Many of us with Hughes Syndrome/APS have Thyroid problems, many of us are told we do not, due to the way the tests are done and relied upon! Also at times the right and more detailed tests are not done. Here is an informative and clear answer from Dr Scurr who of course kindly donated time to attend our recent Patient's Day at St Thomas' Hospital:
As you are aware Professor Hughes himself often writes about the trio of disease - Hughes Syndrome/ Sjogrens Disease and Thyroid disease
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I was diagnosed with an underactive thyroid 16 years ago. For a long time, I was monitored by my local hospital. But for the past few years, my GP has taken sole charge and has been steadily attempting to reduce my medication as he is not a fan of pills. Recently, my old symptoms have come back: weight gain, tiredness in the day and slowed mental faculties, loss of libido, aching legs and arms, thin hair and cracked lips. If I try to challenge my GP, he'll tell me I'm being silly and he knows best. I am 56.
There is a puzzle here, and I hope that I can help you to disentangle it.
The thyroid gland, in the front of the neck, secretes the hormone thyroxine into the bloodstream - thyroxine plays a role in key processes including body temperature, hair growth and brain function.
If you don't have enough of it - a condition known as an underactive thyroid or hypothyroidism - perhaps unsurprisingly, the symptoms are wide-ranging, including fatigue, inability to tolerate cold, and weight gain.
Typically, this is caused by the body producing antibodies that irretrievably damage the gland, an auto-immune disease that occurs in one person in every 200
In some cases, it may be genetically determined. But an infection in the thyroid - usually a viral thyroiditis - can also be a trigger.
An underactive thyroid is treated with a supplement of the hormone - a small, white tablet of what is, nowadays, synthetic thyroxine. Previously, dried animal thyroid extract was used. This is not a drug treatment, but a topping up of something you are not making for yourself - like a diabetic tops up their insulin by injections.
To check the dose of thyroxine is correct, we periodically carry out a blood test, perhaps every six or 12 months, measuring thyroxine levels, as well as thyroid stimulating hormone (TSH) - this comes from the pituitary gland in the brain.
The GP needs to confirm tests do show normal levels of thyroxine and TSH
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The GP needs to confirm tests do show normal levels of thyroxine and TSH
There is a feedback loop between the thyroid and the pituitary and, if the thyroxine level is too low, the TSH level rises. If the thyroxine level is too high, the TSH level becomes suppressed.
So, measuring levels of both is a good test. Not only do we learn the actual level of thyroxine in the blood, but by measuring the TSH level, we have confirmation that the brain tissue senses that the thyroxine level is satisfactory.
The puzzle is that your GP has been steadily reducing the essential hormone supplement: I would hope that this is in the context of the lab tests I describe, but it does sound - given that your old symptoms have recurred - as if the dose has lowered too far.
I recall a key lesson taught to me years ago when taking my postgraduate exams. Dr Maurice Pappworth, one of the greatest medical teachers of the past century, used to say that when it came to supplementing the thyroid hormone, 'treat the patient and not the lab result' - take into account how the patient feels and do not merely focus on figures on a report.
Given that the symptoms of too little thyroxine are fatigue, feeling cold, poor memory and concentration, weight gain, hoarse voice, and poor hearing; and the signs are dry skin, cool extremities, hair loss, slow pulse, and maybe other observations - many of which you are experiencing - I would suggest talking to your GP.
Ask him to confirm your tests do show normal levels of thyroxine and TSH - and, if so, can there be an explanation for the current symptoms? The picture you describe demands deliberate, firm communication from you - be bold. Answer by Dr Martin Scurr
MaryF
INR Level Low
Do confirmatory tests have to be positive for Hughes Syndrome?
