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Lupus maybe?...Autoimmune crap, any info appreciated

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Old 06-21-2011, 04:34 PM   #1
Join Date: Jun 2011
Location: NY
Posts: 2
Lupus maybe?...Autoimmune crap, any info appreciated

Hey guys

I am 26 and my health has declined rapidly since last summer.

Main symptoms:
chronic headaches
Extreme fatigue
Body aches
Neck pain
Intolerant to heat/coldness
Blurry vision
Hair loss
Difficulty losing weight

I have a wheat allergy but tested negative for celiac.
Tested negative for Lyme.
I have PCOS.
History of anemia but right now levels are okay
I have cysts on my lymph nodes, salivary glands, thyroid, sinus cavity, ovaries and breasts.
Markedly tortuous carotid artery with calcification (low cholesterol, no smoking)

I am at a loss. Anyone have experience with Lupus? I'm looking for more leads to start researching and testing for.

Also - so far the cysts are all benign, but what causes so many cysts? Is there any reseach on this and I'm jus not seeing it?

Thank you!
Any feedback or thoughts would be great.
I was diagnosed with Hashimoto's due to an enlarged thyroid with nodules but my hormone levels have tested normal every time.

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Old 06-21-2011, 10:37 PM   #2
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Join Date: Jun 2011
Location: Manchester, NH, USA
Posts: 16
upssamc HB User
Re: Lupus maybe?...Autoimmune crap, any info appreciated

Hey there, your symptoms definitely lean towards an autoimmune disorder, have you had your ANA checked, other blood work? Are you on any medication for the hashimotos? That should be treated for sure! Thyroid disorders can cause all sorts of aches and pain, Take care.

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MONSTERRR (06-22-2011)
Old 06-22-2011, 04:40 AM   #3
Join Date: Jun 2011
Location: NY
Posts: 2
Re: Lupus maybe?...Autoimmune crap, any info appreciated

Hey upssamc

I have not had the ANA test. I just went through a round of caT scans because they thought I had an aneurysm - which turned out to be a really twisted carotid. The only other noteworthy thing they found was the cyst in my sinus cavity, which I have to follow up on.

Today I am having a thyroid biopsy an another round of blood work.

My pcp was terrible and I haven't been back to her since October. I found a great new pcp, but I want to go in there prepared with a list of demands (I.e. The tests I want!).

I am two thyroid meds - Synthroid and Cytomel - but I am on the absolute lowest dosages because my levels keep testing "normal." My endo only put me on them because I kept complaining about poorly I felt. I am also on Restatis for extreme dry eye (have not worn my contactsin six months).

You know that run down/tired/miserable feeling you get when you have a cold? I feel like that everyday. I am so tired of discouraged. There IS something wrong with me, and I needy figure this out asap.

Last edited by MONSTERRR; 06-22-2011 at 04:42 AM.

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upssamc (06-22-2011)
Old 06-22-2011, 07:51 AM   #4
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Join Date: Jun 2011
Location: Manchester, NH, USA
Posts: 16
upssamc HB User
Re: Lupus maybe?...Autoimmune crap, any info appreciated

*hugs* I know that run down terrible, flu-symptoms, bruised body feeling very well, everyday life story for me for 5 years now. Sadly, I don't think it ever goes away Have you looked into fibromyalgia? It's very likely you are suffering from that as well as other autoimmune disorders. You must make sure you get your ANA checked, if you test positive, your doctor should then refer you to a rheumatologist, do follow up blood work to check for specific autoantibodies as well as running a double strand DNA test.. Even though your throid levels are 'normal',

I would also ask your endocronologist to up your synthroid a bit, see if that helps, perhaps it won't mess with your thyroid levels and maybe you'll feel loads better. It takes awhile. I was in tears last night, so frustrated with my meds not working.

It's trial and error unfortunately. I hope you get some answers soon. Do you have any other symptoms that come and go? That might be useful to getting a proper diagnosis. If you get a certain ache or problem and go OH! Thats happened before, make sure you write it down so you can remember to present the info to your docs!!

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