MCTD (Mixed Connective Tissue Disease)

Hi All, I am new to the US & I'm struggling to get to grips with the healthcare system & so I'm looking for any advice that you could share!
I developed an under active thyroid a few years ago, following pregnancy & was put on Levothyroxine. For several years, I have been experiencing a lot of symptoms - extreme fatigue, achy legs, weight gain, brain fog, numbness & tingling which were all dismissed in the U.K. as being connected to my thyroid issue. My TSH level forbthyroid is stable, so I couldn't get any further answers from my doctor.
Since coming to the US a few months ago, I have had some further tests which have identified a connective tissue disorder. I am convinced this is connected to my thyroid, but the doctor has referred me to a rheumatologist, who is not covered by my healthplan with United. She has put me on steroids in the meantime, which made me feel great for the first few days, but now all my symptoms are coming back.
Do I seek out a new rheumatologist? Or should I find an endocrinologist for my thyroid? Who would be the best to look at both possibilities? I've had lots of blood tests done already, so should I talk to a doctor online?
I'm living in florida, I've heard great things about Mayo, but I don't know where to start & I'd like to avoid seeing multiple doctors etc.
Any advice would be greatly appreciated.

Thanks

Jenny

Hello Jenny (@jennyw13) - welcome to Connect. This a great place to ask questions and get answers. I would definitely recommend contacting Mayo Clinic because they are good at diagnosing difficult and rare health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

You can find out more about billing and insurance at Mayo Clinic here: http://mayocl.in/2kk2hF8

Here is information about Mayo Clinic's Billing and Insurance:
http://www.mayoclinic.org/patient-visitor-guide/billing-insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

Hoping you get an answer soon!

John

Hello Jennyw13, its nice to meet you. it is very difficult waiting for the right diagnosis and care we need. Im sure Mayo would be a step in the best direction for you. Steroids have many side effects, unfortunately sometimes we have to have them. I see a rheumatologist and he is also my primary dr. Maybe you can ask yours for a referral to the endocrinologist. Hoping you get help soon and welcome ro the US.

I have lived 16 years with never knowing how I will feel tomorrow. I learned to give up many of my activites that I loved as it only made flair ups worst.
wish there was a better answer Good luck
judee

I had autoimmune and they were giving me high does of prednisone and azathioprine/cellcept. Get off the prednisone as it never helped me and after 3 years I went off it myself, slowly.... and no change except my hair was no longer falling out and I was left with bone damage due to prolonged use of high doses. It never helped me from the beginning and no matter how many doctors I would tell nobody but the lung surgeon told me to try to reduce this to 5 if I can. I did better than that and now its zero..... Question is.... Is it really helping you? Is there something else? I'm assuming with Lupus you are taking some type of autoimmune suppressant? My experience only but prednisone is NOT good when prolonged at high doses and you need to determine if it really is helping you. Only you can decide that.

Hello @kgoodwin9, thank you for sharing your story. For a lot of us prednisone is the magic pill but you are correct - the goal is to get off of it as soon as you can and if you can. For my first occurrence of polymyalgia rheumatica (PMR) it took me 3 years to taper off of it. I was started out on a dosage of 20 mg and it immediately took away the pain in my shoulders, arms and hands. It was in remission for 6 years but came back in the middle of last year. I was put on 20 mg again and I'm now down to 6 mg. I'm hoping I can get off of it before the end of the year but that in itself is a struggle. I was trying to reduce the dosage by 1 mg a month but the last 2 times I've tried to reduce it, the pain comes back. So, this next month I'm going to try 1/2 mg reduction and see how that goes.

I'm guessing the prednisone is reducing the inflammation in the joints and tissues which gets rid of the pain. I also try using supplements that help reduce inflammation but not sure how much it's helping.

I like your question - you are your best advocate and you need to determine if it really is helping you. In the end, only you can make the decision - it's your body. The only thing I would add is that you always want to make sure it's an informed decision and it's a good idea to have the discussion with your primary care doctor even if it's to use them as a sounding board. Asking better informed questions of your doctor will (or should) help them help you. If the doctors aren't listening to each other that's a real problem and I would be on a search to find one that did listen.

Hoping others will jump in her and share their story and something that might help.

John

I've had flare ups for years even with the positive Ana tests dr said it was fibromyalgia, been on cymbalta. I am 50 now and flare ups have worsened. I've experienced my worse ever this week with more pain than I've ever experienced. I figured that it was the hurricane stress and all the extra work boarding up my house. Last year I saw a rheumatologist and after all the tests and X-rays, told me I have mctd. Makes sense since my mom has overlapping diseases. Dr wanted to put me on Plaquenil and prednisone and I left there and ignored him since I didn't want my eyes to go bad and didn't want to be on prolonged prednisone. I got a massage last week and my body hurts more than ever. Think he was rough on me. Also, I hurt so bad Thursday I ran home from work to jump in a hot salt bath because I couldn't take the pain. I don't feel any better, I feel worse with deep pain, headache and nausea, red hot face. I think it's time I take this seriously now. My boss looks at me like I'm not really sick. When I'm down, it's at least 3 days or so before I can get up. I am going to start with eating healthier and taking care of myself with lots of sleep/rest. This is the worst flare I ever had and it's bad. Eventually, I may have to rethink the Plaquenil but I will try to stay off the steroids as long as I can. When the rheumatologist told me I had mctd I thought he said I had a connective tissue disease" and I thought, which one? That's when I thought it was a bs diagnosis but I looked at the paperwork and his diagnosis and did some research and now it all makes sense. The symptoms of the 3 diseases, same as my Mom, are exactly what my symptoms are and now I know what I have. I'm used to go go go all the time but with this disease you can't.

Hello @mariejk1,

Welcome to Mayo Connect. I'm glad you found us and I'm hoping you can find some relief for your pain through discussions with other Connect members. I know that stress can play a big part in making things worse and the hurricane stress must have been horrific. I am currently on prednisone for my second round with PMR. The first time over 6 years ago it took me 3 years to taper off of the drug. I didn't like taking it but it really did it's job of getting rid of the pain. With this second round of PMR I was again put on a dose of 20 mg which got rid of the pain and it's a little over a year and I'm down to 5 mg a day and hoping I can be off of the drug by the end of the year. My first occurrence was an eye opener for me. I let the pain get so bad before I decided to see a rheumatologist that I went from struggling to walk up the basement stairs to actually crawling and using a walker. In retrospect, I wish I had not waited so long before seeing the doctor for the pain. I am really glad you are being proactive, being your own advocate and learning as much as you can about your health problems.

I am tagging other Connect members so hopefully they will be able to share their thoughts with you. @faithandlove @snowaries @numby @xanderbam @powerofpositive @cindia1 @livingngrace @zbrooks @regeanna @jewel8888 @kariulrich @luladavis @dogmamat can you offer and thoughts or suggestions for @mariejk1

I would also like to share Kanaaz's (@kanaazpereira) post with you about Mayo's Connective Tissue Disorder Clinic which contains some good information:
https://connect.mayoclinic.org/comment/8328/bookmark/?ajax_hook=action&_wpnonce=653c67f631
John

Welcome to the diagnosis!! I struggled with fatigue all the time until I started listening to my body. I too was a teacher , volunteer over active person and my friends are having a very hard time with my need for down time. It's nice to have this site to help me realize I am not alone. If I over do it one day I really struggle the next day so I am working on setting up boundaries and learning to say no by prioritizing what the most important things are I need to do . I had low iron and b12 which I hope you have had checked out and now take vitamins to keep the levels up. I am gluten/grain free and that has also helped my energy levels. The mos t important thing is listen to your body,and try to stay on a regular schedule with lots of down time. Good luck.

I appreciate your input into this conversation, @wottone. I agree that learning to live within your limitations is an important part of part of living well with chronic illness. Thanks for your sharing your comments and what you have learned.

It sounds as if you have adjusted your activity level as well as your diet. It isn't easy to say "no" when others want to include you in activities that might not be helpful. Do you have any "words of wisdom" that you would like to share on how you approach these situations?

Teresa