Month: April 2013

For 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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• See why actress Sofia Vergara is doing thyroid patients no favor by representing Synthroid here. 
• Been told you have Chronic Fatigue Syndrome? It might be more than you think.
• Are you on Flat STTM?
• Identical UK twins talk about their hypothyroidism here.