Blepharitis and/or Sjogren's and/or Hypothyroid? What do you think?

[BlueJay]

Hi All,

First post. I've tried to use bullet points to keep it short. Thanks in advance for any advice that you may have.

I'm trying to decide what to do next. I'm looking for a diagnosis but so far I feel the doctors are focusing on the symptoms instead of trying to understand the root cause of the problem.
Example: Ophthalmologist says "You have blepharitis." I say "Could I have Sjogren's?" He says: "Yes but it doesn't matter, I'd still tell you to use a hot compress and eye drops."



My summary:
- ~30 year old male
- Healthy lifestyle
- In the past, I never had a problem with dry eyes. I'd work long hours in front of a computer with no problem. My eyes would water excessively (tears running down face) when eating spicy foods or when doing activities outside in the cold.
- Around 6-8 weeks ago started getting dry eyes and they have been getting progressively worse since.
- Generally gets worse as the day goes on but sometimes I wake up with dry eyes as well.
- I now have much lower tear volume when eating spicy foods, etc.
- I am getting some dry mouth but I think that could also just be stress related (this is stressing me out)
- Main complaint is stinging eyes.
- In the past year I've also had a period of fatigue, a period of bad hand eczema and some intermittent eczema on my ear.
- In cold conditions (snow, etc.) I tend to have more issues with cold fingers/toes than others around me.
- One of my parents has an autoimmune disease
- Strong family history of thyroid (primarily hypothyroid). Sibling, parent and grandparent.

Tests/Treatment so far:
- Fairly recent blood tests show TSH: 4.2 (reference range 0.38 to 5.5) and T4 Free: 14 (reference range 10.5 - 20). Doctors have indicated that is all within range and does not warrant any further consideration.
- I was given a prescription for Patanol drops (anti-histamine) to rule out the possibility that this is caused by allergies. Drops did not fix the problem.
- Optometrist confirmed that my eyes are dry and that I had some blepharitis.
- Ophthalmologist also diagnosed me with blepharitis.
- No testing done for Sjogren's (no ANA test run.)
- I've started using eyelid wash and a hot compress with some improvement but I still don't know if I am treating the root problem.
- I have tried many over the counter eye drops (perservative free artificial tears.)

Current status of diagnosis:
- I've reached the end of the process. My case was escalated to an ophthalmologist and he told me to use a hot compress and eye drops. No further tests or appointments are planned.

My main questions:
After six weeks of dry eyes and using every over the counter eye drop in existence, I am not at all surprised that I have some inflammation of my eyelids!
I am concerned that there may be a more important underlying situation (subclinical hypothyroidism or Sjogren's) that is being ignored and that the blepharitis is just a symptom or complication of the real problem.


My main questions:
Shooting from the hip...if you were to hazard a guess, is this: Blepharitis and/or Sjogren's and/or Hypothyroid?
Could it be "just" blepharitis?
If it is Sjogren's, is it important to get a diagnosis or will my treatment basically be the same?
What are the chances that my thyroid is to blame?

What next steps should I ask for? Should I try to get an ANA test? Should I fight for a referral to an endocrinologist? Should I just use the hot compress and over the counter eye drops for a few weeks to see what happens?

Thanks again for any thoughts you may have.

[Jenn1]

Hi BlueJ,

I have mgd and bleph too. I was on accutane so thats to blame for the mgd and bleph, but recently I have had my thyroid levels checked and developed slight eye protrusion so now am being referred to an endocrinologist and thyroid eye disease specialist. I suggest you go to your gp and get a full thyroid blood panel done and antibodies and get it rechecked every few months, even if they say 'normal', it may be on the high or low end and you can still have thyroid eye disease (TED) issues with no thyroid or normal thyroid levels. Also see an eye specialist as dry eyes can be related to thyroid problems.

This is all new to me so am only able to tell you bits that I know about. If TED is suspected then dont be surprised if the docs dont do much as most agree to just let the disease run its natural course and 'burn out', then see if any treatments should be given. The TED can last from 3 months to 3 years, its a waiting game, but the patient needs to be monitored carefully and they do scans, especially with eye protrusion to rule out other things and see whats happening. Some doctors may prescribe lubricating drops and others steroids, occular radiation isnt good for the eyes, unless its an extreme case, but most TED cases are mild and surgery to put the eyes back is only for the rare extreme cases. TED can occur in Hypo patients and is less common, but mainly associated with hyper patients. Some can develop the TED years before, after or during thyroid problems or with no problems at all.

Hope this helps a bit, and others will drop by to correct anything or add more info etc.

Some links for you:

http://www.kellogg.umich.edu/thyroid/faq.html


http://webeye.ophth.uiowa.edu/dept/D...ves/graves.htm


http://www.thyroidboards.com/index.php


http://www.gdatf.org/


http://www.thyroidhelp.org/forums/forum.php?


http://www.tedct.co.uk/index.html


You can find some support groups locally on the net too.

[Jenn1]

Not sure about the sjorgens, but I too was being told its just bleph and mgd and that I am to blame for not doing enough to keep inflammation down, except.... if it wasnt for the slight eye protrusion, which my opth missed......... i would still be left wondering why my eyes are so bad. Now I know its likely TED, even if its with or without the thyroid problems. Its all rather complicated at first and some docs will argue normal results mean no thyroid problems, whilst others will argue if other signs are there then normal may mean a problem regardless, and some may say eye issues are only with hyper patients, but some may say hypo patients can also be affected, but its more rare as you will read in the above links (or may be because at some point the hypo patients were hyper..) ....so best to keep going back to the doc for answers or referrals.

Also, I forgot to mention that thyroid eye disease (TED) is a separate disease from the thyroid hyper or hypo disease and so runs its own course and treating the thyroid levels does not automatically help stop or relieve the TED symptoms because the TED has to run its own course and 'burn out' by itself. And during thyroid removal or radioactive iodine treatment, the eye disease can actually become worse at first due to the changes. But the good news is that once the disease has 'burnt out', then hopefully for most its not likely to come back.

But for overall health it is important to get thyroid levels under control and then managed well and stabilised for overall general health and well being. I hope this helps others who may find themselves struggling with TED as it can be a long and lonely process.

[MaryVa61]

I've had very similar experiences and questions and can relate! Doctors just don't seem to communicate well and I assume it's that, in part, they think we already know things that we do not know.

One doctor finally explained to me that even if my eye problem was from Sjogren's, there is not a difference in treatment of eye symptoms. There is rx treatment possible for the dry mouth of Sjogren's though, and the joint pain, just not the eyes. So most ophthalmologists don't make an effort to diagnose it. If you have severe joint pain and dry mouth, talk to a dentist and rheumatologist and they may take more of an interest. But, since it isn't curable, and can be hard to diagnose, those guys may or may not make much effort either.

And the problem of subcinical thyroid disorder is another issue. I found out that after years of being told my thyroid tests were "normal", they were really borderline. And since I had an eye disease associated with thyroid disorder I think they should have told me that. But since they don't treat borderline thyroid dysfunction they didn't see the point. It's always good to ask for copies of your labs. Then if you want to try some natural methods of improving your thyroid health, like looking at your diet or supplements, you have that opportunity. Or you can consult an integrative medicine doctor who may be willing to treat. But in my case, it would not have gotten rid of my SLK eye disorder. SLK treatment is the same regardless, and it can take many years before it goes away on it's own. In my case, around 15 years. I suspect my SLK would have improved sooner if one of the many doctors I consulted had figured out that chemical allergies were keeping my eyes irritated for all those years. That was my missing link.

I think it makes sense for you to see an endo if you have other clear-cut symptoms of thyroid dysfunction other than with your eyes. Same with seeing a rheumatologist, makes sense if you have other classic symptoms of autoimmune disease. Otherwise, these docs are highly unlikely to treat you. You may consider some alternative type of doc like a naturopath, osteopath, integrative medicine doctor, etc. They may be willing to help you figure out what is causing the problem since they are more likely to start with the symptoms and then brainstorm rather than doing a mental checklist of disorders in their heads, looking at test results, finding no obvious cause and giving up immediately.

Just my thoughts. Can't say my advice will help you, unfortunately. Good luck with your search.

Mary

[Scout]

Hi Blue Jay,

I am not sure how the health service works in Canada, but a referral to an endocrinologist would be my recommendation.

Most primary care doctors (GPs) will be fine with "within normal range" test results of the TSH. But test results closer to 1.0 are the ideal, from my understanding. Your test results seem borderline and some patients do experience symptoms at that level, even though it is technically "within normal range."

The most common cause of hypothyroidism is Hashimoto's Thyroiditis. It is an autoimmune disease that is so slowly acting that some patients have symptoms for years before they have a TSH that registers abnormal. Primary care doctors can miss it because many patients experience the symptoms before the test results are out of normal range.

Ask your doctor for a referral to an endocrinologist who has experience in thyroid disease. Then let the endo know all the symptoms you are experiencing.

Hopefully, you will get a diagnosis and you will be able go from there.

Scout

[libralady]

Hi Blue Jay I understand your frustrations and have long believed that many health problems are probably caused by one disease or condtion and that doctors often just treat individual symptoms. Hypothyroidism being a good example having so many and varied symptoms. I have been hypothyroid for nearly 20 years. No saying that your problems are related to this but you do mention a family history. Do you have any Diabetes, rheumatoid arthritis, pernicious anaemia in the family? These are also autoimmune diseases. Do you have any other problems tiredness, weight gain, dry skin. cold intolerance etc (look up Hypothryoid site for complete list of symptoms). You might decide to ask for a thryoid function test but be aware that you can be within the test range but still be hypothryoid. It will probably turn out that your dry eyes has nothing to do with this but you did ask about the connection. I suffer from blepharitis/dry eyes worse over last 4 years, plus various other health problems. I hope this is of some help. Any other questions please ask.

[libralady]

Blue Jay I missed the bit about your thryoid function test my apologies. I'm not a thryoid expert but a TSH of 4.2 seemed high. I know that they have recently reduced the range with an upper limit of around 3. However if you don't have any other symptoms maybe it is ok for you. Please read up on this on Hypothryoidism site, try Mary Shoman. There is still a lot of confusion and disagreement regarding the ranges. I only know this because of being hypothyroid for many years. There are people out there feeling ill and not diagnosed or undertreated. Would be interested to hear back from you.
ps some labs are still using old ranges.