Hughes Syndrome/APS an Autoimmune Condition

[MaryF]

This can go with a Thyroid condition and be overlooked!

Hughes Syndrome/APS otherwise known as Sticky Blood or Antiphospholipid Syndrome, is something frequently missed by the medical profession, with unfortunate and serious consequences.

If you have a family history of autoimmune disease including Thyroid disorders, or relatives past and present with pregnancy loss, heart attacks, DVT's or strokes at an early age, and you yourself or close relatives suffer from stubborn migraines, which do not respond to standard medication, it is worth getting tested.

My whole family has this, our new charity aims to educate the public and the medical profession, we carry a list of doctors who full understand the condition. We have an event coming up in London if of interest. The website below is a good read, from the symptoms, to the treatment and also associated disorders. Some people even get wrongly diagnosed with MS as the features are so similar.

Basically if you have sludgy blood it will affect your brain and give you migraines among other symptoms. It is not unusual to have a Thyroid problem alongside this plus sometimes Sjogrens Disease, many are told they have 'Fibro'. My migraines did not go away until I had Aspirin and at times anticoagulation. Some woman unfortunately have multiple miscarriages and stillbirths and take years to get tested, the tests are cheap for any GP or consultant to order.

eventbrite.com/e/book-launc...

Hughes Syndrome/APS is a sort of cousin of Lupus!

ghic.world/

our next event: eventbrite.com/e/book-launc...

MaryF

[nightingale-56]

Good to hear from you MaryF and thank you for bringing this to our attention.

[HughH]

There is another genetic condition, Impaired Sensitivity to Thyroid Hormone or Thyroid Hormone Resistance, which may also be connected to the conditions you mention.

It is rarely diagnosed by doctors but can have similar symptoms.

[MaryF in reply to HughH]

ghic.world/ MaryF

[HughH in reply to MaryF]

Could thyroid issues be the cause of many of the other 4 in 5 pregnancy loss, strokes, DVTs, heart attacks and Lupus?

[MaryF in reply to HughH]

Certainly a Thyroid out of kilter will not help, but this disease is a disease in it's own right.... Prof Hughes did write in TUK's Harmony magazine, I can give you the article under here if you want it. MaryF

[HughH in reply to MaryF]

I have read up on APS and do not want to take away from the excellent work of Prof Hughes and many others but just want to raise the possibility of a thyroid link with APS.

As we know from this forum many people have a diagnosis of both hypothyroidism and fibromyalgia. Dr John Lowe however felt that fibromyalgia was simply an undiagnosed or under-medicated thyroid condition. This happens because doctors rely exclusively on thyroid blood tests to for diagnosis and to determine the amount of thyroid medication and also their reliance on T4 only treatment.

Could it be possible that, similar to fibromyalgia, APS is a symptom of an undiagnosed or under-treated thyroid condition?

It would be very interesting if people suffering from APS took their basal temperature. A low basal temperature would reveal an ongoing thyroid problem. If basal temperatures are normal it will prove that this idea is wrong.

[MaryF in reply to HughH]

The trio of disease often described is Hughes Syndrome/APS, Thyroid problems and Sjogrens. Is a stand alone condition, but once you have one condition you are more likely to have others, some start with a Thyroid condition, others get one later on. I am familiar with all the great Thyroid doctors, including the one you mention. This disease is a cousin of Lupus. Most people if suspicious that they already have a thyroid problem, do advanced private testing beyond the TSH you do at the GP surgery, some have a Thyroid problem, others don't, some have low D, B12 and Iron, which of course makes a Thyroid problem worse or indeed just make somebody very unwell. MaryF

[MaryF in reply to HughH]

ps if you want to test yourself there are 3 main tests to do which reveal whether or not you have the disease, tests completely separate to thyroid tests.

MaryF

[HughH in reply to MaryF]

There is another thyroid condition, which thyroid blood tests will not often detect and which doctors generally know nothing about - Impaired Sensitivity to Thyroid Hormone (ISTH), also known as Thyroid Hormone Resistance.

Research by Dr Broda Barnes, using Basal Temperature, showed that 40% of people have a low basal temperature and he therefore regarded them as hypothyroid. We now know from blood tests is that only about 5% of people are hypothyroid. The remaining 35% of people with low basal temperature may have ISTH.

Only a very small percentage of people with ISTH know, or even suspect, that they have the condition. Many of them have good health and have no reason to look for treatment. Some people with ISTH have mild symptoms which they learn to live with by making changes to their lifestyle, such as getting extra sleep. It is only when the symptoms become more severe that people look for medical help.

ISTH is genetic which would explain families where many members have thyroid or autoimmune conditions.