Im fairly new here and relieved to have found a place where I can openly discuss and hopefully get some feedback and advice on what appears to be Euthyroid graves.
Around Sept/Oct 2016 (whilst working abroad), I woke up one day and saw my right eyelid had retracted. I had a few meetings with the ophthalmologist followed up with a CT, Contrast MRI, PET CT (as the MRI, showed some type of lesion in my lacrimal gland) and blood tests. All my blood tests showed no evidence of thyroid dysfunction.
In January 2017 I was advised to start a course of high dose steroids (prednisone). I was on 80mg a day and gradually tapered down till April 2017. I didn’t respond well to the steroids, but it did stop me from seeing double.
1 month after I had discontinued with the medication, my left eye started to swell and protrude. The ophthalmologist I was seeing, wanted to arrange a biopsy for me and to possibly remove my lacrimal gland (which I did not do).
After spending thousands on consultations, scans, tests etc. I decided to quit my job and return to London. Immediately after landing at Heathrow, I went to Moorfield’s eye hospital and saw a great consultant. He reviewed my blood test results, scans and was very adamant that I have thyroid eye disease (based on appearance).I was glad to hear that I did not have a lymphproliferative lesion or a tumor.
I’ve been a little frustrated with the recent appointments I’ve had with both the Ophthalmologist and Endocrinologist. Although I have been diagnosed with Euthyroid graves, it’s a little disturbing to know that neither specialist are willing to investigate further. I have to wait and watch the exophthalmos progress while one eye becomes misaligned (all in the past 6 weeks).
Moorfield’s have put me on hold until my eyes stablise (can be a number of years) and to then eventually do corrective, orbital decompression surgery.
My recent blood test results:
July 2017 – Thyroid function test
Serum TSH level – 2.06 mu/L [0.3 -4.2]
Serum free T4 level – 12.5 pmol/L [9.0 – 23.0]
October 2017
Thyroid peroxidase Ab – (o.75) u/ml
TSH RC AB - (<0.4) u/ml (Borderline positive)
If anyone with a similar case to mine can tell me what kind of tests should I be doing? What should I avoid, or what should I be looking for in these tests. I know certain tests are not covered, so I am willing to go private, if I have to.
I know in my case the problem starts with the eye and is later on detected in the thyroid. I cant prevent this, but would like to minimize the impact, for when it does happen.
At the moment I am only taking selenium, I may start another course of Intravenous steroids followed up with immunosuppressants (another hospital suggested this). I am stuck in two minds on what to do.
Thank you in advance.
Rizo
Written by
Martin028
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Hopefully there will be someone here who can answer your questions. I believe the Thyroid Foundation have some particular interest in this area of TED so you might also want to contact them.
Hi Rizo,wow that's alot you are going through sorry to hear that I'm curious about your eye I have had swelling on my left eyelid I get it more so when I'm tierd it's weird never had it before I'm my husband's carer hence the tierdness I'm have celiac disease which makes me tierd also I was in shock when you said the dr put you on 80 mg of steroids I'm in Australia and my husband was on 25 mg for yrs we've tried to cut him down to 10mg we did that over a really long period reason for this was the tablet gave him ostioparosis and has many side affects it's the worst tablet ever I'm sorry if that freaked you out but I would rather you be aware of it and have more problems why they kept him on that for so long on such a high dose is beyond me they even said it suppresses your immune system I wouldn't be surprised if that's why you have eye trouble the amount of prednisolone they give here is 5 mg for three days to give you a boost if you need it forgive me for saying what is I would be looking that way drs can be ignorant at times I'm not saying all im not a dr but get angry with the damage it has caused my husband I could be totally wrong with what I'm saying in your case but please be aware of the Prednisolone I hope you can get an answers for your eye that's awful you are going through that
Hi Bailey, I'm very sorry to hear about your husband and what you are experiencing. The side effects of taking prednisone are extremely serious. I was advised to take 1mg per kg according to my weight (about 83kg). It was a difficult 4 months, I remember the dr describing it to me as a 'light form of chemotherapy'. Usually permanent damage comes with long term use of the drug. As much as I hated using it, I believe it did halt the progression of my eye disease, once I stopped it sadly became worse.
Sorry, I’m in remission with Graves but I only had the mildest of eye problems.
I was going to suggest going to Moorfields then I came to the part where you are attending there so that’s my only helpful suggestion gone out of the window.
I’m assuming you are using preservative free eye drops to keep your eyes moisturised etc. If you are not already using them then that might make them feel a bit more comfortable. Don't know if you know what your ferritin, folate, vitamins D and B12 are like but to help your thyroid you want them well up in their ranges, I’m not sure if that will do anything for your TED though.
I can see why Moorfields want to wait until things have settled before doing surgery but that’s not much fun for you. I’m afraid I don’t know much about interpreting blood tests but I’m sure someone will come along and offer advice and I’m sure there must be people out there with your problem who will be able to help too. If you don't get the responses you want I’d do a new post again in a couple of days.
As for steroids, I was on a massive dose that tapered to zero over three months when I was being treated for inflammatory arthritis a couple of years ago, I stopped them without any problem (my regime for decreasing was very strictly controlled though) but I was on a prediabetes study at the same time and discovered I had steroid induced T2 Diabetes which was very annoying. I read about low carb, high fat eating and ate my way out of it. I was just unlucky as I know several people who have been or are on high doses of steroids and haven’t had the problem I had.
Hi Fruitandnutcase, Yes I am taking eye drops. The protrusion prevents my eyes from closing fully during sleep. They tend to be quite dry. I have requested with my GP for a ferritin, folate, vitamins D, B12, T3, allergy test. Unfortunately they will not cover this : (. I will request again with another GP.
Sorry to hear about the steroid aftermath. Glad to hear you ate yourself out of it. Are you still on a low carb, high fat eating diet? may I ask what kind of eye problem did you experience
Hi Rizo, I ended up paying for my own blood tests. I use Blue Horizons, they are an accredited lab and there is a link on the Thyroiduk.org.uk website, there are other options. I pay £99 and get their thyroid 11 Home fingerprick test.
I got fed up asking my doctors for tests, actually it was T3 I wanted tested, it was never ever done by the NHS. The hospital kept saying that rai was my next option should my Graves come back and I thought ‘ not without me knowing my T3 results you’re not!’
Yes, I still eat LCHF, it’s a life time thing for me now, I bought a blood sugar meter and a good book about eating to be rid of T2 diabetes and discovered that when I gave up nice ‘healthy’ wheat / grains and jacket potatoes (which was what I discovered caused the largest spikes in my blood sugar ) I also lost a huge amount of weight without ever counting a calorie!
I’m also gluten free, I have a load of other autoimmune conditions as well as the massively high thyroid antibodies I had back then and after a year of being totally gluten free my thyroid antibodies have reduced to next to none.
My eyes have always been a bit on the dry side but they got ridiculous, they used to water and sting really badly - you wouldn’t think dry eyes could water but they do - just the wrong type of tears. My eyes used to feel like someone had punched me in the face, my eyes used to feel like they were being sucked into their sockets, so painful.
I also had a weird kind of double vision. If I was watching TV and the credits came on at the end or even just if any writing came on screen I could see the words but there was another half image of each word below the actual word. It was like vertical double vision.
If I read or computed for too long my vision was so blurred that I couldn’t see a thing for quite a while when I stopped - even if I looked up regularly while I was doing it, think it was just that my eye muscles weren’t working well.
I use preservative free eye drops, HycoSan or TheoloseDuo I’ve also got an eye bag that I put on the microwave for a few seconds then relax with it over my eyes. I have to keep using the eye drops though, if not I’m fine for a couple of days depending on where I am and what I’m doing - I find being a passenger in a car particularly bad - then all the symptoms come back again.
I imagine you will have a very gunky ointment for night time if your eyelids can’t close properly or do you tape them down with micropore tape? That must a big problem for you.
I don't tape my eyes down, just use an eye mask. It's more convenient using an eye mask for when I get up during the night to use the toilet.
After quitting grains, what did you replace them with? Im really amazed with how your thyroid antibodies dropped after going gluten free. Were you told that you were gluten intolerant, did you test for it? I am thinking to also go Gluten free.
My eyes also water profusely, especially when I wake up. I think it's a defence mechanism for dry eyes. I sympathize with your pain, my eye muscles are restricted and I have some up-gaze discomfort.
When I had my second opinion with the ophthalmologist. She advised me not to do any surgery because the disease is still active and that you do not want to have an operation as the disease is still evolving and changing.
She basically said if I do not do another course of steroids and immunosuppressants, I will be left with the restriction in my eyes. I've been booked to start the course next month. I am still not sure to do another course of steroids.
Thanks for the link, I will do a bit of research and arrange one of their tests.
Sleep mask is a good idea, last thing you need is a broken leg because you’ve fallen down the stairs because you couldn’t see where you were going!
I get my carbs from vegetables - the DietDoctor website has an online course that helps you get the hang of low carb. Think I got a new video every week for about 8 weeks, you’re u can download lists of carb values of different foods, it’s very good, basically veg that grows above the ground is lower carb than those which grow underground - I was shocked after having a bowl of parsnip soup - I should have realised at the time that it wasn’t a great choice. I know now though.
I’ve not been tested to see if I am GF, my rheumatologist offered to do it this time last year but I don’t really need to know and I didn’t want to have to go back to eating Gluten just to be tested because I want to stick with GF anyway. If you want to be tested make sure to do it before you start on GF or the test won’t work.
Definitely think it is a good idea to take your ophthalmologist’s advice, Moorfields are top of the tree. I was just a teensy bit miffed that no one warned me about steroid induced T2, I was given loads of warnings about the possible effect of HCQ on eyes - irreversible blindness!
Not a mention about T2 and there’s was me already on a pre diabetes study. That was fortunate as the T2 was discovered really early, think I started the steroid in September and had my annual study check at the beginning of November so it barely got going.
Have to say I felt like Wonder Woman when I was taking the steroids, all the horrible fibrositis like aches and pains in my shoulders and the pains in my hands and wrists just disappeared almost instantly.
In your case steroids are going to keep your TED under control which will be a good thing, I know several people on large doses of steroids who have no problems like I had, think that was just bad luck and a predisposition to it. I was well controlled, my decrease started almost as soon as I started taking the pills and I was able to stop then easily and it sounded like your course was well controlled too.
When I started on my GF adventure my Antithyroid peroxidase Abs was 31.3 <34 and my Abtithyroglobulin Abs was 401.0 <115
Last time I tested my Antithyroidperoxidase Abs was 9.2 <34 and my Anti thyroglobulin Abs was 40<115 it could be a fluke but the results have come down steadily since I started being GF and I wouldn’t want to go stop now. It isn’t difficult (or I don’t find it ) to do.
Hi rizo ...ur case is like mine ...my tsh this year was 2.6 in July range was 0.27...4.2 diagnosed with graves last year my trab antibodies were high sore dry and grittiness in my right eye was the issue with other weird symptoms took me to gp...i have developed photophobia now very sensitive to noises ...got pain in my throat where I have goiter but still blood results are normal ...one thing which I have learnt with steroids and non steroids anti inflammatory drugs that they mess up ur stomach and u get issue with that
Hi rizo I was hyper meaning I had overactive thyroid last year and the cause was graves disease which was triggered off by pregnancy ...so they put me on carbimazole which I was on for abt 7 weeks then they stopped it completely saying my blood results were normal ...but I was still symptomatic endo said symptoms not related to thyroid then I had develop acid reflux and few months ago I been diagnosed with stomach gastritis and I'm on medication for that ....
My symptoms got bit improved with the help of lovely ppl here on this forum and the one other forum I joined they helped me and advised me to start taking supplements which I'm taking ..but I still have pain in my throat which goes into my ear and head same pain which I had when I was diagnosed for my eyes opthalmologiat told me that they will improve once my thyroid will be normal my bad luck .not getting proper treatment still asking my GP to send me for ultrasound again but answer was its an expensive test so can't send me ....for my eyes I'm using hyco San eye drops ...optician gave me they help with the dryness but my vision has messed up ...what's ur latest blood results with the range ..if u post them here lots of great ppl here will help u ...plus have u been tested for vitamin d ...b12....ferritin ....folate thyroid patients have deficiencies in all of these in my case it was too...but GP never told me unless I registered myself with online patient records
Sorry to hear that. I posted my recent antibody test on my first post. Should I post it on another discussion? I haven't had my vit D, B12, ferritin and folate done. I believe I need to get this done privately. did you do yours via your gp?
I went to see a top consultant (ophthalmologist) privately in December as I was unsure about the best course of treatment. Having the symptoms of TED with a perfectly functioning thyroid, can limit your options in terms of the medication that is available. I was never prescribed any thyroid medication, radiotherapy or radioactive Iodine. I did do a short course of steroids (prednisone) at the initial stages.
I currently have retracted eyelids (the shock look) and eye bulging (not too severe). Since my thyroid eye disease has been with me for 1 1/2 years now and every 3 month follow up has shown no significant changes, the surgeon has given me the option of eye lid corrective surgery and if I wish to do so at another stage orbital decompression surgery.
After meeting with the private consultant I continued having my check ups at Moorefield eye hospital on the NHS, which another good consultant suggested to do surgery. The consultant stated 'your TED appears to be inactive and burnt out, I can recommend you have eyelid surgery'.
I asked the consultant if my eyelids could ever return to normal naturally (on their own), he replied 'unlikely'. I can understand that once the eye muscles have been inflamed, it is basically permanent. It is disturbing to know, that whatever alternative or natural remedy you try, the swelling and inflammation in your eye muscles can not heal on its own. I have read cases where people have reversed their thyroid problems, but unfortunately not once they have TED (particularly in its inactive stage).
I wanted to know if anyone has had corrective eyelid surgery (to bring down their eyelids) and if it was successful for them? or if anyone has any general advice.
In my last post, I was told to get my folate, ferritin, Vit D, B12 levels tested. They all came back normal, been taking selenium for 4 months. I've tried anti inflammatory supplements.
I haven't met with a metabolic nutritionist or had my stool sequenced. These are 2 things I had considered, but I since i have struggled to find a case where a patient with Euthyroid graves was able to reverse his TED, I gave up searching and decided it would be best not to spend more money.
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