Now I don't know what to believe anymore

Hi all. I went to see the Endo at the local hospital today as requested for all the results of my bloods and full hormonal panel and thyroid scan. To my surprise, I was seen by the top Endo not the stroppy person I saw last month.

I won't bore you with all the results but the thing I am really alarmed about is:

1. Three days ago I received a letter of confirmation from the top ophthalmologist at my local hospital to confirm ( from physical eye tests and measurements performed a couple of weeks ago) that amongst other things, My episodes of double vision is due to thyroid eye disease. Obviously I have been quite concerned and upset (and confused) regarding this news as I can most certainly have wider implications for my future health and life style.

2. The Endo today said according to his blood results I do not have TED! He did say I have mild real disease which probably caused the high BP - though this was almost as an aside.

I am feeling worn out with all the many appointments I have had and now the consultants cannot agree. Both have now discharged me back to the care of my GP... who though approachable and caring, is by her own admission not an expert on any of these things.

What and who do I believe now?


12 Replies

  • I'm not aware that there is a blood test for thyroid eye disease, so I'd be sceptical of the endo. Do you have a print out of all the results, with ranges. If not, contact his secretary and ask for them. I'll take bets that either a) he hasn't measured your FT3 or b) he is ignoring the fact that it is too low because your TSH is in range.

    My money is on the opthalmologist being correct, assuming I'm allowed a bet.

  • Is that a typo? Real disease? Do you mean 'renal disease'? If so, see a nephrologist. They are kidney specialists. They need to figure out why you have this and see what can be done to get your health better.

  • So sorry, yes a typo..I meant renal disease (mild only). I was so tired and upset after the consultation, buffeted in every way but no clear direction.

  • Kidney disease is fatiguing on its own without even thyroid issues. We have 2 kidneys and can function on 1. If blood tests indicate kidney failure, that means kidneys are functioning at less than 50%. You need a nephrologist to help you manage the situation and help to preserve what function you have. Just as with thyroid problems, GPs are not the best people to help you.

    There are dietary considerations when kidneys are not doing well. They need excellent protein to do well. Contrary to previous recommendations for a low protein diet, there has been a change.

    There are ophthalmic changes when kidneys are failing. You need to find out exactly what is going on and educate yourself about what it is you need to be doing.

  • I am totally light a rabbit caught in the headlights... I am due back at school (teacher)next week and don't know what to do. I am not sure whether to post on the Lupus site as I am being treated for UCTD (lupus in the waiting) and wonder whether or not it is now morphing into something more specific. Perhaps I will wait until Monday after school when I see the Rheumatologist. He knows nothing of my recent illness as they are two separate hospitals and are not linked electronically ...I will have a lot of paperwork to take.

    Thank you all for your input, it is much appreciated

  • If you have been diagnosed with UCTD (by the way, I was looking at the comprehensive list of what are included and unbelievably, fibromyalgia is on the list, but that's neither here nor there so don't pay attention to me about this). The list of tests for rheumatology is so long it's incredible. I'm hoping you were comprehensively tested when first diagnosed.


    Laboratory test screening is helpful to identify markers that may suggest autoimmune inflammatory disease. Routine screening tests for undifferentiated connective-tissue disease (UCTD) should include the following:

    Complete blood count

    Erythrocyte sedimentation rate (ESR)

    C-reactive protein (CRP)

    Urinalysis with microscopic analysis

    Serum creatinine

    Rheumatoid factor (RF)

    Antinuclear antibodies (ANA): The American College of Rheumatology Antinuclear Antibody Task Force recommends ANA screening be performed using an immunofluorescence assay (IFA).[43] Any ANA detected by an enzyme immunoassay (EIA) or enzyme-linked immunosorbent assay (ELISA) should be confirmed with IFA testing.[44]

    Other studies to consider on a case-by-case basis include the following:

    Creatine kinase and aldolase

    Complement components (C3, C4, CH50)

    Thyroid-stimulating hormone

    Anti-cyclic citrullinated peptide (CCP)







    Anti-Scl70 (topoisomerase antibody)


    Anti-beta-2 glycoprotein 1

    Lupus anticoagulant



    Vitamin D - 25(OH)D3

    Anti-U1-RNP and Anti-Ro/SSA antibodies represent the antinuclear specificities most frequently detected in UCTD. Anti-Ro/SSA immunoglobulin G (IgG) antibodies are very common in UCTD.[45] A 2008 study by Zold et al suggested that vitamin D deficiency in patients with UCTD may play a role in progression to a defined CTD.[46]

  • Unbelievable ,,,,,,,,,,,,,why on earth would the ophthalmologist having said you have TED refer you back to a GP who will know zilch

    Insist on a referral to the TED specialist at Moorfields Eye Hospital in London

  • My concern is that I have been hypothyroid for many years and the Endo stated it is graves only that has this condition and as I am euthyroid at the moment that I do not have it according to my latest TFTs.

    I am struggling with all the appointments / results they have sent me for and it is rather like opening Pandora's box.

    Can any one explain that if I do have it, do I have to inform DVLA?

  • Must endorse recommendation to get yourself to Moorfields. Their specialists are the best in the world and will cut through the confusion for you.


    (have had detached retina ops there and also laser fix for other eye, which had tears which would have led to detachment)

  • There are blood markers for thyroid eye disease and with the exam and symptoms, you need to find out what treatment is available. I have read that usually, you will have to wait it out until it burns itself out, unless it is effecting your optic nerves..then they do surgery to relieve the pressure and there are radiation treatments for swelling. Did you mean mild renal disease? Do you have hyperthyroid symptoms? Has anyone done thyroid antibodies to look fro Graves? I feel for eyes swell with this Hashimoto's and i have been the eye doctor route sick of feeling ill, looking bad etc..

  • I have underactive only..never been hyper until my recent high blood pressure probs and then I only went over a little bit. The eye doctor did physics

    Measurements and tear film tests to ascertain the double vision. The Endo says I can't have it as I am euthyroid! Bewildered and confused.

  • You can have TED without having thyroid you have an autoimmune thyroid condition like Hashi's? TED is autoimmune and can happen before the thyroid gets effected and some never do. Sounds like you need to find a new doctor.

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