Hypothyroidism & dry eye

[Renpet]

I am curious to know if any other people with hypothyroidism have or experience chronic dry eye condition. An NHS eye specialist said it is not uncommon in people with a thyroid condition

[Tldg45]

Hi, I suffer with dry eyes so I no longer wear contact lenses. The optician recommended that I use eye drops. I've never mentioned it to my doctor as I feel as that I'm told all my symptoms are linked to having an underactive thyroid

[Fio1331]

Interesting. After wearing contact lenses for 30 years (and feeling rather smug about never having any problems ), since my thyroid issues began, I've had itchy and sore eyes to a greater or lesser degree. Mostly it's been blepharitis. Picking up my first varifocals from the optician next week...!

[Hidden in reply to Fio1331]

1st varis you'll be fine just point your nose at what you want to look at eyes will follow lol

[MajorTom]

Eye issues are well documented with Hyperthyroidism (Graves Disease) but not so much with hypothyroidism. Be interesting to know if there is any research / statistics.

My hypothyroidism is Hashimotos, so autoimmune, and I have Sjogrens Syndrome, another auto-immune condition, extreme dry eye and have to wear goggles despite drops and gels. I wonder if others could sometimes have undiagnosed Sjogrens if it is not severe?

[MariLiz]

I’ve been buying and using hypromellose eyedrops for years due to dry eyes caused by underactive thyroid.

[Kipsy]

My optician has recently advised me to use an Eye Bag (cheaper from amazon than he charged me) for the beginnings of Blepharitis, which I’m experiencing. Haven’t been able to tolerate my contact lenses for years now but never made the thyroid connection until recently. You heat it in the microwave for 40seconds, lie down for 10 mins then massage the eyelids as per the YouTube video posted by the guy who invented the Eye Bag. I’ve been using it daily for a week so far- I guess it takes time but I do feel some relief. Eyes are less gritty in a morning and feel moister. The optician suggested daily use for six months but the YouTube video suggests a couple of weeks. Worth a try perhaps?

[witchiegirl in reply to Kipsy]

Interesting. We don’t have a microwave. I dab eyes with witch hazel - from Boots pharmacy section. It reduces the gunk and irritation l have in mornings, and at other times too.

[helvella Administrator]

Renpet,

If you need any form of eye drops, please get some without preservative.

I too suffered from itchy, dry, unpleasant eyes before diagnosis. I used ordinary hypromellose eye drops. Initially quite successful but over weeks, maybe months, it felt as if the drops were making my eyes worse - a few minutes of slight relief followed by more severe itching.

This is common - many of us become sensitised after using preservative-containing drops for a while. The answer is to use preservative-free products. I found Visco-Tears single dose units were fine but expensive. There are, I believe, several options.

MariLiz

[Renpet]

Thank you to all you kind folk who responded to my query hypothyroidism & dry eye. I’m 81, been on Levothyroxin for about 15 years (100mg per day) and to my shame, never really questioned results or doctors decisions. It’s only with increasing eye problems that I’ve really sought specialist help & started to delve further into related issues. Now I’m wondering about all the joint pains, particularly spinal, which i’ve suffered for years since being diagnosed with having an under active thoroid. Where to now I ask?

[Anthie in reply to Renpet]

Hi Renpent, I've had the same problem with dry eyes over the past few years, itchier at certain times of the month (depending on the cycle) and have been taking levothyroxin for 10 years since my late thirties.

I'm French and we've started a battle lately with our own NHS and the lab in charge of producing the thyroxin since they changed the excipient in their formula (my reason for being on this very interesting forum, I wish we had the same in France). A lot of people have complained about bad side effects like joint pain, severe headaches, irregular blood pressure and hair loss. I am hypo but have been stable since taking the Levothyroxin, but with the old as the new formula, I'm wondering, like you, about the side effects of the medicine in the long run. I've had a lot of tendonitis and gut inflammation lately but for most GPs, it's difficult to measure the impact of the drug on other hormones and the interaction with your diet, your age and your genes...

All I can say is that, from your forum and talking with other patients, some foods are better than other to avoid inflammation. I'm still looking for a solution as I'm losing my hair with the new Levothyroxin and it seems the medicine blocks the absorption of some minerals and vitamins. But neither my GP or the endocrino I saw mentioned any of this.

For joint pain, the most helpful thing for me has been to exercise very regularly (aquagym/swimming, stretching and nordic walking) in order to eliminate toxins and build up muscle since it seems we lose muscle as well due to the thyroid dysfunction, drink a lot of water and eat a nutritious but balanced diet. Sugar (all kinds) does play a part in inflammation...

No straightforward solution, I'm afraid! Sorry for the very long post!

[ffranny in reply to Anthie]

Hi

just a thought, but could you ask for T3 being in France?

Or even Natural dessicated thyroid?

[Anthie in reply to ffranny]

Hi ffranny, I'm not sure about NDT : I didn't even know it existed before reading all the posts on your forum! I'm sure my GP doesn't know it at all. I'm just starting to dig into the problem and trying to understand why we have so little power on the medicine we are being given... The French NHS imposes its rules and until the late scandal about the new levothyroxine, no patients knew that doctors were not even allowed to prescribe another form of levothyroxine. Because what's amazing for our case, is that another laboratory has been producing a pure liquid form of the molecule, very well tolerated (I didn't know that before the affair with Merck lab). But because it's a small laboratory, the NHS has a deal with Merck and only reimburse the Merck product. You can only get the liquid form if you are a child or very old or disabled and your GP has to sign a form saying that you can't swallow pills (without any intended pun .

Thanks to your forum, I'm getting another viewpoint and finding out that even concerning blood analysis and standards, we don't get the same feedback or method from our French doctors. For instance, I've always been told to take the levothyroxine before getting a blood analysis of TSH... For the T3, I think I can get it but if I remember well, the levothyroxine was good enough since the GP and the endocrino had ruled out Hashimoto for me. However, I'm going to ask for a new blood analysis with specific details for vit D, B12 and ferritine and the T3-T4, in addition of THS. Indeed, once you're stable, I've only been tested on THS and for Vit. D, I'm just above the norm.

I'm also finding out about gluten free diet (very tough to follow over here where you get fantastic breads and cakes...) and the reason why, even if you're not allergic to gluten in the first place, it can be harmful for your antibodies, but also for the assimilation of vitamins and minerals (which can account for the hairloss and the leaky guts as you call it!). No doctors I've met have ever mentioned this. So, I hope my GP will listen and read the articles. She's very trustworthy and efficient, and I'd like to get her own view. Because apart from the very annoying hairloss, my count of white blood cells has been slowy decreasing for the last ten years, which would coincide with the thyroid dysfunction...

Are you taking NDT? Is it as efficient?

Thanks a lot for your concern and suggestion in any case. I'll let you know what feedback I get.

[ffranny in reply to Anthie]

Hi

yes I mourn my hair loss and hate the weight gain!

well according to a respected retired endocrinologist Dr Toft, I understand about 25% of us do not convert T4 to the active T3 and need to take T3, but GP s here in the UK do not prescribe it unless you are reallly lucky to have one who has his or her own mind and will fight against government guidelines for you.

I think I am one of the 25% as I never felt good on thyroxine. I tried NDT from America, ( International Pharmaceuticals) much better, my eyesight improved for one thing! It has become more expensive now so I am considering what to do. ( I didnt tell my GP though, as I asked for NDT on prescription and I left feeling like a criminal for asking! )

If I was in France I would definately ask for T3, or NDT if not getting on with thyroxine.

I am learniing a lot from this forum, I love it!

I will be getting blood tests privately as NHS doesnt test for all the things you need to check, too.

Good luck. heres to our good health!

[Anthie in reply to ffranny]

Hi! Thought would give you a bit of un update. I went to see my GP yesterday since I got a really bad cold and couldn't go to work. The situation over here for the thyroxine is to replace the new formula by the German Levothyroxin which apparently is better tolerated. My problem is that I don't want to change just because there's a problem with a few patients. I haven't had any serious problems with the new formula apart from the hair loss, but then again that could be seasonal. Unlike you, I got stabilized after 6 months when we discovered the hypo. To change to another molecule is always tricky since you need at least 4 weeks to adjust. I wouldn't try in winter when metabolism is even slower and I lose energy. So, I'll wait spring to see how it goes unless there's trouble in my blood analysis.

I mentioned the NDT but got no reaction and at the chemist's she smiled but was very uncomfortable. I don't think it is sold over here: too much lobbying and the administration with the Doctors National Council would not approve a medicine that could not be checked. I suppose it's also a cost issue: it's cheaper to produce a massive amount of synthetic hormone. Do you know the percentage of patients under treatment in the UK? In France, we are about 3 millions taking the levothyroxine and the figure doubles for patients with other treatments.

Anyway, my GP agreed to prescribe another blood analysis after I explained that before changing to another medicine, I'd like first to see if there's a problem with my fixing the vitamins and minerals. So, I'll go and be tested for B9/B12, ferritin with a detailed test of T3 and T4. However, she said that the rate of T4 was not an indicator of anything: they can't interpret the results... I must say I'm lost between T3 and T4: I thought our body turned T3 into T4 but apparently it's the other way round. If you know any website with a clear insight into how all this function, let me know! I got a powerpoint from a doctor but I don't understand everything.

What I understand from this forum and your reply is that all this is NOT free for you. I wonder how the patients who cannot do otherwise than follow the NHS prescriptions are coping.

As for putting on weight and hairloss, have you tried the gluten-free diet and avoided sugar (the quick glucid)? I haven't put on weight but I practise nordic walking regularly and core exercises for my back. I've lost muscles and with the new medicine, I actually lost weight. That's how I came to the running programme from Couchto5K run by the NHS and found out that there was also a forum for thyroid patients! I finished it last week and I must say it's really great to give you a boost. I never thought I would enjoy running that much.

I've heard about ketogenic diet (based on total elimination of any sugar, carbs included, replaced by fat, good fat especially: nuts, avocadoes, meat and butter) from an acquaintance who has diabetes and she thought it was amazing. However, you need to get vitamins and minerals supplements and have regular checks with the doctor or nutritionist because it's not good for the liver. It's a diet that is recommended for epileptic kids initially and also for patients with neuronal degenerative disorders because it slows the process. But people running marathons also use it. It burns the fat made from glucids. And the fat you eat is not stocked. If I understood well...

I hope you'll find an accessible solution. Have you read that post which listed all the drugs available (more or less) in the world? Here's the link to the site: stopthethyroidmadness.com/a...

Good luck too and keep posting!

[helvella Administrator in reply to Anthie]

Anthie,

If you are in France, desiccated thyroid is not just not available, but is illegal.

greygoose has explained a few times - and while I have some memory not enough to recount properly.

[Anthie in reply to helvella]

Yes, that's what I meant Our system makes it impossible to sell this kind of products because everything has to be quality controlled by the Conseil de l'Ordre des Médecins and the Chemists + Ministry of Health. I assume the quality of NDT is not stable enough from one box to another to be patented (and no control of the animals beforehand either). So, you can only buy it from the Internet with the risk of getting a terrible product.

I don't know any French patients who automedicate concerning thyroid dysfunction: too complex... But thank you for the precision!

[helvella Administrator in reply to Anthie]

Found the post:

healthunlocked.com/thyroidu...

[Trace7 in reply to Anthie]

I noticed that when I went on levo my ra latex turbid count went up. Shortly thereafter I went off the levo and my ra latex turbid count went down. It seems like there is a correlation although I have never heard anyone else mention it. I am trying to self treat with kelp and selenium, vitamin d, magnesium, zinc, vitamin b and c and a few others that are not necessarily associated with hashimotos. Also make my own kefir and kombucha for gut health and just got off a 10 day fast. I am cutting out sugar and gluten also. I do have a goiter which has recently become very uncomfortable as it feels as though I always have something stick in my throat and chest. I have read that your thyroid can actually grow into your chest! I really hope this isn't the case with me. I will request an X-ray next visit to the dr.

[Clarebear]

I suffered with Stevens Johnson syndrome which has caused me to suffer with severe dry eye. I use preservative drops called Liquifilm tears and at night time I use lacrilube. I also have punctual plugs to try and keep the tears in my eyes. All of these help a lot and I get them all on prescription which is of course free due to my hypothyroidism.

[witchiegirl in reply to Clarebear]

Since the unavailability problem for Lacrilube a year or so ago in the UK, I’ve been getting other night time gels. Xailin and VitApos. I find them much less gloopy than Lacrilube. I’ve no idea about cost differences. The GP has never quibbled.

[Clarebear in reply to witchiegirl]

Yes I’ve used vitapos too and like that - think it has added vitamin A? I ordered that from amazon.

[witchiegirl]

Yes. I had to give up contact lenses too, but that was ages before it was bad enough to need eye gels and so forth. I can’t remember what the trigger was for gels. I also have autoimmune liver disease and that’s associated with dry eyes and secondary Sjogren’s disease so that might be it. It’s annoying. At times the eye thing is the most disrupting of all my autoimmune conditions- l have 6 or so depending on how you count them!

[judburke]

I have had a dry eye for the last few years - the optician suggested to use a warm flannel each morning on it and gently massage the eye to stimulate the tear ducts.

Recently though I went dairy free for a while as an allergist said I was intolerant to cows milk (I am already Coeliac so that wasn’t a surprise). I went off cows milk for 4 months and took a probiotic capsule. This healed the intolerance and an added bonus was the dry eye disappeared too!

[Kipsy in reply to judburke]

Your first paragraph exactly describes what I’m doing but instead of having to use wet flannels, I use what is called an Eye Bag then massage the eyes. Yet another thing to do!

[judburke in reply to Kipsy]

I am going to look up eye bags. That’s a new one for me. Am always learning something on here lol

[Kipsy in reply to judburke]

It's called Eye Bag MGDRx Reuseable Warm Eye Compress. My optician charged me £23 but I've subsequently seen them on Amazon for much less. They are filled with flax so if you're allergic to that best to avoid, otherwise they're very simple to heat & retain their heat for 10 mins.

[Dreamer12]

Hi Renpet

I have very itchy eyes at times since becoming hypothyroid and I use overnight lacri-lube ointment when required .. the Optician prescribed it and now I get it on prescription. I also use Eyedrops as required. Viscotears and other eye treatments have worked well too. The optician told me that “Dry Eyes” can be common with hypothyroidism. I find one night sleeping with ointment on .. makes a huge difference . Xx

[Bobbiesgirl54]

Hi there- yes! I too get terribly dry eyes and am hypothyroid. Very annoying i have to say, but not as bad as my horrible joint pain!....life’s a bitch.

[ffranny]

yes! also after severa years on thyroxine, my night vision was getting worse and worse over the years. I changed myself over to NDT and and after a few months my night vision came back almost to what it was before!

I have eye drops from the gp for my eyes now

[peskygnat]

My dry eyes are killer!!! Tried several OTC lubricating drops. No help. Started using Restasis eye drops about 2 mos ago. Twice a day, 1 drop each eye. It is helping. But I still have pretty bad blurred vision. I’m understanding it can go along with hypothyroid & PA! I’m a winner 2xs I guess since I have both conditions! Made an appt with the Opthamologist. Can’t waitcto hear what she has to say!