A Few months ago I woke up & both my eyes were swollen. They’d been watering for weeks previously. And I’ve been using drops for dry eyes.
I’ve no idea what the issue was. Spoke to Drs and advised to take an antihistamine, which I’ve been doing now, for weeks, but issues still remain.
It has taken months for most of the swelling to go down, but my eyelids still look a bit swollen/puffy and it’s not going away, especially my right eye, which to me, looks bigger/bulging. It look like My eyelids have dropped and they do not look right to me at all, especially my right eye.
Last week I had an urgent specialist appointment, at Specsavers to check my eyes. I was advised I had a dry eye and to continue using the drops and to just use cold compress for swelling and that everything was okay. I did ask her if it could be thyroid eye disease but she didn’t seem to know.
Both eyes are really sore, ache and painful and constantly watering, after taking drops for weeks and antihistamine.
I’ve just started getting a little bit of what I think might be double vision, just at night whilst trying to watch tv and read the TV guide.
I was wondering, could it possibly be Ted but I thought only people with Graves’ disease got this and I’ve got Hashimoto’s?
My last TSH blood test was really high 28.5. (0.2-4.0)
Free T4 14.3 (10.0 - 20.0)
I’m waiting for the results of a second blood test because the doctor thinks the last one was wrong. And it took them four weeks to give me the results, as they said they’d lost it.
I’m going to contact my endocrinologist on Monday But he hasn’t been much help. And I’ve been struggling to get a doctor’s appointment, face-to-face. But I’ll keep trying.
In the meantime it would be great if anyone could advise me.
Amanda xx ta
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I had swelling in my eyes and hands before my diagnoses but since being medicated it’s improved. When I need a dose increase it becomes worse again but settles once I’m feeling better with an increase. My endocrinologist said it was due to water retention in my case.
I hypothyroid and my eyes starting playing up. I couldn't tolerate looking ahead, bright lights, I felt like my eyes were dry and I was having trouble watching tv. My mum has glaucoma and macula degenerationwhich can run in families and one day I was so concerned I phoned the eye emergency dept at my local hospital.
I went in, had drops put in and told I had tear film insufficiency and to use drops. The doc did say it could be related to my thyroid, apparently some with underactive do get eye symptoms. It could also be down to hormones, menopause, ageing, or other autoimmune diseases like Sjogrens.
I was tested for Sjogrens before when I had loads of blood tests done as I was having some weird symptoms, and my antibodies were negative so it's not that in my case. For the most part mine have settled but periodically they feel dry and uncomfortable so I use drops then.
It’s just the swelling for me, it doesn’t go completely but gets significantly better but I have only recently started the medication. I’m up to 75mcg now and slowly things are improving again. Fingers crossed once we’re optimal all this swelling will disappear!
It is possible to have Thyroid Eye Disease without having Graves and without being hyperthyroid.
Is your double-vision in both eyes? (Cover one eye, then the other. What happens to your vision?)
I hope you are using eye drops that do NOT contain preservative? Many become sensitive to eye drops with preservatives - even if when they first used the product they were OK.
I would have hoped the optician would have referred you to a hospital eye department. Might not be the case everywhere, but in at least some areas, opticians can do this directly without it going through your GP.
I did wonder if the drops were causing my eyes to get worse, as I’ve been using them for months.
I don’t really know what preservatives you mean?
I’ve been using Sainsbury’s eyedrops for dry eyes and Optrex soothing eyedrops for itchy and for dry eyes.
But the optician did advise me that it doesn’t matter how much eyedrops I use. I can put in eyedrops five or six times a day and it shouldn’t affect my eyes at all, that’s what she advised me.
I’d have to check about the double vision - as I haven’t tried covering my eyes. I’d have to try this if it occurs again.
I only noticed this a few nights ago, with my eyes getting blurry And I was struggling to read the TV Guide on the television. I’m not even sure if it’s double vision tbh.
Optrex multi action eye wash contains Benzalkonium Chloride. That is a typical preservative used in many eye drops. You'd have to check each product. Some make it quite clear they are preservative-free. E.g. Viscotears in the single dose units (but not in bottles).
I fell into that trap as the first eye drops I bought seemed fine. But after some weeks of using them, I needed to use them more and more frequently. That is a typical effect of becoming sensitive to the preservative.
I also used a thicker product, LacriLube, overnight.
Have become out of touch with current products as I no longer need to use them.
Oh yes! I did have double-vision in my right eye only. Intermittent and not frequent, but very disturbing.
Many report eye issues are resolved If adequately medicated. It’s possible the body is prioritising other important functions rather than eye health & not necessarily TED.
Most doctors do not consider TED a possibility unless you are diagnosed with Graves. (The TSI & Trab are considered the bio marker for both Graves & TED) but this not strictly true as those without positive antibodies & those that have normal thyroid function can also have TED.
Medics can be extremely poor at arranging the right care for potential cases.
Signs are
* Change in the appearance of the eyes (usually staring or bulging eyes)
* A feeling of grittiness in the eyes or excessive dryness in the eyes
* Watery eyes
* Intolerance of bright lights
* Swelling or feeling of fullness in upper or lower eyelids
* New bags under the eyes
* Redness of the lids and eyes
* Blurred or double vision
* Pain in or behind the eye, especially when looking up, down or sideways
* Difficulty moving the eye
Opticians are usually helpful & can write a letter for referral & recommends drop. Drops should be preservative free.
GP told me I likely had TED and told me to get specialist to refer. My specialist refused, as although I’m hyper - it’s from nodule not Graves. Eventually the optician recommended drops hycosan and supplied a letter recommending referral but since then, nearly 2 years ago, all I’ve had is 1 video appointment - in which I was told was error as I need an in person appointment.
I’m currently managing with selenium. Took 200mcg at first but this should dose should only be taken for 6 months. Then reduce to 100mcg . Preservative free eye drops & wipes. Rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.
Dry & watery eyes are due to lack of oil. The lipid layer stops to water loss from eye. I found warm compresses helped with this & very gentle massage toward lash line. If you been advised cold compresses & that is helping you stick with what helps you.
If you like to moisturise near your eye area use water based clear gels not cream/lotions. I did this as developed milia white spots round eye. I found the swelling reduced when I switched.
I’ve been eating a few Brazil nuts per day, for selenium, for years now. I’m wondering if that’s enough.
I seem to have every symptom that you’ve written down.
I’m more concerned because they’re quite painful and feel really heavy and it’s the appearance that’s upsetting me too, as my eyes have changed and obviously my eyelids are swollen and baggy.
Haven’t bothered putting on makeup, especially mascara.
I’ve gone out twice now, with no make-up on. I’m learning to adjust. I’ll just have to learn to be less vain. 😀
I’ve noticed the online Ted site but thank you for the info really appreciated.
I have Hashimotos and Thyroid Eye Disease. If your symptoms continue, I would recommend you see a TED specialist ophthalmologist, as I wasted a lot of time seeing eye consultants who knew very little about the condition. I found TEDct very helpful and informative and they helped me find a specialist in my area. They have useful information packs and a telephone advice line. I found it useful to take regular photos of my eyes (and keep in the ‘hidden’ area of my phone) as I could show these to the specialist and monitor my own progress. It’s very important that you don’t overdo it with Google image searches, as they often show the worst case scenarios. For reassurance, my eyes now look nothing like they did 18 months ago.
It’s very important to get your thyroid medication and key vitamins (folate, ferritin, B12 and Vitamin D) optimal and to take selenium, which studies have shown is beneficial to those with mild/ moderate TED. Start with 200ug dosage for at 6 months, then reduce to 100ug after. Don’t exceed 400ug as dosage above this can be toxic.
I use preservative free drops such as HycoSan or Hyloforte liberally for dry eye and also take lutein and zeazanthin (Eye Complex 7 on Amazon) for overall eye health. I wear sunglasses for light sensitivity and wear coloured night vision glasses for driving at night.
Keep posting if you need further advice or support 🦋
I’ll definitely go on TED site and have a good read. And I’ll have a look on Amazon too.
I have been taking all those vitamins you mentioned but I came off them because I wanted my blood work checked, however the endocrinologist didn’t bother ordering the tests for me, after saying he would.
Your symptoms sound similar to mine at the start of my TED. Worsening double vision alerted my GP to refer me to our local eye hospital where I was fortunate to see a Consultant with a special interest in TED. Our eyes are precious and I understand your concerns. I would push for a referal. TED charitable trust mentioned by PurpleNails should be able to advise on the situation in your area.
I had my vitamins tested last week. And again my thyroid TSH - 13.5.
I asked the endocrinologist if he’d test my vitamins, last June, he said he would, however, it was never done. Same thing happened when I asked for Free T3 & hormones testing.
He’s absolutely frustrated to me.
And now my eyes are really sore, painful, constantly hurting and my eyelids have dropped and are puffy looking.
He even had the cheek to slag off thyroid uk and told me not to listen to your advise.
I told him that you are the only help I’ve actually received.
I’m not looking forward to my next appointment with him at all.
I would appreciate it, if you could forward me the information, (I’m sure I read private blood tests, could be done at home), where you can get a nurse to come to your home and do private bloods, so I can get my free T3 done.
Thanks again
Amanda
Pathology Investigations -
Serum vitamin B12 level 329 ng/L [211.0 - 911.0]
Ongoing monitoring of people being treated with B12 or folic
acid is generally considered unnecessary (CKS 2011)
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Do you have any obvious reasons for low iron/ferritin
Eg
Vegetarian or vegan
Or heavy periods
Most likely vitamin levels are low BECAUSE you are hypothyroid
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
I changed my diet and became a vegetarian years ago. I was advised by thyroid UK to take all these vitamins and I have been doing so on a daily basis.
My health started to improve and especially when I doubled my vitamin D dose and eventually my thyroid levels became normal. I was taking 200 mg of levothyroxine.
I actually started to feel normal again and my hair stopped falling out.
But two years after, my TSH went the other way and Drs advised me to take less Levothyroxine and been taking 125 mg for two years. Now the same thing is happening, exactly two years later and it’s gone high again.
I asked endocrinologist last June to re-test my vitamins again, as per your advice, especially B12 they’d never been tested. I take daily complex B vitamins, magnesium, vitamin D3 and all omegas.
I had a lot of heavy bleeding, few years ago, due to Adenomyosis, but after taking mini pill that stopped and past two years now taking Provera, three times a day, for the chronic pain.
It’s been a few years since my iron/ folate was tested, last test came back normal so stopped taking iron tablets.
My doctors have never checked for anaemia, even though they are/were fully aware, even the gynaecology department of the heavy blood loss that I was getting. I just took iron tablets myself, just in case, as my mum was anaemic so I was aware of that.
But had no idea about why important to do full iron panel test. I’ll make another doctor’s appointment and speak to them about this, might be the reason why I’m so fatigued again. I’ve been so poorly the past eight months or so I couldn’t get to the hospital to get my bloods done.
My TSH levels have been okay past two years, so I’ve been wondering, if it could be due to the Provera, As I take a tablet three times a day, for the Adenomyosis pain. Or possibly the Covid injections? Or Antibodies that I have for another disease.,I’m at risk of getting antiphospholipid disease. I take a daily aspirin for this.
I was taking 125 mg of levothyroxine. I’ve had a doctor’s appointment this morning, now raising this to 150 mg.
I’ve spoken to the Drs at reviews and the chemist, on a few occasions and again last month. Because they sent me the wrong brand. I keep telling them to stop changing the manufacturer/brand of my Levothyroxine. I’ve told chemist that I refuse to take any different brand as one in the past, I think it was Tevo? Made me ill.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
I’ll ask for another doctor’s appointment about the iron panel.
I’ve already got another doctor’s appointment, awaiting about my eyes for a referral to a specialist and I’ll have a good read of everything that you’ve sent me, so thanks again, so much, for all the information.
Really appreciated.
Don’t happen to know where that information, that I’m sure I read but it was years ago now, that you can get a nurse to come to the house and take your bloods if you’ve bought private blood testing kits?
Still really need to get my free T3 done since the endocrinologist let me down
I take my levothyroxine at the same time each day or at least I try to, always around 6 am - 7:30 am.
Never have breakfast for at least an hour or usually more after or any coffee or tea or hot drinks. I just drink water and await a good one two hours or more. I’m usually really careful about when I take my levothyroxine that’s why when this happens, it just knocks me I just don’t get it.
I don’t take my first Provera till about 1:30 pm and try to take my vitamins with lunch and tea or with food.
Also, been taking more naproxen lately as my chronic pain has been bad.
I’ve had a few blood tests, over the years for coeliac disease. My blood tests were all negative. I had IBS In my 20s. I got better after a year of having that, by changing my diet and regularly exercising.
I haven’t had a Coeliac test done recently though.
My mum had coeliac disease, she was anaemic, had low blood platelets and Antiphospholipid syndrome. Lovely genes I inherited. 😀
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
You don’t need any obvious gut issues to still find significant improvements on gluten free diet
Before Covid, I changed my diet, decided to go vegetarian/vegan, and stopped eating bread too, because Id read you could be, sensitive to gluten if you weren't positive for coeliac disease.
I did feel much better, but that could be due to taking vitamins, eating loads of veggies and Id received some injections for my chronic back pain, so was feeling much better for a while, after that.
I have started to eat bread again, but usually get sourdough bread as low in gluten. I think.
So this could also be a reason my TSH is raised again.
I totally forgot about the gluten thing. But then again. I don't know if I'm coming or going, when I get poorly. My brain fog is terrible, no focus, concentration, memory is atrocious, cant complete sentences very well or compete when watching the Chase quiz on tv anymore, cant get my words out.
I think I'll try going without bread again, and see how it goes. I didn't actually miss it either, but I wanted more fibre in my diet so starting eating it again.
And on top of everything else, I started nearly passing out, with hypoglycaemia type symptoms. I'm still struggling with this too. I think it's because I'm not eating enough protein, or it could be because I go hours, without eating, which I'm working on.
There's so much to try to remember. Which is really difficult when your brain isn't working to an optimal level.
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