Sticky Blood-Hughes Syndrome Support
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A great reply regarding a Thyroid patient from Dr Martin Scurr

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


In case of link fuss etc;

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


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


8 Replies

I had often seen you mention the link between thyroid and Hughes etc, but as any time i was tested the results appeared either negative or inconclusive I assumed i was clear.

But reading on the subject recently has made me wonder whether that is in fact the case.

If there is a chance that steroids could mask the condition, then its possibly why I get so many problems each time my steroids are reduced.

I have had incredible levels of fatigue through much of my adult life and now realise that there may have been an explainable reason all along.

I would like to attempt to correct any possible deficiencies nutritionally instead of adding yet more drugs to the mix, but it is made so much harder when having to negotiate blood thinning meds.


I urge you to join Thyroid UK on this platform, you can have the same log in and user name etc. They have a link to their own charity page from that forum also, many of our members are with them also and some of their's with us due to the obvious links between us all. MaryF


I have actually signed up to a number of forums on HU related to my condition and although I don't avidly watch and read the thyroid postings I am aware that the number of postings vastly outweighs any other forums posts that I am a member of.

That is what prompted my recent search for information on thyroid issues as fatigue often listed as a thyroid problem is mentioned in connection with just about all the auto immune conditions.

I know others have made the same connections, some ages ago, but something seems to prevent 'cures' being found.

That's the bit that perturbs me.



There is no actual cure for a thyroid problem, but the vast majority of people are on treatment and return to good health and a 'normal' life! :)

I would suggest posting your latest thyroid blood results on the TUK group. :)

People will be more than happy to help you decipher them! :)





I PM-ed you, MaryF.

Hope you wouldn't mind.

Many thanks in advance.


Link does not work...........................?? Apologies for the "link fuss" :-(


Thanks no matter how I copied and pasted it, it turned 'dead' so the article is in full instead, as you can see. MaryF x


Yes, I saw - silly me! What a great find, MaryF - you're a star!!!!

Hugs & hand shakes xx

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