obvious, isn’t. That leaves only look green because of alien filters in your eyes. That ripe apples fall because water pulls them down. That fire doesn’t really burn your skin; it’s just your imagination.

And about hundred more schizophrenic ying yangs. Because if those in authority say so, it must be so.

But the horror movie is a reality, and I see it EVERY TIME I come into contact with people and the subject of my thyroid advocacy comes up.

Like today. A couple saw my book and struck up a conversation. She was on Synthroid; he was on Levoxyl. They had each been on their T4-only treatment for 12 and 14 years respectively, felt their hypo was perfectly treated, believed their doctors…and were now dealing with other problems: his rising cholesterol, her depression, his fatigue, and her weight gain. BUT OF COURSE, THOSE HAVE NOTHING TO DO WITH THEIR T4-ONLY TREATED HYPOTHYROID AND SOME OF IT IS THEIR OWN FAULT…leaves aren’t really green, water makes ripe apples fall, and fire doesn’t really burn.

It just struck me. And it’s struck me before. There’s just a LOT of SILENT SUCKERS walking around. I was one; my mother was one; and there are obviously millions out there, still walking around trying to live with the side effects of a treatment that their doctors say are NOT caused by their thyroid.

Sad.

(Has your cholesterol and other lipids improved since you switched to Armour and raised without using the TSH? Your story of success is welcome on the blog post below!)

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Has progress been made with thyroid treatment??

Sometimes I ponder: the current movement away from Synthroid & Levoxyl and all other T4-only meds to desiccated thyroid like Armour (as well as the understanding of the high prevalence of adrenal fatigue with thyroid patients), has been going on for ALL of the 21st century. In other words, patients were starting to talk about desiccated thyroid like Armour by the year 1999, and Yahoo’s Natural Thyroid Hormones group was started in 2002. Other patient groups sprung up around the same time. The latter group is also where the knowledge about adrenal fatigue in thyroid patients grew, which was further added to on STTM. So….has there there been any changes in the way thyroid patients are treated for their hypothyroid and related conditions?

The YES

Sometimes I can say a resounding yes! There are many doctors around the world who are looking at Stop the Thyroid Madness (STTM) and listening to what is says. STTM is about the real life changing experience of patients! Some doctors tell me outright, either via the Contact Me form or by responding to my blog posts here, that they are reading it and approving the information. Or, I find out about other doctors second hand by patients who tell me their doctor TOLD THE PATIENT to read STTM. The latter definitely makes me chuckle when so many doctors tell patients that information on the internet is DANGEROUS! 😆

I can also say yes when I read the comments of patients on various thyroid patient groups on the internet. Because of the information patients have learned from STTM, which is in turn passed into the groups, patients all over the world are making demands in their doctor’s offices, and some progress is being made all over the world.

And a final yes can be uttered by me when I see a few but growing number of websites promote desiccated thyroid.

The NO

But there are so many situations where I have to say no. 1) When doctors on internet forums TO THIS DAY continue to give lousy advice to thyroid patients, it’s disheartening. 2) When patients on thyroid patient groups TO THIS DAY continue to have doctors state each and every ridiculous give me a break comment, it’s sad. 3) When a famous female talk show host continues to ignore each and every email sent to her for years about the deplorable situation across the world with thyroid patients, as well as seem to misunderstand her OWN thyroid and potential adrenal problem, it’s maddening. 4) And when I can run into patients DAILY when I go to the grocery store, or to the gas station, or to any public place, who are still on Synthroid or Levoxyl and coping with innumerable symptoms of a poor treatment, not excluding adrenal fatigue, it’s scandalous.

So the complete answer? Yes and no. The ball has definitely been rolling for better treatment. Some doctors out there are truly listening. Many patients out there are learning and demanding change. It’s happening. But baby, we have a LONG WAY TO GO. And the power will be in the hand of patients who question their treatment, find answers via STTM and other websites and patient forums, and continue to demand change from their doctors and the entire medical establishment. I just hope to see more change sooner than later, don’t you?!

p.s. Want to spread the word?? Go HERE to order a t-shirt or bumper stickers. You CAN make a difference!

8 replies