I can't cope anymore

[lizlou29]

NotADryEye - I will my talk with my current opth about it. I think he is anti-probing but then I know you've had a lot of success with it. I have a fear of ending up in a worse state than I am already in. I really like my current opth and don't really want to move on from him. He is the top guy at my local eye hospital which is only 5 minutes from me and has always been happy to see me at short notice. He keeps up to date with new treatments unlike nearly everyone else I've seen. He is happy to do the lip biopsy to test for Sjogren's and I'm leaning towards that although I know it is a very painful procedure.

I was prescribed the PF Cyclosporine, still at 2%. Thought I'd try it in one eye last night. My goodness it burns but the burning has gone now, unlike when I used Optimmune last week and it burned for 3 days. I think I'm going to do alternate eyes for a few nights to try and get used to it. No way could I use it in the morning as well. Other than that all I'm doing is taking Doxy, omega 3 and 7 and cleaning my eyelids with Blephasol. Everything else seems to make them worse.

Saw the endocrinologist yesterday and he has told me to come off the Levothyroxine. He doesn't think my levels have been monitored for long enough and wants to retest in 6 weeks as my TSH has gone up and done for the last 9 months. The only other thing he said was that I need to be on Vitamin D3 at a far higher dose than I have been as my levels are still really low. It won't have an effect on my eyes but he said it could increase my energy levels.

[DCRdryeye]

Lou - It's great you are seeing a top ophthal whom keeps up with new treatments. Cyclosporine 2% is stronger than Restasis, that's a good thing.

However, no ophthalmologist does it all, unless there is a specialist dry eye centre in the UK (which I doubt). So the trick is to see a 'few' ophthalmologists like I have to do. I see one who does Meibomian Gland Probing and offers a few other treatments others don't, and see another ophthalmologist in another state whom also offers something the other does not 'yet'. Therefore, I do not see the logic in staying with 'one' ophthalmologist just because he is good with keeping appointments and tries new treatments. If he's anti probing, how is that keeping up with new treatments? how is it being open minded? My ophthalmologists don't mind at all that I see others, in fact, they learn from each others perspectives and understand it costs me a fortune to travel to see them.

[lizlou29]

I should have phrased that better. He isn't anti-probing per se but he doesn't think that the training offered here in the UK is good enough so he's worried it could do more harm than good, obviously he knows it's my decision though. He himself requested the probe and was sent it along with a video explaining how to do it, I agree with him that that is not enough training. For me anyway it's important to stay with someone who is willing to try new treatments, attends a lot of conferences around the world to keep abreast of new and emerging treatments and actually has some compassion. Not just keeping appointments - he stayed an hour after he was meant to leave to see me as i had contacted the eye clinic in distress - this is the NHS so that's quite rare. Most of the other opths I have seen (I've seen A LOT) have misdiagnosed me or told me to use baby shampoo and eye drops that just made me worse and most have made me feel like I'm exaggerating the pain.

I would love to have the money to see different doctors for different things but as things like probing and Lipiflow aren't available on the NHS that is not possible, i'd always have to go private. I did see someone at Moorfields in London privately - she was recommended as a specialist in dry eye conditions and it was a complete waste of £200. I also spent over £1000 on Lipiflow which didn't help in any way. My opth thinks Prose might be the way to go in the future but again the financial side is a problem for me as I'd have to travel to the US. I'd like to hear from others who have had the MG probing done by David O'Brart.

The 2% cyclosporine is way way stronger than Restasis (I can't do the math) and I think normally people would titrate up to it. The burning lasts a good few hours and feels like someone is rubbing onions into my eyes, not sure if I can tolerate it but then there aren't man other options for AD. I've stopped the steroid drops as even the PF ones were irritating my eyes.

[DCRdryeye]

Lou - In terms of Prose, I've heard Ken Pullum is an experienced Scleral fitter in London and very well known. http://www.optometry.co.uk/news-and-.../?article=4829

I'm not convinced that Sclerals work well for those with severe MGD like myself since I've tried them many times. However, the better MGD is managed, the better outcome with Sclerals. They certainly do help prevent the evaporation of tears caused from the lack of lipids.

Yes, I understand your concern about wanting someone experienced to perform probing - so would I. Having said that, it doesn't work for everyone and having been probed about a month ago I haven't really noticed much difference. So perhaps you're not missing out on much.

I have cyclosporine 1% that's compounded. Perhaps you could ask for it? It still burns me, however, some members recommend using a few drops of saline before applying the cyclosporine to minimize the burning. I have not tried it and just put up with the burn. However, I'm going to be cauterized just over a month and won't be able to use cyclosporine due to the burning being amplified 100 times on burnt flesh. So I'll be without it for at least one month, ashame since it's action requires consistent use for at least 6 - 12 months.

Have you obtained a pair of moisture chamber glasses yet? They will help you immensely.

[lizlou29]

DCRdryeye - I've been told that sclerals would increase the risk of an infection but then I think I have to weigh up that possibility with the improved comfort I may get from them. I have heard of Ken Pullum, though i was told he was retiring - not sure if there is truth in that. I think I'm going to wait it out a while and see if the Doxy has an effect on the MGD and how the cyclosporine goes (if I can tolerate it).

I now have moisture chamber goggles for when I'm at home but as well as the sunglasses but I can't quite bring myself to wear the clear lenses when I'm out and about - a hurdle I'll have to get over soon I think. I think I'm lucky in that I have no abrasions/erosions considering how dry my eyes are but I know I've got to take good care of them to try and avoid that.

[NotADryEye]

I'm not a doctor, but I can imagine that training via just video might not be enough. I wonder if the company that makes the probes could do something to improve training. Or maybe your doctor could speak with Dr. ******. Just wondering if that might help to alleviate concerns though I have no idea if it's even feasible. Maybe you could suggest it next time you see him?

[NotADryEye]

Saw the endocrinologist yesterday and he has told me to come off the Levothyroxine. He doesn't think my levels have been monitored for long enough and wants to retest in 6 weeks as my TSH has gone up and done for the last 9 months. The only other thing he said was that I need to be on Vitamin D3 at a far higher dose than I have been as my levels are still really low. It won't have an effect on my eyes but he said it could increase my energy levels.

lizlou, I personally find it odd that your endocrinologist is putting you on and then taking you off Levothyroxine completely. This may be standard practice but every one I know that is hypothyroid has their Synthroid (Levothyroxine) dose increased or decreased in very small increments over a long period of time with testing every 6 to 8 weeks when the dose is changed. Were you on a very low dose?

It is also not unusual with Hashimoto's to have a fluctuating TSH. Will he have more than just your TSH tested?

My primary always tests TSH, T4, T3 and TPO and I just had blood drawn on Monday. I will get the results next week. It should be interesting since I have been on Low Dose Naltrexone for a little over a month for the Hashimoto's.

My feeling is that Vitamin D3 is very important for the eyes. Low is not good. Too high is not good either.

[soaps]

Liz that sounds terrible about sleep. i sleep now but perhaps not great as i clench my teeth and have a very painful jaw which limits what i can eat. i was gonna try lyrica for pain but i agree medications have scary side effects.

I like celluvisc too. i have tried the following ointments before for sleeping tobrex , chlorsig , vita pos A, lacrilube , polyvisc , hydrocortisone , Hypotears and theratears gel. i hope u eventually find something that work s so u get some much needed sleep . Don't b shy and wear ur dark wiley x out ur eyes will feel so much better. and u can close ur eyes without anyone knowing.

[DCRdryeye]

soaps BIG PHARMA wouldn't like hearing you're not going on Lyrica...lol. I do agree the sides are sometimes worse than the temporary relief, especially the unknown long term sides. We already know they place a burden on the liver and anything that does that will disturb sleep.

Lou - In terms of sleep, we all know a dry eye patient NEEDS sleep for recovery. As we get older sleeping issues do become a problem. I'm wondering if you're doing much exercise or activity during the day so you don't have accumulated energy at night. Don't eat large meals close to bed time and perhaps you could try a short course of Temazepam. A member here reported her eyes improved dramatically after using Temazepam. Well, it wasn't anything in the drug that directly affected the eyes, it was the sleep it induced that helped. They are addictive, so at least two weeks sleep should help. I'd then look into sedative herbs, not teas, but tonics extracted with ethanol, or tablets made from liquid herbs. They are very potent and studies clearly show they relax the parasympathetic nervous system...this aspect of your nervous system is not only required for sleep, but also for tear production.

[lizlou29]

NotADryEye - The Endo thought that my GP put me on Levothyroxine too quickly. My TSH had gone from 7 to 4.95 when she started me on it and he would have wanted to wait to see if it stabalised there. The lab will only test TPO if it goes above 5 apparently so if that's the case at the next blood test in 6 weeks time they will test it. Starting on 5000iu of Vit D3 daily for 3 months. As it's winter I'm not too worried about the level going too high but I will ask to be tested again as I have read about Vit D toxicity. I want my hormone levels tested but my GP doesn't see a compelling reason. My last ophthalmologist had just completed a study about the effect of testosterone on MGD so he tested for that and my level was normal but I haven't had estrogen tested through a blood test.

soaps - I've finally stopped clenching my jaw at night. I think it was through stress. Always hurt in the morning! As it's going into winter hear now I don't like wearing sunglasses outside. Was looking for some clear lenses that don't look too strange. I've got the theratears gel now so will try that out over the weekend.

DCRdryeye - I'm not going back on any kind of sleeping tablet because of the hell I went through getting off them. Any meds that work on GABA are awful for me, I was a nervous wreck, lost a load of weight and had memory loss. The anti-histamine sleep meds dried my eyes out so bad and they haven't recovered from that. I sleep well every other night basically. Strangely when I'm really tired it almost numbs my eyes. If I sleep too long in one stretch my eyes get so so dry, need to find a good nighttime gel/drop which I haven't yet. I'm hoping the Doxy, omega 3 and 7 start to kick in soon but who knows! I used to run but since this flared up any air on my eyes kills. For the summer I had wraparound sunglasses for running that protected my eyes a lot. I could do more exercise at home but I just want to sit with my eyes closed when I can! You are definitely right about exercise helping with sleep though. I've suffered insomnia on and off for 10 years and exercise is so important. I used to go for long walks on the coast and slept like a baby after. I'm 29 and apparently people are meant to have the best sleep in their 20's, lucky me!

[soaps]

Hey liz
Im 28 i want good sleep too. yes i wear sunnies inwinter and my i sonetimes can't c a thing and look like a fool on a rainy overcast day . but my dentist said i look like a superstar bless him.
I have no.courage to wear my clear moisture chamber either ...
Ohhh they unfortunately discontinued Hypotears.but bausch and lomb soothe ointment or tears again ointment.both sound great as lanolin free. Im waiting to get them in mail. i posted my sleep routine somewhere else for abbygirl i think .

[lizlou29]

Hey liz
Im 28 i want good sleep too. yes i wear sunnies inwinter and my i sonetimes can't c a thing and look like a fool on a rainy overcast day . but my dentist said i look like a superstar bless him.
I have no.courage to wear my clear moisture chamber either ...
Ohhh they unfortunately discontinued Hypotears.but bausch and lomb soothe ointment or tears again ointment.both sound great as lanolin free. Im waiting to get them in mail. i posted my sleep routine somewhere else for abbygirl i think .

Let me know how you find the new ointments. I've tried quite a few. I was ready to scratch my eyes out after using Lacrilube one night yet some people love it. Got to hunt for my Tranquileyes tonight as I somehow lost them when I got a new bed and my other sleep masks are rubbish. My ophth says I don't blink enough so I'm consciously trying to do that. Tried to get my boyfriend to see if I sleep with my eyes open at all but he always falls asleep before me lol.

[NotADryEye]

lizlou, you might want to watch this video about the TSH test. I know you can't necessarily change the doctor's opinion. But at least you can understand why my GP tests all 4 levels when she has my thyroid checked. The information is not presented by a doctor but there are many doctors who disagree with only testing TSH, mine being one of them.

http://www.youtube.com/watch?v=tOb2POQGE6g

Regarding D3, my GP has me on about 5,000 units per day. That's a safe level and it's sunny here year round.

Regarding hormones - it's not just the level of estrogen or testosterone, it's also their ratio that's important.

[libralady]

Hi Liz, I am so sorry you ae suffering so much. With regard to the hypothryoidism having suffered from this for over 20 years I know a little about the subject. I agree with the other members comments about testing all levels of thryoid and not just TSH. It is hard to get GP's to change their minds I know. I do know they have changed the range with 2.5to3 being the new high level versus the old 5 to 5.5 high. Read Mary Shomans views on hypothyroidism, just google it. I do hope you can find some relief from all your problems. I sympathise with the anxiety and sore dry eyes, but you seem to be having a very bad time. I use cellevisc eye drops and they do seem kinder on the eye than ones with preservatives. Sorry I can't help more.

[NotADryEye]

lizlou, have you ever asked any of your doctors if you have conjuctival chalasis? It is often not diagnosed. It is considered rare. For example, one local ophthalmologist refused to believe me when I told him I had surgery for it in both eyes and said, "it is very rare. It's not possible. I've never seen it in my practice. You need to send me your medical record. You didn't have it."

That seems to be the prevailing attitude. But if you have it and you are symptomatic no amount of drops or ointments or anything will help and that may be another reason why you are getting no relief from anything you do.... because you have not yet been properly diagnosed.

Maybe those doctors on the dream team could help. You do not have to change doctors since you like the one you have. But you could see one of these other doctors, like Dr. Bart, and ask for an opinion. We can do that here in the U.S., see a doctor for a second opinion. Sometimes, when the diagnosis is difficult or the treatment is not effective or there is surgery or something like that involved, patients go for a second opinion.