# Lupus with Hashi's



## nikimcn (Oct 16, 2010)

Well I went to the rheumatoid doctor today and he suspects Lupus, but is sending me for more bloodwork.
He says 'I have no idea what is going on with you".
I know autoimmune diseases are tough to diagnose, but he just didn't seem that bright. For being an initial visit he spent very little time with me. I think after the bloodwork gets back I will get a 2nd opinion. My f/u with him is not til March!!! what??


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## nikimcn (Oct 16, 2010)

no one here has lupus with hashis?


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## Andros (Aug 26, 2009)

nikimcn said:


> Well I went to the rheumatoid doctor today and he suspects Lupus, but is sending me for more bloodwork.
> He says 'I have no idea what is going on with you".
> I know autoimmune diseases are tough to diagnose, but he just didn't seem that bright. For being an initial visit he spent very little time with me. I think after the bloodwork gets back I will get a 2nd opinion. My f/u with him is not til March!!! what??


That does not make sense on the follow-up. I hope doc ran Anti-DNA, C3 and C4? For Lupus?

You can look this stuff up here and more.........
http://www.labtestsonline.org/unders...s/thyroid.html

Do you have any reason to suspect Lupus?


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## prettynikki5 (Dec 9, 2009)

nikimcn said:


> Well I went to the rheumatoid doctor today and he suspects Lupus, but is sending me for more bloodwork.
> He says 'I have no idea what is going on with you".
> I know autoimmune diseases are tough to diagnose, but he just didn't seem that bright. For being an initial visit he spent very little time with me. I think after the bloodwork gets back I will get a 2nd opinion. My f/u with him is not til March!!! what??


The "L" word was bounced around a bit between the rhuematologist and my endo. It was always just Hashimoto's but they couldn't understand why I felt so bad, but my thyroid levels were quite normal. They thought perhaps Lupus or some other autoimmune thing would surface. Nope. Just autoimmune activity related to the Hashi's. I always knew it was thyroid disease, it is crazy how often doc's are more willing to 'guess' at things and scare the crap out of us, rather than really take the time and the necessary labwork,, etc. to thoroughly diagnose us. I had to be VERY proactive and even 'pushy' to get the care I needed. These boards and 'Google' have been mopre helpful than I could have hoped for. Let us know what the labs say...


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## lavender (Jul 13, 2010)

Hi, I had class the last two days and did not have time to respond to your post since sitting through class is all I can do in a day right now .

Andros and I have had discussion on the board about the possibility of me having lupus a while back. Was referred to a Rheumy 3-4 years ago because of a high CRP level, all over pain and fatigue. Unexplained bouts of illness that come and go with stress. Rheumy was the worst appointment I have had in my entire life. She spent 5 minutes with me, refused to do any follow up lab work, (which is why I figured my doc sent me there in the first place). Pronounced that I had fibromyalgia and there was nothing she could do to help me.

I was crushed. After waiting months to get into this person who was supposed to be the best endo in town, all she could tell me was to exercise (which I was completely unable to do) and get someone else to prescribe me some anti-depressants (which I did and they made matters worse).

So, Fast forward a few years, my thyroid went berserk and I have been down and out since May. I am waiting to get into a new doc who might actually be willing to help me sort this out, and am hoping for a referral to a rheumy who actually treats people with fibro and lupus.

Not sure I can offer you a lot of help, just relate.


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## nikimcn (Oct 16, 2010)

my rheumatologist appt was a nightmare too.
you wait forever to get into these docs and they only take 5 mins with you.
never even questioned meds I was on (psych and b/p meds by the way).
I called today to the office to get results of my labs. had to leave a msg. think they called back? NOPE!



lavender said:


> Hi, I had class the last two days and did not have time to respond to your post since sitting through class is all I can do in a day right now .
> 
> Andros and I have had discussion on the board about the possibility of me having lupus a while back. Was referred to a Rheumy 3-4 years ago because of a high CRP level, all over pain and fatigue. Unexplained bouts of illness that come and go with stress. Rheumy was the worst appointment I have had in my entire life. She spent 5 minutes with me, refused to do any follow up lab work, (which is why I figured my doc sent me there in the first place). Pronounced that I had fibromyalgia and there was nothing she could do to help me.
> 
> ...


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## CA-Lynn (Apr 29, 2010)

I, on the other hand, have the best rheumatologist who spends whatever amount of time you need. He's highly regarded in the national medical community and believes in patient awareness, and as such, owns a medical website for patients.

So there are some really good ones out there.

There are some good ones, some bad ones. Sometimes you've got to kiss a lot of frogs before you kiss a prince.


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## lavender (Jul 13, 2010)

Same with endocrinologists


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## nikimcn (Oct 16, 2010)

well now that i have my labs back, inconclusive, i will need to start doctor shopping:hugs:


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## lavender (Jul 13, 2010)

How frustrating! I finally see my new doc on Monday. have waited two months for this. Wish me luck!


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## Andros (Aug 26, 2009)

lavender said:


> How frustrating! I finally see my new doc on Monday. have waited two months for this. Wish me luck!


I wish you lots and lots of luck Monday!! You "know" I do!


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## lavender (Jul 13, 2010)

It's about time! I am exhausted and everything hurts.


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## jumpinjiminy (Nov 27, 2010)

Good luck, Lavender.

My rheumy appt. wasn't that great. She said I didn't "look" like I have lupus, my history didn't look like lupus (no hospitalizations for major lupus flare ups), and I had to request in depth testing based on my ANAs always coming up normal.

None of the Ab titers were abnormal, but the C3 was. She also performed a urinalysis that showed WBCs. She said my complement was low because it looked like I had a UTI.

My doc cultured it and it came back negative. I sent her the results of the negative urine culture.

It turned out to be interstitial cystitis.

But that C3 level testing was instrumental in finding out what's happening is autoimmune rather than any of the other possibilities.

Don't give up, and don't settle for anything less than what you think needs to be done. It's your time and money invested in this as well. They shouldn't get to call all the shots, right?


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