OOOPS! There really should be an edit tab, or something...because I was typing away, and looked up and saw above,lol.
Anyway, does anyone here suffer with hypothyroidism? I was diagnosed approximately 5 months ago...am on a medication 'levothyroxine".. (I joined that DS group as well.) But, I'm wondering if there's a connection between the Sjogren's and having this, becasue I've had pancreatitis, severe neuropathy in my legs, and the thyriod being affected is the newest one. It also causes 'brain fog", and now I'm having a double whammy with this, and my cognitive function. I recently had a lipids test which for the 2nd time in 5 months -- all my levels are off, which means I'm headed for heart disease next, if it doesn't get under control.

These are signs ad symptoms of thyroid problems, and I just wondered if anyone else with Sjogren's has experienced this? Thanks for any replies in advance. :)

Many Blessings to you all.

Yes Barbie I too have Hypothyroidism & Sjogren's & CFS. I have the brain fog too! I've been on levothyroxine for over 20 yrs. Just got dx with Sjogren's a year ago. I'm on Plaquenil for that & use eye drops for my dry eyes and mouth wash for the dry mouth.

angellady,
Thanks for the reply. Wow, over 20 years? May I ask how much levothyroxine you're on? I've been at the starter dose of 25 mg. for 3 months or so. But ever since March all my lipid levels are all flagged -out of range (bad cholesterol, and trigycerides), and it can cause the arteries to clog, etc. So I'm getting a bit worried. I feel so anxious, and even anti-anxiety meds aren't doing the job anymore, I wondering if it's also thyroid related too. My Endo told me to take 2 pills every other day for 6 more weeks to see if the levels go down. Have you had any of these problems? I appreciate your reply...I'm trying to educate myself as much as I can. Thanks again.

barbie,
YES
I believe I had the beginnings of thyroid problems at least 12 years before diagnosis of Sjs. I had nodules, a goiter and symptoms, but my bloodwork (TSH etc) always showed normal. Then my thyroid grew larger after my SjS dx. I finally convinced my rheumy to run thyroid anti-body tests. Well, he found out not only was I hypo, but I also had Hashimoto's. I went to an Endo. By then the thyroid and nodules were so large and because I was on the immunosuppressant Cellcept, and it could put me at risk for thyroid cancer, he convinced me I needed a total thyroidectomy. So long story short, I had the thyroidectomy last April and I did have thyroid cancer. My thyroid was the size of a grapefruit when the surgeon removed it. He is the one who told me that thyroid problems and Sjogren's co-exist 30% of the time. Anyway, I'm still hypothyroid because I haven't got my Synthroid dose optimized yet. I went from 100 to 125 to 150 and now I'm at 175 and still feeling symptoms. It's hard to tell whether they are from Sjs or hypo or what because a lot of it overlaps!! My brain is soooo foggy!
Oh, and yes I have had pancreatitis, too. Not chronic, because I think it's under control.
Sorry to hear your lipids are off. Hope you can get that under contol.
Best of luck to you,
Jo

Jo,
Thank you soo very much for your reply. I'm sorry you have it too, but glad to know that I'm not alone, and maybe there's a connectioin. I mean many people talk about not going by their lab results, and going by how they feel....which you probably can relate to. I can't because I was feeling awful from the Sjogren's for the last 4 years, and my Primary dr. sent me to an endocrinologist because a test he performed showed I was hypoglycemic...but that turned out to be wrong, and they found the hypothyroidism. But I am so exhusted all the time, I gained 20 lbs, which was another trigger as to why they tested me for hypo...I was exercising and dieting, and still put on 20 lbs.! It's awful how hard I try to lose, and if I eat 1 thing sweet, I'll gain 2 lbs. I aso have super high anxiety, my meds don't work anymore...I feel so stressed and depressed, but I've got to fight it. I'm not taking plaquenil yet, I know I should have started by now...but I was worried about the side effects...I already have lung issues, and osteosporosis, the list goes on. I'm jsut so tired of this, I'm sorry for sounding negative...I guess I needed to vent a bit., sorry :)

Thanks so much for sharing your information with me...I sure hope your Sjogren's is slowed down with Plaquenil...mine is very agressive, I'm considering starting it very soon. Thanks again.;)

Many Blessings...Take care

Omg, you had pancreatitis too? That's really amazing! I had a severe attack and I know my pancreas was damaged, because the dr. didn't stop me from eating at all (?!) he put me on alow fat diet...I had a fever, etc...and was released with the fever. I had another attack 3 days later, and was admitted to another hospital...released after a few more days. But that was about 15 months ago...and I'm feeling a bit better, but still not able to eat beef, pork, etc.. I'm taking prilosec prn, and feel I'm not really absotbing nutrients properly. I eat very little and can't lose any weight.

I've had thyroid problems for 30 years and had half of it removed about 15 years ago for a goiter. Like you, Barbie, I have wondered if the thyroid issue is related to Sjogren's. I take 100 mg synthroid but I am always wondering if it's enough. My thyroid tests always came back "normal" too and it wasn't until the goiter appeared that anyone would listen to me about fatigue and a terrible cold intolerance. I would get chilled to the point where I shivered so hard my teeth would chatter!

Emilyann:
Thanks for your reply also.... That's so interesting that so many have this condition in combination with Sjogrens. So, I guess the thyroid problem came first, before the Sjogrens with you as well? As I already mentioned...it's hard to tell when your having the thyroid symptoms, while you've already got the Sjogrens, as fatigue, and brain fog, are the same symptomatically...but for me it was the very high lipd tests which triggered my dr.'s attetention. And I noticed I'm freezing in the mornings all the time now, but I may have had this a long time ago...but the SJS was my first diagnosis. I'm happy I'm started the levothyroxine, I just hope it helps with lowering the lipids. Not a big fan of having to ltake statin drugs. :(
Btw, there is a group here on DS for Hypothyroidism, just in case anyone wasn't aware. Thanks agian for all the great replies, and info. Take care.:)

I hope you all have a joyful and pain free holiday!

barbie,
Yes, I had a severe pancreatitis attack before Sjogren's diagnosis. I was hospitalized for 4 days on an IV only and no food. I had the high fever also. Very scary.
I went for a second opinion to a university hospital rheumy because in addition to SjS I have Lupus and RA. He told me that pancreatitis also goes with Sjogren's and the reason makes so much sense. He told me they are taught in med school that pancreatic and salivary gland tissue are exactly alike. When you look at them under the microscope you cannot tell the difference. They also both produce amylase, a digestive enzyme. So if the salivary glands are attacked from Sjogren's then why not the pancreas! After my attack I started Prilosec, too. I have not had a major occurence again.
I have the fatigue, weight gain, too.
Hang in there,
Jo

Thanks Jo...I apprecieate you're telling me about your experience with the pacreatitis. It's not very common, and to have all three.(SJS, panc. and thyroid). Initially I was told I had RA by my GP. Reumy said he was leaning more toward Primary Sjogren's, but said my joints looked very much like I had RA, but the bloodwork, didn't show it. I could be seronegative though.
It's good to know you were properly treated for your pancrreatits, with the IV and no food, etc. That's the way everyone I've ever
spoke to who's had it was treated. I gues he wasn't paying any attention, because they were giving me a full diet, even with the fever. But, yes it's anawful experience to go through.I hope I never have it again...the pain was undescribable.
.I've herd about the salivary glands and the pancreas being identical under a microscope too...it's amazing...Sounds like you had a wonderful Dr. too.
Thanks Jo =)

This is such an intriguing discussion...my lipids have been up in the past few years, along with my blood sugar at "borderline" status.

HI Girls...I too had Hashimoto's(thyroid) then diag. with SJS. However my research shows that any auto immune disorder can attack the thyroid but SJS is a big offender of this.

I had SJS symptoms before the thyroid diag. but didn't know what it was and you know how Docs are about putting; two and two together. It seemed if I gave them more than one symptom, they would just pick out the one they were interested in and run with it.

Barbie I'm taking .088mg of levothroxine now for 6 mths. The Plaquenil I had no side effects with, I think it's given me a bit more of energy. (Just a bit)

I have been taking synthriod it other supplement for hypothyroidism since age 12. I am 67 and after years of symptoms and tests was diagnosed with Sjogrens's last week. Blood work does not show positive for disease but after 20 years of symptoms-12 root canals, every tooth capped, dry bleeding sinuses, severe dry eye, fingers crumbling from arthritis (two fingers fused), constant low grade fever, cracked dry sides of mouth, bouts of severe pain, oh, and the brain fog. Yikes! Yes, I have may have leg neuropathy...it feels like something crawingunder the skin of my lower legs. I forgot tomention this to doctor.
So finally I am starting on low dose steroids with plaquinal to be added later. It took a woman rheumatologist to put it all together. So maybe hypothyroidism and sjs related

Like all these comments...i too have thyrooid issues. I was diagnosed with goiter and finally I am on synthroid. I feel better but not yet totally there. My total cholesterol is great and so is my HDL but my bad cholesterol is sky high. But going down. I take lots of fish oil and eat lots of salmon and almost no meat.
It is sad that the medical establishment is not really addressing how to treat sJogrens. Large reputable centers see it as just dry eyes and mouth. We are all testimony to the fact that it is a life changer. We need better integrated treatment.
Thank you for all the posts. They make me feel like we are not alone.

This thread is blowing me away! Nearly everything you have all written rings a bell for me. I had horrible bleeding, infected sinuses for most of my childhood that went untreated, as did my chronic tonsillitis. Makes me wonder if my body had to work so hard trying to defend itself that it just started attacking all the mucous membranes. Some of my symptoms I've had since childhood, including chronic fatigue and the sinus stuff. I can manage the sinus infections now by taking huge doses of Vitamin C (like Airborne or Emergen C) daily. If I don't take it, I immediately get a sinus infection. I feel like daily healthy living, for me, is a gigantic balancing act of eating the right foods, vitamins, and trying not to get overwhelmed by any particular symptoms - especially the fatigue. If I go even one night without 9 hours of sleep, I suffer. I get lots of derogatory comments from people about going to bed at 9 p.m. but I've learned to not care. Thanks to you all for making me feel less crazy!