Confused and a little discouraged

Hi all. I have had quite a few hospital appointments with consultants all organised as a result of my recent hospital admission due to dangerously high BP by a wonderful consultant physician.

He referred me to an endo who said immediately I have hashimoto's and a goitre just by looking at me. Here in lies the paradox; the very ultrasound scan he sent me for proves my thyroid is NOT enlarged in any way and is structurally sound (the consultant radiographer told me this right away). Therefore, I have to run the gauntlet of the endo (rather unpleasant man) on Thursday of him reading the results he requested and finding out he is WRONG, there is no goitre!

Also, I was sent to see a consultant ophthalmologist. I had lots of tests which they say I have 'mild restriction of inferior rectus' (causing double vision) which is secondary to THYROID EYE DISEASE!

The letter came today, I must admit I am puzzled and upset.

I thought TED is a symptom of hyperthyroidism not hypothyroidism? Is this really possible I could have this too? Everything I read says it is an autoimmune disease. I am not really sure now what to believe anymore and I am fed up of more AI stuff going on. I have so much trouble managing my joints on a regular basis.

Any comments from you will not only inform but encourage me.


9 Replies

  • Buddy, You can still have Hashimoto's without having a goiter. Endo needs to do thyroid peroxidase (TPOab) and thyroglobulin (TgAb) antibodies tests to confirm Hashi's. It isn't uncommon to have Graves antibodies and Hashimoto's antibodies so your endo should also do the Graves TRab test. Thyroid Eye Disease can develop without being hyperactive. I've read that suppressing TSH can be beneficial in delaying the progression of TED.

    Good luck with your consultation tomorrow.

  • Hi Clutter, the TPOab my GP did 3 weeks ago has also come back negative too (<25.0 iu/mL) ref range 0.00 - 33.90 iu/mL.

    Do you think the endo I see tomorrow with climb down on the hashi diagnosis in the light of this and the fact there is no goitre or could I still have it?

    I just find the whole thing overwhelming...also being treated for UCTD / coeliac and take plaquenil though my antibodies are always negative. Now my eyes? Just wonder when it will all slow down.


  • BB, It was a likely assumption for your endo to think Hashimoto's as autoimmune thyroid disease is responsible for 90% of hypothyroidism and you are already being treated for two other autoimmune diseases. If he detected swelling, which may mean an enlarged thyroid gland rather than a goiter, when he palpated your throat and neck it was also right to do a scan to check for a goiter and nodules.

    It's possible to have negative TPOab but positive Thyroglobulin antibodies. Perhaps he will test for TgAb to completely rule out Hashimoto's. I think TRab for Graves needs testing in light of TED.

  • True enough Clutter but he didn't even touch me or feel my neck. In fact he only saw me as an add on to the physician who admitted me as a quick check for my TFTs. He had no other access to my ongoing treatments for AI as these were in another hospital and are not electronically linked.

    Also, as far as I know I have never been hyperthyroid only hypo so doubt TRab would be positive. They are really only looking for reasons why my BP took off hence sending me to opthalmology too....that's hiw they diagnosed my TED.

    The consultant radiographer said my poor old thyroid is being blamed for everything. I really am starting to feel ambushed by AI conditions... I have to cope with lichen sclerosis too.

    Always appreciate your insight,


  • BB, ah the endo was making an educated guess and got it wrong then. I still think that having TED makes it likely you have Graves antibodies even if you aren't hyper. TED can predate hyperactivity by years and sometimes the other way around.

  • Hi. I had a few issues with my eyes fairly recently so went back to the optician for advice. They knew I was hypo so arranged a retest with a ophthalmologist who understood thyroid problems. I asked questions on here so as to be prepared if my thyroid was suspected as causing the problem. I'd also read a comment that a hospital only ran a special clinic for hyper, not hypo. My son works in a hospital eye clinic so he asked question and found they ran both hyper and hypo clinics so yes TED affects both. An eye examination and sight test proved everything ok but I had to sheepishly report that the problem was my glasses and that replacing the pads that rest on my nose realigned my lens to where they should be! So I'm sure you will get plenty of helpful comments and support and if referred to the hospital and they don't have a hypo clinic then ask to go to one that does.

  • This is a real shock to me to find this out. Having a letter from the consultant to confirm this is quite something...adding it all into my specific mix of problems is becoming a bit too much at the moment. Thanks for your reply.


  • Hang in there BB. Try to concentrate on the positives, that they are doing tests and will hopefully get you on the right treatment soon. I hope your appointment goes well and has a more positive outcome. Let us know how you get on.

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