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Long Story--Sorry What Questions Should I Ask the Rheumatologist?
I'm sorry for the long story--I'm going to try to sum it up quickly.
I only go to the doctor once a year for prescription renewals. This is probably because I was completely ignored 25 years ago when I went in multiple times for symptoms related to undiagnosed hypothyroidism/Hashimoto's. I was dismissed and even told by a male doctor that "women just forget what normal is like after they have a child". When pregnant with my daughter, and desperate to keep her, I asked the doctor to test my thyroid. He replied that he had no reason to. I insisted. He did. So you know the result of that. Fast forward. So during the past six years, when I go in for that prescription refill and one for high blood pressure, I have complained of chest pain when at rest or when lying flat. It is intense and scary. Waking up at night gasping for air. I of course have been dismissed. I was told that I could see someone about my anxiety. I am not anxious. One visiting doctor told me that I was just nervous meeting him for the first time and that was causing my palpitations. Last summer, I finally had to break my not going to the doctor rule when the rashes I had been experiencing for six years showed up on the soles of my feet and made walking nearly impossible. Evidently, it is psoriasis/psoriatic arthritis. I do admit that the delay in that diagnosis is my fault as I never mentioned the rashes--not being able to breathe seemed more important. I will say that I have switched to a female doctor who does seem to listen, but I simply don't know what to ask anymore after enduring years of near-retirement rural doctors.
Finally, my question for this post: the doctor ran an autoimmune blood test. Obviously, ANA was positive. But the Sjogren's b number was quite high. Anticentromere b antibodies as well. From my understanding these do not correlate to psoriasis or psoriatic arthritis. Last November they referred me to a rheumatologist who was booked out until May this year. So, I have that appointment next week. I am dreading it as you probably know by now, I don't have a lot of faith in doctors. Anyone have similar test results or any suggestions on questions I should ask?
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Boy, you’ve been through alot. Your story sounds so familiar. My family has so many autoimmune diseases; “mystery illnesses”that back in the day, so many doctors couldn’t figure out. So they dismissed us as hypochondriacs, depressed/anxious, busy young moms, etc. I am the youngest of 3 sisters at 67 & it took 8 long years & lots of Drs. to finally get my Lupus diagnosis. I seriously envisioned myself going back to all those doctors who dismissed me & yell, “You were wrong!!!” This was 30 years ago & since then, both sisters have also been diagnosed with Lupus & other autoimmune disorders as well as my 2 grown daughters, niece & nephew with all different age disorders such as Shogrens, crohns, & others. My daughters were witness to what I went through so we have taught them to be good advocates for their health & respectfully, fire doctors who dismiss you or won’t listen. Find one that will. I just got out of 2 weeks at Mayo in Phoenix in an autoimmune firestorm! My body created a new; Giant Cell Arteritis that made me very sick & dangerously close to stroking out & going blind. Now that’s a whole team of doctors that really listened. I feel very lucky that I got to be treated there. But the head of the team gave me a compliment & he said it helped them immensely with challenging diagnosis. Get a pad of paper & write everything down. List your health experiences/symptoms from past at least just a loose idea. Keep track of more current symptoms. Write down all your questions. Don’t hold back. Let them know everything even if it sounds weird or trivial. Once you get a diagnosis, learn everything you can about your disease. Knowledge is power and can take a lot of stress & fear down.
I’m happy to say that I am home getting better every day and still writing down issues, questions for all the different species I will have to see october next coming weeks especially.
I wish you luck in finding a doctor who can help. Keep searching because they are out there but may be an effort to find. Hope this helps a little. All the best to you!
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11 Reactions@intheorchard, I'm so sorry you have gone through so much. Praying for you.
I would ask the Rheumatologist to run a COMPLETE panel for autoimmune diseases AND a complete thyroid panel....not just TSH, T3 & T4 please or refer you to an Endocrinologist to have a complete Thyroid panel. Thyroid is so overlooked. Primary phyisicians usually will not run but 2 tests for Thyroid. Hashimoto's Thyroiditis was missed with me because of this until I went to an Endocrinologist.
Have a list of your most concerning symptoms in front of you and tell them your concerns.
Blessings & Prayers....
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2 ReactionsYour history and symptoms all could result from autoimmune systemic inflammation. Good to finally get that rheumatologist consultation.
You will have your lab redone with more specific testing
and HLA B 27. Rash is important in the clinical findings.
Was the psoriasis diagnosed by dermatologist?
Sjogrens can cause symptoms of spondylitis similar to
to psoriatic arthritis. Make sure the physical exam includes checking your scalp and finger and toenails for additional signs of psoriasis. As above bring a list and timeline of your symptoms. Rheumatic diseases can take a long time to arrive at an appropriate diagnosis and treatment. Make sure the rheumatologist gives you a follow up and not simply one and done and back to the primary. Photos of rashes can help if the problem comes
and goes.If Sed rate and CRP are elevated have your primary screen your cardiac risk profile. Psoriatic disease involves more than skin and joints. The most important goal is to have the thorough evaluation for Lupus. If you are not satisfied make the trip to a multi specialty clinic or university med center.
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2 Reactions@covidstinks2023
What is the treatment for Hashimoto Thyroiditis?
Thanks!
@momac59 I take Methimazole 5mg, have bloodwork done at Endocrinologist at least twice a
year of complete thyroid panel and ultrasound about once a year if they feel nodules. I could not tolerate the Synthroid, Armour or Low Dose Naltrexone. The group I go to not only goes
by your numbers but your symptoms as well.
Some people go gluten free and say it really helps them....it didn't help me.
It takes time to get your thyroid regulated. I felt worse before I got better to be honest.
Praying for you. Blessings & Prayers....
*There is a book by Izabella Wentz for Thyroid Protocol and she has other books. She was able to reverse her thyroid issues, but, I found it a little overwhelming with all the supplements, etc. There are some good takeaways from it too though.
@covidstinks2023
Thank you! I’m going to talk to my new Endocrinologist next week about this. I have a multi-nodular goiter that my other doctor has been monitoring for a couple of decades. This new doctor just took me off Armour Thyroid & switched me to Synthroid/ Levothyroxine. But I need a complete panel so hanks for that info!
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1 Reaction@covidstinks2023
Methimazole is a medication used to treat hyperthyroidism by reducing the production of thyroid hormones.
Are you hyperthyroid? Normally, people with Hashimoto's are hypothyroid. Is this some new protocol I've never heard of?
@redhen You are correct. I have subclinical hyperthyroidism as well. I go back and forth between hyper and Hashimoto's. Sometimes, Methimazole is used in this case. I should have explained this better and my apologies.
Blessings...
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1 Reaction@momac59 My apologies as I should have made myself plainer. Please forgive me.
I have subclinical hyperthyroidism and Hashimoto's Thyroiditis. Methimazole is used to treat
Hyperthyroidism. I go back and forth between being Hyper & Hashimoto's. Sometimes the
Methimazole is used for Hyperthyroidism and Hashimoto's short term. So, this may not be
a good fit for you.
Have you tried low dose Naltrexone? Personally, I couldn't tolerate it due to it giving me headaches, but, there is been success with it for those with Hashimoto's. Personally, I would
start low and build up.
Blessings & Prayers....
@covidstinks2023 Thanks for taking the time to clarify. That helps to have a good discussion with my endocrinologist next week 👍🏼😊