You were all right!

[Apodemus]

Ok I posted a couple weeks back that I had mild active Thyroiditis and TED.....but somewhat blocked the idea of Graves. Saw my endocrinologist today ....firstly he was impressed (thanks to the dedication of my optician) how quickly I had been seen and treatment started ....but feels it looks like Graves. I see the optimologist in two weeks

I have (fingers crossed) a mildish form of a TED and hugs to everyone who has Graves. My eyes are kind of settling down now in my third month.

Any thoughts of things to help....(eyes I have drops and cold packs) but does stress and tiredness make things worse? I find things don't quite taste the same ....is it me? I suddenly get very tired. And had a fainting spell this morning because I got up loads in the night was sweaty got dehydrated and my BP dropped.

Thanks!

[Anthea55]

You mention eye drops. Please make sure that you use preservative free eye drops. They may be fine to start with, but I understand that they can cause problems if used long term.

Here is a previous post about benzalkonium chloride which is a commonly used preservative.

healthunlocked.com/thyroidu...

[Apodemus in reply to Anthea55]

Anthea55 thank you ....I had to change to Monoprost as I couldn't tolerate Latanoprost which contains preservatives!

[Opposite]

Hi!

Im sorry you may have graves and are unwell but well done for getting answers!

If you are taking beta blockers, the tiredness, BP drops and fainting may be due to those - that happened to me and stopped once I came off them.

If you are taking PTU, the taste could be those.

Most of my senses changed in some way as my my thyroid levels were brought back down.

Please can I ask what your TED symptoms were and how you were diagnosed?

I am awaiting my referral and my eyes are extremely watery, get puffy and swollen, and are very senstive to light. However, I can't see any bulging and my Endo seems to be fighting me at every step so I'm assuming they'll say it's not TED.

Thank you in advance.

[SmallBlueThing in reply to Opposite]

I think your Endo should "stay in their lane" and it's a hospital Eye Department you need referring to. It's taken me years, but I'm at last getting somewhere, even though it may just be a full diagnosis. Fingers crossed for you that your symptoms are due "just" to posterior blepharitis / meibomian gland dysfunction.

[Apodemus in reply to Opposite]

Well my optician referred me to the eye hospital as I had persistent conjunctivitis, chemosis and by ocular pressure was going up and also suggested the GP did a thyroid function test. I don't have bulging eyes. They did a CT scan and said it was mild active Thyroiditis with TED (and I see a consultant in 2 wks)...and as my T4 was raised and hyper I was referred to the GP who referred me to an endocrinologists who thinks it's Graves but I will get a definite confirmation once the bloods are back. Compared to many I have bee ln seen swiftly (in NI) and my optician really helped as he spotted the signs. I hope that helps but keeping fighting.....just say you want it ruled out.

[Opposite in reply to Apodemus]

Thank you both, Apodemus and SmallBlueThing - your advice is much appreciated.

My optician has written to my GP to refer me to the eye hospital but I'm caught in terrible imposter syndrome at the moment because my Endo is dismissing me at every turn. I was quite severely Hyper and am on Carbimazole, and have tested very highly for TPO antibodies. Because I don't fit the standard mold, I don't think they know what to do with me.

Thank you. I'll keep asking about my eye referral because it really is my worst symptom now everything else seems to be improving.

[Apodemus in reply to Opposite]

Don't beat yourself up! Keep going. You need an answer. This is all hard enough.