Is my diagnosis and treatment correct?

[cl1-holcombe]

I have been diagnosed with an over active thyroid due to a multinodular goitre with an overall grading of U2 in October 2018. On 22 March 2019 I received Iondine-131- treatment of 555 MBQ. After treatment my thyroid became more over active. I am having a consultation with my Endocrinologist this Friday (7th February) and anticipate, due to our last conversation, that she will want to move forward with either more Iondine-131 treatment or surgery. After my last Iondine-131 treatment I am reluctant to repeat this treatment and troubled by the idea of having surgery on my thyroid. (I will note my blood results below.) I wondered if anyone could give me advice.

I am also having problems with blurred eye sight and wonder if this is due to my over active thyroid. My optician diagnosed me 4 years ago with a dry eye condition and blepharitis which my Endocrinologist doesn't seem to think is connected although I have a niggling feeling that it is. Since having flu 5 weeks ago my vision has become blurred and I was unable to focus properly and seeing double. I have new glasses which my opticians say should help my eye muscles (the cause of my double vision). I have also for the last 10 days been treating the blepharitis with hot compresses, cleaning the lashes and using eye drops but my blurred vision continues and my eyes feel puffy and heavy. I'm wondering if my eye condition is connected to my over active thyroid and could have some bearing on my treatment. Is my Endocrinologist missing something?? Apparently my eye health is fine.

I am currently on 5mg Carbimazole

Blood Results:

29/01/18 TSH <0.02 FT3 6.4 FT4 16.6

08/03/18 TPO antibodies 32

22/05/18 TSH <0.02 FT3 7.3

06/08/18 TSH 1.42 FT4 10.6 FT3 4.5

29/10/18 FT3 4.6 FT4 11.8 TSH 0.78

08.01.19 TSH 0.55 FT3 5.1 FT4 14.4

22.03.19 radioactive iodine treatment 555MBq 131

23.05.19 TSH <0.02 FT3 6.2 FT4 16.5

10.06.19 TSH <0.02 FT3 26.8 FT4 59.2

25.07.19 TSH <0.02 FT3 9.4 FT4 29.0 Bilirubin 16, ALT 67, ALP 64

10.07.19 TSH <0.02 FT3 26.8 FT4 59.2, Bilirubin 24, ALT 84, ALP 64, vitamin D 45

14.08.19 TSH <0.02 FT3 7.2 FT4 16.0 BILLIRUBIN 22, ALT 52 ALP 58

18.09.19 TSH <0.02 FT3 4.5 FT4 9.1 LFT normal (ALT31)

24.10.19 TSH 3.41 TF3 3.6 FT4 5.9

21.01.19 TSH <0.25 FT3 4.7 FT4 11.7

Thank you for reading …. any advice gratefully received

[Lalatoot]

Have you had your TRab antibodies tested or do you know if you have Graves disease? Graves disease can also affect the eyes. Graves is an auto immune condition which attacks the thyroid and independently of the thyroid can also affect the tissue around the eyes. Even if you have your thyroid removed the affects on the eyes can continue.

rnib.org.uk/eye-health/eye-...

[Lora7again]

What are your T4 and T3 results?

[greygoose]

This is a little confusing because you don't tell us what you're taking - if anything - with any of these results. Some, of them look rather like a Hashi's 'hyper' swing, rather than Grave's. And this one:

24.10.19 TSH 3.41 TF3 3.6 FT4 5.9

is positively hypo.

You say you have a multi-nodular goitre, but is one of the nodules producing its own hormone? Multi-nodular goitres are common in Hashi's, too, but do not make the person hyper.

You don't give a range for the TPO antibodies, but that could be counted as positive. TPOab is usually indicative of Hashi's. Have you ever had TRAB or TSI tested? Before agreeing to anymore treatment of any kind, you need to make sure what you're actually suffering from. Because I have the impression your endo doesn't know.

[Erin60]

Blepharitis is horrid, sorry you are suffering. I know how awful it can be.

try blephex treatment specsavers (£40) it might help.

Try using blephasol lotion to clear microscopic debris from upper/lower lashes.

Hylo forte eye drops

Xalain eye ointment (night time)

Scope omega 3 DNA capsules 4 x daily.

Drink lots of warm water.

Wear sunglasses when outside.

(Blood test) TSI assay is more specific for thyroid stimulating antibodies associated with Graves' Disease.

[Dillon54]

Hiya

Like you I have an over active thyroid- Graves Disease. I have been on 5mg of Carbimazole for 9 months. No goiter or iodine treatment. I've had no issues taking carbimazole but I do have trouble with my eyes, wet macular degeneration in both eyes but this diagnoses has never been associated the thyroid. I would suggest you get a referral to the hospital ophthalmic specialist asap as they well be able to carry out more in depth investigation. Take my advise. Look after your eyes. Hope this helps.

[PurpleNails Administrator]

I have a diagnosis of toxic nodule. This was determined by thyroid uptake scan, and a below range TSI, for Graves’ disease.

If your specialist determined your hyperthyroidism is caused by multinodular goitre and discounted Graves’ they have deemed it unlikely you have thyroid eye disease (TED) typically associated with Graves’ disease. This is why it’s important that you question what antibodies testing has been done.

When there is any possibility of eye involvement a referral to ophthalmology before RAI is standard, for full assessment and a course of oral steroids if TED is active as RAI Is known to worsen the condition.

Seek a referral to ophthalmology as TED can precede, coincide with or succeed the diagnosis of thyroid dysfunction. 80% have Graves hyperthyroidism, 10% are hypothyroid 10% are euthyroid.

What information were you given before treatment? Hospitals often hand out a British thyroid foundation leaflet about RAI which has been updated recently to say “For some patients who are treated with radioactive iodine to reduce the size of a goitre, there is also a small risk that they may develop Graves’ disease”

It also explains thyroid over activity is common preceding treatment followed by becoming hypothyroid usually within a year, with 10% requiring additional treatment.

btf-thyroid.org/treatment-o...