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  • #46
    Originally posted by heyjude0701 View Post
    Who do you go to for that- an endocrinologist? Do you have one you like?
    For hormones you see an endocrinologist. Though they have places that are hormone replacement specialists or something. I don't know anything about them, but I know they are out there and they may have a better understanding of hormone replacement therapy.

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    • #47
      I finally had my appointment with the endocrinologist- it took two months to get an appointment. She sympathized with my dry eye problem and did not try to minimize it, but she said it is too risky for a woman to take testosterone because of the side effects and unknown long term effects. She said maybe God did not intend for post-menopausal women to have high testosterone. Though I would have been more comfortable with a statement that "maybe it is natural or typical for post-menopausal women to have lower testosterone," I followed her "argument" and said that apparently god doesn't want post-menopausal women to drive or read. I didn't want to get into a discussion about mixing religion and medicine!! I told her that I am desperate and need some help, so she suggested I contact Dr David Sullivan at the Schepens Eye Research Institute in Boston. I was impressed that she knew about him. I contacted Dr Sullivan to ask if he had any ongoing clinical trials on testosterone and dry eyes in Boston that I could participate in. He did not answer my question directly, but he did refer me to Dr Mark L. Rosenblatt, an ophthalmologist in the Weill Cornell ophthalmology group in NYC, closer to where I live than Boston, who would be able to provide androgen treatment. I made an appointment with Dr Rosenblatt, the earliest he has available next month, Oct 24. I'll report back here after I see him. Meanwhile, I've been on Restasis for 2 and a half months, and I still don't see any improvement. We had a very humid summer, and I think that helped a bit, but now that it is cool and less humid outside again, the gritty, burning feeling in my eyes is back (along with the photosensitivity and blurry vision that never went away, even with the humidity). I have been doing a warm compress with thermo eyes everyday, in addition to Muro 128 ointment at night and Optive and other drops during the day but I don't notice any improvement.

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      • #48
        Originally posted by heyjude0701 View Post
        She said maybe God did not intend for post-menopausal women to have high testosterone. Though I would have been more comfortable with a statement that "maybe it is natural or typical for post-menopausal women to have lower testosterone," I followed her "argument" and said that apparently god doesn't want post-menopausal women to drive or read.
        You rock! I hope you find relief.

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        • #49
          I saw a doctor at mass eye and ear who works with Dr. Sullivan and he wouldn't give me the testosterone cream. I am a girl and have been told I have low testosterone. Let us know if you have better luck. I even emailed Dr. Sullivan before and he recommended testosterone. Who knows. Go to the apt anyway and let us know if you have better luck.

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          • #50
            Thanks for keeping us posted Jude. My gyno said the same thing about taking testosterone, minus the God part. She said it can be a tricky balancing act and that it is not advised. I will try anything that might help my eyes. Please do keep us posted after your October visit. I am rooting for you! Do you use compresses more than once a day? I must use them three times daily, everyday, or things get bad pretty fast. Also, I've gone on a gluten-free diet and am also watching Rosacea triggers. Chocolate is a big trigger. Cutting out gluten has really helped lessen inflammation. Fingers crossed. Hope you get some help.

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            • #51
              Thanks for your support spmcc, Tanner and LaDiva!

              Tanner, thanks for the heads-up that I could go to the doc that Dr Sullivan recommended and he might not be willing to give me testosterone. I am tiptoeing lightly here, trying not to harm the relationship with my own ophthalmologist over this. He is conservative and not in favor of testosterone as a treatment for dry eyes. I really like him, and he has successfully treated my cataracts, glaucoma and detached retina. I would not want to change doctors, I just want to go to a cornea specialist who is willing to try non-standard treatments for my DES, since my ophth has already tried all the standard treatments.

              La Diva, I only do the compresses once a day; it feels good for the 15 minutes that I have it on, but within a few minutes after, my eyes go right back to being dry and gritty again, with blurry vision and light sensitivity. I suppose I could try it more than once a day and see if it is any better. If I could sit with my eyes closed and the warm pads on them all day that would be even better! What seems to have the most effect on me is the humidity and whether or not the sun is out. My eyes are more comfortable in a dark, damp room, and become uncomfortable when the air is dry, when it is sunny and when there is any breeze. The most helpful aid I have found yet are the moisture chamber polarized sunglasses. I think i am going to have a pair made with my reading prescription so I can wear them in stores when I am shopping. I don't have rosacea or allergies, and my eyes don't get red, so I don't think I'm having any allergic reactions to foods, I think mine is due to direct irritation and insufficient tear production (aqueous and meibomian). I'm glad you found triggers, at least there is something you can avoid.

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              • #52
                Dear Jude-
                God bless you for you're ability to come up with a snappy retort! ( I wish I could do that) I've had 6 IPL treatments for dry eye- finished up in July and will be going back for maintenence appt. Oct 20. Though I continue restasis and systane daily. I could not read or drive for months and of the available stuff, IPL for my eyes has helped the most,. but it takes patience and maintenance treatments.The doctor I'm going to charges 350.00. This is out of pocket. I'm frustrated that some doctors seem to be prescribing testosterone drops or cream and the anecdotal evidence seems really promising while I can't get anyone I've seen to even consider this. Jude, I'll be really interested in what you can tell us. .
                Claire

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                • #53
                  Claire, I'm glad to hear that you are having some success with the IPL treatments. If I can't get testosterone cream, I may consider IPL too. I have already spent so much money on glasses, thermo eyes, eyedrops, etc looking for things that will help, that I am reluctant to lay out so much for IPL treatments, but if I get desperate enough and nothing else is helping, then I will try them. I guess there are no silver bullets, you have to have patience with everything you try. Even with Restasis, people are telling me not to give up on it until I have used it for 6 months. And Restasis is expensive too. It costs me $75/month (and that is with health insurance!). But lately I have been using the same wand for the morning and evening drops instead of throwing it away after each use; this will cut the cost in half.
                  Judy

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                  • #54
                    Oh absolutely, Jude- cap that vial, stick it in the fridge and squeeze every drop out!

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                    • #55
                      Did you try the testosterone cream? Did it make a difference for your MGD?
                      Originally posted by LaDiva View Post
                      I've seen a few responses in other posts from people who have tried the eye cream and think it has had limited results. Would love to hear from everyone who has tried it and the results they have seen. I am interested, with or without a heavy beard! LOL I'll try just about anything.

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                      • #56
                        Doctors who know little about testosterone are going to be reticent to use it, especially with women. However, my belief is that although women have much lower amounts of natural testosterone than men, this doesn't make it any less important to their bodies.

                        It's about the balance between estrogens and testosterone that is important - as is discussed by the Opthamologist in the clip about low testosterone. Doctors don't want to get into trying to rectify low T with their female patients in case they overdo it \get it wrong. This you can understand to an extent. However, it's a bit like saying, too many carrots will make your skin turn orange. To suggest that rubbing a bit of T cream into your eyelids is going to cause you to grow a beard is pretty far-fetched. It's really the stuff of old wives tales.

                        If you flip things around, one of the issues is that estrogens are overwhelming the testosterone in the first place. This is why most people suffer low testosterone. The enzyme that converts testosterone to estrogen (aromatase) runs riot, converting T to E unless you do something to stop the conversion. Aromatase inhibitors are a method of doing this, but not recommended. As an aside, men's hormone therapy forums are crammed with stories about using aromatase inhibitor medication to stop the feminising effects of too much estrogen: for example man-boobs etc.

                        If free (unbound) testosterone is low, there's a high chance your estrogen (estradiol) number will be outside the normal range i.e. too high. But you see, Doctors are all about making sure a women's estrogen level is ok, so there's more chance you are going to get estrogen HRT, before a low testosterone level is addressed at all. That's not to say estrogen balance is not important. It is.

                        See the issue here?

                        If you can't get anyone to help you fix a low testosterone level, then ideally you need to do all you can to balance out the high estrogen load.

                        Supplements like Maca root and DIM can be used for this purpose. They can naturally help balance your estrogen profile.
                        Jamie

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                        • #57
                          Maybe systemic testosterone would be more helpful. I was finally able to get testosterone eyedrops (DHEA 1%), prescribed by Dr Rosenblatt at Weill Cornell in NY and made at the Leiter compounding pharmacy in San Jose. I have been using them for nearly a month now, and they are not helping at all. Also, they are extremely irritating, burn terribly when I put them in and are making my eyelids red and itchy. I am giving up on them, it's not worth waiting months for a possible effect when the side effects are so difficult to live with. Dr Rosenblatt thinks that I might be a good candidate for Prose scleral lenses, so that is what I am going to try next.

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                          • #58
                            Originally posted by jasonsmith View Post
                            I saw on the Doctors show about Testosterone eye cream. And have read research studies on how Testosterone is supposed to help and protect both the Lacrimal glands and meibomian glands.

                            Those who use this treatment, where do you get it at? And how much is it? I believe it is made at compounding pharmacies.

                            I'm interested in trying it since I've known for a while that I've had low testosterone. So, that could be why I've since developed dry eye due to low tear volume.
                            In my experience raising blood level of testosterone is more effective then any drops....

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                            • #59
                              Hi Claire,
                              My advice is to call to Leiter Rx and ask them who is the Doc from your city to proscribe it...

                              Originally posted by bunnyrabbit123 View Post
                              Dear Jude-
                              God bless you for you're ability to come up with a snappy retort! ( I wish I could do that) I've had 6 IPL treatments for dry eye- finished up in July and will be going back for maintenence appt. Oct 20. Though I continue restasis and systane daily. I could not read or drive for months and of the available stuff, IPL for my eyes has helped the most,. but it takes patience and maintenance treatments.The doctor I'm going to charges 350.00. This is out of pocket. I'm frustrated that some doctors seem to be prescribing testosterone drops or cream and the anecdotal evidence seems really promising while I can't get anyone I've seen to even consider this. Jude, I'll be really interested in what you can tell us. .
                              Claire

                              Comment


                              • #60
                                I concur with Dog, DHEA and T drops that have become available are attacking the issue from completely the wrong angle. There's a much better chance of efficacy with increasing systemic blood\saliva levels of key hormones.

                                You give the body the right inputs and let it do the rest.
                                Jamie

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