need help, suggestions, anything...b/c Im running out of options/hope. :(

[NotADryEye]

yes i get that soap in the eyes feeling all the time! supposedly my hypothyroidism is being kept under control with the levothyroxine Im taking but i dont know about my TPO. Id have to check the next blood test.

Soapiness can be caused be a few different things. If there are bacteria they break down into amino acids and this mixes with the lipid layer in the tear film. The result is soap. The inflamed thyroid is another cause. Be sure to ask for a complete thyroid panel – TSH, T4, T3 and TPO (plus Reverse T3 if you are gaining weight, though some insurance does not cover Reverse T3). If TPO is high you have Hashimoto’s Hypothyroid. Has anyone ever used this term to describe your condition?
The soapiness is an awful feeling, isn’t it? It stopped me yesterday from posting this response to you. The soap makes the tear film terribly unstable.
Can you see the bubbles?

I was tested for a very large range of food & airborne/animal/plant triggers. I didn’t know there was a difference b/w allergies & sensitivities.

Allergies can cause life threatening reactions like anaphylactic shock. Sensitivities could be pre-allergy or just lower grade. My allergist did nothing for sensitivities.

would probing be a one & done deal or does one have to continue getting the procedure over & over?

The frequency of probing depends entirely on your condition. Some people only need to be probed once. Others need to have the procedure repeated. I have had it done 3 times and each time the outcome was very, very good.

If its not covered by medicare/medicaid it might be out of my budget range. Id love to visit Dr ****** but again Ive heard he doesnt take insurance & he's expensive.

You might try calling the office to ask about insurance. I believe he takes Medicare. I’m not sure about Medicaid. He’s considered out of network on my plan, and probing is covered, as are office visits, at an out of network rate.

I dont know if & when i could ever afford it so for now I think i might have to concentrate on more affordable options for me.

I know it is hard financially. The problem is that if you have something like conjunctivochalasis it will likely only get worse.

its hard b/c theres no gaurantee that the more expensive options will really help you either. And I keep getting more criticism from family that Im spending too much money on my eyes with no positive results for anything Ive tried. Its so frustrating.

You are absolutely right. There are no guarantees regarding outcomes. There is just the statistical data. As a single data point, however, I can say that Dr. ****** has helped me tremendously. I would not be where I am today without his care. I wouldn’t be able to write even this short post.

If you’d like to talk off line feel free to send me a private message.

But whatever you do, don’t give up hope.

[Guest]

SAAG
thanks again, very helpful. So is ocu rosacea always triggered by an allergy to something? B/c again I already been tested for allergies & came out negative...but if not its somehting Im considering as well.

You can definitely have dietary triggers that flare up your MG's (ocular rosacea for example), without being allergic to the food in question. So again, testing negative for allergies doesn't mean a change in diet can't help you. Is this a super common scenario? Maybe, maybe not. In any case, we're hardly "typical" dry eye patients, hence the "typical" treatments don't make us normal and we need to keep searching for other contributing factors that a "typical" milder case wouldn't need to bother with.

There are a couple of approaches I'd consider:

1) A generic anti-inflammatory diet - cut carbs way back; no processed foods; make fresh vegies a HUGE part of your diet (at least 50% of each plate of food you eat for example), fresh, unsweetened, unprocessed fruits too, although vegies have less sugar in them so would be your focus; incorporate lean protein sources to keep you feeling full with each meal such as lean cooked chicken in a lunchtime salad, maybe eggs with breakfast etc. Dr. Latkany talks about an anti-inflammatory diet in his book for example.

2) The rosacea diet in Rosacea 101 - this is not only an anti-inflammatory diet of sorts, but also incorporated avoidance of known rosacea triggers... it then allows you to add them back one by one to help you figure out which ones are a problem (if any). We know rosacea (even if you have none on your face) can mess up your MG's, hence my thinking that this is worth a try for someone like yourself who has tried so many other of the easier treatments.

Lastly, this is certainly not a mainstream, universally-accepted-as-likely-to-help treatment approach. It's not the fault of the doctors, it's just that no-one has spent the money to study this kind of thing extensively... hence, it's not likely to be suggested by mainstream medical practitioners. However, for someone that's been through everything else that IS mainstream, it's not likely to hurt you, so why not give it a try. If anything, worst case with this is you end up eating a lot more fresh fruits and vegies and getting more vitamins in your diet than you usually do, which is likely to be a good thing, right?

[chimera]

NotADryEye & SAAG,

thanks again, very informative & so helpful! i am making a list of all the different treatments & considerations that I havent tried yet. Im going to choose several so i can talk to Dr Tseng about them on my next visit & go from there....

I have already been tested for Hashimotos & came out negative for it, but I have gained weight since I was diagnosed with hypo in 2009....

Im glad to know that ****** takes Medicare & that probing may be covered. It be even better if I could find someone who does it closer to Miami so it could be easier for me to make several visits if I have to have the procedure done more than once.

I'll consider the anti-inflammatory diets too, though I wont lie, I suck at diets. I should be on a low cholesterol diet too & I am trying, but I cant seem to keep my cholesteral down.

and I want to thank Rebecca for keeping such a wonderful site & forum. I dont know what Id do without this place.

[Guest]

I'll consider the anti-inflammatory diets too, though I wont lie, I suck at diets. I should be on a low cholesterol diet too & I am trying, but I cant seem to keep my cholesteral down.

For me, the only way I was able to stick to the enormous restrictions of the rosacea diet that I tried was to plan out, several days in advance, literally every spec of food that I was going to eat...including what to eat if I got hungry in between meals. That made grocery shopping easier, and it made sticking to the plan easier since I knew exactly what to do each day without even thinking about it. As for sticking to it, I knew it would all be pointless unless I stuck to it perfectly, so since I didn't want to be missing out on some of my fave foods for nothing, it helped me to follow the rules.

No doubt about it, it's not easy... but it can be done... a good meal plan helps a ton.

As for cholesterol, I believe that most of the cholesterol in your bloodstream is stuff your body makes on it's own, not stuff from diet. So while reducing dietary cholesterol intake can certainly be very useful, it's not necessarily your fault if it's still high... it could be just the way your body works. Medication can help that part of the problem though. On the other hand, if you're still eating lots of high cholesterol foods, then boo! You've gotta stop!... but you know that already.

Interestingly, I was watching a video once about biochemistry (which usually bores me to tears so I'd never watch it... this time was different though)... it was about how the body metabolizes sugar (sucrose)... in particular, the fructose component (1 molecule of sugar, aka sucrose, contains 1 glucose and 1 fructose molecule). The fructose we consume can be metabolized by our body into cholesterol. So... makes me wonder if cutting back drastically on sucrose intake might help some people lower cholesterol...

But I digress... back to dry eyes

[NotADryEye]

NotADryEye & SAAG,

I have already been tested for Hashimotos & came out negative for it, but I have gained weight since I was diagnosed with hypo in 2009....

Im glad to know that ****** takes Medicare & that probing may be covered. It be even better if I could find someone who does it closer to Miami so it could be easier for me to make several visits if I have to have the procedure done more than once.

and I want to thank Rebecca for keeping such a wonderful site & forum. I dont know what Id do without this place.

When you get your next thyroid bloodword, you might ask for a complete order, including Reverse T3. Weight gain is sometimes caused when Reverse T3 is high, blocking the T3 receptors. Do you know what your TPO number was when you were tested for Hashimoto's?

There are few doctors who do probing and also Dr. ****** specializes in the treatment of Dry Eye. It's hard to find subspecialists in this area and we are just fortunate in Florida that he is nearby, relatively speaking.

And yes, thank you Rebecca!

[chimera]

NotADryEye

I am looking at the copies of my last few lab reults, I had only been tested recently for the TSH which is normal, but not the others. So I'll ask for a full panel including TPO. Unfortunately i just had a bloodtest a couple weeks ago so I'll have to wait a few months for my next labwork.
Im trying to find the Hashimotos results but I must have stored the somewhere else as I took them a long time ago(2010.) I just know that i came out negative.

so if it turns out I still dont have Hashimotos what else could be causing the soapy stinging feeling? Do you think theres any link to dry eye & the medications used to regulate the thyroid? (synthroid, levothyroxine?)

[NotADryEye]

NotADryEye

I am looking at the copies of my last few lab reults, I had only been tested recently for the TSH which is normal, but not the others. So I'll ask for a full panel including TPO. Unfortunately i just had a bloodtest a couple weeks ago so I'll have to wait a few months for my next labwork.
Im trying to find the Hashimotos results but I must have stored the somewhere else as I took them a long time ago(2010.) I just know that i came out negative.

so if it turns out I still dont have Hashimotos what else could be causing the soapy stinging feeling? Do you think theres any link to dry eye & the medications used to regulate the thyroid? (synthroid, levothyroxine?)

Can you see bubbles in your tear film?
Soapiness can be caused by bacteria. The bacteria break down into amino acids. The amino acids mixes with the tear film and the combinatiobn turns into soap. You might need a bacteria culture.
I've read that some people with severe dry eye get saponification when the tissue in the eye breaks down. I can't recall where I found that piece of information.
Demodex mites - but you tested negative for those - when the mites die they release bacteria, etc.
If you can't see bubbles but there is still stinging or burning it could be the meibomian glands aren't releasing adequate or good quality meibum.
There are probably other reasons. Best to get evaluated by a doctor.

[chimera]

Ive noticed in the past one or two large bubbles in the lower corner of the inside of my eye lid, when I pull it down. is that what you mean? Is meibum the oil layer? thats what Tseng told me I produce poor oil film & it doesnt cover the surface of my eye enough.

Also ever since Ive been using his lipid ointment I have had a increase in mucus. I know the ointment probably produces its own sticky thick white mucus residue but I also have an increase of these clear fine strings that cling across my eye & make me itch... I always used to have it but it seems worse now.

[NotADryEye]

I sometimes see large bubbles in my eyes and sometimes very small ones. Sometimes the bubbles are in the corners and sometimes they are all over the surface and sometimes just at the lid margins. I suppose bubbles are bubbles and they wash up or are created where ever, just like foam washing up on a beach. It depends so much on the currents, what is in the ocean, the topography, etc.

Yes, meibum is the oil that the meibomium glands produce that makes up the oily layer of the tear film.

What lipd ointment are you using? I've never used anything like that. The strings I sometimes see are in the corners of my eyes, if I pull on the mucous that collects in the corner it comes out as a long string. This stringyness is much less since I've been applying Azasite to my eye lashes at bedtime. Maybe you have a bacteria colony. I've tested positive for staphylococcus epidermidis and have read that long stringy strands are evidence of the bacteria in the eye. But you would know better if the cause is the ointment.

[chimera]

I dont know, its a tube that Dr Tseng gave me that just says lipid ointment. Im supposed to put it on my eyelashes/lid margins. Its feels good & if I put it on 30 min after I put on refresh drops I dont usually have to redrop for another 40 min to an hour(depending on climate & what Im doing with my eyes).

I get all kinds of mucus:

1- a thick goopy yellow mucus that almost looks like pus(I think this is from the lipid ointment)

2- a thick but lighter white mucus I get from the Restasis & Refresh plus

3- a very thin string like clear one, often see this half a minute or later afer I put on refresh...usually runs across horizontally on my eye or vertically & may run all the way out onto the lid margins

4- a combination of 2 & 3

and Im not sure if 3 &4 are from drops or something else....

I also get this like tiny specs/particles of debris? or mucus? Im not sure what it is but they sponteneously appear right in the middle of my eye & are damn near impossible to remove. Even if I put drops on. They cause horrible foreign body sensation. I can jiggle it with my botton lid margin & the spec will move around a bit but never dislodge from its location. Then later on (can be anywhere from a few secnds to an hour) it will disappear, just like that. The drier my eyes are the more likely I will get it & I usually get it 1- 3 times a day.

[NotADryEye]

You have a lot going on. I can imagine how miserable you are.
Sometimes it takes time for treatments to take effect.
I am not familiar with the ointment.
When is your next appointment with Dr. Tseng?

[NotADryEye]

Do you think theres any link to dry eye & the medications used to regulate the thyroid? (synthroid, levothyroxine?)

For about 7 months I was on a low does of Liothyronine, 5mcg 2x per day, along with 50 mcg of Synthroid. I noticed that my eyes would get watery 45 minutes after the afternoon dose of Liothyronine. (Liothyronine is T3. Synthroid is T4, and converts into T3). I asked an endocrinologist about the connection. She didn't think there was one. I'm sure there was. the watering was like clock work. Needless to say, I don't see that endocrinologist any more. And since I stopped the Liothyronine, my eyes don't water in the afternoon any more. They still water periodically, but not exactly 45 minutes after taking something.

You ask a very good question. I wish I knew the answer especially as it relates to the soapiness.

[chimera]

I was asked to call & schedule the appointment 3 mnths after the last one so
probably some time in late May early June.
Im taking a list with questions & ideas i learned from this site :

Has my MGD improved? If yes, why am i still feeling pain? Is there a specialist
or any other dr I can see for the pain?

if not improved :

could you check for
conjuctivochalasis
ocular rosacea
bacterial infection causing pain/soap feeling?

would any of these other treatments be helpful:

manual gland expression by you
doxy, azasite or other drops/meds for rosacea?
prokera
prose

also what are the ingredients in the lipid ointment you gave me and is there a similar ointment I can get OTC?

I dont know if Ill actually get a chance to ask everything though....

[NotADryEye]

Chimera,
You can always call and make an appointment for sooner than three months. Tell the office you're experiencing pain when you make the appointment. If they tell you that you'll just have to wait you might consider contacting Dr. ******. At a minimum, on his website, you can send Dr. ****** a question and I am sure he will answer it. The web address is www.dr******.com . Click on Contact Dr. ******.
Believe me, I know how you are feeling. Please don't give up hope.

[chimera]

oh I know I can get an earlier date. I think i saw him in late march so I plan to see him about a mnth earlier.

if I see ****** it would have to be something Id have to plan long in advance b/c of time/funds issues. Would he really answer questions if I dont have plans to make a appnt with him any time soon?