Graves’ disease - latest blood results

[Ladywiththebaby]

Hi there,

I was diagnosed with Graves’ disease at the end of May with the following numbers:

T3 30.6 (range 3.5-6.5)

T4 58.8 (range 10.5 - 21)

TSI 14 (range = <0.56)

TSH <0.03 (range 0.35 - 5.5)

And put on 20mg Carbimazole twice a day.

I had bloods done again on the 21st July and the results were:

T3 7.2 (range 3.1 - 6.8)

T4 19.9 (range 12 - 22)

TSH 0.007 (range 0.27 - 4.2)

Dosage decrease to 20mg once a day

The weight is going back on and although my hair is definitely thinner I’m not finding it fall out as much. Can’t say I’ve really ever noticed many symptoms although Endo said I do have TED in right eye but just to keep an eye on it?

Is this good news that my numbers have dropped so quickly? Is there any chance I won’t have to be on the Carbimazole for much longer?

Thanks in advance.

[SlowDragon Administrator]

Looking through previous posts

Can’t see any vitamin D, folate or B12 test results

Test privately if GP won’t test

[Buddy195 Administrator]

Welcome Ladywith the baby,

Most people who develop TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).

I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed.

Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.

Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.

I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.

Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world. Please keep posting if you need any further advice or support.

I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.

I also take lutein & zeazanthin (Eye complex 7 on Amazon) for overall eye health, so this is worth considering if you have any concerns about your vision.

[RedApple Administrator in reply to Buddy195]

Buddy195 Do you know of a paper or anything that officially acknowledges TED in connection with autoimmune hypOthyroidism? I had a brief discussion with an eye surgeon last year who was adamant that TED can only happen with hypERthyroidism. Would love to point him at something that he can't argue with!

[Buddy195 Administrator in reply to RedApple]

ncbi.nlm.nih.gov/pmc/articl...

[asiatic]

Is this good news that my numbers have dropped so quickly? Is there any chance I won’t have to be on the Carbimazole for much longer?

Yes and no. Like you my numbers dropped quickly which led to me becoming hypothyroid and worsened my TED. You can read about it in my profile. Because my antibodies were still high I would probably have relapsed if Carbimazole was stopped. With hindsight I should have stayed on a very low dose but I was changed to Block and Replace where Carb stops production of thyroid hormones and Levothyroxine is added in to replace what your thyroid is not now producing.

As you are showing signs of TED I would encourage you to ask for referral to an Opthalmologist specialising in this and am surprised your endocrinologist did not do this