Sjogrens or something else

[Stacy0w]

I went to the dr (pcp) with my list of symptoms and list of tests and questions. I assumed I'd get the call back saying my thyroid was whacked out and go from there. Well, they called today to say all labs looks really good and the dr is puzzled by my symptoms. Awesome. Story of my life. I haven't received the labs back yet but he was supposed to run the reg stuff and vit/min deficiencies and a full thyroid panel. Irregular period, dry skin, hair loss, fatigue and feeling like my thermometer was on the fritz (too hot or too cold) were my main gripes.  I've seen a lot of people mention sjogrens. Is that a possiblity?  Trying to think outside the box. 

[Gemini]

 

I went to the dr (pcp) with my list of symptoms and list of tests and questions. I assumed I'd get the call back saying my thyroid was whacked out and go from there. Well, they called today to say all labs looks really good and the dr is puzzled by my symptoms. Awesome. Story of my life. I haven't received the labs back yet but he was supposed to run the reg stuff and vit/min deficiencies and a full thyroid panel. Irregular period, dry skin, hair loss, fatigue and feeling like my thermometer was on the fritz (too hot or too cold) were my main gripes.  I've seen a lot of people mention sjogrens. Is that a possiblity?  Trying to think outside the box. 

Hi Stacy........yes, some of those symptoms can occur with Sjogren's but the hallmark is the dry eyes and mouth.  I would wait to get copies of all testing for thyroid as they are hypo-thyroid symptoms also and what some doctors consider normal, just aren't.  Healthy thyroid numbers are different for everyone so don't believe anything they say until you see it in writing.  You can post here if you want and we'll help.  I have both Sjogren's and Hashi's so know a little bit about it all. 

[Stacy0w]

Sigh. Got the labs back. CBC all normal.  Comprehensive metabolic panel the only things that were off were calcium, ca and protein, total. Both were high. I had the stomach bug a few days prior and wisdom teeth out a few weeks before that. They think minor dehydration and my calcium corrected dis normal. Vit d is 59. Highest I'd ever had preceliac was 24 so that's impressive. B12 is 711. No clue how it's that high. Cholesterol stuff all normal. And for thyroid they only ran the TSH. Ugh. We totally talked about running a full panel. Even the possibility of the hashimoto tests. TSH was .942. A year ago it was 2.06 for whatever that's worth. So basically the tests don't tell me anything, correct?  

[Gemini]

Your B12 is good and not too high.  The max usually is around 800 and docs like to see it in the 600's.  Did they do any testing for Sjogren's?  https://www.sjogrens.org/home/about-sjogrens/diagnosis  This is comprehensive info on what they can possibly do to test.  Other than that, having a higher total protein level is common in people with autoimmune disease......mildly higher.

Wish my Vit. D were a 59!  It is around 45 so I switched to a liquid form of D to see if that helps.

Your blood work tells you that you are healing and you have common elevations that can come from AI disease. It would be good for you to have a complete thyroid panel and maybe those antibody levels checked with Sjogren's, the SS-A and SS-B. You should be checked for other AI diseases because you have symptoms.  It might not be the thyroid but you need the tests so you will know.

[Stacy0w]

 

Your B12 is good and not too high.  The max usually is around 800 and docs like to see it in the 600's.  Did they do any testing for Sjogren's?  https://www.sjogrens.org/home/about-sjogrens/diagnosis  This is comprehensive info on what they can possibly do to test.  Other than that, having a higher total protein level is common in people with autoimmune disease......mildly higher.

Wish my Vit. D were a 59!  It is around 45 so I switched to a liquid form of D to see if that helps.

Your blood work tells you that you are healing and you have common elevations that can come from AI disease. It would be good for you to have a complete thyroid panel and maybe those antibody levels checked with Sjogren's, the SS-A and SS-B. You should be checked for other AI diseases because you have symptoms.  It might not be the thyroid but you need the tests so you will know.

He didn't do any autoimmune type testing.  I always have dry eyes, but I'm still able to wear contacts most days. My mouth doesn't feel dry usually, but I've had serious dental issues the past few years. Could just be celiac deficiencies catching up I suppose. My protein was 8.2 where 7.9 was the max for lab range. Not crazy high. 

I read an article about D def. It said to go liquid or liquid gel caps (I take a 5000iu gelcap), take it with some fat at dinner and take a mag supplement before bed. Not sure what of those helped or healing from celiac, but for the first time ever it went up!

its very frustrating to go in to an appt asking all the "right" questions and telling them what labs you'd like and then leave having things not go as suggested. 

[deb-rn]

If you read up on Sjogren's... it's far more than dry mouth and eyes!  I have regular bouts of pleuracy, muscle aches, neuropathies in various places, abnormal fingernails, pain in joints that travels around, inflammation of gums, throat and hard palate, peeling skin, dry lips, thinning hair, plantar fasciitis, bad breath... the list goes on and on!  I had hoped my symptoms would get better after I went gluten-free 2.5yrs ago... but they didn't really.  There is a very high corrolation between Sjogren's and Gluten Sensitivity.  When you have 1 Autoimmune Disease, you can count on more that will rear their ugly heads eventually!  So many Doctors really don't have a clue about any of it.  You just have to do your own research and put it all together!  We're just trying to live a semi-normal life here!  Most people don't get how hard that is each day!

Keep on plugging away at it!

Debbie

[Gemini]

 

If you read up on Sjogren's... it's far more than dry mouth and eyes!  I have regular bouts of pleuracy, muscle aches, neuropathies in various places, abnormal fingernails, pain in joints that travels around, inflammation of gums, throat and hard palate, peeling skin, dry lips, thinning hair, plantar fasciitis, bad breath... the list goes on and on!  I had hoped my symptoms would get better after I went gluten-free 2.5yrs ago... but they didn't really.  There is a very high corrolation between Sjogren's and Gluten Sensitivity.  When you have 1 Autoimmune Disease, you can count on more that will rear their ugly heads eventually!  So many Doctors really don't have a clue about any of it.  You just have to do your own research and put it all together!  We're just trying to live a semi-normal life here!  Most people don't get how hard that is each day!

Keep on plugging away at it!

Debbie

Many people have vastly different symptoms but the hallmarks are the dry eyes and mouth.  I do not have any muscle or joint pain whatsoever but I also exercise hard and that has really helped me feel better.  The gluten-free diet has also done wonders for my symptoms so that convinced me that Sjogren's is tied heavily with gluten exposure. I still have symptoms and it's the dry eye and mouth that are the worst but it has improved significantly with the gluten-free diet.  I was so much worse before I went gluten free.  You are correct in that most doctors have no clue.  They only end up looking for it when you have severe symptoms and then if the blood work comes back negative, they will tell you that you don't have it, which is incorrect.  Antibodies don't always pop the blood work.

[Bichongirl44]

My dentist told me to get checked for Sjogrens as I have  Erosive Oral Lichen Planus (also in Vagina) ... I have Hashimotos, Derm Herpetiformis, Lichen Sclerosus. My mouth

has been very dry and the saliva "feels thick" I have ulcers nearly all the time and my mouth and tongue feels horrid. I watch what I eat ,I  am strictly gluten-free and now can't have any acidic or spicy, and have allergies to egg whites, seafood &  fish.

One doc thought I might have an "overlap syndrome" ...the dentist said that Sjogrens can cause IBS like symptoms......Is this true? as I have to watch my diet carefully I am on low FODMAP diet.... If it is Sjogrens what is the treatment? Its really starting to get me down...the only medication I have been given is Clobetasol ointment

 

 

[Gemini]

It’s usually the dentists that might pick up on a problem before the doctors do.  Sjogren’s really affects the mouth but there are other symptoms too.  I do not know if IBS is one of them because I never looked that far.......I have zero gut issues since going gluten free.  It might be because of overlap of symptoms with many AI diseases.  I think that doctor might be confused because there is no overlap “syndrome”.  Symptoms overlap because many of the diseases share the same symptoms.  This is why it can be so hard to diagnose AI disease.

I would suggest getting screened for Sjogren’s and Lupus because lupus can cause mouth ulcers.......like Sjogren’s and Celiac can.  It is so frustrating, I know!  With your symptoms, that should be a no brainer.

There really is no treatment for Sjogren’s, unfortunately.  Try Biotine mouth wash as it moisturizes the mouth and has a really nice, light minty flavor.  It does not contain alcohol so does not burn.  I use it all the time.  Drink lots of water, which I am sure you do.  I have never tried any of the meds they use for dry mouth because once you have a lot of collateral damage, I don’t see the point.  I went too long before it was figured out and it was me who figured it out and requested testing.  The usual crap for us. I am sorry I cannot be of more help other than to suggest what to test for.  You need to get to the root cause of the mouth ulcers because I went through that for years and it is horrible when your mouth hurts.  Do you have a rheumatologist to ask for these tests?  It’s just blood work. Are your eyes really dry also?

 

[Bichongirl44]

Thanks for your input, Gemini....I am waiting on results for bloood tests for Sjogrens and Bechets ???? and will then see a Rhum. doc if I need to

I seem to have periods of sore , gritty eyes , but at the moment they are OK

I have tried the Biotine, but it contains Xylitol to which I react, so I am just sipping water all day and thru the night..

The only medication I have for the ulcers is Clobetasol, which sometimes helps....I will just have to wait and see what the blood tests say...

[fanfaire2]

On 2/8/2020 at 12:16 AM, Bichongirl44 said:

Thanks for your input, Gemini....I am waiting on results for bloood tests for Sjogrens and Bechets ???? and will then see a Rhum. doc if I need to

I seem to have periods of sore , gritty eyes , but at the moment they are OK

I have tried the Biotine, but it contains Xylitol to which I react, so I am just sipping water all day and thru the night..

The only medication I have for the ulcers is Clobetasol, which sometimes helps....I will just have to wait and see what the blood tests say...

I have Sjogren's, celiac, and a variety of other health problems. Suggestion for the mouth ulcers: "magic" mouthwash. A prescription is needed for it, and you need to find a compounding pharmacy to make it. It contains a numbing agent to help with the mouth pain, and it will help heal the ulcers.

Sjogren's can be a systemic disease. It can cause digestive problems in some people. I have problems all along the digestive tract including gastroparesis and symptoms that resemble IBS. I've worked with a gastroenterologist and a nutrition specialist to get that managed as well as I can.

Sjogren's, if you have it, does not have its own specific treatment, unfortunately. If it is mild, you might be prescribed Plaquenil, an immuno-modulator. Moderate cases like mine get old-school immuno-suppressants usually used for rheumatoid arthritis such as Immuran or methotrexate. Severe cases might require the intravenous stuff you see advertised on TV like Humira or Embrel. Those were also originally designed for rheumatoid arthritis, so they are less effective for Sjogren's, but it's better than nothing. Other medications are pilocarpine and Evoxac, which help your body produce moisture, especially in the mouth. There is also Restasis which is an eye drop.

Autoimmune diseases are weird. You can have more than one at a time, you can have sero-negative Sjogren's where the blood test is negative but the biopsy is positive, or you can have things like Multiple Connective Tissue Disorder which has symptoms of different diseases but not a clear cut diagnosis. Patience and persistence is required.

[Bichongirl44]

Thanks FanFaire2, I have asked about the Magic Mouthwash, but its not allowed here in OZ,....I will wait and see what the blood tests show.....thanks for you advice.

[Bnkk2]

I have hashimoto’s and celiac confirmed. They thought I might have behcet’s but only symptoms I had were the canker sores. After going gluten-free I noticed things getting better except for my canker sores. All my bloodwork at the time was normal except my inflammation levels were slightly elevated. I went through all the normal meds with tons of side effects and decided to do research and found Low Dose Naltrexone. It is a compounded drug with hardly and side effects and has worked wonders for my joint pain and canker sores. I get the sores every once in a while still but they don’t last as long and usually I get them when it’s around my period or if I am sick. I have often wondered if I had Sjogren’s or Lupus but bloodwork has never showed that I did.  I was reading this and thought I might suggest this medication to see if it would help anyone else. Look it up and you can find some studies where they tested this for autoimmune diseases. Just make sure it is the low dose not a high dose because the high dose is used for weaning people off drugs.  Hope this helps.

[cindy426]

My husband has lichen planus in his mouth as well. I don't know what the "magic mouthwash" you are talking about is, but he uses Dexamethasone oral solution 0.5MG/5ML to swish with twice/day (does not swallow) and it has been miraculous! He still occasionally gets an ulcer but not very often. He was able to get the prescription filled at CVS with our previous insurance and now with Medicare so no compounding. I certainly would ask about it to try.

[fanfaire2]

On 2/11/2020 at 9:13 AM, Bnkk2 said:

I have hashimoto’s and celiac confirmed. They thought I might have behcet’s but only symptoms I had were the canker sores. After going gluten-free I noticed things getting better except for my canker sores. All my bloodwork at the time was normal except my inflammation levels were slightly elevated. I went through all the normal meds with tons of side effects and decided to do research and found Low Dose Naltrexone. It is a compounded drug with hardly and side effects and has worked wonders for my joint pain and canker sores. I get the sores every once in a while still but they don’t last as long and usually I get them when it’s around my period or if I am sick. I have often wondered if I had Sjogren’s or Lupus but bloodwork has never showed that I did.  I was reading this and thought I might suggest this medication to see if it would help anyone else. Look it up and you can find some studies where they tested this for autoimmune diseases. Just make sure it is the low dose not a high dose because the high dose is used for weaning people off drugs.  Hope this helps.

Interesting suggestion. I have tried just about everything under the sun except low dose Naltrexone. I will make a note for future reference. It's a real juggling act, isn't it, to try to manage celiac plus multiple other ailments? I spend more time doing things to stay healthy than anything else in my life.

[fanfaire2]

On 2/12/2020 at 8:27 AM, cindy426 said:

My husband has lichen planus in his mouth as well. I don't know what the "magic mouthwash" you are talking about is, but he uses Dexamethasone oral solution 0.5MG/5ML to swish with twice/day (does not swallow) and it has been miraculous! He still occasionally gets an ulcer but not very often. He was able to get the prescription filled at CVS with our previous insurance and now with Medicare so no compounding. I certainly would ask about it to try.

I believe that is a steroid? Probably pretty strong, but I imagine it would work. The stuff I've been prescribed, if I remember right, contained lidocaine, bismuth, and hydrogen peroxide. Here's a Mayo Clinic description of "magic" mouthwash: https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071

[Bichongirl44]

The Magic Mouthwash that you mentioned Dexamethazone is not available in Australia....I have asked both Doc and Pharmacists.....I have read of a homemade recipe containing Tumeric and salt in warm water and will try that..I  am getting my blood tests results on Thurday, so perhaps that will point to something. Thanks to all who are replying, its very helpful.

 

[OregonDonna]

I used the magic mouthwash but have had  better results with a steroid gel. My clinic was always out and I got tired of chasing after it. Got the steroid gel from my ENT doc. Works well. I'm almost 3 years gluten free after Celiac diagnosis and my dry eyes and mouth have gotten much better over time. I still use eye drops twice a day. Be patient. Losing the gluten is a great start. Causes so many inflammation issues and autoimmune.

[Bichongirl44]

Thanks OregonDonna, the thing I don't understand is I have been strictly Gluten free for over 10 yrs, but about every 12 to 18 months, some other auto immune condition pops up! but this erosive LP is the most debilitating....and as I have IBS-D it means I have to cut out some more good foods, eg, tomatoes, citrus, spices....But I will just keep on trying to find what else to try.

[OregonDonna]

4 hours ago, Bichongirl44 said:

Thanks OregonDonna, the thing I don't understand is I have been strictly Gluten free for over 10 yrs, but about every 12 to 18 months, some other auto immune condition pops up! but this erosive LP is the most debilitating....and as I have IBS-D it means I have to cut out some more good foods, eg, tomatoes, citrus, spices....But I will just keep on trying to find what else to try.

Oh, my mistake for thinking you were new to the gluten-free thing. I'm not sure whether they will approve my response by telling you Fluocinonide gel will work well for your OLP. I apply it with a QTip twice a day after brushing my teeth and I can't live without it. I sympathize with your non-ending autoimmune issues as I suffer from many as well. Fibromyalgia, MS and more. So I try to help anyone I can along the way. Sending positive energy out to the universe for you for things that will help you.

[fanfaire2]

On 2/15/2020 at 1:44 AM, Bichongirl44 said:

The Magic Mouthwash that you mentioned Dexamethazone is not available in Australia....I have asked both Doc and Pharmacists.....I have read of a homemade recipe containing Tumeric and salt in warm water and will try that..I  am getting my blood tests results on Thurday, so perhaps that will point to something. Thanks to all who are replying, its very helpful.

 

Do you have available hydrogen peroxide topical solution 3%? It can be used as a mouthwash if you dilute it with an equal amount of water. It works as an oral debriding agent. No xylitol or other questionable ingredients. It's readily available in America; perhaps in Australia too?

[Bichongirl44]

Thanks to you both, OregonDonna and Fanfaire2, I will run them by my dentist ....I'm a bit scared of the Hydrogen peroxide, I must admit, as my mouth hurts sometimes with just drinking water! and a lot of time its raw and bleeding...