Scalloped tongue and eye pain

I have been finding such great information here. It is such a relief to find others that know what it's like. I've been made to feel like this has all been in my head and shoved around to rheumatologists, optometrists, ophthalmologists, and most recently neurologists. Never to find a true answer.

Has anyone else suffered from a scalloped tongue? I've had it for many years but over the past year it rarely goes away and can be quite painful.

I also have severe eye pain that doesn't go away. My eyes always hurt and are tired. They often burn and are just uncomfortable 24/7. I was dx with dry eye but was told my tear production is normal. I tried lotemax, punctal plugs, and restasis. Nothing helped at all. I stopped seeking treatment when I was told the last option was an oral antibiotic. I refused and was told there was nothing more that could be offered and I would have to live with it. I haven't been able to wear my contacts in almost two years which is depressing. I used to be very active and miss them very much. Has anyone else experienced this? Eyes don't hurt for no reason.

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I switched from an endo to a holistic doc about 8 months ago. One of the first things he noted on my exam was my scalloped tongue. I had never heard of it let alone know it had any connection to my thyroid - or lack of one. He says that as the hormones are out of balance the tongue swells and as it pushes into the tooth crevasses, it becomes scalloped. Who knew. He said that once the hormones are balanced the tongue swelling will recede. He never mentioned anything about eye pain. It was a choice on the initial screening checklist but since I didn't check it off I guess he didn't feel the need to ask.

TT 4/2009 Pap w/tall cell features
RAI 8/2009

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Many of the doctors I've seen simply had no response like it wasn't a bid deal. My dentist told me it was because of my overbite and my tongue was rubbing against my teeth- he was partially right. I'm confused that more doctors aren't aware of this. If you have ever experienced this you would know that something is wrong. A tongue doesn't just do that for no reason. I will be telling whoever I can to be aware of that. I never want anyone to suffer as much as I have for years on end when your body is clearly screaming that something is wrong, and no- depression medication is not the answer for these problems!

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Only thing I would say is you are at fifth cranial nerve area, or trigeminal nerve. Not sure what would be going on. Did you have a neck dissection or a regular TT?

http://en.wikipedia.org/wiki/Trigeminal_nerve

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My thyroid was never looked at until this summer. I will have a TT in 18 days.

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Those kinds of cranial nerves are real hard to get care. There used to be a fair amount of doctors that specialize in these kinds of things but for the most part in the current era of insurance run medicine these doctors have had to quit and move onto less specialized care.

But at any rate, did they do an MRI just to rule out something in that area? Or some other imaging perhaps

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I had an MRI a few weeks ago to rule out any issues with my pituitary. Everything came back fine. I would think if there's was something wrong it would have shown up. I'm hoping things will improve after the surgery. I imagine I will be trading off one set of problems for another. I'm just hoping that is the scenario and doesn't turn into adding to the list. I have other auto immune issues also so it will always be something. Patience has never been my strongpoint. :)

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I also went to an integrative med dr after my TT and my Endo's weren't helping. I was still feeling horrible after two years, although all my labs came back normal. The first thing this dr asked was for me to stick out my tongue. He explained when you are hypo your tongue will swell and push against your teeth causing the scalloped edges. Now that I'm finally not hypo, my tongue is no longer scalloped. I too had lots of eye pain, and sudden blurred vision. The only thing eye dr found was I had very dry eyes. When I was at the integrative med dr he ran 90 blood tests. Most for hormones, vitamins, chronic virus (things the regular drs never check). He said I did have 7 chronic viruses. One of those was cytomeglavirus which often affects lungs & eyes. While I was on the high power anti-viral my eyes seemed to get worse. He said the meds will do that. Now I'm done with the 6 months dose, my eyes are much better. I also was sent to neurologists and many others and everything was "normal". I don't know why most drs will not think outside the box when normal protocol doesn't find the answer.

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Ashforia, I feel bad that you still had problems after everything you've gone through. I am concerned the same may happen to me. Thanks for the explanation of what they looked for. If I continue to have problems, at least I will know what to ask for.

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Yes, scalloped tongue! It's a weird horrible side affect, glad to know it's not just me and that I need to investigate this more.

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hi. i get burning once in a while plus dry eye when in a/c. r

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asflorla,

Just curious, what antiviral did you take and did it help at all? How is your fatigue and other symptoms now?

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I was on Valcyte 450mg. I feel much, much better. Many of my symptoms are completely gone. I seem to tire easy if I do too much. But now I can actually leave the house and do things. I feel as good as I did before thyca. I'm not sure what worked. I was on anti-biotics, anti-viral, steroids, hormones, lots of vitamins & nutrients, iron, and baking soda (body was to acidic). I'm glad I kept searching until I found a dr who actually tried to solve my symptoms, instead of shrugging and saying your "labs are normal". Problem is they don't do extensive enough labs.

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I still have my thyroid, complete with benign 5 cm tumor. My bloodwork is normal, tsh low normal. I have the scalloped tongue and dry eye. The tongue doesn't bother me but I'm used to weird mouth issues because I have huge tori (bony growths in mouth).

As far as the dry eye, when it flares up, I put artificial tear drops in every hour or so. I also was wearing an eye patch (the bandaid kind) at night for the one eye and that seemed to help a lot, I think by keeping the eye closed.

I also make a conscious effort to blink a lot especially when working on the computer.

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Thanks, ashforla, about the information regarding cytomeglavirus... I have something wrong with my eyes since 5 weeks, and doctor is now in opinion that I just have dry eyes which has got worse during holiday mid July - 5 days seaside, sun, swimming, spas, wind, without sunglasses (stupid of me!)... Now I put for nights and once in the afternoon cream, eye drops (gel) every hour or sometimes every half an hour... It could take several months the situation to get better... Perhaps I ask for another opinion... All examinations has so far made by general doctors, need perhaps the opinion of eye specialist...

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Liisa64 you definitely should go to an opthalmologist for an opinion. Probably need to go to integrative med or holistic dr that will test for chronic viruses, if eye dr doesn't help.

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Ashforla - Did you ask your doc to run that big battery of tests or was it all his/her idea? Aside from the viruses & I'm assuming normal hormones, what other tests did he get? Did you have any problem with your insurance covering such a big lab bite?

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Hi Gr8shetland, no I didn't ask dr to run the tests, it was his idea. My first battery cost over $5000, and it was all paid for by insurance. Two months later he order another $2700 worth of blood tests to drill down on some of the results from the first, and again I paid nothing.

Here are some main things he tested: Iron, Ferritin, Arsenic, Mercury, Lead, Lipid panel, Cardio CRP, Homocysteine, Metabolic panel, Creatinine, Carbon Dioxide, Vitamin D, Immunoglobulin A, G, M, TSH, T4 Free, Thyroid Peroxidase, Thyroglobulin Antibodies, Aldosterone, Testosterone, Cortisol, FreeT3, Reverse T3, Pregnenolone, Lipoprotein, Fibrinogen Activity, CBC Panel, Vit B12, Folate, DHEA, FSH, Insulin, LH, Progesterone, Estradiol, Sex Hormone Binding Globulin, Candida Albicans. (many other tests under these main headings)

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Hey y'all, do the eye drops and gels help with blurry vision due to dry eye? My vision has worsened since my TT in June and RAI the end of July. I need to see an opthomologist about my eyes because they are driving me crazy! Some days they feel heavy and tired. Thanks for the information about the scalloped tongue. Sometimes mine gets sore just on one side, but it does not burn. Thanks for any info you can give me on the blurry vision.

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Eye drops do help my blurry vision. Eye dr said blurry vision was caused by dry eye. Vision is 20/20 so nothing to correct with glasses. I have scar tissue on my eyes (prev eye surgery) so I need to put the gel drops in periodically through the day, even if I don't feel I need it. Try eye drops first, might not need to go to eye doc. I like the gel drops, regular ones didn't help.

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Ashforla, Thanks for the lab list. I'll give it to my doc and see if he thinks I should have some of them. He's already done a few of them - the various thyroid tests, Vit D., etc.

He wants me to visit a tanning salon for the Vit D and because when he took my off of the Methotrexate, I started getting psoriasis "spots" all over my legs. I'm not too keen on that one.

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