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Old 11-25-2010, 10:24 AM   #1
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I FINALLY FOUND OUT WHAT IS WRONG WITH ME...

Sorry ladies........I just mad a HUGE long post and freaking LOST it..trying t copy and paste off a different tab...I'm too tired to do it again...

long story short..This last Saturday i got the scare of my life when after x-rays I was told I had lung cancer...but then after the radioligist looked the film though it might be Sarcoidosis of the lungs...This from a rhumatoligist who x-rayed me to find out where my arthritis symtoms came from...he decided to x-ray my chest to because I was VERY short of breath.

I was sent for an emergency CT scan where it looks even more like sarcoidosis of the lungs......lung biopsy with make sure its NOT cancer....thats yet to come...

To say the least..... I've been a freaking mess.....

Was started on prednisone yesterday.........hopefully will be able to breath and walk better soon...

Here's a couple links to what Sarcoidosis is.....I've got it as a triple threat, lungs, skin, bilateral joint pain and swelling...worst cast either of my doctors have seen it their combined medical years.

Sarcoidoisis, A Medical Mystery

Sarcoidosis Signs & Symptoms - Sarcoidosis - Pulmonology Channel

And this is a case study similar to me except my ankle and feet swelling is 5times worse and she had no lung symptoms...
sBMJ | Clinical case series

Lethal Lee you were right my CRP was very elevated, my latest bloodwork 10days ago showed it at 18 which was way higher yet....

Please keep your fingers and toes crossed for me....

thanks...
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Old 11-25-2010, 12:17 PM   #2
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Old 11-26-2010, 05:38 AM   #3
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Old 11-26-2010, 11:07 AM   #4
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Best of luck, my stepson has this also..he's a twenty year lifer in the Navy....if he does his job, he almost HAS to stay on steroids at all costs. I have an autoimmune disease 'like it' (and for many year I was misdiagnosed with sarcoidosis) called Sjogren's. Best of luck that you'll feel better once you 'dampen' the autoimmune reaction!

Pam
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Old 11-26-2010, 11:55 AM   #5
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Thanks ladies, I am so new this I am stll feeling completely overwhelmed..
I heard that it does sometimes go away on its own...and stay away. i;m hoping for that but as my case is sooo bad.......I don't think its very likely. Crazy immune problems... Sorry about your son Pam.. i've heard its dangerous to be on the steriods all the time... thats been one of my concerns. After two days on the prednisone now though and I do seem to be breathing somewhat better...thank god. I was afraid there I would be having to go to the hospital for oxygen soon.

I've never heard of Sjogren's Pam, I will read up about it.. I hope your feeling better too.

Seems funny now looking back.....all my healtlh problems seemed to develop after my thyroid quit 19yrs ago...
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Old 11-26-2010, 12:00 PM   #6
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I am so sorry! I will go and read up on this. I'm so glad, however, that you have a diagnosis!
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Old 11-27-2010, 06:00 AM   #7
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Yes, it's difficult to get a diagnosis! I stay on steroids, both inhaled and oral for my PAN (vasculitis) and HIE (autoimmune lung) and Sjogrens. Many who have it have periods of remission (sometimes years long). His flares when he gets over tired, and when he isn't making sure he's eating well and getting exercise. He's still young enough where he knows what makes it flare and can control a little of it.

Pam
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Old 11-27-2010, 10:35 PM   #8
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i am trying to read up and educate myself on my new and debilitating disease...I kinda overdid it today moving a trampoline outside with my son...especially when I've been pretty much in bed for the last 6 weeks..was just so good to feel good enough to go outside.. now my lungs are sort of burning because I actually used them..and I think they are still healing.
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Old 11-28-2010, 11:12 AM   #9
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Sending prayers. ((HUGS))

My sister has this..
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Old 11-28-2010, 11:26 AM   #10
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Lori, how was your sister diagnosed? how long has she had it for? How does she deal with it? What is the severity?... I know, alot of questions but I'm so very curious about how someone else has dealt with it...
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Old 12-05-2010, 06:18 AM   #11
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Sorry to hear about that,but it sounds better than the first diagnosis. Bernie Mac had that. I post on another forum with a member who has had it for almost 20 yrs, but she hasn't had any problems arise from it. She's had more problems with her thyroid than the sarc.
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Old 12-05-2010, 07:29 AM   #12
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About 80% of those with sarcoidosis and/or Sjogrens (and several other autoimmune diseases) ALSO have Hashimoto's hypothyroidism.

Yanno, you CAN have more than one autoimmune condition...I have four. Couldn't figure out WHY I felt so awful with Sjogren's, until I found i also had Hashimoto's. So, a LOT of my symptoms were from thyroid, not Sjogrens.

horseluvr, you need to be checked TPO antibodies to see if you have Hashimoto's too (and even if it came back low...you should check again in a year or two).

Pam
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Old 12-05-2010, 02:24 PM   #13
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I will be sure to talk to the specialist on the 18th of this month about that and ask for my TPO antibodies to be checked. Do you have a blog or anything of the like I could read Pam? I'm also looking for a support forum for people like me with autoimmune disorders.

I can't imagine having 4 autoimmune conditions...........holy crap. How are you feeling lately? What keeps your engine running at its best with all you have to deal with? What craps you out?
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Old 12-05-2010, 05:27 PM   #14
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I don't have a blog. I'm too busy with incoming email...ha ha!

I feel good cuz I'm still alive. Not many with HIE who are. (Hyper IgE Syndrome). My engine runs on 'living' because I'm pretty strict about what I eat, about getting enough T3 thyroid hormone (not just T4).

I'm always busy. I think maybe that's the key. I know if I start to 'dwell' on how I feel...I kind of go downhill a bit...so...busy keeps me going.

When I first learned that I had been granted the family curse of autoimmune diseases I had a really big knee jerk reaction to it. Then I started meeting people with...worse things than I...and I have had great 'luck' in getting doctors who are very good at managing my processes (without stuffing me full of every med in the world, lol) and others who have things worse than me...well...can't help but feel fortunate that I wake everyday to a whole world full of people who are very nice...like you....it's what I look forward to.

Pam
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Old 12-05-2010, 06:12 PM   #15
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Hang in there.

Quote:
Originally Posted by horseluvr View Post
I will be sure to talk to the specialist on the 18th of this month about that and ask for my TPO antibodies to be checked. Do you have a blog or anything of the like I could read Pam? I'm also looking for a support forum for people like me with autoimmune disorders.

I can't imagine having 4 autoimmune conditions...........holy crap. How are you feeling lately? What keeps your engine running at its best with all you have to deal with? What craps you out?
I just wanted to say hang in there. prayers to you.
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Old 12-05-2010, 06:17 PM   #16
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Pam

Quote:
Originally Posted by nonstickpam107 View Post
I don't have a blog. I'm too busy with incoming email...ha ha!

I feel good cuz I'm still alive. Not many with HIE who are. (Hyper IgE Syndrome). My engine runs on 'living' because I'm pretty strict about what I eat, about getting enough T3 thyroid hormone (not just T4).

I'm always busy. I think maybe that's the key. I know if I start to 'dwell' on how I feel...I kind of go downhill a bit...so...busy keeps me going.

When I first learned that I had been granted the family curse of autoimmune diseases I had a really big knee jerk reaction to it. Then I started meeting people with...worse things than I...and I have had great 'luck' in getting doctors who are very good at managing my processes (without stuffing me full of every med in the world, lol) and others who have things worse than me...well...can't help but feel fortunate that I wake everyday to a whole world full of people who are very nice...like you....it's what I look forward to.

Pam
I just would like to say hang in there Pam and good luck in your journey. do you have any other plans.
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Old 12-06-2010, 05:45 AM   #17
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Right now..I'm trying to get a four year degree in two and a half...that's my plan...and it means studying/reading/catching up about 10 hours a day. And 'retirement' looms on the horizon...for DH (and me, but I want to keep working for awhile if I can, in the nutrition field).

Pam
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Old 12-06-2010, 11:37 AM   #18
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Good for you Pam, you must be so incredibly busy...wow! I admire your strength!

I'm finding myslef a little information overwhelmed....trying to be a sponge when in comes to any autoimmune information. I'm going to try to talk to my doctor about my THS levels... what are good levels for me or not. I did have my Thyroid tested .. ( I'll cut and paste my results& hopefully it works)

I take 3, .075mg synthriod tablets daily.... 225mg.

Ok, here goes: TSH~ 1.91 ------------------------------------ 0 .30-6.20 mU/L
T4 Free ~ 18.3 -------- ---------------------------- 10.0- 28.0 pmol/L
T3 Free~ 4.0 ------------------------------ 3.8-6.2 pmol/L
FSH~ 6.0 ------------------------------- U/L (After hysterectomy.)
Vit B12~ 563 ----------------------------- 200-900 pmol/L
Ferritin~ 91 -------------------------------- 15-100 ug/L
CRP~ 11 ------------------------------- 0-10 mg/L

glucose fasting~ 5.3 ----------------------------------- 3.3-6.0 mmol/L
Creatinine~ 53 ------------------------------------ 50-110umol/L

I was told my CRP was elevated which it was ... a blood test I had done after this one was a CRP of 18... I was shocked my doctor wasnt worried about it at 11... I have NO medical training and it concerned me that I might have an infection that was causing all my horrible and debilitating symptoms.

--Thank you the Pam and theothertwin for your encouraging words, I am trying very hard to keep a good attitude, which is been great so far, last night though I snapped at my son and husband which is REALLY unusual for me.. I am usually so even tempered and patient. I was feeling so agitated, stressed, overwhelmed, almost shaky. Later I looked up the side effects of the prednisone I am on and found out it can cause insomnia, mood changes, personality changes, euphoria, psychotic behavior, or severe depression. It may even worsen any existing emotional instability in some individuals.

This worries me deeply...especially because I have to continue to take this for my physical symptoms to lessen... I am going to have to be careful and monitor my emotional state closer. Long term effects of prednisone are NOT good but what exactly is considered long term? I am talking 30mg of apo-prednisone daily(been taking it for 12 days now) and will continue to take it until after the 18th of December... I have heard of others taking every other day... I will talk to my doctor and see if thats something that can work for me, it seems to lessen the physical symptoms.

In the meantime I am trying to keep busy, read LOTS and participate fully in my recovery. It feels so good to be able to walk around now without constant pain in my joints, I find that sometimes I overdo it a bit and pay for it later but it just feels so good just to be able to do things!! I cant wait to be able to get back into an excersise program again to boost my weight loss more...

Take care of yourself Pam, your such an inspiration.

Good luck to you in your future endeavors

-Lisa
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Old 12-06-2010, 04:55 PM   #19
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Hmm....clicked submit once, and it posted twice...sorry

Last edited by mimers; 12-06-2010 at 04:58 PM..
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Old 12-06-2010, 04:57 PM   #20
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Hi Lisa...don't take my information as "fact", but in my reading over the years, it seems to me that the "safer" Rx to take for women in place of prednisone is something like prednisolone??? Have you checked that out, or does anyone else remember reading this? Seems to me that it was in a few places of past reading for me. It may be totally "off", but just thought I'd mention it. I'm not sure and probably shouldn't even write this but it's just something my brain said to "toss it out there" and maybe you or Pam (or someone else) would know.

Re: your tests. It looks like your FT3 could use some help...does this doc believe in helping you with something that contains T3 in it (like natural thyroid, or adding in T3/Cytomel to your Synthroid???) Raising those levels would give you more energy, but I see you're in Canada....hmmmm.....maybe Maile will come chime in...she's a smart one, and she is also in Canada and knows the system there well.

It's wonderful to read that you are trying to stay on top of all this...reading and learning. Nobody is a better health advocate for you than *you*. I'm glad you ARE feeling better. It's a roller coaster ride, for sure.

Your CRP reading would be of concern to me too....that's one thing my doc always said shouldn't be elevated. (inflammation???) I'm not sure what you to to lower it though. What a lot of help I am NOT!!!! Geez.....wish I knew more about your issues to be able to offer some help. But I'll be a cheerleader to wish you the best of everything!!!! And for your knowledge to grow and your appointment will give you more answers. I'm pulling for you!

~Michele
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Old 12-06-2010, 06:23 PM   #21
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I like medrol. It's just another 'brand' of steroid? I have to be on daily (120mg. right now, I've dosed down a little bit). I can't do prednisone...they write for Medrol (medroxyprednisilone?). And it's a little 'easier' on me.

Doesn't matter where the TSH is. (sorry...but that's true). Mine has to be WAY under a one, and I need my FT3 up at the 3/4 to top of range to feel well. I WOULD (me, yep, me, I'd do this...) ask the doc to consider dropping the T4 back to 200mcg. for now, and adding in 5mcg. Cytomel am, and early afternoon. Sarcoidosis wouldn't hurt the joints so badly if you had a little T3 incoming is what I think about that. (And my Sjogren's acts up BADLY if I don't get incoming T3 as well as T4...all my doctors know this....ALL, even the rheumy, the immunologist, etc.).

My CRP was VERY elevated because of my PAN (polyarteritisnodosa...much like sarcoid symptoms) until I got it under control with the steroid therapy. If it, and the Sjogrens is kicking up...my CRP will elevate again. Ask you doctor to explain WHY this happens with inflammatory autoimmune conditions so that you understand that. My CRP has been well over a 30 in that same range when I was in hospital with a flare up of Sjogrens, PAN and my hyper IgE.

There are things that doctors can do with hormones that help symptoms of other disease...if you don't have enough T3, and the TSH isn't low ENOUGH, than the thyroid symptoms will override the others...and you won't know WHAT's kicking. HTH

Pam
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Old 12-08-2010, 03:47 PM   #22
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Mimer's, I've contacted Maile through PM, your right, she's very helpful and has given me alot to go on here in Alberta. thank you for suggesting her.

Pam, I've written down what you've said and will take it to my doc, I think as well I'm being given too much synthroid. Even having a non-functioning thyroid like me, its a VERY large dose.

I feel like maybe there's alight at the end of the tunnel for me now.....maybe..
I'v e been feeling so bad for SO long I had forgotten what's it like to even feel a semblance of normal...which I think is what I'm starting to feel now, even in just brief interludes.....lol.

I added a pic of me to my profile that I took with webcam last week, first time in a LONG time my skin has been clear enough to do that, the skin lesions of sarcoidosis are terrible. Now I can show you who your talking to.

Thank you, thank you, thank you, you wonderful ladies who have taken the time to take an interesting in my life.... as a stranger to me you didn't have to do this but you all have and I think the world is a better place thanks greatly to people like you

lisa

Last edited by horseluvr; 12-08-2010 at 03:53 PM..
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Old 12-08-2010, 07:19 PM   #23
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Well, at least you're beautiful! (That'll make up for old someday, ha ha).

I do have a list of Canadian doctors who prescribe T3. I'm quite sure Maile would know the list though, so all you'd have to do is ask.

We're not strangers anymore....

I rarely do face pictures. I have pretty deep scarring (removal of parathyroids, and all my salivary glands due to calculi and Sjogrens). I get what ya mean. And I get raw, open sores (herpetiformis) from my IgE condition (HIE) when I react to whatever is in the air...I know what you mean. If I have no breakouts, it's a good day!

So glad you've made contact with Maile...it's great to have someone in Canada who 'knows the score'.

Pam
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Old 12-10-2010, 03:50 PM   #24
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@ Pam, your so sweet:blush:

Stuggling with the weight loss, Before I knew what was wrong with me I went off my LC WOE because I was worried maybe I was lacking some critical nutrients or vitamins and thats why all the swelling, pain, ect... As of Dec 3 I'm back on track but unfortunately in that month I put back on 13lbs Now being on prednisone even with Low Carbing my scale has only moved 2lbs downward....mind you I AM eating ALOT of sunflower seed in the form of spitz, likely more than a bag a day. 227g bag. I used to smoke but quit about 6 weeks ago...never to go back. Thats why all the spitz... the sodium is probably not helping, the carb count is 6carbs per 2/3 cup... and 630mg sodium for the same... Gotta figure out a snack thats lc and healthy that I can munch on constantly in little bits.
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Old 12-11-2010, 07:53 AM   #25
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do you like spinach? there's a ton of recipes for spinach chips (dried seasoned spinach) baby spinach has 2 g carb in 2.5 cups
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Old 12-11-2010, 09:26 AM   #26
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Really??!! Wow, never heard of such a thing! I will search it up on the board, thank you so much Maile That could really work for me.
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Old 12-11-2010, 07:12 PM   #27
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Can't find any recipies for spinach chips yet...found some dehydrated kale recipies on google. Anybody who's got some or know's a thread with the recipe, would you be able to post it?

thanks so much!!
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Old 12-11-2010, 07:56 PM   #28
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I just googled spinach chips and it gave me LOTS of sites!!!!
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Old 12-11-2010, 08:53 PM   #29
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wow! your right! I previously typed in "dried spinach chips recipie" guess I shoulda just kept it simple, lol!!
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Old 01-13-2011, 06:45 PM   #30
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Well, now that we've sort of figured out whats wrong with me they've got me on prednisone for awhile to take down my swellings in my lungs and such. Side effect though.........weight gain 26lbs gained back so far....... Saw the doc again yesterday and talked to him about my thyroid and he finally agreed to add T3 to my dosage. Soooooo now I get 175mcg synthroid and 25mcg cytomel (t3) Been on this for two days, we'll see how I feel soon I guess. Hopefully it will help with how I've been feeling, energy level, ect... Got a BAD chest cold right now and went in right away to the doctor and he prescribled biaxin antiboitic to be taken for 7 days so hopefully I'll feel better soon, right now it feels like I'm ripping out half my lung whenever I cough
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