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Discussion Starter · #1 ·
hi,

i posted a very similar message on another message board, but i thought i should post here as well. that way i could get a more well-rounded opinion.

i'm a little embarrassed about posting here, but i figured i might as well. i just wanted to get some opinions about whether or not i should bother a doctor over these symptoms. before i start, i should say that i know very little about lupus. i know it's an autoimmune disorder, and i know it can be serious. i was trying to figure out some of my symptoms and when i googled them, lupus kept coming up, so here i am.

so...some background on me. i'm in my early 30's. about 2 years ago, i was diagnosed with celiac disease. 10 years before that, i was diagnosed with hashimoto's thyroiditis, so i'm hypothyroid. celiac and hashimoto's are both autoimmune disorders. i also have polycystic ovarian disease. i was really sick when i was diagnosed with celiac, a lot of those symptoms have gone away, except for a few. and now i have some new ones. here goes...

i have VERY pink cheeks, nose, and to a lesser degree, forehead. the pinkness stops abruptly underneath the outer corner of my eyes. i noticed that i became much pinker about 5 years ago, but didn't give it much thought, since i am ruddy skinned and i figured it might be rosacea. i have to exfoliate every day (even though this leaves my skin feeling a bit raw), otherwise the redness is much more apparant and bumpy. i have problems with fatigue. most of the time i'm okay, but some days (like yesterday), i just feel wiped out. when i feel this tired, i can't concentrate and my memory is shot. i've had, during the times of greatest fatigue, irregular heartbeats and palpitations (though they couldn't find anything wrong with my heart). i have sore and achy joints, mostly my hips and hands. the thing that made me think to post here...i recently moved to a sunny climate from a rainy one. most of the time i try to stay out of the sun because i am very fair, but i can't avoid it here, and i've been noticing that after i spend more than 20-30 minutes in the sun, i develop a small blistery rash (without the heat of a burn) over my cheeks, nose, and forehead. this will hang around for a day or two, and then my skin will become scaly. if i drag my fingernail across my cheek, it will come away with gobs of dried skin under the nail. my hairline is also receding (but that could be the polycystic ovarian disease). my eyes are always dry and goopy, with a yellowish discharge daily. and my hands, and to some degree my feet, swell in warm weather when i do much walking. i also have a tendency to bruise very easily, this seems to come and go.

what do you think? it was the sun blister thing that made me suddenly wonder about lupus. since i have other autoimmune disorders, i guess it's not that far-fetched. but, i really don't want to go to any more doctors if i can help it. they make me nervous. normally, i would just deal with the symptoms, since i haven't had much luck getting help for the other things i have. however, if you think it's possible that it could be lupus, then i guess i should go get it checked out.

thanks in advance for your input.
 

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:wave: Hi Beelz, and a warm welcome to you and to this site. With your auto-
immune history, and what you just posted, I would say yes, get yoourself an appt. made to see a good Rheumy. The memory thing goes with all this,but the sun thing sinched it. Two things you have to memorize;
1- the sun is your enemy
2- stress=pain
You are lucky that this last time in the sun that you didn't come away worse, and end up with the Dermy, and creams and scars. I did, and I only went in the sun for about 6 minutes. I live in Florida, and basicly I just stay inside most of the year, but if I have to go out, I make sure I am fully covered and nothing shows.

So, with my two-cents put in, I would say " go pick out a Rheumy to be your new dr.
Be well and keep posting :nurse: B)
 

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beelzebubble,

Hello and welcome to the lupus site. :hello:

I am going to assume that you are sure your hashimotos is under control as thyroid can cause some of the symptoms. Here is a link to a dermatology site so you can check out the standard lupus rashes, not to be confused with all the strange rashes people here have had.

http://www.dermnetnz.org/immune/cutaneous-lupus.html

It certainly wouldn't hurt to have the full complement of blood tests used in diagnosing lupus and other ctd's. However I could see where you have so many doctors already that the last thing you want is another illness and the doctors that go with it.

Let us know how things go.

take care,
Karen

ps. I live in a sunny climate also and I stay inside most all the time between 10 AM and 4PM.
 

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Discussion Starter · #4 ·
thanks for the replies and thoughts, guys. yes, as far as i know, my thyroid is under control. i've been at the same dosage for about 9 years so...

i suppose i should talk to my doc about this. how would you go about it? should i ask to be tested for lupus? or should i just leave it up to him as to what to test me for?

thanks,
bubble
 

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Discussion Starter · #5 ·
i'm trying to get a referral to a rheumatologist. is there anything i should know or do before i go in to see him/her?

thanks heaps,
bubble
 

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Bubble,

Your regular doctor will probably run some blood tests that are often used as a screening tool. Make sure the rheumy you are being referred to is a lupus specialist. If you are in a small town then it is very unlikely that a local rheumy would be a specialist. The lupus specialists are usually found at or near a teaching or research hospital.

hopefully someone will come along and tell you about the list and all. My hands aren't working so good tonight. The big thing tho is do NOT wear make-up or fingernail polish to your appointment.

Good luck,
Karen
 

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Bubble,

Hey. As for what you should do before going in to the rheumy. As Karen mentioned about lists.

Make a list of your symptoms- Past & Present. The most bothersome at the top. Health history, and family history.
2 copies could be helpful, as u could give 1 to the doc. and have 1 in your hand to go over w/. n the doc. can keep it in your file.

Also, write any questions u have down. This is really helpful as we get in there and forget what we were going to ask. A good doc., will also answer your q's. & take time w/ u on that first visit.
He/she should be very thorough.

Anyways, that's about it, as Karen mentioned the makeup n nailpolish. Very important, i will second that!!

Take care n i wish u the best,
Alicia :coffee:
 

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Bubble,

I'll just add one thing -- if your rash comes and goes, take pictures of it while you have it! Just bring those pictures in to show what you're talking about -- those can hold a lot of weight and sure beats having a generally good day when you go in when you're trying to prove a point!

Good luck :)

gretchen
 

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Hi Bubbles... yes, take the pictures.... I did that and that was very helpful because every appt. I had nothing was there. So I went with like 20 pics of different things that happened. Also, go see a rhemo and suggest to them that you think maybe Lupus and have they tested you for it? Write everything down and bring the pics with you. You deserve to know if you have it or is it the meds you are on or the other diseases you have?

good luck and let us know !!!

(( hugs))

Paula
 

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Bubbles,

I am not so sure telling a rheumatologist that you think you have lupus is a good idea. Many doctors dislike patients doing a self diagnosis. As far as with your GP you could ask him if he thinks it is a good idea to check for rheumatic diseases. This makes it ultimately his idea then instead of yours.

Karen
 

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Beelz

This is a long shot but I wanted to address something you said in your post. I have recently researched sjogrens, cns vasculitis and primary billiary cirrohsis (sp) because I have sx's of all of them.

Sjogrens can lead to cns vasculitis and pbc (if I remember correctly). I did have some good websites pegged but got rid of them since my doc blew me off when I asked about them (besides my notes were a mess because I'm not thinking to clearly and that didn't help matters).

I noticed a couple of things you mentioned - dry eyes (sjorgrens), ruddy skin - not sure what you mean by that but pbc will cause a darkening of the skin. Polycystic ovarian disease is also a sx of pbc.

There are some good websites regarding sjogrens and pbc. Try google and see what you come up with and see if anything there might fit. There are relatively simple tests to run for these diseases.

This is just an observation of mine from what I learned in my research and from what you described in your post.


I hope you find some answers soon. Please let us know what you find out.

Hugs. :flowers:

Julie
 

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Discussion Starter · #12 ·
thanks for all your thoughts. just an update. i am still trying to get some answers. currently, i am waiting for my appt. with a cardiologist. and i'm waiting for some new bloodtests. no tests for lupus. my doctor is chalking it up to anxiety. although, he did consent to do a cbc and, thyroid tests, and b12 check. we'll see. i've had very little luck getting anywhere, but i'm still plugging along.

at this point, it's the heart stuff that has become frustrating. i'm having the palpitations and skipped heartbeats more frequently and it's a little freaky.

you guys were great to take the time to respond to my post, and i kept saying i'd post when i had a conclusion one way or the other. alas, no resolution yet. i figured i should give you an update anyway.

thanks again,
bubble
 

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QUOTE(beelzebubble @ Dec 3 2005, 11:28 PM) [post=385713]Quoted post[/post]

thanks for all your thoughts. just an update. i am still trying to get some answers. currently, i am waiting for my appt. with a cardiologist. and i'm waiting for some new bloodtests. no tests for lupus. my doctor is chalking it up to anxiety. although, he did consent to do a cbc and, thyroid tests, and b12 check. we'll see. i've had very little luck getting anywhere, but i'm still plugging along.

at this point, it's the heart stuff that has become frustrating. i'm having the palpitations and skipped heartbeats more frequently and it's a little freaky.

you guys were great to take the time to respond to my post, and i kept saying i'd post when i had a conclusion one way or the other. alas, no resolution yet. i figured i should give you an update anyway.

thanks again,
bubble
[/b][/quote]

Hi Bubble. I'm in limbo land too with a whole mish mash of symptoms that my Dr tries to put down to depression and anxiety. I told him the only thing that makes me anxious was him
I hope you get through this the only think i can add is keep pushing you know your body and you'll know when you last felt ok.

Good luck lots of us seem to need it.

Luv
Frances
 

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Discussion Starter · #14 ·
hi all,

an update. i went to the doctor and he ran some blood tests-cbc, b12, thyroglobulin ab, free thyroxine, t3 uptake, thyroid peroxidase, and tsh measure.

most of the tests came back normal, some were off. my white blood cell count was fairly elevated at 12,000 (normal 3 to 11,000). my thyroid results were within normal range, BUT my thyroglobulin ab was 121 (normal below 41). and my thyroid peroxidase was 458 (normal is less than 35). the doctor is baffled, so he is sending me to an endocrinologist. i have a while to wait though.

i'm curious if anyone else has ever experienced symptoms akin to hyperthyroidism, with normal blood tests for thyroid hormones, but at the same time producing a massive amount of anti-thyroid antibodies, which would suggest hypothyroidism? it's so odd, and i just want some answers. i am on thyroid meds, and have been for 13 years (i'm 32). i'm just confused and a little frightened. these symptoms are really scary. any input would be greatly appreciated. any at all.

bubble
 

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QUOTE(beelzebubble @ Dec 7 2005, 07:05 PM) [post=386242]Quoted post[/post]

hi all,

an update. i went to the doctor and he ran some blood tests-cbc, b12, thyroglobulin ab, free thyroxine, t3 uptake, thyroid peroxidase, and tsh measure.

most of the tests came back normal, some were off. my white blood cell count was fairly elevated at 12,000 (normal 3 to 11,000). my thyroid results were within normal range, BUT my thyroglobulin ab was 121 (normal below 41). and my thyroid peroxidase was 458 (normal is less than 35). the doctor is baffled, so he is sending me to an endocrinologist. i have a while to wait though.

i'm curious if anyone else has ever experienced symptoms akin to hyperthyroidism, with normal blood tests for thyroid hormones, but at the same time producing a massive amount of anti-thyroid antibodies, which would suggest hypothyroidism? it's so odd, and i just want some answers. i am on thyroid meds, and have been for 13 years (i'm 32). i'm just confused and a little frightened. these symptoms are really scary. any input would be greatly appreciated. any at all.

bubble
[/b][/quote]

Hey Bubbles,
Kinda been down this road a little. in the next reply I'll attatch my original post on the intro board, that might give a little insight on my background. My mom died from lupus so I've been keeping tabs on my symptoms. Make sure your endo takes the thyroid peroxidase test serious, mine blew it off. I was told normal was 0.0 to 2.0...mine was only listed as greater than 70. A site I found helpful and you can write into is drlowe.com he has an interseting look on thyroid therapy and some books he is trying to sell. But I just got my Dr. to put me on Synthroid with some of his research. Dr. Lowe seems to like treating with T3 and T4 synthetic hormone such as Armour. my Dr. only put me on T4 synthroid. I'm still working on him. It is a puzzler why the thyroid is involved in the auto-immune picture. My mom had her's removed at 30.
I'll send my background, hope you don't mind. Keep in touch on what is going on. I wish you the very best!
Keep your Fins up>

QUOTE(beelzebubble @ Dec 7 2005, 07:05 PM) [post=386242]Quoted post[/post]

hi all,

an update. i went to the doctor and he ran some blood tests-cbc, b12, thyroglobulin ab, free thyroxine, t3 uptake, thyroid peroxidase, and tsh measure.

most of the tests came back normal, some were off. my white blood cell count was fairly elevated at 12,000 (normal 3 to 11,000). my thyroid results were within normal range, BUT my thyroglobulin ab was 121 (normal below 41). and my thyroid peroxidase was 458 (normal is less than 35). the doctor is baffled, so he is sending me to an endocrinologist. i have a while to wait though.

i'm curious if anyone else has ever experienced symptoms akin to hyperthyroidism, with normal blood tests for thyroid hormones, but at the same time producing a massive amount of anti-thyroid antibodies, which would suggest hypothyroidism? it's so odd, and i just want some answers. i am on thyroid meds, and have been for 13 years (i'm 32). i'm just confused and a little frightened. these symptoms are really scary. any input would be greatly appreciated. any at all.

bubble
[/b][/quote]
Here it is,
I am a 43 year old male that was first diagnosed with depression in 1993. I have never felt the same since a serious bout with mononucleosis requiring a 4 day stay in the hospital. My high school days were filled with panic attacks and have been diagnosed and treated for anxiety disorders. Things began to get worse in 2001 and was refered to a rhuematologist and was thrown into the "catch all" diagnosis of fibromyalgia. I suffer from sleep apnea and have regular sleep latency studies, I use my continuous positive air pressure (CPAP) nightly. In 2004 I had major right rotator cuff repair surgery and this year major left rotator cuff repair surgery. Both shoulder surgeries required reattachment. My long story gets longer.
Trying to get "better" I decided to see a psychiatrist. He changed my depression medicine, the first time I had side effects like profuse sweating, increased anxiety and seething anger. Not good. The next med he tried has made me gain 15 pounds in 3 weeks and so sleepy, I could't function. My myalgias went from functional to almost debilitating. If I sit down for a while I am really stoved up. Mornings are tough, wanting to sleep and the pain of trying to get going. This week I had a visit with my family doc( he is the best ). He took me off of the psyc. recommmended depression med and put me on another and I already feel an improvement. We revisited my thyroid tests and my opinion on what is going on and family history.
FAMILY HISTORY - Mom died of lupus (SLE) at 62. She only had 6 months of retirement. She had her thyroid removed at age 30 for hyperthyroidism. She was also diagnosed with scleroderma, if that was't enough.
My sister has similar symptoms my mom had with lupus, skin related especially, and I am trying to convince her to be tested. She could be hypoactive also, but that is my opinion.
My mother's mother had myasthena gravis. A mother's side cousin has been diagnosed with lupus, systemic.
THE TESTS AND RESULTS:
ARTHRITIS PROFILE- ANTINUCLEAR ANTIBODY(ANA) ABNORMAL 1:320- a speckled pattern detected.
C-RP was missed by Rhuemy but was high
THYROID PEROXIDASE (TPO) ABNORMAL >70.0 IU/ml normal = 0.0-2.0
TSH ulU/ml 1.61 reference range 0.49- 4.67
THRYOGLOBULIN Ab 1.5 iu/ml normal 0.0- 2.0
THROXINE 7.4 ug/dl normal 5.1-14.1
THRIIODOTHRONINE, FREE 3.7pg/ml normal 2.4- 4.2

These tests were ordered by a great fibromyalgia treating Dr. and the endocrinologist I saw discounted them. The fibro doc is 3 hours away from my home and I have not been able to make it back to him. I noticed on his paperwork that he recommended that I should see a Thyroid specialist and not an endocrinologist. Is there a difference?
I have read that eventhough my other thyroid tests appear normal, patients may be suffering from hypothyroid symptoms due to autoimmune thyroid disease. Is this indicated by my high thyroid peroxidase?
What do I need to do? What next?
I have another TSH test coming back from the lab soon, taken at a health fair. My family Dr. said he might start me on low doses of synthetic thyroid hormone, despite the test results.
Please help if you can, any advice is welcome!
Worn out from feeling bad,
Mike
 

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Discussion Starter · #16 ·
er...hi. i just thought i'd resurrect this thread as i'm still having many of the same (and many new) problems. i'm at a loss though, as i keep being blown off by my doctors. they all seem to think that my thyroid is the culprit, since my results are always a little abnormal, mostly my antibodies. as a result, they keep changing my thyroid medication with little to no result.

here's the current situation:

  • -still getting the rash from the sun, but now it will happen in as little as five minutes on sunny days
  • -still having some heart issues, though not as bad. some days it feels as if there's a bubble in my chest. not pressure exactly, more like discomfort like something is swollen. it seems to get worse in different positions. i still have skipped heartbeats.
  • -i'm still having joint pain, though now i have muscle pain as well.
  • -my fingernails have changed drastically in the last few years. i have vertical ridges on most of them and some seem to be slowly pulling away from the skin underneath. i've also developed white spots on my nails and the area around my nails is always red and often swollen and sore.
  • -my hands and feet are often incredibly cold. they take forever to warm up after i come back inside. i also seem to be getting some sort of red, itchy swelling on my toes when they get overly cold and then hot again too quickly. like when i get in the shower when my feet are cold. they'll burn and then they'll itch, and then areas around my toenails will swell.
  • -i've been getting low grade fevers very frequently. they usually don't go above 101 and are normally somewhere between 99.5 and 100.5. i can normally tell that i'm running a fever because i'll suddenly feel very lethargic, my face will feel tight and hot, and i will feel very cold. my normal body temp is actually somewhere between 97.6 and 98.2.
  • -i also have a recurring problem with hyper-sensitive itchy skin. some days my skin just feels itchy and crawly. i also appear to have developed a mild sensitivity to polyester. isn't that odd?

i've moved to a new city and am hoping that i'll get somewhere with a new doctor. i just want someone to listen to me. i've had thyroid disease for many, many years. i know what my symptoms are. these are not thyroid symptoms for me. these are something else.

does anyone have any thoughts? is there anything i can do in the short term to make myself feel better? this is like having a low grade flu all of the time. i feel achy all over. i'm feeling really pathetic because i just can't seem to make myself get out of the house and look for a job. i know i won't be able to do it. there are just some days that i can't even leave the house. i feel guilty because my husband is bringing in all of the money. i still take care of the house, but i'm not used to being dependant on someone else financially. depression (other than that caused by normal life events) has never really been a problem for me, but i'm starting to feel it these days. along with the anxiety that appeared around the same time as these symptoms, i'm a basket case.

i know i don't have a lupus diagnosis, but i know that you all will totally understand how yucky i feel. sorry if i seem to be a downer, i'm really tired. any help or even just understanding will be greatly appreciated.

smooches,
bubble
 

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Hi bubble,

Sorry you're feeling so badly. Have you been seen by a dermatologist? With all of your skin issues going on that might be a place to start, until you are able to see a new rheumatologist. If you inform them of your family history they may do a skin biopsy for lupus without a referral from a rheumatologist.

Best wishes,

Barb
 

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Hi Bubbles,

Nice to see you back again. Sorry your still having issues. I agree with Barb that a dermatologist may be a good idea for a skin biopsy.

Also have you found a good Rheumatologist in the new city your living in? It is imperative to find someone who will listen, not judge and preferrably have experience with Lupus.

I am wondering what blood work you have had done, antibodies specifically, that have shown positives in the past? This does help to paint a picture and set things aside from thyroid issues.

Let us know how you get along and come back again to visit the site. It is full of imformation and great people. Knowledge is power when dealing with doctors and I have gained so much of that being here.

Take care and join us in the chat room sometime.
 

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beelze,
Hi and welcome to the site. It sounds like it would be worth looking into. It could be somewhat related to something else but if it is lupus, it would be better to know and start treatment. You have to look hard to find a good doctor so keep your chin up and hang in there as you will be told all kinds of things. If they work and you don't keep after them then you will not have your answers. Lupus can be very hard to dx so know it will take time. I hope you are feeling well and doing well.
 
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