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Complicated case of eye, nose&mouth dryness

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  • Complicated case of eye, nose&mouth dryness

    Hi all,

    I've read some of the stories and articles, and I see that I can't relate completely to any of them.
    So I am describing here my complicated case. I have my own (and probably novel) ideas why you can have dry eye, and I will have some questions...
    Here we go.


    It all started in 2002 when I broke my ankle joint. MRI did not ahow it as broken at all, but it was, and it was complicated. It took me 2 years to get diagnosis and get it operated. In this time I had to walk with this leg - mainly because many doctors recommended to do so. Imagine stepping on a nail every step you take - that kind of profound pain happened to me. It was a lot of stress. This (physical) stress caused hormonal problems - I had hyperprolactinemia and because of testosterone (I'm a man) on the low end of the normal range, higher than normal cortisol level (usually twice higher than the normal range). Thyroid hormones were normal.
    The endo I went to did something about prolactin, but she said that nothing can be done with cortisol - I just need to get rid of the stress.
    Easier said than done.
    When the pain in the ankle subsided after the operation in 2004, I started to have many different symptoms. Muscle pain, joint pain, dry eyes, dry throat, dry nose, feeling very, very, very tired - I was falling asleep when walking...

    About half a year ago I discovered the main cause of this - severe vitamin D deficiency. The vitamin D blood test showed below 7 ng/mL (normal range 30 - 55 ng/mL). They did not give the exact result, because it was so low, that it was out of measuring range!
    Vitamin D deficiency causes extreme muscle pain due to myopathy, here is the example,

    Because of this, I still experienced high level of stress and the described hormonal problems.
    Before finding that vitamin D deficiency, I also found that I had vitamin B12 deficiency and thalassemia minor (blood disorder, that drains all your body vitamin supplies, vit. B, B12, D, E including).

    All the vitamin deficiencies were taken care of. There was a problem with vitamin D, as the doctor told me to take only 2000 iu a day. It would take me 5 years to reach the normal range of vitamin D. After some time however I discovered that it is safe to take 10 000 iu or even more if you control the blood calcium level.

    Thanks to the supplementation, everything seems to get back to normal. Muscles do not hurt, joints hurt, but only a little.
    I am not that tired and my condition improves every day.

    But the problem with the hormones is still there. Soon I will start taking Dostinex again for hyperprolactinemia, I am taking phosphatidylserine for cortisol suppresion:

    So the hormonal problems will be taken care of to some extent, however for example phosphatidylserine may not be as effective as I'd like, testosterone may not return to higher end of normal range and so on...

    Now, the problems left are the eye, mouth&nose dryness, and the complications - catching cold because of the dryness every two weeks, which in turn weakens the immune system, and causes recurrent shingles and enables candida overgrowth.

    !!!!!Why my dryness is there.
    1. I think the main cause of the dryness was and is vitamin D deficiency. This applies to eye, mouth&nose - the lacrimal and saliva glands were not nourished properly, and it may take some time before they start working again.

    The impact on eye dryness can be somewhat broader (this is the supposedly new idea ).

    -Firstly vitamin D has immunomodulatory effect - it supresses inflammation. That is exactly the effect of Restasis (as I read on this forum... I don't use it).
    -Secondly vitamin D promotes production of antimicrobial peptide cathelicidin and defensin beta 2, which is a kind of an antibiotic. This allows to fight bacteria without even starting the inflammatory response...

    Some links to support the idea:
    Anti-inflamatory action in many diseases (so why not in eye inflammation), page 9

    Cathelicidin and defensin beta 2:

    2. The second cause is stress & hormonal imbalance. I read a few threads about the stress and eye dryness, but they did not seem to link stress and hormonal response to the stress. This is the case with me...
    I don't think that the stress that I have can be linked with depression. I don't feel that I have anything like that. I would rather say that I have (had) chronic pain problems.

    3. The third cause may be candida. When I started anti-candida diet (no sugar, no yeasted bread), I felt a lot better. Suddenly all my stomach problems disappeared, felt even less tired.

    !!!!!Why my dryness is not there.
    It is rather not the Sjogren syndrome. All anti-bodies tested negative. There was no test for saliva output or eye lacrimal gland output, but those actually might be negative, because foreign body in the eye sometimes causes tears, sometimes not and saliva flows if I remember to massage saliva glands.

    !!!!!What else can I do to get rid of the dryness?
    Here, in Poland, no ophtalmologist knows anything about dry eyes and how to treat this. No wonder, we are quite a few years behind in this matter, as in many other. In reply to question "what can be done about that dry eyes", my doctor said "nothing, you can only cure your other problems, and then the problem will resolve itself". And we already know that the problem may not resolve itself because of inflammation - once there, never gets out without help.
    Restasis is unavailable, as many other things described here.
    I will follow the procedures desribed here (Lid hygiene, Heat treatment, and everything else that is available to me), but they may be not as effective as finding the real cause and getting rid of it. The problem is that I am unable to find a doctor who could help me find the cause...
    I would rather like to get to the bottom of eye dryness, because then probably problems with mouth&nose dryness could be solved - all at once.
    ???So if anyone has any idea, please share...

    *For hormonal imbalance:
    I could try DHEA or testosterone eye drops. This would allow me to find out if the remaing problem is really hormonal balance or not. Unfortunetely these are not available here. ???Where could I get these or how are these made?
    ???Did anybody try to boost testosterone level in some other ways (supplements)?

    *I take one spoon of macadamia oil and one spoon of sea-buckthorn oil, multi-vitamin, resveratrol, vitamin C (10 g a day), vitamin D (10 000 iu a day), probiotics.
    ???Is there anything else worth taking to improve the dry eye conditon?

    !!!!!More detailed dry eye symptoms:
    I have problems with meibomian glands, but sometimes they work properly - this is when I manage to get up in the night at least twice and put some eye drops in. My eyes then become "glued" in the morning, when everything inevitably dries out. Heat treatment should help...

    I also have problems with lacrimal glands - the funny thing is that when I yawn (doesn't matter if in the evening or at morning) the tears suddenly appear in greater quantities. ???What does that mean?

    I hope that someone has similar symptoms to my symptoms, I saw already a thread about mouth and eyes dryness. Maybe there are more people with systemic dryness.
    I'm looking forward to hearing some good answers that explain a lot


  • #2

    You have so many of the symptoms of Sjogren's but tested negative. You may want to have a lip biopsy as well. Sometimes the blood test for auto anti-bodies does not show positive when the biopsy will. The lip biopsy involves removing a small sample of the salivary glands, and then examining them under magnification to discover if they have been infiltrated with white blood cells (immune attack).

    I have Sjogren's----diagnosed last year (I have the anti-bodies). My Vitamin D levels were very low---and I didn't find out until this year. I seem to be much improved since taking supplements, and my Vit D levels are now back in the normal range. Vit D deficiency is pretty common with Sjogren's and some other auto-immune conditions.

    In the USA, you need a prescription to buy testosterone creams, gels, patches, or pills. The "compounding pharmacies" make up any strength needed, if it is not available through drug companies.

    Your case is certainly very complicated, and you are doing a good job researching it for yourself---probably better than most doctors. I don't have any insights about what you wrote---I just don't know anything about cortisol or thalassemia minor and the other things.

    There has to be an online forum somewhere with curious doctors who would be interested in understanding your case; maybe you'll get some more suggestions from the members here.



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