New symptoms question...

[susanr]

Hi - I am relatively new at this, diagnosed with Sjogrens 1 1/2 years ago, currently on plaquenil. Last November I started with stomach pain and had quite a ride that I posted about here. No answers on that, have been out of work since. I have been experiencing one thing after another and (hopefully this is not too self indulgent). Just wondering if anyone can help steer me in the right direction:

Blood pressure out of control - way too high (diastolic went as high as 125), new medication, then way too low. It had been well controlled for 15 years previous on medication. Now it fluctuates quite a lot still. My primary dr is at a loss.
Other symptoms such as:
Lightheadedness, especially upon standing and walking (postural), have to "get down" or risk blacking out
fatigue, weakness, muscle pain, aches and shoulder/back pain (arthritis)
heart palpitations
feeling like I can hear my heartbeat in my ears
loud ringing in the ears
temp regulation seems to be off, unreasonably hot then cold, sometimes low grade temp (I am done with menopause)
trouble sleeping
headaches
nausea off and on
eye, mouth, nose, throat dryness getting worse

I have had ekg and excercise ekg in the past couple of years that were fine. I did some research here and on the web, I am wondering if autonomic (sp?) neuropathy is a possibility? I really have to get this figured out, have been on short term disability 3 months now and although my Boss has been relatively supportive, he is starting to wonder if I will ever come back (we do need the money - I have to work at least part time). I am wondering too.

Thyroid meds are not metabolizing the same either, I am on a high dose of levoxyl for tsh suppresion after cancer and am having a hard time keeping it stable for some reason now after 5 years doing fine (TSH went from .05-5, at the moment under better control on higher dose)

When I was in the hospital in December I had a false positive blood pregnancy test. I had an ultrasound to make sure, even though it would have been pretty impossible at this point!

After all this and some other wierd blood results in the past few years (cortisol was once off - although the stimulation test was fine) makes me wonder if there may be a bigger picture all the Drs are missing. It is my life so I figure I better help find an answer if I can

I apologize for the length of this, I did want to mention anything I thought might mean something. I just wonder if this sounds familiar to anyone.
Thanks so much for listening!
Susan

[Scottietottie]

Hi Susanr 

I'm sorry you are having such a tough time. I don't know anything about BP and I'm not medical but I do wonder about the thyroid thing. Did you have to have your thyroid removed because of cancer?

As far as I know, Levoxyl is synthetic T4. To be effective T4 needs to be converted to T3 and this is usually done by the thyroid and the liver (I think - tell me if I'm wrong people!)  If you are having a hard time converting - it could be that you need some T3 along with the T4. I would try to see your endocrinologist and ask.

I hope you get some answerssoon.

Take care - Scottie. 

[susanr]

Thanks for responding. yes, I had thyroid cancer and have a great Dr in Boston at Mass General. Even he does not know why my body is suddenly not metabolizing the medicine the way it has been. At first I thought some of the symptoms may be because I was on too much Levoxyl since I had lost weight, but that was not the case. TSH is almost back to where it should be (under.5) for post -cancer. It seems to be just blood pressure out of control now.

[Babs659]

Sorry you're so ill.  How long have you been on Plaquenil?  Have they considered methylprednisolone (Medrol) in addition?  I have thyroid disease, hypertension and GERD, like you.  I also suddenly had a hard time regulating my meds.  I also suffered terribly with light headedness for months before the Medrol kicked in.  I know how scary it can be.  I'm feeling much better now and I can only credit the 14 months I've been on Plaquenil and 11 months on Medrol.  Sounds to me like all your symptoms could be Sjs.

Good luck

[susanr]

Thanks, Babs. I have been on plaquenil (200, twice a day) for a year and a half. I did methotrexate injections and have been on prednisone a couple of times which helped but since the stomach pain they took me off both just in case the pain had anything to do with the meds. I am making an appt to see my Rheumatologist today or tomorrow. I am glad medrol helped you, is it another form of prednisone?

[Babs659]

Medrol is a type of prednisone.  I asked a doctor I work with what is the equivalent dose of prednisolone to prednisone, and he thinks it's about 1:3.  So, 4 mg of Medrol could be, like, 12 mg of prednisone.  It is a safe enough maintenance dose meant for longer term use.  It took about a month to really kick in but I gradually felt much better.  Hope that helps

I've now gotten myself down to 2mg a day, because I got tired of gaining weight but I don't dare go lower.

[susanr]

Thank you so much, I will ask him about medrol vs prednisone today.

[Scottietottie]

Hi 

Has the doc ever tried adding T3 to the T4??  I feel really ill if my TSH is above 2. Some people with autoimmune problems feel best when the TSH is suppressed but like I said - I'm no medic and know little about thyroid cancer.
I don't know how thyroid disorders fit with BP either because its just something I'm ignorant about.

Take care - Scottie 

[saranski]

Hi,
Wow, this sounds like me!!!!!!! I have been diagnosed with autonomic dysfunction.  I also have sporadic abnormal blood tests (liver, etc) but then they repeat them and they are normal.  do you have a cardiologist?  The "blacking out" stuff sounds like vasal vagal syncope issues (an autonomic dysfunction) and there are meds to help control it, you need to see a cardiologist though.  As far as the body temp up/down, i totally hear you.  Let me know how things turn out.  I will be thinking of you.
sarah

[susanr]

Hi Saranski - hmmmm - I have had recent sporadic abnormal blood tests too, then test negative upon repeat - liver tests and and pancreas enzymes, also a false positive for pregnancy (c'mon now, I'm 55!). Are you on any meds for the autonomic dysfunction? Have you had GI issues? Thanks so much for replying.
Susan

[Linda196]

Just a point of clarification...Medrol is methylprednisolone, not prednisolone, and the conversion factor (pred to methylpred) is 1.25:1, so 5 mg of Prednisone equals 4 mg of Medrol.

This is a converter I found at "the Clinician's Ultimate Reference" www.globalrph.com/corticocalc.htm  It can help you figure out relative doses of various corticosteroids.

[Babs659]

Linda, you're the BEST

[louise]

I have only been diagnosed with sjogrens. I am getting tested for thyroid soon also. I have the lightheadness mostly when I bend over. I have lots of sleepless nights followed by lots of fatigue weakness,muscle pain and weakness. I have had the feeling my heart was racing and trouble with feeling I was breathing too fast. When I lay on my left side I can hear my heart beating in my head. I mentioned that to the Rheumy but he didn't think much of it. I always having ringing in my left ear but it is not that loud. I definitely have the hot and cold thing going on it is one of my most bothersome symptoms. I have nausea off and on. My eyes and mouth are getting worse. My nose was bad for about 2 months then it got better. It is a little dry but not bad. I have a whole list of other complaints but I won't  go into those right now.