Eye problems and dry mouth etc

[Bananas4ski]

Hello again to this lovely forum which has been so supportive.

As you may know from my previous posts , I have had Graves’ disease for 22 years and am on Carbimazole , having refused the alternative treatments.

Over the past few weeks I have started having increasing eye problems - these came to a head Iast Friday .I thought this maybe TED so I contacted my excellent GP on Friday and have had bloods done( awaiting results) and I have also contacted my endocrinologist and he is in process of referring me to an ophthalmologist.

However I have now developed a dry mouth and started looking up Sjorgens and realise how many other symptoms of this I have had without linking them up. A little embarrassing but one of those symptoms is that I have had terrible bladder problems over the past months which has been affecting my lifestyle( am only 58) . This is the first timeI have talked about it to anyone.

If it turns out that I do have Sjorgens does anyone know :

a) what tests are done to confirm that the bladder problems are due to Sjorgens rather than anything else and

b)whether the bladder problems can be treated/cured?( frequency/ urgency). I haven’t checked for a UTI but I think I’d know if it was that.

Am scared of the thought of Sjorgens being my possible diagnosis - the only good thing would be if there is a simple non invasive cure to my bladder problems .

I will wait for my blood results and optholmoligist appointment and I presume get back in touch with my endo again.

Any more advice from anyone woukd e so welcome: as to who else I should see or what questions I should ask the specialists (ophthalmologist and endocrinologist ) or further tests that I should be asking for.

Hoping I am wrong and don’t have Sjorgens( self diagnosis is always a danger!)

Am usually very upbeat , do lots of exercise and activities and am fit and working part time but am rather scared .

Apologies for the whinge.

Any advice would be so welcome.

[Buddy195 Administrator]

If you suspect a TED flare, it may be worth you taking a selenium supplement, as this has helped reduce inflammation for many with the condition. Also use preservative free eye drops liberally- both HycoSan and HyloForte are great choices. I have TED, but no knowledge of Sjorgens. Keep a diary to show the ophthalmologist- eg times of day pain is worse, any light sensitivity etc. Best wishes to you.

[Bananas4ski in reply to Buddy195]

Huge thanks for your quick reply. I will def get the eye drops you recommended- where do you get them? Would Boots have them or online somewhere?Luckily I al taking i caps tablets which have selenium. Great advice though - thx again. X

[Buddy195 Administrator in reply to Bananas4ski]

I get mine from Amazon but you can buy HycoSan at Specsavers & other opticians. Recommended dose of selenium is 200mcg daily for 6 months minimum if TED suspected (doses above 400mcg daily can be toxic so don’t exceed). Please don’t worry unduly as specialist ophthalmologists can really help/ provide many treatments. I’m sure someone with a knowledge of Sjorgens will be along soon to offer you guidance. Keep posting to update us!

[Bananas4ski in reply to Buddy195]

That’s great - thank you.

[leighlfc]

I’ve got uctd raynauds and sjorgens I suffer with my bladder but no one told me I just thought I maybe going through menoi or never did enough pelvic floor x