Eye disease but no Graves antibodies ?

[Midwinter]

Now I'm REALLY confused!

I'm on the wait list for thyroidectomy, which I don't really want, but having relapsed a couple of years ago, this is the first time my thyroid levels have come under control, and I guess they want to jump on the opportunity. Perhaps understandable - my body doesn't seem to know what to do with thyroid drugs - I can't tolerate a high enough dose of carbimazole, and have needed a consistently high dose of PTU to get any control (have more than once been accused of non-compliance with medication!!). ... but I feel under a lot of pressure to do it.

Since the end of last year, I've been suspected of some sort of PTU-related lupus syndrome (ANCA positive), or possibly PTU-excerbated "tendency" to SLE and/or some arthritic condition - and have always had, or supposedly had, active eye disease even with "normal" thyroid levels. I also feel quite poorly even with so-called "normal" levels (only, of course, that's not allowed) ... and have been told that the reason my eyes are still bad must be because I still have some antibodies, even though thyroid normal. Endocrinologist, trying to push me towards the op, has told me on a couple of occasions that my antibody levels are "as high as he's seen in any patient, EVER". Now, as far as I am aware they've only tested my antibodies once, 7 or more years ago - and at the time I was doing a lot of research, and although I don't recall what the levels were, I do remember being puzzled that, compared to many, they weren't really that high.

Anyway, not for the first time, it feels rather as if this doc saying just about anything to get the result he wants, and for a number of reasons I'm unconvinced that what I'm experiencing now with my eyes is Graves-related. I've had joint and eye problems that predate the Graves diagnosis by decades ... and this just isn't the same. Thyroid-wise, I feel OK most of the time, but still have sore joints and periods of obliterating fatigue.

So, I picked a week when I'd been suffering very badly with my eyes, and had a thyroid screen done with Blue Horizon. Results came back all within normal limits (currently on 150mg of PTU) - AND THYROID ANTIBODIES NEGATIVE!

If anybody can help interpret these results, I'd be ever so grateful .... Does this mean I'm in remission ??? But mainly, I'd really like to know - IS IT POSSIBLE TO HAVE GRAVES EYE DISEASE WITH NEGATIVE ANTIBODIES - - or is this likely to be due to something else ?

Results were:

ENDOCRINOLOGY

THYROID PROFILE 2

TOTAL THYROXINE(T4) 83 nmol/L 59 - 154

THYROID STIMULATING HORMONE 1.07 mIU/L 0.27 - 4.2

FREE THYROXINE 13.1 pmol/l 12.0 - 22.0

FREE T3 4.8 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES

Thyroglobulin Antibody <10.0 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 6.0 IU/mL 0 - 34

Method used for Anti-TPO: Roche Modular

Thanks so much!

Carole

[helvella Administrator Thyroid UK]

Am a bit confused about WHICH antibodies you are referring to. The classic Graves antibodies are TSH-receptor antibodies. Which can be blocking, stimulating or neither! These are not "thyroid antibodies" (which I take to be Thyroid Peroxidase antibodies - nor Thyroglobulin antibodies).

You might find quite a lot of interest in this:

thyroidmanager.org/chapter/...

It is heavy going, and challenging in lots of ways, but in my view, it is worth it.

And this chapter as well:

thyroidmanager.org/chapter/...

I hope they are keeping a close eye on your liver with that PTU:

Cautions

monitor for hepatotoxicity

Hepatotoxicity

Severe hepatic reactions have been reported, including fatal cases and cases requiring liver transplant—discontinue if significant liver-enzyme abnormalities develop

Counselling

Patients should be told how to recognise signs of liver disorder and advised to seek prompt medical attention if symptoms such as anorexia, nausea, vomiting, fatigue, abdominal pain, jaundice, dark urine, or pruritus develop

Rod

[Midwinter in reply to helvella]

Thanks, Rod .. this was their Advanced Thyroid Profile, which is described as covering "TSH, T4, free T3, free T4, Thyroid antibodies...". I specifically asked when I booked it, whether this test covered Graves disease antibodies. The girl on the end of the phone didn't know what I was on about, but went off and asked somebody else - who said yes it did ..

[spring13]

It is possible to have Graves disease with negative antibodies

[Midwinter in reply to spring13]

Really? I know you can have it with normal thyroid levels (because I have) .. but negative antibodies is a bit confusing ... so what would be causing the eye disease in that case ... ?

[Hidden]

"I specifically asked when I booked it, whether this test covered Graves disease antibodies. The girl on the end of the phone didn't know what I was on about, but went off and asked somebody else - who said yes it did .."

Hi I wasn't going to say this in case it may offend but....

I too contacted B horizon (they are nice ppl & I used their service) but a lady who answer the phone asked me, "could you spell that" when I said antibodies test(s) for Graves disease. After confirming how to spell it to her, she said she never heard of it but will ask her colleague whom I already spoken about prior to no avail. They don't do it.

I got nowhere in the end with B Horizon but I left a feedback politely asking them to consider including Grave's auto antibodies test(s) and I received a polite reply back from her saying thanks etc. I don't think there's anywhere you can book for Grave's antibodies test.

[Midwinter in reply to Hidden]

Offend? No ... thanks for sharing!! That sounds v. much like my experience. Not only could no one advise on which test was appropriate, but the ladies on the phone clearly had no ball-park idea what I was even asking. I am cross that the test was mis-sold (albeit inadvertently) - even though I did ask them to check specifically. I can get my thyroid levels checked at hospital; I wanted to check the antibody levels as I have reason to think my endocrinologist is exaggerating; plus they haven't checked them for 2 years anyway.

These tests aren't cheap. I'd recommend caution & careful checking to anyone using Blue Horizon themselves, unless the test is requested by a doctor.

[Hidden]

Hi Midwinter

My sentiment exactly...

It would be useful if B H employs assistant/someone who is slightly more medically clued up (in particular thyroid autoimmune antibodies and what these are called etc)....

They do charge one off medical fees each time you take out their lab test(s) and I normally have to pay a private phlebotomy on top..that is really horribly expensive in recession. But I digress.