I haven't posted because I have been so overwhelmed with everything that is going on and today only got worse. I decided to share with you as maybe you can relate, or maybe I'll be boring you to tears ;)
Tuesday I went to the Rhumey and he is calling my disorder a "connective tissue disorder" and he said that he wants to be very thorough before prescribing meds etc...well, with ALL of my rashes and this time I had pictures to prove them all and my complaint about the extreme itching he is concerned and is having me do an abdominal catscan and he is looking for lymphoma...SIGH...that is CANCER WTH?
THEN....I have been having problems with my thyroid, sluggish, hair falling out, cold all the time, no memory ya know..the signs of a slow thyroid? Well, apparently my thyroid is EXTREMELY high and the doc felt my neck and says..."I want you to have a scan TODAY" so..I had to go to the hospital where they did the iodine dye test...good grief IM EXHAUSTED with all of this....so, why did he want the scan? Did he feel something??? He did say that my thyroid has to come out..FML!
I have come here to vent, and to let a few of my tears down...I am new into this lupus thing and I am already sick of it, I Know...welcome to the club!
The endo did confirm LUPUS...<starting to hate that name>
Well...I am off to go rest I've been gone ALL day and I need to relax~ hugs ya all!!! xo
I am so sorry for all you've been through today. Lupus is not an easy journey...and the road is long and unsettling. I've gone though the gamet of tests, iodine bone scans, expensive blood work..and told I have lupus, connective tissue disease, and others. And I wish I were there to give you a big hug because I truly feel for you. It is scary and our minds go to the worse thing it could be...we're frightened and often don't hear everything. Most of the test are to rule out other things and often it is just a routine with some med professionals.....and it is OUR LIFE....OUR FUTURES.
I share all this with you to say, it still may not be conclusive, so try to take a deep breath, cry and hold near the ones you love. I believe many of the doctors are as confused as we are about what is going on. They have good hearts and try, but they are not GOD and don't know everything.
My prayer is that you will get some answers soon and that your heart will be at peace and take one day at a time. Lupus patients are some of the strongest people I know. We love you and will be here for you.
I'm unable to be of any practical assistance to you unfortunately. I do have an inkling as to how you may be feeling. It really is a shite of an illness isn't it?
All I can add is for you to keep taking deep breaths, keep asking questions of your specialists & keep researching yourself (if you wish to).
Bear in mind that Lupus contributes to mental confusion & memory issues so it can be double difficult to cut through the haze & absorb all the information thrown at you.
its Friday here in Aust, I hope you have some relaxation over the weekend & that next week bring good things for you. Ciao for now Kaz xo
I'm with Faye, I think your doc probably just wants to rule things out, rather than suspecting something. Some of the docs are too proud to say "I don't know", so they do test instead. My husband tells me" if you pray - why worry, if you worry why pray?" Take it one day at a time, and deal with today. I understand your fears, and try not to dwell on what ifs? They can drive you crazy. Love to you, Trisha
Dear Mia,
What a horrible day!!! You are so entitled to shed a few tears. Those are all scary words and thoughts that will have your mind racing. As hard as it is try not to read too much in to it until you have some absolutes. The only comfort I can try to offer is that my sister in law had her thyroid removed a few years ago and does not seem to have any issues with it. Get some rest!!! Let us know how your tests go.
I have been where you are before! It is a hard journey to go through! My thyroid had to come out. I have been tested for lymphoma and had several CT scans. It sounds like your doctor is doing his job. I know you are frustrated and I remember that feeling. There is a lot that must be ruled out first, but that is a good thing because once it is ruled out then there is no other option but to treat the lupus. Remember the lupus medications can cause other things, one of them being cancer! So in my book it is a good thing that he is completely checking you out.
I agree with the above members, have a good cry and then stay strong on the journey it will come to an end with all the testing I promise.
With regards to the thyroid I would have the endo make the call about removal not the rheumy! I had nine growths, enlarged goiter and a sub-sternal goiter. My blood work however was always normal. Because my thyroid had a mind of its own the doctor wanted it out. It was all being for cancer and the pathology came back that I had hashimoto’s disease. My hair falls out and I have extreme fatigue and Brian fog and my thyroid blood work is fine! So it has to be the lupus that is causing my systems!
Please take care and prayers are going up for you!
Sorry to hear you stressed mate but venting it all out will do you good besides knowing you have our full support on these issues.
Your rheumo os calling it "connective tissue disorder" at the moment because he's covering all avenues first and that will rule out certain issues if you have'nt got them.
Plus i know it's horrible being confirmed with LUPUS but now you know what your actually dealing with..because the last few weeks as been terrible wanting to know one way or another.
Mia don't worry where the lymphoma is concerned because if you do have it can be none cancerous, i have Lymphoma issues and when mine have been tested the results have come back negative regarding cancer so don't get looking on the black side as it won't help you...plus getting stressed won't help you symptoms one bit.
He wanted the scan to see what was going on with your thyriod being high in reading, as you can have many issues which "Deenie" as stated as i have thyroid trouble and i'm on thyroxine but the scan must have shown nodules or somethingelse which the link below states and that's why he wants to remove it and then you'll still have to take a thyroid replacement tablet or hormone replacement for it...this link belwo explains it for you.
I am so sorry you are going through all this. And how dare your doctor tell you that your thyroid must come out without telling you why he suspects that is the case. You are not a child that needs to be protected from the truth but a grown woman that needs the truth to make informed intelligent decisions. Can you tell this is one of my pet peeves *sigh* He is probably trying to confirm that the thyroid is inf lammed/infected and needs removing. However, surgical removal of an in flammed/ infected thyroid isnt the only treatment option. Getting your current flare under control may indeed stop the infection or inflammation making surgery unnecessary. Take care I hope all goes well. HUGS
This is the best place to come to! I have had so much love and support from all of you wonderful people since I joined just months ago. We are the only ones that understand what we're going through. We can cry, vent or share information here and no one will tell us to try a little harder to be nice or I don't understand you. I also have Mixed Connective Tissue disease along with the Lupus and this week was tested for RA. When I mentioned this to my husband that I had bloodwork done for it and was scared all he could say was that I needed to accept it and move on. This is because he doesn't understand what it's like to welcome yet another thing to have to deal with on top of everything else. I DON'T WANT IT but have no choice and I don't want to accept it - I want to fight. I think if I did just "accept it" I would be alot worse - this way I strive to stay as strong as I can. So Mia - STAY STRONG & FIGHT! We love you
Mia, Don't put dementia on yourself. Stress and all you're going through will throw your mind out in left field. The more you worry and think about it, the worse it becomes.
With the weekend on us. Try to take a break and do something different to break the cycle of thoughts going round and round.
I keep a tablet handy to jot down questions to take to my doctor. And when I go in, I have a typed copy for him...and myself. That way I make sure I ask everything I want to know. And a doctor friend told me to do this....and not to let him leave until every question was answered to
my satisfaction.
When I first joined LWL, the members helped me with forming my list of questions through websites, etc. Ask questions if you need help. We are here for you. Hugs, Faye
Well said Faye! I know sometimes it's hard to not think about it - especially during flares - or even just "off days". I try and keep my mind distracted as much as possible - it does help! And yes, don't let that doctor out of the office until you are satisfied! You are the patient and at the $400 some dollars they charge they best spend as much time as you need them!
Enjoy life a day at a time and make the most you can when you can.
Happy Friday everyone! I want to say how blessed we all are to have such a wonderful group of people here! I just realized that we literally have worldwide support! We have the UK, Austrailia & South Africa from what I've seen. Let's all say where we're from, what day it is and what time it is so we can see how big our circle really is and plus it'd be a little diversion too!
I am in Santa Fe, New Mexico, it is Friday the 26th and right now it's 2:03 pm. Next?
I'm sorry to hear all that I hope you feel better soon . weel I just had My thyroid surgery and I think I worse now , I been home sick they removed my thyroid due to a non milgant tumor hair falling out more I having trouble with the calcium after the thyroid was taken out hair falling out more cold feeling is worse and now I having high blood pressure.
You can vent here anytime. Your story sounds so like mine. Being in the field of nursing (RN) I use to let those tests bother me too. They tell you all the worst things it can be first. Dr's in this healthcare system are taught that way. Then, I wised up. Got educated. You would have thought that I would being an RN in all, but I worked trauma. Thyroid issues are tricky. Scans are best. Think of it as the gatekeeper to all things hormone. Not only that, it filters a lot. If you have any allergies, or any inflammation of white blood cells- it can swell, RBC can cause it to be underperforming. Also, if you have any other diagnosis it can affect it. There also is a rare form of adrenal CA- hence the abd ct. That form of CA can mask all the same symptoms of Lupus & others. It is best to have a baseline scan. Lymphoma can be best read in lab reports. I would get a second opinon on taking that thyroid out. It is there to regulate so many things and it could cause your Lupus to flare up worse if it taken out. Ok, the big question is do you know your lab values? Do you understand them in relation to Lupus? It is scarey, I know. Keep a notebook and copies of those labs. They are VERY important, especially DNA Stranding. Every Dr you visit should get a copy of those labs, and everytime you get them done. Keep them all in the loop. Take a deep breath and exhale. Research in small doses, so it doesn't stress you out. These are all the things that learned. FYI- connective tissue is the new word for lupus -or at least that is what my Rhumey told me-LOL like that makes it better..... Good Luck, let us know how your doing ok? BTW I find throwing things at my block wall helps too!
Saying prayers for you tonight-my friend. Your in the right place. Lots of good advice here LWL. I love it. I found this site while in the throws of a flare up and crying 18 hours of the day. Friends here accept and love you without any conditions attached. hope you find good health soon :-)
YW. When I let my endro scare me, I had my thyroid de-actitvated with radio active iodine. Then it caused a lot of other issues. I will never, ever go to that speciality again. My Rhumey also double board cert ( is an immun). He worked at Mayo clinic in MN. I see a pain spc and my pcp. I learned over the last 20 years. I am glad I helped. Plaq helped me for years. Gotta run... daughter is home..
Hi , huges and kisses for you. It's going to be okay . That's the best thing to do is rest after all that !!! Smile . We are here at any time to do just what you did - VENT !!! RERLAXE and get some REST ... Beverly L.
I hope your keeping ok today besides having a pleasant weekend.
Using Biotin is good for your hair apparentley...i use elvive it does'nt stop my hair coming out but it helps with the white flakes i suffer with from my head.
Hi Mia, I am typing for my lil brother who went through hell and back before he was told he has CNS LUPUS that has now attacked his brain, body trimmers,seizing,headaches,loss over 40lbs now weighing less then he did in high school hang in there. Its,ok to voice that your scared. In fact if a person can’t understand your pain then they need not be on this sight. We are praying for you and hang in there with all the tests that has to be done. One day at a time. Dre Mathews.