Thyroid UK
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Advice re antibody testing

Hi I am new here.

In February I was admitted to hospital as I collapsed at home . I had a tonic clonic seizure in a&e and was admitted to intensive care , in a coma for 12 days with encephalitis following MRI ( swelling of the brain )TPO antibodies >1300 ..... Tsh was 0.4 , free T4 was 17.2 . Free T3 was 3.1. Low sodium levels 112. they treated me for suspected autoimmune encephalitis and discharged home on large dose of steroids, anti seizure Meds. I have suffered badly with side effects from all the medication including , insomnia, anxiety and at times suicidal thoughts . My consultant is now saying that the test for NMBA R antibodies was negative, and after seeing her yesterday she is re testing for , TPO antibodies , Casper 2 , LGit and NMDA. R antibodies as well as TSH & free T4 but that her overall advice was to refer me to psychiatry re anxiety !!!!! I'm worried that now all the tests will be negative and I will be left with a psychiatric referral and yet another medication added . Any advise please . Hashimotos on Levothyroxine since 2012 .

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The first thing to do is to get a new blood test. It has to be the very earliest possible, fasting (you can drink water). I am assuming you haven't been diagnosed with a dysfunction of your thyroid gland yet? Don't let her refer you yet, as she hasn't eliminated hypothyroidism or hashimoto's. Low thyroid can cause anxiety and I am sure you will tick off quite a number of symptoms:

thyroiduk.org.uk/tuk/about_...

You need a new blood test. It has to be at the very earliest, fasting (you can drink water). If you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards.

Ask GP for - TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Ask also for B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Always get a print-out with the ranges for your own records and post if you have a query.

thyroiduk.org.uk/tuk/get_in...

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Thank you for your reply , yes I have been diagnosed with Hashimotos since 2012 and was subclinical before that . and I take Levothyroxine 100 , Vit b12 and Vit D .

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Some people don't feel well on levothyroxine but others have no problems. I am assuming you don't? Researchers have found that a T4/T3 combination works best.

You haven't given the ranges of your results (ranges are in brackets after the result). I am assuming your FT3 was very low and it is T3 which is the only Active Thyroid Hormone, it is needed in all our T3 receptor cells and we have millions in our body and the brain and heart need the most.

I am not medically qualified and had undiagnosed hypothyroidism until I diagnosed myself. I now self-medicate too.

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There's not much point in her retesting TPO antibodies, given that you've been diagnosed with Hashi's. Even if they come back negative, you will still have Hashi's, it's for life. But, antibodies fluctuate.

100 mcg levo is not a very big dose, so you could very well be under-medicated. There's also a strong possibility that you don't convert very well. Hashi's people often don't. And low T3 would cause 'psychiatric' problems. But, you won't know about that unless you get your FT4 and FT3 tested at the same time.

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They are looking for a possible cause for the encephalitis and need all antibodie's testing . I had been in a confused state prior to being hospitalised. I am still feeling so ill but not sure what is thyroid related or side effects of medication. The steroids and anti seizure medication is brutal . no T3 has been requested on this test . I may add it myself ?

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Even if you did add it yourself, I doubt the lab would do it. The lab rules, these day. You could, perhaps, get them tested privately?

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Hi, has anybody in your family past or present had autoimmune disease including thyroid problems, also heart attacks or strokes at a young age? Also if female miscarriages or still births. The administrators on here are fully informed that Hughes Syndrome/APS is an autoimmune disease which also carries the risk of having a thyroid problem. I enclose the relevant website: ghic.world/ I also enclose an article that Professor Hughes wrote for the TUK magazine.

Thyroid’s “fellow travellers”

In a recent issue of your magazine “Harmony”, a correspondent in the Q & A section wrote, “I have been diagnosed with under-active thyroid. I still have lots of symptoms even though I take 50mcg of thyroxine a day. Can I take any supplements on top of this that might help?”

If your continuing symptoms are aches and pains, fatigue, ‘scratching’, dry eyes, migraine, memory loss, balance problems – take note.

As you know, thyroid disease, especially underactive thyroid, is recognised as an “auto-immune” disease. – and autoimmune diseases run in families. Many of these families have histories of other autoimmune disease.

Two of these conditions commonly – probably very commonly – accompany thyroid problems. These 2 conditions are Sjogren’s Syndrome and Hughes Syndrome.

Sjogren’s Syndrome. Henrich Sjogren, a Swedish eye doctor, described a condition which included dry eyes, dry mouth and rheumatic pains. Sjogren’s is now recognised as being due to an overactive immune syndrome. The clinical picture includes vaginal dryness, bladder symptoms (recurrent cystitis) and aches and pains (commonly given the unhelpful label of ‘fibromyalgia’). It is a common condition especially in women over 40.

And yes, it is commonly found accompanying a thyroid diagnosis (especially Hashimoto’s).

Hughes Syndrome: Recognised 30 years ago, this is another so-called autoimmune condition, called “sticky blood” by the media. The cumbersome medical title we gave to the syndrome 30 years ago is “Antiphospholipid syndrome” – APS – as the condition can be detected by a simple ‘antibody’ blood test).

The condition appears to increase the risk of ‘sludging’ or even clotting of the blood, leading, for example, to DVTs (vein thromboses).

Two organs appear to be especially vulnerable to “sticky” blood. Firstly, in pregnancy, the placenta. Sludging of the placental blood supply leads to poor nutrition of the foetus, to miscarriage and even to late pregnancy loss – Stillbirth.

Hughes Syndrome is now recognised as the commonest, treatable cause of recurrent miscarriage – some women having suffered a dozen or more miscarriages.

The other organ particularly affected is the brain. Perhaps the 2 commonest ‘brain’ symptoms of Hughes Syndrome are migraine – often severe and dating back to childhood, and memory loss – sometimes mild – but occasionally bad enough to lead to worries about Alzheimer’s.

Other ‘neurological’ features are pins and needles, balance and visual problems (frequently misdiagnosed as ‘multiple sclerosis’). In extreme cases, patients can suffer TIAs (transient ischaemic attacks) and stroke – indeed, one study found that 25% of young (under 45) women with stroke tested positive for Hughes Syndrome.

Of course, the impaired circulation can affect other organs – the heart (angina), the limbs (clots and “claudication” – pain the calves on walking) – the gut (“gut angina” – tummy pain after a big meal).

Recognition

Hughes Syndrome is now becoming recognised internationally (at an international conference in October, 600 clinicians and researchers met to update knowledge of the condition).

Thyroid’s fellow travellers – Important to recognise?

Both Sjogren’s Syndrome and Hughes Syndrome can and often do, respond well to treatment

Sjogren’s – in particular the fatigue and aches and pains, often respond surprisingly well to an old fashioned medicine – quinine (the agent used is Plaquenil – a safe and widely used medicine).

Hughes Syndrome usually responds well to treatment of the ‘sticky blood’ – with either baby aspirin (75mgs once a day) or with heparin (now widely used in Hughes Syndrome pregnancy), or, in more severe cases, with warfarin.

The results have been spectacular – the pregnancy success rate in Hughes Syndrome, previously less than 20%, is now over 90%.

And one of the most satisfying results is the disappearance of migraine attacks and the improvement in memory loss, seen when simple anti-clottng treatment is started.

So, Q & A lady, don’t just think Thyroid or ‘supplements’ – ask about Thyroid ‘fellow travellers’.

For further information (including the monthly ‘blog’ “Listen to the patient”, contact:

Hughes Syndrome Foundation – hughes_syndrome.org. and The London Lupus Centre – londonlupuscentre.com.

Graham Hughes

The London Lupus Centre

London Bridge Hospital

(www.londonlupuscentre.com)

Come back to me if this rings a bell, I run a forum on this platform with a few other people, and we encourage our members with thyroid disorder to come on here and vice versa.

MaryF

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Hi MaryF

This is very interesting reading. I have 2 fellow travellers of hypothyroidism, adrenal insufficiency and now diabetes. I have no idea if I am going to get any help from the Endo or if I’m going to be set adrift with diabetes tablets and glucose testing kit. I have other health issues too. Usually I’m quite upbeat but there are times...

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I find this all very depressing. I still have symptoms, but my dr. thinks my TSH is perfect. I've tried liothyronine with levothyroxine and didn't feel any difference. Recently took prednisone for poison ivy and felt great. Unfortunately, I can't take that all the time. I mostly ignore my symptoms, but I hate it. :(

joch, I hope you get things figured out! Any more, doctors just throw pills at a problem.

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