Help please

Hi. I was diagnosed with thyroid eye disease about two years ago but was told my thyroid levels were normal. Recently, I noticed my eyes were worse and my contact lenses have been dropping out. I had a tsh test and the level came back as 3.1, I was told this was normal and I did not have any issues. I am tired, get breathless, have low sex drive, anxious, my hair falls out easily, irritable, have problems with my bowels and feel generally unwell. Drs are now telling me I anxious and suffering from health anxiety, but I feel there is something more to this.

I have trouble sleeping and get what I can only describe as a 'rush' at night.

Has anyone else had a result within the normal range but still suffering with the symptoms? I don't know what to do next.

Thank you so much.

4 Replies

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  • Usually Thyroid Eye Disease and hyperthyroidism go together but treated as two separate conditions. Your Eye complaint should have been referred to an opthalmologist.

    Ask your GP for an urgent referral to an opthalmologist . It sounds, if it is TED (short form) there has been negligence.

    Did your doctor do an antibodies test when he originally checked your thyroid gland and told you you had Thyroid Eye Disease.

    Your clinical symptoms seem to point to hypothyroidism whereas TED is usually connected to hyperthyroidism.

    You have to go back to your GP and ask for a full thyroid function test which is TSH, T4, T3 and Free T4 and Free T3. Also ask for a Vitamin D, Vitamin B12, iron, ferritin and folate. Have the test as early as possible and get a copy from the surgery, with the ranges, and post them for others to comment.

    This is an excerpt re TED.

    4 How does thyroid eye disease manifest itself and how is it treated?

    Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.3

    The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.

    The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.

  • hi there swan , my lady was diagnosed with thyroid eye disease about 14 months ago by her endo and was referred to 'moorefields ' in London --- treatment ,transport,staff advise , etc absolutely superb ---- although over many appointments [ about 20ish] this has now been virtually sorted including 'low dose radiotherapy' at barts [ which takes a continual visit /treatment for 2 weeks ] .....TED is not as bad as it sounds , and can be just a minor glich in the thyroid journey that you have .......I personally cannot praise the people that have been treating my lady enough----- I am sure you will get there , just make sure and certain that you have the right people dealing with it .....alan xx

  • Hi, I have Hashimoto's and mild Thyroid Eye Disease. My TED symptoms arose some 12 years ago and I did not receive a diagnosis then. With my recent diagnosis of Hashimoto's I told the GP about what I had experienced and he referred me to an opthalmologist as I had some symptoms again. The ophthalmologist said the TED may have initially burnt out and flared up again. She suggested as my TSH was now stable at 0.95 it was ok and that I should take 200mg of selenium (4 brazil nuts each day). Dr Barry Durrant-Peatfield also writes when talking about TED "The first thing to say is that is affects, in at least 90% of cases, people with an over-active thyroid. Rarely it may be seen in Hashimoto's disease." To back up the last quote in Shaw's reply, the ophthalmologist was clear that should my symptoms get worse, I must ask for a re-referral. If your TSH is not stable, I would suggest you ask the same. I hope it works out for you.

  • Hi all,

    I now have my results:

    TSH - 2.72

    Free Thyroxin - 23.4 pmo/L

    T3 was either not done or not revealed to me.

    I have had a waking pulse rate for the past three days of 55, 56 and 55.

    My waking temperature on these three days was 35.7, 35.9 and 35.9.

    Any thoughts on whether these are indicative of a thyroid problem?

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