I had a doctor's appointment yesterday. She had ordered a blood test earlier, and told me about the results. Before Sjogren's Disease hit me, I already had hypothyroidism. I've been taking medicine for it, and I thought I had it under control. One of the things the doctor tested were my thyroid levels. Well, now they seem out of whack again. I'm especially concerned with my TSH. It's higher than it's ever been.
Here are the results, if anyone can make more sense of them.
TSH: 8.320 (high) Reference: 0.450-4.500
Thyroxine (T4): 7.4 Reference: 4.5-12.0
T3 Uptake: 23 (low) Reference: 24-39
Free Thyroxine Index: 1.7 Reference: 1.2-4.9
My T4 looks to be in normal range, but I have no idea why my TSH is so high, or why my T3 Uptake seems to be low. The doctor said the TSH can fluctuate, but I have NEVER seen it that high before, and I've had my thyroid levels checked many times before.
I'm so frustrated, and feel so completely helpless. I'm doing everything I can. I'm very careful about taking all the medicine I'm supposed to everyday. I'm trying to exercise more on days when I can, when I feel like I have a little bit more energy. But nothing is working. When I first started getting symptoms of an autoimmune disease, I thought it was thyroid problems. Well, after fighting for over a year to get a doctor to listen to me, I found out that I have Sjogren's and started taking medicine for it. I felt better for a while, but now I'm feeling tired all the time again and find out my thyroid is acting up again. I felt completely crushed yesterday. It seems like can't beat this, no matter what I do. Like something is trying to kill me.
I'm a little better today, but honestly I don't know how much more of this I can take. I had some bad thoughts earlier, sometimes I'm wondering why I'm even bothering anymore.
TSH is produced by the pituitary gland. It tells the thyroid gland to make and release thyroid hormones into the blood. It goes high when you have hypothyroid. and many times during the day dpending on when you eat and when you take your meds. In any event, you have what most docs would consider a normal test. For someone being regulated by meds, one that might even bring a smile to a docs face.
I definitely feel for you, sometimes it’s just hard to get through the day, it’s hard to imagine the rest of our lives like this. I wish I had some inspiring words for you. It’s hard to know what to say sometimes because I know that I am not sure what I want to hear. Even in here where everyone is going through this we all feel so different it’s easy to feel completely alone. This may not make you feel better but I’m glad to know I’m not the only one feeling like this, that it’s just as hard for other people and I’m not just weak. Every doctors visit feels overwhelming to a point where I feel nauseous even just going there. I know we are strangers but if I could be there to hold your hand through it I would
Angie, thank you so much for your kind words and understanding. I know there isn't much you or anyone could do to help with this. I guess I just wonder how you guys can deal with it. I wonder how people here who have fought Sjogren's Disease or other health problems are able to keep going. Some people here have had autoimmune diseases for years, and I don't know how they keep going. I'm still new to health problems. 5 years ago, I had no idea whatsoever, no inkling at all that this was going to happen to me. I used to be able to do so much. I was in much better shape back then. I used to go on power walks for 5 miles every night. I walked faster than most people jog. Part of the route I took was up very steep streets. I used to hang out with my friends, and drive all over the place. I had a pretty active life. But then, in 2010, one thing after another hit me. In February, 2010, one of my best friends was killed. He was hit by a car while he was riding his bike to a party. I was so completely devastated by that, I didn't think I could keep living. I managed to keep going, but then I started having all kinds of weird health problems. That summer, I started getting sick a lot and I had to have my gallbladder removed. Then around 2011, I was diagnosed with hypothyroidism. Then I started randomly getting sick, with no real explanations. I was hospitalized one time because of "acute renal insufficiency." My kidneys were failing. I had been extremely sick for several days and couldn't eat anything. I was in the hospital for 3-4 days. My kidneys started working ok again, but they were never able to explain what caused me to get so sick in the first place.
And now, I get hit with an autoimmune disease and it feels like something is trying to kill me. I honestly just don't know how much more I can take. I thought I was doing better. Before I was diagnosed with Sjogren's, I was getting so many weird symptoms and I didn't know what was happening to me. I was afraid that I was going to die before anyone even took me seriously. But now, I feel so tired and miserable that I just don't know how much longer I can deal with this. I'm doing everything I can, but if this is what my life is going to be like, I just don't see the point. It's been a long time since I've felt this hopeless. The thought of suicide crosses my mind sometimes. This is probably the closest I've felt to being suicidal in a long time. I'm trying not to think like that, I'm trying to be hopeful that maybe there are other medicines that can help. Or maybe my thyroid level is off and that is what is making me feel so horribly tired. But it is a hard struggle to keep going.
I did call my rhumatologist's office...well, actually my mom did this morning, because I felt too tired and sick to do it. He said that my TSH number is definitely way too high and that my thyroid medicine needs to be increased. I made an appointment to see him on December 26. But he said my regular doctor has to be the one to increase my thyroid medicine. I'm going to try to make another appointment to see her. I just wish I had a better answer for what is happening to me. Why is my body falling apart like this? Is it because the Sjogren's is really flaring up and maybe attacking my thyroid more aggressively? I just have to do something, because I don't know how much longer I can fight this. I can't stand being so tired and feeling so miserable anymore.
I agree everything changes so much so fast, my life is completely changed and I feel like such a burdon on my family. It sounds like your mom cares about you, I’m glad you have someone. I know it feels hard to carry on, hopefully you can find some strength somewhere, I really hope you can overcome these feelings, you are one of my favourite people to talk to on here and I would really miss you if you weren’t here anymore. I bet you have people in your life that feel the same way. Are there any support groups or counsellors there you can see? The loss of your friend must have been horrible, I have never experienced anything like that I can’t even imagine. But you know how horrible it feels to lose someone, your mom and other friends and family would probably feel that way if they lost you. Anytime you just need to vent and complain you can vent to me, I understand how important that is. I may not know the right things to say but I will definitely listen. Just please hold on and ask for any help you may need, you are definitely worth it
Angie, thanks again for being so understanding. I do have an update. I went to a doctor today (same clinic I usually go to, but different doctor this time). He said right away that my TSH was too high, and that although my thyroxine level was technically within the "normal" range, that apparently it wasn't right for me. He suggest that I try taking 1 and half tablets everyday (increasing my dosage of Amour Thyroid to 90mg instead of 60mg) and see if that helps. Then they're going to retest it in a week.
He did say that Sjogren's can make you feel wiped out (actually, he said "it can really knock you on your ass" which I thought I was hilarious!) but it seems like he thinks my thyroid levels are contributing to the problem. So I hope taking more of the medicine will help.
tj1, it seems like you might need to do some research. Perhaps a little more reading on endocrinology.
That’s great gateway! Keep me updated if it starts working for you! I don’t know much about the medical stuff but I do know how exhausting this disease is and it’s so hard to keep on going through the regular days, let alone the days when there is anything extra going on. It makes you start to feel crazy, the other day I literally cried because I forgot to turn the dryer on and my son had no clean pants. It felt like the worst thing in the world to me cuz I was just so tired!
So not quite the crisis you thought, and he tweaked the medicine, that may be good. Curious how it turns out. Its allways good when the thyroxin is in normal range.
Patients with primary hypothyroidism have elevated TSH levels and decreased free hormone levels. Patients with elevated TSH levels (usually 4.5-10.0 mIU/L) but normal free hormone levels or estimates are considered to have mild or subclinical hypothyroidism.
Primary hypothyroidism is virtually the only disease that is characterized by sustained rises in TSH levels. As the TSH level increases early in the disease, conversion of T4 to T3 increases, maintaining T3 levels. In early hypothyroidism, TSH levels are elevated, T4 levels are normal to low, and T3 levels are normal.
The number that would indicative for change concerning in you profile is the T-3 number. T-4 converts to T-3. Yours isn't quite there yet. You might be surprised what I know about endocrinology especially as it relates to the exocrine system and collagen production a critical portion of SS.
Make sure your Rheumie is aware of any changes in your med levels.