Hi I was diagnosed with T.E.D seven years ago but my thyroid levels were in the normal range. My eyes do protrude and I was discharged with a wait and watch approach.
This year I began to feel unwell in January with a variety of symptoms. I had my thyroid levels checked again in June and were told they were normal. However, my optician noticed my eyes during a routine appt. and said I needed to be referred to the hospital.
Is it possible to have T.E.D with normal blood results? I have felt so poorly with weight loss, higher blood pressure, anxiety, my hair is dry and falling out, my eyes are really protruding and constantly have terrible bags underneath and I feel exhausted all the time.
I would love to hear from fellow sufferers of this condition, I don't know where to turn at the moment.
Thank you.
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Swan29
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15 Replies
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Hi tes it is possible to have TED with normal blood results, just as you can have abnormal blood results but not have TED.Many people get the eye symptoms before bloods go wonky, I had eye problems for a few years before my bloods became hyper.Did you test positive for Graves disease? You have been told your bloid levels are normal but was it only TSH that was done or was T4 and T3 done too? You need to ask the receptionist for a orint out of your results, you need the ranges, Then post them on here so that we can comment on them.Never accept just being told they are normal.You have lots of typical hyper symptoms and in view of this and your opticians comments about your eyes you shoukd be seen by an endocrinologist. I am no expert but I have overactive thyroid and this needs investigations further.
Go and see a different doctor and tell him/her you need a referral and get those blood results, I know how poorly this can make you feel and hope you soonnget sorted out, good luck ..kim x
Echo what had been said by the others. I had Graves which started with TED. You really must get copies of your test results to see what has been tested - or more to the point what hadn't been tested. I was misdiagnosed with anxiety and depression and accused by my doctor of alcoholism even though I couldn't and didn't touch a drop of alcohol. That was because I had the tremors.
That neglect took me years to recover once I was finally diagnosed. Ignorance of graves is even worse than hypo. Please do not leave this - you have all the classic symptoms of hyperthyroidism.
i have it too..regardless of my levels....big bags, red sometimes inside......have had to have new spectacles and i am sad for you it is terribly upsetting and i had beautiful eyes.....my levels dropped to seriousley bad hypo recently and now i am on the long haul back..i have been feeling all the things you are talking about......its such a strange condition to tell people about and they simply dont understand.....i have spent the best part of the last week lying on my bed.......waiting for the Levo to kick back in.......you are not alone..many of us are having the same as you.....bless you love and i hope you feel better soon.....xx
Jacky did you have RAI or TT or are you still on block and replace? Going hypO is very dangerous for TED as I'm sure you know, what team are looking after your eyes? Why did your levels drop?
As I'm sure you've read, RAI can really exacerbate antibodies so bring on TED even in a patient who didn't have it previously. For me, post TT my eyes were terrible until I got off levo and onto NDT - my endo said that there's something they yet don't understand, related to our autoimmunity and receptors that were flooded with too much hormone for too long, that does something to our peripheral metabolism and some of us do very, very badly on levo.
I had beautiful eyes too and mine are almost entirely normal now - I have lid definition, the rubbery lids are gone, my eyelids sit just on my iris, and I just had double strabismus surgery to correct the squint so no more prism or glasses, if you didnt know me you'd never ever guess I had it. Friends even struggle to notice anything different.
In your shoes I'd be insisting on a referral to Moorfields - the team there are great. Active TED means active antibodies - are they testing all that? Have you read about Low Dose Naltrexone? There's info on Elaine Moore's Graves disease site...
I'm also at Moorfields for TED and concur with the above. My specialist (Endocrine surgeon specialist) told me that it's possible to have thyroid involvement without the eyes but not eye involvement without the thyroid - even if symptoms appear in a different order, the thyroid is always involved first - so there is something going on. TED is v serious, you need a specialist eye team looking after you or you could lose your vision! If you smoke, you need to stop immediately, your chances of serious complications with TED are many, many times higher if you smoke.
Any doctor testing just the TSH of a patient with positive TRab antibodies (you can't have TED without TRab) is incompetent and needs to be binned and a new doctor sought. You can also have blocking and stimulating Immunoglobins (antibodies) in Graves so you can be hypO and hyPER.
I had Graves, Hashimotos, Hashitoxicosis (so hypO and hyPER nightmare rollercoaster) TED and thyroid cancer and I was misdiagnosed for ten years (my eyes swelled about a year before diagnosis) and I was mistreated for three years. You need a specialist. A very, very good one.
Definitely get a copy of your results to date and the tests you need to see are
TSH
FT3
FT4
TRab (or TSI)
TPO - 60% of graves patients have elevated TPO, they are also present in Hashis
TgAb - this would determine whether you have Graves and Hashis, very high levels in the presence of other signs and symptoms also means I'd be pushing for a scan to see if you have any nodules or even possibly cancer (don't panic, umbrellas don't make it rain!)
Endocrinologists are in a hurry to treat Graves. In your case Radioactive Iodine in contraindicated because of your TED so they'll probably offer you a thyroidectomy. Please do your homework very carefully and fully understand your disease, it's progression, what state your thyroid is in etc etc before doing anything drastic. Also the worse thing for eye disease is to go HYPO so you need to be very closely monitored if they put on you anti thyroid drugs (ATDs)
Here are two links to get you going and excuse my passionate tone, I still get flabberghasted by some of the things patients say about how blase doctors seem to be with Graves and TED etc. I truly went to hell and back so if I can spare you that then I'll consider myself to have done the right thing. Educating yourself is the MOST important thing you can do.
thank you for your lovely reply..its a long story but basically i was over medicated on levo...so went hyper...btw..all results showed i was...so..my doc said this is going to be hard to turn around, have a week off Levo.....i think because i was nuts..you know that one right...lol..i think i had 10 days off...i went super hypo....cant remember the Ts..but tsh in this case was 26.4...bad bad bad...nobody is looking after my eyes......despite saying that i have problems..my gp is interested in endo...and has started me back on Levo...btw....i have done ok a lot of my life on it.....lucky really.....when you say flooded thats what i have felt like..that i am being flooded with something..my face aches.....i feel weird most of the time......a little better today...but thats today...most of my friends have abandonded me...cuz i am no fun anymore....i dont know where to turn......xxx
Yes i had RAI about 35 years ago..sorry..I am not with it today..and thank you for your most eloquent reply......i wish i knew that much..i just never needed to......i was always so well..xxxx
Hi I was with eye specialist for about 5 years. I had TED too and my blood results have always been in the 'normal' range. My right eye protrudes more than my left eye although I have better eye sight in the right eye. I've had corrective surgery twice which has made a tremendous difference to the look of my eyes although my right eye seems to be on the move again. I still have bags under my eyes and at the present time I am trying to have further blood tests as T4 doesn't keep me well but the L
Thank you for your super replies, I really appreciate it.
Here are my recent blood results:
I now have my results and ranges:
TSH - 2.72 - range 0.5 - 5.0
Free Thyroxin - 23.4 pmo/L range 10 - 25
T3 was either not done or not revealed to me.
My symptoms have been getting worse since June, but because I was told the above tests were normal they are now telling me I am anxious/depressed and have IBS. I have also been put on a course of CBT counselling to help - but guess what it isn't!
Does anyone have any advice on what to do next? My eyes are getting worse and my contact lenses have been dropping out.
I don't know how you can wear contacts with dry eyes. They can't be doing your eyes any good.
As a fellow dry eye sufferer and former contact lens wearer I would ditch the lenses - big lump of plastic stuck in your eye blocking off the oxygen supply - even the best lenses won't do your dry eyes a lot if good and if your lenses are dropping out it sounds like you have some sort of fitting problem.
You need to start wearing your glasses to give your eyes a break and put gel tears / dry eye drops (preferably preservative free ones ) in as often as you can manage throughout the day while you are waiting to be seen.
I have Graves and my eyes felt terrible dry, itchy, watering - just agony really - they always tended to be dry but this was awful, I also had a sort of vertical double vision for a long time before being diagnosed with Graves. The different endos I have seen keep saying 'your eyes are fine' I keep saying 'They're not' but they don't bulge so I feel they don't want to say there is anything wrong because they are suggesting RAI as an alternative should I relapse after my block and replace treatment.
Thank you for your reply - I guess I wear contact lenses because I have a high prescription my glasses make the appearance of my eyes worse and I feel very conscious about them.
Difficult one that isn't it. You will just have to do as much as you can to keep them in good condition.
When I stopped my B&R last October my results were TSH - 0.56 (3.5-5.5)
FT4 - 17.4, (10 - 19.8)
they lost me in the hospital system and I didn't go back until the end of March - TSH was up to 1.4 and T4 wasn't done. Due back at the beginning of October. I'll probably get a Blue Horizon home test before I get the hospital bloods done. I did that last year and I really liked seeing my results in advance - they used different ranges but it was all relative.
Blue Horizon are a company who do private blood tests. You can order a home testing kit, complete with 'hole punch' thing to get the blood out of your finger and a teensy weensy test tube to collect it in and send it off. I had TSH, T4, T3 (never had that done at hospital or by my GP and some sort if antibodies tested too. If you are a member of TUK then you get a 10% discount. Very easy and very quick.
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Thyroid eye disease
15 months Post RAI with Graves Eye Disease.
Thyroid Eye Disease - hospital appointment
