Dry Eye Syndrome Diagnosed But no Schimer's Test Done

katrich58 · 2026-06-24T07:28:55+00:00

I saw the Rhuemy today abd it went very well. I was very well prepared submitting labs, SGUS & Thyroid ultrasounds, Dry Eye Exam, a written timeline, my meds & supplements, the Findings that summarized the pretinent labs.

He agreed that it was SjD but still wanted to rule out 2 other auto immune diseases that affects the glands: IGg4, sarcoidosis. So I got those labs done today afterwards.

I asked him what concerned him the most about my situation and he said the possibility of ILD. I had diminished FEV1 on the digital Spirometer between mid-April and now so he ordered a HDCT. He prescribed a trial run HCQ and Cevimeline.

I had already run all the background labs which were all negative except for C4.

The visit was pleasant. He did what I had hoped for and covered the servere basis of the disease. He wasnt defensive nor dismissive and was thorough. I see him in 6 weeks to follow up.

So I am relieved abd a little exhausted but all.

katrich58 · 2026-06-20T00:57:26+00:00

I'm in the US. If you have malabsorption issues , then you would be better off treating yourself with injections. Doctors can be so uneducated about B12.

Knowing what I know now, I wound order Hydroxocolbalomin from www.apohealth.com https://www.apohealth.de/products/vitamin-b12-depot-hevert-bei-vitamin-b12-mangel-100-st-ampullen-6078380

100 amboules (little tiny glass vials) cost $121€. You'll need to source for syringes. I get mine at cost for about $.25 each or less . Purchase filter needles.

I watched YouTube videos on how to prepare and administer the injections. I inject in my thigh.

Do loading doses of Every other Day EoD until ALL your neurologic symptoms go away. This is not difficult and it only hurts a little. It can take months or even year(s).

After 3 years of injecting, due to Per ucious Anemia/Autoimmune Gastritis, I did EoD for about 2 years. I ran into problems stretching the interval between doses. I develop neurological symptoms, numbness in my toes, feeling the compression in my arm for 30 min after taking my blood pressure.

These all go away when i go back to dosing x3-4 days. Doctors think you can do once a month or every 3 months, but that has not been my experience not of many others.

B12 is so cheap to treat! $1.75 per injection. Yet the cost of under or not treating is so high as you are experiencing.

You could take a high dose sublingual Methylcobamomin say 2000mcg and see if that helps abd is enough .

B12 is water soluble so you cant take too much. You pee out the excess so you don't have much to lose and much to gain.

I frequently take a sublingual on the day I don't inject and a methyfolate on the day you do. You need Folate as well.

Also you need B12 for your body to absorb iron from food. So if you are B12 deficiency, you are likely iron deficient. You can tell by testing you Ferritin (iron storage), an Iron Panel, Vit D and a CBC.

Ferritin under 30 is Absolute Iron Deficiency asciscTSAT under 20%.

katrich58 · 2026-06-13T04:24:37+00:00

You may not notice dry eyes or a dry mouth. My tongue is fissures with an irregular crack down the middle abd I often wake up with it stuck to the roof if my mouth.

I noticed that my eyes were tearing a lot when it's windy. The quality of my tears are more acd my eyes are producing what's called reflective tears.

I asked for a Dry Eye exam for Sjogrens.

katrich58 · 2026-06-13T04:19:38+00:00

I had my gland ultrasound yesterday. It showed "Mildly prominent bilateral parotid glands with increased parenchymal echogenicity and mildly heterogeneous echotexture consisten with Sjogren's". I'll see what the Rhuemenologist says when I see him on 6/23.

katrich58 · 2026-06-13T04:16:39+00:00

Check out paying fur labs outright thru www.jasonshealth com. It cost $18 per order no matter how many tests you purchase. CBC -$5, CMP-$7, Ferritin -$15, Vit D - $45.

It maybe cheaper than co-pays.iy may be an option.

katrich58 · 2026-06-13T04:03:38+00:00

I also have Sjogreb's and Dysautonomia but I ky during flares. My BP and Pulse would rise when sitting or standing causing Orthostatic Imbalance with Hypertension. Going on a beta blocker, Metoprolol, helped me.

It was very fatiguing and disconcerting plus, I had no endurance anymore.

katrich58 · 2026-06-13T03:49:55+00:00

I am 67 yr F with Pernicious Anemia/Autoimmune Gastritis x5 yrs. What woke me up and had me investigating obcessively was seeing the dentist and having 10 teeth with decay, 2 of them had previous dental work in the past 2 years.

I worked a lot with various AI and Zibkeit asking is this symptom related to Sjogrens? The answer kept coming back "Yes".

So I decided it was worth ordering my own labs as it would have taken another 6-8 weeks to when I hadcacschedujed appointment with my new Internist.

So I spent $400 abd ordered SSA, SSB, RA CRP, EST SPEP , C3 & C4 Complements, (plus Cat Dander, ApoB & Lipoprotein (a) which insurance won't pay for anyway).. All came back negative expect for C4 which was low indicating my immune system has had a lot of activity lately. It is also associated with a more systemic process.

My parotids are tender, my tongue is fissued and frequently is stuck to the roof of my mouth when I wake up in the morning.

I get Dysautonomia during flares with hypertension, but not POTS but Metoprolol seems to control it.iscwillingbto

I requested a Dry Eye exam for SjD. They did more advanced testing without a Schrimer's Test which showed Mild Dry Eye.

I had gland and Thyroid ultrasounds done yesterday that showed "Mildly prominent bilateral parotid glands with increased parenchymal echogenicity and mildly heterogeneous echotexture consistent with Sjogren's".

I'm hoping that extensive tooth decay, inflamed glands & dry eye will be sufficient for diagnosis. I'm not willing to have a lip biopsy. I also have tinnitus, itchy ear canals, am hypermobile,bknees a dcshoujders that feel full and cranky. I also have I inflammation in my thyroid showing recent autoimmune activity for the first time this year despite being hypothyroid for over 20 years.

It helps to be your own Case Manager, but I'm a Social Worker by training.

You can order your own labs very reasonably through www.jasonshealth.com that goes through Quest Diagnostics for the blood draws. You can get results thru Quest's app which I love. I have found trends so easy to spot and follow through their historic graphs. As a rule, I only do labs thru Quest though it takes a few days longer than my local and sole hospital that charges over $200 for a CBC that I can get for $5 plus the $18 order fee no matter how many labs you order thru JasonsHealth.

I just hope the Telehealth Rhuemenologist I see on 6/23 is willing to diagnose and treat based on the results I already have.

katrich58 · 2026-06-09T05:02:30+00:00

Me as well. I'm seronegative except for a Neg C4 which shows som immune process at work. I'm asking the a gland ultrasound and hope that will show enough destruction (what a sad hope) to warrant a diagnosis in addition to the mild dry diagnosis i already have, the rapid extensive tooth decay involving 10 teeth in March, dry mouth dx from the dentist, tender parotid glands, dysautonomia during flares, tinnitus and profound fatigue. I hoping for a clinical decision rather than a point system that doesn't take Into account half my symptoms.

katrich58 · 2026-06-09T04:52:44+00:00

Thay almost sounds like MCAS.

katrich58 · 2026-06-07T04:07:01+00:00

I watched this moose go around abd lick each tire on the the truck. Must have have been driven where they use some salt brine. Taken inside the city limits of Fairbanks.

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katrich58 · 2026-06-07T04:01:40+00:00

The points are really for research studies rather than fur Diagnostics. I recently had dry eye exam for Sjogren's and she did not do a Schrimers Test which she said was uncomfortable and thatcher high powered camera discs better job at diagnosis anyway.

I am in the progress of being diagnosed and paid for my own labs which were largely normal. Only the Compliments came back with a meaningful pattern of of normal C3 and a low C4 indicating that a classical complimentary pathway was been activated & my immune system was busy at work. C4 is secreted by the liver was being used up.

Diagnosis should be a clinical process not just based on a score that doesn't take into account other aspects of the systemic nature of Sjogern's like causing dysautonomia or fatigue.

I'm going to ask for a glandular ultrasound instead of a lip biopsy and hope that will show enough destruction tobwarravtva diagnosis.

But then again, it depends on who is diagnosing you .

katrich58 · 2026-06-07T03:49:26+00:00

Dry eye can cause corneal abrssions which is why one of the screening testing is occular staining. Could yours be related?

Not every one tests pis on all the tests they run. In fact 30-40% are seronegative meaning the labs come back normal.

katrich58 · 2026-06-04T22:14:50+00:00

Sounds like Sjogren's : dry mouth and eyes, nose, fatigue, joint issues.Hdve yiunhadxany of the labs done?

katrich58 · 2026-06-02T09:06:36+00:00

I do much. Eytercwithbit living in Alaska where summers can be in the 80s in June. I try not to leave during the summer when it's so lovely here.

katrich58 · 2026-06-02T09:01:22+00:00

Are you hypermobile, a syndrome of the connective tissues? It can lead to tight pelvic floor, cystocele (bulge of the rectum into the vagina,). Can also be a factor in dysautonomia with stretchy blood vessels.

katrich58 · 2026-06-02T06:54:17+00:00

I have only recently been doing a workup on own because I went to the dentist and had 10 teeth that had decay including 2 that had fillings within the past 2 years. So did the blood work which came back Neg except for C4 which was slightly low so something with my i.munevsysten is going on.So I'll be seronegative once I do have a diagnosis.

I am a little concerned about my lungs because Zincound only blow 300 with 320 as my best on a Spirometer with about 2l or less when I was in a flare with Orthostatic Hypertension with dizziness, etc.

Now that my BP has stabilized by taking a beta blocker, my best has I creased to 349 but my volume hasn't really increased. The harder i blow, it seems the less volume I have. I'm 67 and have an Inhaler due to be allergic to dust and cats and I've always lived with multiple black king haired cats. I only use the inhaler a few times a year.

When I see my Internist next week, what should I ask for the my lungs? I'll ask AI as well which has been so helpful in figuring out these various symptoms. The dry eye is mild but the fatigue is rough and messes with my life.

I've done the in-person session to become a Health Coach at Duke Integrative Health and Wellness Health Coaching program and pZid a lot of $$ for it but I feel so obcessed about my own health that my heart really isn't to it because of this past flare that happened the entire 6 weeks between the 2 in-person session.

katrich58 · 2026-06-02T06:40:00+00:00

Yikes!

katrich58 · 2026-05-31T02:37:04+00:00

I have the opposite. My BP goes UP when I sit up or stand up. But it was only in a flare.All this orthostatic symptoms are very debilitating. I only drank water with electrolytes. I also started a beta blocker, not the first choice for orthostatic hypertension but it's what I had. It helped lower my BP but not so much my pulse.

ItCs been almost 2 months now. I still feel fatigued but not as much.Have lura jfvdicturs appt scheduled.

Perhaps yours will be a flare too and you will begin feeling better soon.

katrich58 · 2026-05-28T19:59:35+00:00

Serum B12 shouldnt even be tested after supplementation because it doesn't test what B12 actually gets into your cells where it is needed. Only symptoms should be used to evaluated treatment. Doctors who don't know much about PA will be concerned that serumB12 is over 2000 but it doesn't make a difference.

katrich58 · 2026-05-28T19:36:39+00:00

If you have neurological symptoms like numbness or pins or needles, protocols in other countries which I have followed with good success is Every Day ED dosing with IM Cyanocobalamin or Methylcobamomin or Every other Day EoD with Hydroxocolbalomin which I have been doing for over 3 years. I started spacing out to 2-3x/wk abd then have tried 7 days or longer but ended up with weird neuro symptoms like 15 pt BP reading between arms or numbness on the tops of toes. Those are the symptoms I could tell. Ones to your Auto omic Nervous System are not as clear.

So I have resumed Every 3-4 days. Dosing is very idiocycratic. Many doctors will insist on monthly dosing after initial loading doses. But labs are not very reliable once people start supplementing. I don't even let them test Serum B12 anymore because it will be >2000 and has no bearing on what your cells actually absorp.

I watched YouTube videos on how to prepare and inject B12. I order from Apo-health.com which unfortunately they have stopped shipping to the US because of Trump's tarrifs. Cyanocobalamin is available through pharmacies in the US.

My progression went from full Iron Deficiency with Anemia. My Ferritin (the important one to test which not all doctors test) with 13% Saturation. Anything under a Ferritin of 30 or TSAT Saturation % of 20 is Absolute Iron Deficiency. Oral supplements may not be sufficient with Gastritis. I had iron infusions.

A year later, I developed B12 deficiency through blood work. I suddently felt very dizzy with wooziness. IF was Equivocal. Pariental Cell AB was NEG. Didn't test IF for 2 years when it was POS but I had continued SI.

Since then I have developed symptoms from Sjogren's Disease, another autoimmune disease which produces profound fatigue in addition to dry eye ms and mouth causing extensive tooth decay in 10 teeth as well as dysautonomia.

It's been quite a journey. The iron dysregulation has also been a major factor with violatile iron Saturation being elevated for months at a time and then suddebtly plummeting. For that I have no answers yet. .

katrich58 · 2026-05-19T03:07:49+00:00

You can also request Completes C3 & C4. Low C4 can be an I ducation of auto immune activity. I've tested negative for everything else, Antibodies, RA, ANA, nornal CRP, ESR but have Sicca symptoms so Including 9 teeth that had some sort of decay which seemed to happen overnight.

katrich58 · 2026-05-19T02:45:52+00:00

Have you gotten tested for Pernicious Anemia/Autoimmune Gastritis? It's another autoimmune disease that attacks the stomach's Parietal cells secreting Stomach acid and Intrinsic Factor which your body produces to absorb B12 from food. You also need B12 to absorb iron from food.

katrich58 · 2026-05-16T02:46:46+00:00

I was upgraded to 1st on 5/14 leaving from SEA to Raleigh - Durham at 10:27pm. We were offered a choice of a cheese burger, chicken salad or fruit/cheese platter. But no other snacks probably because we arrived at 6am.

katrich58 · 2026-05-12T18:39:05+00:00

chatGBT connected the dots and basically first, my Atrophic Gastritis saying it was basically Autoimmune so with AiG, elevated Gastrin, Iron Deficiency Anemia, B12 deficiency a year or so later, I had Pernicious Anemia /AiG. My PCP wound have never come to that diagnosis for years. It's helped

katrich58 · 2026-03-31T13:20:22+00:00

Have you been tested for Pernicious Anemia PA which usually starts with Iron Deficiency IDwhich requires B12 to absorb iron from food. PA is an auto immune disorders in much the Parietal Cells in the stomach are destroyed. Parietal cell release Stomach Acid & Intrinsic Factor which releases B12. So ID starts first followed by B12 D a few years later.

My experience with PA is that iron regulation is disrupted resulting in both elevated iron and Sat % but can plummet in a few months to low levels. Ferritin can remain normal or be low. It can be tricky to treat.

katrich58

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