Not Sure If I Have SS - But Feels Like It

[Anna]

I am not sure what is going on with my body.  I know I am pre-menopausal. I have hypothyroidism and Hashimotos.  Earlier in October I got a sore throat. Thought it would go away and prayed that it wouldn't worsen like everything other time I catch something.  When I say worsen I mean like I get a cold and my co-workers get a cold - I am out 4 days - they are out one. It's not because I have fever, or a raging bacterial infection or a really really bad cold - I get physically drained and my cold takes much longer to clear up.  This applies to the flu, chest colds etc.  This has been going on for past seven years.  I feel worn down.  I went to get my sleep checked - I have Sleep Apnea and I am overweight.  I have been trying to use the C-PAP machine and I had been seeing a nutritionist and working out but weight just isn't coming off.

I went to new internist earlier this summer - who really does care. He put me through tons of blood work and said that my pituitary gland wasn't functioning right and my immune system was shot and that my thyroid level was off. He also thought I could have Lyme Disease.  He wanted me to start taking hydrocortisone - I don;t do well on steroids.  It seemed like i was suppose to be on it long term - even scarier.  I told him of my concern and wanted more testing but he said the only way to fix my immune system was hydrocortisone. So I took my lab work and went to YALE.  Yale endocrinologist said that everything was fine with - don't take the hydrocortisone. My thyroid level was fine.  I was healthier than I thought and that I was a victim of too much blood work. I have been sick on and off with cold this whole summer and thought that maybe I should get my tonsils taken out. ENT said no - everything was fine and it was too Head at my age of 47. OK.

Speed forward to four-five weeks ago - I get my sore throat. I am thinking it may get worse and thinking that I may cause it to get worse.  Don't go to Dr.  Think it'll take care of itself. One weeks goes by - sore throat really bad.  I had old antibiotics from an earlier course this year, I start taking those.  Another week goes by - sore throat still there - I am dragging - I miss a day of work - go to Dr. (not the one who thought I had Lyme's) but a new internist. She says looks like a bacterial infection - prescribes Z-Pak. Lose the prescription and rather than calling her I decide to keep taking the antibiotics I had.  Start feeling better - weekend comes I think I am fine.

Monday - Oct 26 - Sore throat is back and my neck glands are swelling up.  I am really dragging.
Tues - Sore throat REALLY BAD - I go back to the Dr, who said that I had Lyme.  He says it's viral and think I have Lyme's and wants to do more testing. No pills
Tues Eve - try to eat and thought I was going to die.  My glands are huge and I don't have any saliva and I can't swallow.  Go to ER.  Stupid PA says I have STREP.  I say no I don't ... I have had strep and it doesn't feel like it. Go home, keep sipping water - sleep for couple of hours. Keep taking Tylenol - I am allergic to aspirin, Advil etc.. Stay up rest of night due to pain and intense dry mouth. I look up on the internet and think that I have a blocked salivary gland.
Wed - Stay home from work. Go to Dentist - driving and road bumps make the pain worse. Dentist takes x-rays and says teeth are fine no blocked salivary glands. I look like I have the worst case of mumps.
Go to new ENT. He thinks it's bacterial and viral infection. Prescribes new antibiotics and blood work. Spend rest of day and night miserable - can't eat anything. Hurts too much. Hoarse voice - can talk with my teeth clenched.
Thursday Morning - try to eat 2 tsp of jello - too painful.  I am mad and call the ENT and demand that if doesn't know what's going on with me - I want another doctor and ask that they order a cat scan. He orders the Cat Scan.
Friday - get cat scan and see him for results and he says my salivary glands are huge - DAH and that I don't have a bacterial or viral infection.  He wants me to continue the antibiotics and he orders more blood test because he and radiologist think that it may be autoimmune related. Testing includes SS, ANA etc - not sure of all that he tested for. I have now missed three days of work.
Over this week - the gland selling has decreased by 75% and I can eat. Pain has greatly decreased but not much saliva. I feel like I am living in the desert. My skin is dry, my mouth is Super Dry and my nose is dry and my eyes are dry. 
Saw ENT today and he said blood work looked good - he notes that glands are still swollen. Wants me to come back in a week or two if swelling doesn't go away and three if it does. 
I tell my husband and son of test results and they call me a hypochondriac.  Couldn't sleep last night due to dry mouth and can't tonight.  I am sucking  on a candy right.  It doesn't like hurt thankfully like last week but my mouth is so dry. Did I mention my lips - they are so dry.  Since Friday last week, I have been using all the Biotene Dy Mouth products and Eye drops. I have to take a water bottle where ever I go.  I am at wits end.  I am sick of being fatigued, I am sick of being sick and I am tired of doctors. 

I made an appt with a Rhuemy - not sure what to expect - not sure if I should be going to her.  I am really scared this is in my head.  I have been overly fatigued etc .. but never this much in pain and never a dry mouth.   Before getting this sore throat I would wake up with a really dry mouth and one morning I drooled and I was so surprised.  I have mornings where I wake up so stiff and take Tylenol and thought that it was just aging or hormones. Headaches .. I have dry eyes and thought it was because of my computer monitor.  List goes on.  I am really at the end of the rope.  I want someone to say - this is what is happening to your body.  I can deal with the rest.  I just hate feeling so blah and the rest of the world thinking that I am "embellishing."  I need help

[Seeker]

Wow Anna you sure are being ran through the ringer.  A lot of what you are going through can be caused by Sjogren's.  But Sjogren's may not be the primary problem.  Sjogren's comes in two forms primary and secondary.  With Secondary Sjogren's you could have other primary problems such as Hashimotos or Lymes Disease.  Hopfully your Rheumy will be able to shed some light on what is happening to you.  Also ask your doctor about being tested for Celiac Disease.  It's often missed by physicians.  With the amount of problems you are having, being check for Celiac maybe a prudent decision. 

Also check out the information you can glean on this forum.  You will find much information that can help you be an informed advocate for your health.  Being an advocate for your health is something we all here have learned to be.  Anyway you will find that when ever you need a sympathetic ear or just want to vent your flustrations, this is the place to do it.  Keep us informed on how things are going.

Welcome to our family
Seeker

[Patze]

Hi Anna,

Let me also welcome you to the SJS World!  Please do peruse the board as there are a ton of topics here that you might just find interesting.  And let's not even mention the wonderful members here either!  

Seeker is right, you have been through the ringer!  I sure can understand your frustration as most of us have gone through situations and some have had to wait a decade or more to be diagnosed.  

You mention that you have Hashimoto's, and are you on any meds for it?  Yeah, got to love Hashimoto's!  I don't know about you, but it drives me nuts as I can't seem to loose my weight either, ugh!  

I'm sorry about your swollen glands and your very sore throat, that must just be driving you insane!  Hang in there, and don't let the folks who think that you are "embellishing" get you down, it's tough, but you can do it!

Good luck with the rheumy, and I'll keep my fingers crossed that she'll be able to help you!  

Come often, look around, and if you can't find an answer, please do ask as there is usually someone about.

Take care and please do keep us updated, okay?

Patze

[Scottietottie]

Hi Anna 

Welcome to Sjogren's world. Do you ever keep your own records as far as your thyroid is concerned? I also have hashimotos and although a 'normal' range for TSH is 0.5 - 5, I feel ill if my TSH is above 2. My endocrinologist has told my GP to keep my TSH below 2. I mention this because I always get a sore throat if my thyroid is 'on a rampage'. Mt thyroid has caused me to feel iller, on many occasion, than anything else. Losing weight when one has an underactive thyroid, even when medicated, does seem to be really difficult.

I'm sorry your family are labelling you 'hypochondriac'. That's sooo unfair. I would have thought the swollen glands would prove that wrong for a start!

I hope you find the site useful.

Take care - Scottie 

[Anna]

Thank you for all your supportive comments. I am sorry to have vented but I am so frustrated.  This site and everyone's comments have been very helpful.  If it wasn't for this site, I wouldn't have applied heat to my neck, or known about all the Biotene products and known how to manage my dry mouth.  It's very validating to know others have same struggles and experiences with Doctors. I really felt alone and really thought that I was a difficult patient. 

As far as Hashimotos - I am on levoxyl for it.  Three endocrinologists here in CT have said my levels are fine except for the internist who thinks that I have Lyme.  He is the only one who has paid attention to my T3 levels. Others have totally dismissed gauging T3 levels. So I am a bit confused.  When all this started I was thinking it was my Thyroid.  I am cold - a lot- cold feet etc and of course tired and dark circles around eyes.  I like the internist who seems to really care but he scares me a bit because he wanted to me to take this human growth(?) shots at a $50 a pop and he said that it would reset my hypothalamus.  I think he means well but I react to every med or am allergic to numerous.  Plus I am confused about my symptoms and suggestions from this internist.  He said that I wasn't producing enough cortisol needed for a healthy immune system. Also blood work showed signs of inflammation in my body. 

I was also tested for Celiac Sept 2008. Gastro said no but said  I had IBS and a stomach bacteria that causes ulcers - H Pylori. This new internist said that everyone has H Pylori and taking the antibiotics for it isn't good.  I went to Dietitian and changed from eating white bread and rice to more whole grains, beans and lentils. I have changed diet but need keep working at it.  Try to eat red meat only once a week - fish/shrimp at least three or , chicken rest of the time.   I did read here that someone cut out all grains and felt better.  I think I'll do same. 

I am really appalled by our medical system and managed health care.  15 minute visits and lack of knowledge on doctor's parts. I had a great endocrinologist/internist in Houston.  It was one stop for me in Houston - it was so nice being treated by one doc.I have a lot of allergies to meds and antibiotics and she knew how my body worked. Up here in CT - I see all these Doctors with great degrees but not a lot of common sense or curiosity.  I do like my current ENT. I like my internist but he scares me a bit. He has the greatest bedside manner though.

Perhaps this just a virus.  I appreciate your listening and am very grateful for this site.  I feel for all those who have symptoms worse than mine.  You all inspire me!

[JannaLee]

Anna,

I don't think it's just a virus.

Janna

[navydad]

me either

[ohiolady]

Anna,

I'm with Janna, I don't think it is a virus.  When I first came down with Sjogrens, I kept hoping I'd get better and get back to normal.  It took me a good six months to finally accept what I had.  I do not have positive bloodwork and refused the lip biopsy.  I do have Hashimotos antibodies.  I have severe dryness that is made bearable by Restasis and Evoxac.  My GI system is shot from the Sjogrens.  I struggle with it almost every day.  A good start is to get your symptoms treated.  If you read the boards, you'll find a boat load of information.

Don't give up and I hope you have some relief soon.

Anna

[Scottietottie]

Hi Anna 

I'm not medical but I'm afraid I don't believe that everyone has H-pylori. If they do - why is it that most docs prescribe antibiotics to rid us of them? My understanding is that they are the bacteria which can cause stomach ulcers. I've certainly taken antibiotics after being dxd with them, although part of the problem I was suffering was actually due to a hiatal hernia. I would ask for a second opinion if I were you.

Take care - Scottie 

[Patze]

Hi Anna,

I don't think it's a virus either.

I sure know what you mean about endo's not looking at T3, just the TSH, and have been battling them for years over it.  I finally found a doctor that is willing to work with me trying to find something other than the T4 only protocol.  Okay, off of my thyroid soapbox (five years and counting and it still riles me up!  ).

I know what you mean about the medical system, and I sure hope that they can fix it or at least make it work a bit better for all. 

Hang in there and take care -

Patze

[~elizabeth~]

As far as Hashimotos - I am on levoxyl for it.  Three endocrinologists here in CT have said my levels are fine except for the internist who thinks that I have Lyme.  He is the only one who has paid attention to my T3 levels. Others have totally dismissed gauging T3 levels. So I am a bit confused.  When all this started I was thinking it was my Thyroid.  I am cold - a lot- cold feet etc and of course tired and dark circles around eyes.

I'm not sure how useful T3 levels are. After years of messing around with having only TSH and being told it was fine, I commissioned private TSH, FT4 and FT3 tests. They were useful in showing that I was actually overdosing on T4 (125 mcg), taking me over the normal range for FT4. T3 was only mid-range on that dose. Reducing my dose to 112 brought FT4 back within range, and FT3 actually went up a little. I felt better, but only because I was no longer suffering symptoms of thyroxine overdose (frequent urination, burning urethra, even worse diarrhoea/weight loss). It did nothing for the fatigue, coldness, aching, dryness. I've started adding 5 mcg of T3, which has helped with energy levels, 'brain fog', but again not the other problems. Both of the endocrinologists I've consulted with have thought that the dryness/fatigue/aching symptoms that remained after thyroid replacement were unlikely to be related to thyroid issues, and that I should pursue them with rheumatology (though they didn't suggest Sjogren's). I feel the battle to get prescribed T3 has been something of a distraction from following up more likely causes of the health problems I was suffering.  

Sorry you don't have a supportive family. Mine are all natural health freaks, with a firm belief that all disease can be overcome with natural diet etc. When I told my mother I had a thyroid problem, she said it was my own fault for not eating properly or taking the right supplements. I'm sure she has SjS, but she tends to rationalise everything in terms of 'allergies', and always finds some environmental factor to account for swellings or irritations.

[Anna]

Thank you for sharing your experiences with SJS and hypothyroidism. I finally had a talk with my husband and requested that he and my son respect what I am going through right now. I think a lot of their actions and words come from not understanding.  When I first experienced the swollen glands, pain and dry mouth, I thought it was related to my teeth or a blocked salivary gland and that it would be taken care of immediately and I would feel better rather quickly. 

That's not the case.  I hadn't ever really heard of SJS until I started looking at my symptoms online.  My husband has become a little more understanding.  He went out this evening and bought water for me. I have well water and I don't want to take any chances even though it doesn't seem to be effecting anyone in the family.  When he saw that I had drunk over 15/16 glasses of water in one day - I think he understood.  My mouth is still so dry even though it felt like it was a little more hydrated today.  My tongue feels thick and a bit raw.  I am using the oral gels but I wish the goopy stuff would last longer. 

I am going to keep reading the boards.  I am going to look further into the thyroid hormone testing.  I am counting down until I see the the Rhuematologist.  Nov 16th is the big day.  I'm sure there will be more tests etc.... I wish could wake up and feel "normal" again.  Had the strangest experience today, I felt like my knee was buckling under me.  Weird. 

Thank you so much!  I am so glad to have heard from you - it's a prayer answered.  I don't think anyone who hasn't dealt with some of these symptoms could really understand what it feels like to have your body at war with itself.  Please take care of yourselves.  You are all angels. 

[Patze]

Hang in there Anna, and I hope that you feel better soon!  And good luck with the rheumy; I'll keep the old fingers crossed that he works out for you!

Take care -

Patze