I am new and was diagnosed in October 2014 with Sjogren's A and B. I suffered for 11 years before receiving my diagnosis. I am on Plaquenil and Pilocarpine; I believe I am in a "flare." My hair is falling out in clumps, I'm depressed, and overwhelmed. This has been going on for about 90 days and has progressively gotten worse.
I'm not experiencing too much aching, but a bit of fatigue and lethargy. I am also Hypothyroid (Hashimoto's is in remission), and my Dr. lowered my T4/T3 compounded medication a couple of months ago. Maybe this is the cause. I also overdid sugar for awhile and thought maybe my blood glucose was out of whack.
I go to my Primary Care Dr. tomorrow and think I need to take a few days off work. I've been very stressed due to work lately. I know I am rambling, but the bottom line is I'm scared and just need some support. Thanks for listening.
Hi Judy, my name is Sonya, and I’m a nurse. I have SS, and I also had Hashimoto’s. I ended up having my thyroid removed because of my Hashimoto’s. It sounds like your thyroid could be playing a part in your symptoms. I even went hyperthyroid when I had Hashimoto’s, and I swear to you that I thought I was going to die. My hair was falling out, and I was a nervous wreck. So, I believe it has to be related to your thyroid or your a Sjogrens. Sometimes it’s hard to know the difference without thyroid lab work.
It really helps having people to talk to that are going through what you are as well. It’s hard having an invisible chronic illness, such as Sjogrens. You can tell someone how horrible you feel, but you look fine. Find people, like myself, who know what you are going through; and whom are willing to be a support person for you. I was diagnosed in 2012, and I too had this for many years prior to my actual diagnosis. Three years later, I can say I have learned a lot, and been through a lot. I’m in a better place with it, but I still have my flares and bad days. You WILL learn to adapt, and you WILL learn a way to survive with this illness. Sending you hugs!!
Thank you Sonya for your thoughtful reply! I think you may be right. My Dr. lowered my T4/T3 meds last visit to a lower dose. I have never been in the "range" and have always done better when my TSH is high. I think this may be the culprit, too. I have been really stressed at work (Pharmaceutical Sales) and started plummeting a few weeks ago. My hair is one of the features that I have no issue with and am grateful for. So the loss has been scary. I feel like the added stress has affected me. I have felt well since starting the Plaquenil. I exercise a lot (spin, pilates) and am able to function at a pretty high level. This incredible sadness really freaked me out. I do go to my Dr. tomorrow and she is the one who RX's my hormone meds.
I really, really appreciate you taking the time to reply to me. I am home in bed today :-)
Kayrn said:
Hi Judy, my name is Sonya, and I'm a nurse. I have SS, and I also had Hashimoto's. I ended up having my thyroid removed because of my Hashimoto's. It sounds like your thyroid could be playing a part in your symptoms. I even went hyperthyroid when I had Hashimoto's, and I swear to you that I thought I was going to die. My hair was falling out, and I was a nervous wreck. So, I believe it has to be related to your thyroid or your a Sjogrens. Sometimes it's hard to know the difference without thyroid lab work.
It really helps having people to talk to that are going through what you are as well. It's hard having an invisible chronic illness, such as Sjogrens. You can tell someone how horrible you feel, but you look fine. Find people, like myself, who know what you are going through; and whom are willing to be a support person for you. I was diagnosed in 2012, but I too had this for many years prior to my actual diagnosis. Three years later, I can say I have learned a lot, and been through a lot. I'm in a better place with it, but I still have my flares and bad days. You WILL learn to adapt, and you WILL learn a way to survive with this illness. Sending you hugs!!
I agree with Sonya/Karyn. First thing I thought was thyroid.
Hoping your primary care doc can get you some answers quickly so you can get some relief.
I have SS and Type 1 Diabetes. Hashimoto’s isn’t likely in my future with those other two comorbidities. It’s good to know I won’t be alone in my struggles.
My hair fell out when I wasn't taking enough thyroid supplement so I guess it can happen either way. Glad this is a safe place for you to vent. We have all been where you are. It isn't easy but when you get the right medical you can cope. Hang in there!
I feel for you. All this stuff can make us panic from time to time--I certainly do. However we keep going.
I have a question: Are you being followed by rheumatologist (SS) and an endocrinologist (thyroid)? It's been my experience that GPs (they come and go in my HMO) I've seen lack the experience to handle the diseases/syndromes that we have. Quite frankly it's the specialist that keep me going.
Thanks for your message. Yes, I have a Rheumatologist. He rx's the Plaquenil, Pilocarpine, and has me seeing an Opthamologist to monitor my eyes. My other Dr. is a "Functional Medicine" Doctor and she manages my hormone, including thyroid. She is the one who tested for Sjogren's and discovered I had it. She had me start seeing the Rheumatologist immediately and rx'ed Restasis right away. USAgurl said:
Judy,
I feel for you. All this stuff can make us panic from time to time--I certainly do. However we keep going.
I have a question: Are you being followed by rheumatologist (SS) and an endocrinologist (thyroid)? It's been my experience that GPs (they come and go in my HMO) I've seen lack the experience to handle the diseases/syndromes that we have. Quite frankly it's the specialist that keep me going.
My hair fell out when I wasn't taking enough thyroid supplement so I guess it can happen either way. Glad this is a safe place for you to vent. We have all been where you are. It isn't easy but when you get the right medical you can cope. Hang in there!
It's very hard to have a debilitating illness and remain cheerful, so your depression and stress are totally understandable. My Sjogren's is much less severe than yours but still is a cause of stress for me, especially since I don't know when a symptom is from Sjogren's or something else. I try to remember George Burns, at 100, saying, "Everyday I wake up in the morning is a good day". Jaycee
Thanks, Jaycee. I agree it is difficult sometimes knowing what is causing a particular symptom. For the most part, (although my family may disagree :-)), I am pretty even-keeled, so this whole downward spiral has been discerning. Thank you for the laugh, "Everyday I wake up in the morning is a good day." Definitely something I need to remember. Thank you for the support.
Hi Judy, I have had some of the same issues you are experiencing. I was diagnosed with Sjogren's Syndrome about 10 years ago. It took about 5 years for me to find a doctor that understood what I was going through. I also had Hashimotos. I developed a large goiter and had to have my thyroid removed.I am sorry that you are going through so much. You did not say what your Plaquenil dose was so I am wondering if your dose needs adjusted. Is the Rheumatologist you see knowledgeable about SS ? Finding a good Rheumatologist was a lifesaver for me. Prior to that I thought I was going crazy. This is a great site to talk to others that understand what you are going through. Rambling allowed. We have all been there. I hope your doctor will be able to help and provide some answers. Prayers...
My Plaquenil dose is 200mg twice a day. My Dr. is really good. He conducts many of the clinical trials for SS/Lupus and wrote a book that is used in many diagnoses of autoimmune diseases. It took me a bit to find him, but I feel I am in good hands with him. Thanks for your message.
I went to see my Dr. today. Not my Rheumatologist, the Dr. who manages my hormones, including thyroid. She thought my symptoms most mimicked a "Flare," but she's the one who lowered my T4/T3 last visit. She gave me an IV of Vitamin C, B12, and Glutathione. She also ran a battery of tests including thyroid, C-Reactive Protein, SED rate, Estrogen levels, etc. She thinks my inflammation rate (CRP and SED) will be high due to inflammation causing a "flare."