info needed

[wendypartridge]

Hi all my dear friends, as you know had RAi in Feb this year , been ill ever since but i need info on the fact I was diagnosed with GD and as much as i ask my doctor if the GD has gone he never answers just looks at his computer I was told i had signs of Ted a few weeks ago but doctor says its most likely glaucoma ,going to eye clinic in November. Also whenever i ask for a full blood test including B12 and vit d he tells me not needed he won't even test my antibodies He thinks my blood are perfect and has no answer;s for me other than take the levo and lets see ,,,, not good enough any more ,what can GD antibodies do to my body after RAi??? My last blood test was strange ,,Tsh.-3.33 ( 05-5) t4 -15 (9-19) t3 -2.7(2.6-5) . I have gone up 25mgs so now i take 125 mgs a day but still feel ill I am going back to the dr next tuesday i just want as much info as possible thanks in advance wendy xx

[Clutter]

Wendypartridge,

There is no point in retesting Graves antibodies. Graves Disease does not go away after RAI or thyroidectomy. It may go into remission but equally can go on to attack other organs, usually the eyes.

Who told you that you had signs of thyroid eye disease (TED)? Have you seen an optician?

You were undermedicated on 100mcg which is why dose was raised to 125mcg. You should have a follow up thyroid blood test 6-8 weeks after dose was increased to 125mcg. If you do have TED TSH should be suppressed <0.1 to protect your eyes.

If your GP won't order B12, folate and vitamin D you can order private blood tests via thyroiduk.org.uk/tuk/testin...

[wendypartridge in reply to Clutter]

I saw an optician who said it was the on set of TeD my doctor disagrees i guess i will find out at the clinic

[Clutter in reply to wendypartridge]

Wendypartridge,

An optician is more likely to distinguish between onset of TED and glaucoma than your GP. Your GP sounds quite obstructive. Perhaps you could find a more helpful GP.

[Fruitandnutcase in reply to wendypartridge]

Just read that you’ve seen an optician - if your optician thinks it’s the onset of TED then it’s very likely to be that because the optician will definitely know glaucoma when he sees it.

[Fruitandnutcase]

If your doctor thinks you have glaucoma then he really should have sent you to your optician to have your eyes looked at and your pressures checked. Depending on what is found your optician can hurry you off to the eye department or at least reassure you.

Could you afford to pay for private blood testing? I’ve just done Blue Horizons Thyroid 11 Home fingerprick test this morning. It does antibodies, B12, vitamin D, T3 which I was never able to have done on the NHS.

I’ve got Graves Disease and I was under the impression that once you’ve got it, you’ve got it even if they remove your thyroid or if like me, you are in remission.

Hopefully someone who knows more about what happens after having had RAI will come along and advise you but I think you would want your TSH to be nearer 1. If your doctor can’t get you sorted out you need to go back to your endo - assuming he is any good.

[wendypartridge in reply to Fruitandnutcase]

I will try Blue horizon as i am fed up of not having the full picture and also been told how much everything costs by my doctor. He has already told me he won't give me T3 i have to look on the internet he says, Optician said it was the first signs of ted, doctor disagree but i am going to the hospital to the eye clinic in November I am sure they will have the right answer

[SlowDragon Administrator in reply to wendypartridge]

Make sure you get the test that includes checking Vitamin-D, folate, ferritin and B12

Suggest you see Amy Myers website and The Thyroid Pharmacist

Both these, and many others would say you may find gluten free diet helps, even though Graves is apparently zapped.

You are highly likely to need T3

It's immoral that NHS will zap your thyroid to stop it working, but not allow you the correct hormones to function

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. 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 and most consistent results

You could consider a T3 friendly endo

Email Louise at a Thyroid UK for list of recommended thyroid specialists [e-mail]

[shambles]

Wendy, I feel for you. So much information to take on board and the information given often incorrect. It's make me really mad!

If the optician said he signs of thyroid eye disease, he will be correct and should have referred you to the hospital. The doctor is outrageous, what does he know about thyroid eye disease? Did he assess your eyes with the proper equipment? Perform a glaucoma test before deciding you have glaucoma? I have seen some of the best ophthalmogists in the country with my eyes and they admit they find hard to know everything about this rare disease. This doctor should really be taken to task, it's clear he has no knowledge on the subject.

The most important thing is that you going to a specialist and they will help you. For what it's worth, the ophthalmologist will have a much better all round knowledge of all thyroid issues. Please remember that your eyes come first no matter what, listen to no one other than your eye specialist, not the endo and especially not your doctor.

Hopefully, your eyes are only mildly affected and there be will a good resolve.