underlying cause....endocrine problem?

[eyecarumba]

Hi all..

I'm glad to have found this forum. I've been suffering from dry eyes (or something similar??) for about 3 years now. When it strated, I happened to be taking hydrocortisone for adrenal fatigue. I had started at 12 mg, then ramped up to about 20. It didn't seem to make me feel any better anyway, and I was afraid of wht was going on with my eyes, so I tapered back off.

Unfortunately, my eye problem has persisted. An opthalmologist was sure it was an allergy to staph, and prescribed a steroid/antibiotic eye drop, which seemd to help, but I kept getting what I was calling conjunctivits. I've had at least 40 or 50 bouts of this, in alternating eyes. Whatever it is, it's AWFUL and incapacitates me for at least a half a day when i get it. I went thru 2 bottles of drops, and I still am getting these "attacks."

I've read some posts referring to hormone imbalances, and am sure that there is some sort of hormone problem at the root of my dry eyes and "flare-ups." I'm planning on seeing a naturopathic doctor in a few weeks and will ask for complete hormone testing.

Anyone with any success using this approach? I'm particulary interested in adrenal and pituitary problems....

Thanks!
-m

[nycdryeyegirl]

Hi all..

I'm glad to have found this forum. I've been suffering from dry eyes (or something similar??) for about 3 years now. When it strated, I happened to be taking hydrocortisone for adrenal fatigue. I had started at 12 mg, then ramped up to about 20. It didn't seem to make me feel any better anyway, and I was afraid of wht was going on with my eyes, so I tapered back off.

Unfortunately, my eye problem has persisted. An opthalmologist was sure it was an allergy to staph, and prescribed a steroid/antibiotic eye drop, which seemd to help, but I kept getting what I was calling conjunctivits. I've had at least 40 or 50 bouts of this, in alternating eyes. Whatever it is, it's AWFUL and incapacitates me for at least a half a day when i get it. I went thru 2 bottles of drops, and I still am getting these "attacks."

I've read some posts referring to hormone imbalances, and am sure that there is some sort of hormone problem at the root of my dry eyes and "flare-ups." I'm planning on seeing a naturopathic doctor in a few weeks and will ask for complete hormone testing.

Anyone with any success using this approach? I'm particulary interested in adrenal and pituitary problems....

Thanks!
-m

Hi,

Are you under the care of a endocrinologist? Perhaps you might want to get a referral to this type of doctor who specializes in treating disorders of the endocrine system (e.g.diabetes, hyper and hypothyroidism, etc). Certain types of thyroid diseases (graves disease, for example) can affect the eyes by causing dry eye symptoms.

If your problem is endocrinology-related, a specialist in this field of practice should be able to diagnose and treat an underlying condition that's causing your dry eye symptoms.

I hope this information has been helpful to you.

Pam

[Rebecca Petris]

I kept getting what I was calling conjunctivits. I've had at least 40 or 50 bouts of this, in alternating eyes. Whatever it is, it's AWFUL and incapacitates me for at least a half a day when i get it. I went thru 2 bottles of drops, and I still am getting these "attacks."

Could you please describe in more detail what these attacks are? When do they occur, how do your eyes feel while they're happening (specifically e.g. burning? stabbing? watering? aching? etc), how do they look (red?) And what kind of drops did you go through 2 bottles of?

[eyecarumba]

Well, at first I was just waking up with dry, red eyes. But then I started getting what I thought was some form of conjunctivitis on top of the dry eyes. It felt like getting a cold in the eye, like when I was a kid. I can feel it "brewing" (overnight, usually) and then wake up with full-blown watering, redness etc. There's also pain, of course, and runny nose on the affected side. These attacks are periodic (like every 7 to 10 days or so, and random as to which eye (nver both at same time). I originally was thinking it might be viral from the way it was acting, but now not sure of anything.

I should also say that in addition to the redness in the white part of the eye, there is usually a white semicircular or spotty splotch, just inside the outside edge of the iris. I assume this is some sort of ulcer? It goes away as the eye heals, then I'll get it again with the next flare-up.

I sent photos of this to an eye doctor online, and he suggested possible ocular rosacea (but I have no other signs of that) or some autoimmune disease, which might make sense...(?)

The drops were a combo steroid/antibiotic (neomycin and polymyxin with dexamethasone).

Thanks so much for your input...

-m

[liz56]

Hi, M.

Have you asked your doctor about recurrent corneal erosions (RCE)? You may want to read about them and one underlying cause that makes them stubborn to get rid of (anterior basement membrane dystrophy, ABMD, aka epithelial basement membrane dystrophy, map-dot-fingerprint dystrophy, or it is also called Cogan's dystrophy, but it's all the same thing!).

We have a list of threads dedicated to the issue and labeled as such on the board. The redness, pain, tearing, and recurrence of the problem after or during sleep sure sounds familiar to me. I suffer from ABMD and had a terrible year of RCE's.

Just thought I'd suggest you ask your doctor.

Best wishes,
Liz

[eyecarumba]

Hi,

Are you under the care of a endocrinologist? Perhaps you might want to get a referral to this type of doctor who specializes in treating disorders of the endocrine system (e.g.diabetes, hyper and hypothyroidism, etc). Certain types of thyroid diseases (graves disease, for example) can affect the eyes by causing dry eye symptoms.

If your problem is endocrinology-related, a specialist in this field of practice should be able to diagnose and treat an underlying condition that's causing your dry eye symptoms.

I hope this information has been helpful to you.

Pam

Thanks for the suggestion, but I think there are VERY few good endo's out there, especially in my area. After careful consideration, and some trial and error with useless "doctors," I'm going to try a naturopathic md who uses a lot of hormone testing and understands heavy metal poisoning etc.

I should say that I did have a cortisol saliva test a few years ago, which showed weak adrenals and low DHEA, low SIgA, etc (that's why my doctor at that time put me one cortisol).

Just in case anyone recognizes any patterns here, I also have what looks like pernicious anemia (but recent testing couldn't explain it) and low platelet count. Also, possible borderline diabetes insipidus/nocturia, which is another water balance issue.

A lot of this stuff points (for me, anyway) to possible endocrine (pituitary ...aldosterone??) problems... But, of course, I could be totally wrong (ha).

Thanks again..
-m

[calli66]

I noticed that one of your symptoms was low platelet count. I also have this, as well as low white cell count. In the process of figuring out what was causing this, I had tests for auto-immune disease, and I was positive for Sjogren's Syndrome and Hashimoto's Thyroiditis. Having a low platelet and anemia sometimes "go along with" Sjogren's, as well as other auto-immune conditions.

My only other symptom at that time (2 years ago) was severe dry eyes.

Have you had any tests for ANA (anti-nuclear anti-bodies) yet? If not, please consider doing so. I'm not sure a Naturopath could diagnosis this---even regular doctors don't generally test for auto-immune and some have never heard of Sjogren's, even though it's the most common AI disease after Rheumatoid Arthritis. Also get a test for Vitamin D deficiency, which for some reason is common for Sjogren's and can really affect your whole body, since it acts as a regulatory hormone and immune modulator.

I have been on some medication for the Sjogren's and thyroid conditions, and take extra Vit D, and now my eyes are stable---still dry, but feeling much better.

Calli

[eyecarumba]

Hi and thanks for the reply...

My "doctor" did run a platelet antibody test a month ago, which was negative. He had no other ideas as to why my platelet count was slowly dropping. Next step would have been a bone marrow test, but I can't afford it.

I haven't had much luck trying to get this guy to run the tests I want, like a hashi's test, for ex. They say my thyroid is fine, even though my TSH has jumped around somewhat. But I think my problem is more adrenals, as I'm underweight, and have a lot of other symptoms of adrenal insufficiency. Low platelet count is often associated with weak adrenals, according to Dr. Rind (drrind.com).

I'd like to have vitamin D checked, but am currently taking 5000 iu's, so I don't suspect a deficiency, although it's possible.

Thanks again..

-m

[calli66]

The test for anti-platelet antibodies is specific to platelets only, so it's better to get the ANA test if you can. That test is quite UN-specific, but if positive, it is a good indicator that you might have an auto-immune disease of some kind.

My doctor first sent me to a hemotologist for the blood count problem. He told me that he would check the ANA first which could explain the low counts. He also drew blood and examined it under a microscope to see if the cells had a normal shape and size. He said he would only do the bone marrow test if he couldn't find any other reason for the low counts, since that test is invasive and painful. As part of his original set of blood tests, he also did ones for Rheumatoid Factor, C-reactive proteins, sed rate. These can show the level of inflammation in the body.

It would be worth your time to see a Hemotologist, a Rheumatologist, and an Endocrinologist at some point.

Doesn't sound like Vit D is your problem since you take a higher dose supplement.

Hope you can get some answers soon.

Calli

[ringo]

Hi eyecarumba,

may be this is off the mark, but by the way you describe your symptoms, it sounds to me like you might be suffering from adenovirus infection. I think that you can get an accurate diagnosis by actually taking a sample from your eye surface/secretions and running tests on it for potential bacterial(ex. chlamydial, staphylococcal,etc.), viral, fungal, etc. infections.Note that th doctor might have to run specific tests to detect specific organisms, for ex. i think that adenovirus and chlamydia require separate specific tests to be detected.
also a differential diagnosis could be allergic conjuctivitis, that gets flares from certain allergens you get exposed to.
the dryness of the eye could be an additional problem or the result of another underlying condition, like the ones i mentioned above.
In any case, you should do tests to rule out infection, and you did not mention whether your doctor actually did those tests before he prescribed the antibiotic/steroid drop. Does he see any corneal erosions on the surface of your eyes?

[Rebecca Petris]

I second Liz' suggestion of checking out the RCE possibility. I know a lot of people who did not get these correctly diagnosed for a long time. Often the surface heals so quickly that there's not enough for the doctor to look at by the time you see them and so they have to have the right experience plus get a really detailed history from you.

I understand about the cold-in-the-eye feeling by the way. I've been struggling with some issues in my left eye and when it hits, the whole left side of my head hurts and almost starts feeling kind of flu-ey.

[eyecarumba]

The test for anti-platelet antibodies is specific to platelets only, so it's better to get the ANA test if you can. That test is quite UN-specific, but if positive, it is a good indicator that you might have an auto-immune disease of some kind.

My doctor first sent me to a hemotologist for the blood count problem. He told me that he would check the ANA first which could explain the low counts. He also drew blood and examined it under a microscope to see if the cells had a normal shape and size. He said he would only do the bone marrow test if he couldn't find any other reason for the low counts, since that test is invasive and painful. As part of his original set of blood tests, he also did ones for Rheumatoid Factor, C-reactive proteins, sed rate. These can show the level of inflammation in the body.

It would be worth your time to see a Hemotologist, a Rheumatologist, and an Endocrinologist at some point.

Doesn't sound like Vit D is your problem since you take a higher dose supplement.

Hope you can get some answers soon.

Calli

For what it's worth, the doc did run a sed rate on me, which was negative. I'm not sure if that rules out much, if anything...

Thanks,
-m

[eyecarumba]

Hi eyecarumba,

may be this is off the mark, but by the way you describe your symptoms, it sounds to me like you might be suffering from adenovirus infection. I think that you can get an accurate diagnosis by actually taking a sample from your eye surface/secretions and running tests on it for potential bacterial(ex. chlamydial, staphylococcal,etc.), viral, fungal, etc. infections.Note that th doctor might have to run specific tests to detect specific organisms, for ex. i think that adenovirus and chlamydia require separate specific tests to be detected.
also a differential diagnosis could be allergic conjuctivitis, that gets flares from certain allergens you get exposed to.
the dryness of the eye could be an additional problem or the result of another underlying condition, like the ones i mentioned above.
In any case, you should do tests to rule out infection, and you did not mention whether your doctor actually did those tests before he prescribed the antibiotic/steroid drop. Does he see any corneal erosions on the surface of your eyes?

No, the eye doc didn't run any tests. She was sure it was a staph allergy, even though I questioned her. I suggested the underlying cause must be related to the hydrocortisone I had been on, but she had no knowledge of any endocrine stuff affecting the eyes.

As much as I thought the flare-ups might be a virus, I'm not sure what to make of the fact that, in the last 4 days, I've been ok (since starting to use the petroleum gel eye ointmant in the eyes before bed each night)....??

Could dry eye (or RCE's) mimic a virus?

I'lll continue using the gel, as awful as it is, and see what happens...

Thanks,
-m

[eyecarumba]

I second Liz' suggestion of checking out the RCE possibility. I know a lot of people who did not get these correctly diagnosed for a long time. Often the surface heals so quickly that there's not enough for the doctor to look at by the time you see them and so they have to have the right experience plus get a really detailed history from you.

I understand about the cold-in-the-eye feeling by the way. I've been struggling with some issues in my left eye and when it hits, the whole left side of my head hurts and almost starts feeling kind of flu-ey.

You never get it in your right eye? Mine hit both eyes, but neever both at same time. Do you ever get white spots in the iris? Would you know what that is? Is that an ulcer? They always go away as the flare-up subsides. I have photos if anyone wants to see......

Thanks,
-m

[ringo]

The white spots that you can actually see on your iris and seem to go away with the flare up subsiding do not sound like erosions to me at all. That is not like RCE look like, as I have had severe RCE and never experienced white spots on my iris.
I suggest you show this photos to a doctor-- and try another doctor as soon as you have your next flare up, who will put more effort into diagnosing your problem, run tests to rule out infection, check for corneal erosions, measure the dryness/ inflammation in your eyes, etc. Unless you get diagnosed by a doctor and objective tests, we can keep on guessing here what is wrong, and never arrive at a solution for you.
Anyhow, do not wait for it to resolve on its own, or try to treat it on your own. You need to get the problem properly diagnosed before you can make use of a good advice on treatment.