High tpo and ana

[Soundwell1]

I'm going to have nerve tests for sjogrens by neurologist department. I think it's to do with eye lid lag. Gas anyone else gad this test?

[Buddy195 Administrator]

I have eye lid lag with TED (Thyroid Eye Disease) and also have Hashimotos.

I don’t have any knowledge of sjogrens, but know that my eye dryness TED related. I use preservative free drops like HycoSan or Hyloforte regularly. Do you have any other TED symptoms (eg pain, swelling, light sensitivity, double vision?) If you suspect TED, I recommend seeing a TED specialist ophthalmologist. TEDct are a useful group who helped me locate a specialist in my area. If TED is suspected, studies have shown that supplementing with 200mcg selenium for 6 months may help mild to moderate cases.

It would really help members advise if you could share results of your most recent thyroid blood tests (with ranges in brackets). Did you follow forum advice from last year to test key vitamins;folate, ferritin, vit D and Vit B12?

[Soundwell1 in reply to Buddy195]

Hi yes vits and function OK. I went to see a double vision specialist and she took a ct of eye bones. She says no eye disease caused by hashi underactive.I still have all that you describe and pain in one eye. So dry but then so is tge rsst of my body and I have other symptoms making him think of sjogrens. I also have type 1 diabetes for over 50 years. Very hard to pinpoint what's going on. Also have high ANA.

It's neurology who are looking into nerve tests.

Thanks for your interest.

[Buddy195 Administrator in reply to Soundwell1]

The eye specialist you have seen is incorrect if you have been told that you can’t develop TED with Hashimotos.

Although TED is most common with an overactive thyroid & Graves Disease), some people who have Hashimotos (underactive thyroid) or are euthyroid (no thyroid condition) develop TED.

I recommend you contact TEDct for further information;they will send you useful information & they also run an advice line. It is extremely important that you see aTED specialist ophthalmologist. I saw numerous ophthalmologists who knew little about the condition. My treatment improved massively when I saw a TED specialist.

tedct.org.uk/

In addition, having ‘ok’ thyroid and vitamin results may not improve your thyroid condition. These need to be optimal. That’s why it’s useful to share your results (with ranges in brackets), so members can advise how you might improve them.

Other forum members, such as PurpleNails , pennyannie and asiatic are knowledgeable about TED, so I will alert them to your post to offer further advice.

[Petgirl2 in reply to Buddy195]

Can I please join this line? I have been having very strange things happening. Sticky twitchy left eye, back of the head tingling, numbness in my lower jaw(skin)

Cold feet(ice) cold and numb legs, (always left first) left leg has pains like crushed veins, arms don't belong to me. I've read that ibs can be a cause, but interested to see if hashimoto can also cause some of this, perhaps a combination?

[Buddy195 Administrator in reply to Petgirl2]

I would recommend you post your symptoms in a separate post petgirl2, otherwise posts get very confusing.

[Soundwell1 in reply to Buddy195]

Thanks

[Alanna012 in reply to Buddy195]

Can I ask what is eye lid lag? Is it sort of slow eyelid movement?

[Buddy195 Administrator in reply to Alanna012]

Lid lag is the situation in which the upper eyelid is higher than normal with the eye in downgaze. It is most often a sign of thyroid eye disease, but may also occur with changes to the eyelid.

[Alanna012 in reply to Buddy195]

Thank you x

[Soundwell1 in reply to Buddy195]

I live in Cheshire so there dosent seem to be anyone here.

[Buddy195 Administrator in reply to Soundwell1]

Have you contacted the TEDct helpline for a list of TED specialist ophthalmologists?

[Soundwell1 in reply to Buddy195]

Not yet Buddy. Busy today but I will. Ta

[pennyannie]

Hello Soundwell :

As far as I am aware the definitive test for Sjogrens is a lip biopsy if your blood tests is inconclusive.

[Soundwell1 in reply to pennyannie]

Yes but such a long list I've been on it for a year so far at maxilofacial dept.

[pennyannie in reply to Soundwell1]

Yes, I know and I had the similar wait and long before the NHS back log we are now experiencing.

Have you registered with the British Sjogrens Syndrome Association - BSSA ? bssa.uk.net -

I found the website helpful - though ultimately I was found negative and I believe all my symptoms were related to the long term consequences of drinking RAI but no medic would confirm or deny anything.

[Soundwell1 in reply to pennyannie]

Aww. I'll look on site. Best wishes

[PurpleNails Administrator]

TED can occur outside of Graves & does not always form antibodies, medics are extremely poor at recognising it.

I’m am hyper from a nodule not Graves and have negative antibodies. Some doctors assume I do have TED but the specialist repeatedly refused a referral as I don’t have the antibodies. A referral was arranged but I’ve been on wait list for months.

As I had next to no help with my eye issues (see more in my profile). I self manage with selenium. Took 200mcg at first but this should dose should only be taken for 6 months. Then reduce to 100mcg . Preservative free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.

I found warm compresses helped with dry eyes & very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water.

If you like to moisturise near to your eye area use water based clear gels not cream/lotions. I did this as developed milia white spots round eye. I found the swelling reduced when I switched.

Leaflet on TED

btf-thyroid.org/thyroid-eye...

[Soundwell1 in reply to PurpleNails]

Hi, can I ask where did you obtain the mcg selenium? Thank you so much for taking an interest.

[PurpleNails Administrator in reply to Soundwell1]

Selenium can be brought without prescription (over the counter) at chemists, online & some supermarkets. I think my last were from revital & there is a discount code on thyroid UK.

thyroiduk.org/discounts-on-...

Check the label for absorbable forms, selenium l-selenomethionine and yeast bound selenium are best, avoid selenite and selenate.

You can also look at eye health supplements which may contain Lutien, co enzyme 10 which may be helpful but avoid ones which contain iodine for example.