Thyroid antibodies

[deesbees]

Morning all,

Hope you are all keeping warm!

My son was tested for hyperthyroidism last week and it all came back ok apparently (they didnt give me the actual results) but!!

A) I have graves and had it undiagnosed during pregnancy despite clearly showing symptoms

B) my son is extremely hypermobile to the point his fingers dislocate, many joints are badly affected and he is very anxious and tearful. He also has club feet mildly, recurrent mouth ulcers and feels the cold - often being blotchy looking. He complains of flank pain, and testicular pains strike him randomly. My two other kids are also hypermobile and autistic.

Is there anything i should be looking at/for? Hes top of his class and a real little star - always trying hard but really vulnerable (school have put him in the specialist resource form as they also have concerns) but in his own words 'so why do i feel so rubbish then?'

Hes 13.

Thankyou in advance.x

[SlowDragon Administrator]

I would get copies of results and find out exactly what was tested. What a GP says is "normal" often isn't

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Low B12 is being researched in connection with autism

Low vitamin D is widespread

Low vitamin levels affect thyroid

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available, but can be problematic ordering for a minor

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

[Anthea55]

My daughter is hypermobile and has Raynaud's which gives cold hands and extremities. She has recently been diagnosed with EDS (Ehlers-Danlos Syndrome).

You may have found these websites which look helpful

hypermobility.org/

ehlers-danlos.com/what-is-eds/

I know this runs in families too.

All the best.

[deesbees in reply to Anthea55]

Ah...EDS! I suspected this might be a potential avenue some years ago - my others have probs too - but was told it was nonsense(!) If i hadnt been so ill at the time id probably have pursued it more but im a single mum with not much spare time...my 20 yr old says he thinks he has that too (numerous issues) so it was a real lightbulb moment to see your reply! (He has a w/chair bound half sister with a connective tissue disorder but i dont know what it is,that info came via a 3rd party) and my daughter is also capable of bending in all the wrong ways..

Trying to get results of bloods today. Hmm. Not looking forward to it. Hate all this medical stuff - im rubbish as a patient even though im a trained nurse lol !

[Anthea55 in reply to deesbees]

Strangely, as she's not blood related, my daughter-in-law also has EDS and has had real difficulty getting a diagnosis or finding any doctors who know anything about it.

I think my daughter said that having a diagnosis means that she can be classed as disabled - not absolutely sure.

Would any of the helplines from those links I gave you be useful? Worth a try.

Also I think I saw a Healthunlocked community for EDS, so you might post there.

[deesbees]

Yes she would - EDS is potentially a pretty horrible thing - my eldests' aunt and uncle both died of brain haemorrhages at around 40! His father is horrendously overweight but no joint issues as far as we know.

I was hoping to get time to check out those links you kindly supplied but havent been able to yet - ill do that over the next day though as we have a GP appt tomorrow at 5.

Theres various sorts of EDS i gather - and i raised this with paeds around 10 years ago. It ended with me being accused of factitious illness so if i turn out to be correct i will take whatever action i can-my kids have all struggled and if i find that was needless...well...hmm.

[Anthea55 in reply to deesbees]

Just had a look at the Community for Ehlers-Danlos Support.

I went to My Communities at top of the page which had an option to Browse Communities and I had a brief look.

Looks like it would be a good community for you to join and get feedback from fellow sufferers.

By the way, if you reply to someone use the Reply tab at the end of the message, then that person gets an email to say that you've replied. I picked this up because I saw that you'd Liked it.

Keep fighting and have a good Christmas!

[deesbees in reply to Anthea55]

Oops i didnt see this last bit about replying but i replied further below xx

[deesbees]

Just got back from gp. Son very upset. 'Well your blood test came back normal' despite him attempting to explain his symptoms, very different from the pleasant smiley person he first met but she did refer him onto paeds. I havent got the courage to ask for the results because last accusations resulted in threats of care proceedings, encounters with a truly vile social worker and it caused untold anxieties for my children. Im nauseous just typing this. I guess we just wait for paeds then. When my son asked how long it took me to be diagnosed i told him it took absolutely years because i was subclinical and my ft3/4 werent checked. He was horrified. Also said he feels 'destroyed' as he feels like he isnt believed. This is appalling.

[Anthea55 in reply to deesbees]

I'm glad that MaryF has joined in for you. You are in good hands and I'm sure this will take you in the right direction.

All the best.

[MaryF]

When you say your son looks blotchy is it anything like this, even a milder version, medicinenet.com/image-colle...

Also does he get migraines?

MaryF

[deesbees in reply to MaryF]

Yes -all of them do! But not all the time and not with migraines. Why dyou ask? He complains of - feeling cold, light hurts his eyes, gets emotional, gets sicky burps and heartburn, shakes, joint pains and 'random shooting pains' dry mouth and eyes, struggles to clean his teeth properly as his mouth is so dry at times, craves sugar, has club feet, cant open a drinks can - fingers hurt, but apparently the blood test was 'normal' so theres nothing wrong! He cried last night - and said 'i feel like they think im a liar and i feel like everything i experience has been invalidated"

Havent slept much x

[MaryF in reply to deesbees]

If there is a sign of Levido Reticularis, then just to rule it out it is a good idea to get tested for Hughes Syndrome/APS, otherwise known as Antiphospholipid Syndrome, or sticky blood.

This is an autoimmune disease and often a thyroid disease comes along as well and perhaps Sjogrens DIsease which causes dry eyes and a dry mouth. I have this disease and of course a Thyroid problem, however of course like many my thyroid disease did not show up until I did private detailed tests rather than just the TSH. I enclose the blood tests and a useful paper to read. I run the patient forum for Hughes Syndrome/APS with a colleague on this platform, plus we are trustees of the relevant charity so come back to me if any of this looks likely.

The three blood tests, and none of them are a Lupus test, although this disease is like a sort of cousin of Lupus, it is rather a misleading test name.

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

the-rheumatologist.org/arti...

MaryF

[deesbees in reply to MaryF]

Well i would but i was accused of factitious illness and social services were involved so now we're all terrified again. The gp last night didnt even examine him. Just a flat 'not interested, its in your head' response hence my sons tears. (And mine if im honest.)

[MaryF in reply to deesbees]

Ok, well I went through similar with my children and my own health, and in the end there were a few red faces locally as I got my diagnosis for Hughes Syndrome/APS, Lupus and four other conditions, and my children, Lupus, Hughes and Hashimotos. I suggest you give this charity a ring and as for Mr Marius Van Oldenborgh, and mention that I suggested it, I will send you my full name by private message. hdapatientcaretrust.com/

You need those tests done.

MaryF

[deesbees in reply to MaryF]

Omg thankyou. Been dealing alone with this for years now and just havent a clue - 20 years of little sleep and im a bit of a dumbo these days.

[MaryF in reply to deesbees]

Quite often children test negative, only to pass later one, so be warned regarding that, and they should also be looking at your children's antibodies re thyroid diseases also, plus D, B12 and Iron.

MaryF

[deesbees in reply to MaryF]

But my sister has Hughes, so we know a bit about it as she was dx years ago and was so phobic about hospitals that she left a clot in her leg untreated for months before she finally got help.

[MaryF in reply to deesbees]

My forum on Sticky Blood-Hughes Syndrome, carries a list of doctors across the UK who understand the condition! The fact that your sister has this, makes your case ever more relevant. My sisters have it, and my brother, and my late father, myself and all my children. MaryF

[deesbees in reply to MaryF]

Ive mentioned it before but it was dismissed by the gp!

[MaryF in reply to deesbees]

Ring the charity, I have given you, above, or fill out an online form, I have sent you my real name by private message, Dr Marius, or rather Mr Marius Van Oldenborgh knows me well. MaryF