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Heterogeneous Hardships

A little over a year ago, I had symptoms of sweating, racing heart, heart palipatations, anxiety and problems sleeping. I brought this up to my rheumatologist and he tested my thyroid levels. A day or two later he called me back and said I was experiencing a serious condition called’thyroid storm’. I was put on anti-thyroid medication and beta blockers immediately. It was a frightening experience. I also had a thyroid scan and ultrasound done at this time where they found some nodules. One nodule in particular is 1.3 cm and it’s unknown if it’s a lymph node, parathyroid adenoma (benign) or exophytic nodule which potentially could be cancerous.

Today (a year later) my thyroid levels are back to normal, but my endocrinologist would like to have another ultrasound to see if the nodule has grown. I felt a lump on the side of my neck the size of a pea and I have yet to find out what it is.

My doctor was saying my hyperthyroidsm happens as autoimmune, but is not related to my Rheumatoid Arthritis. She doesn’t know what caused my thyroid levels to rise, but she doesn’t rule out the possibility that my biologic medications could play a part. I’ve been on DMARDS for 10 plus years and it’s scary to think that they could be causing damage or affecting my immune system in this way.

I’m frustrated that health care professionals don’t seem to know what causes most diseases anymore, and only know how to treat them and therefor don’t have a cure.
Does this all boil down to money?

I sense that my trust in health care professionals these days is rapidly decreasing as no one seems to care to find out answers especially when dealing with RA. It’s either too complex or it just is what it is. I sometimes feel like a hopeless case and I don’t have any team players to back me up and try and figure it all out.

I’ve been fighting RA for twenty years mostly on my own and I’m getting tired. It’s always easier fighting a war with another ally. I have yet to acquire fellow comrades in my life to help win the battle. I’m in need of guidance and support to remain resilient, fearless and hopeful.

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Comments

  • Kat
    5 years ago

    I would definitely try to find different doctors if you can. There are a lot of healthcare providers out there who sincerely care, and when you find them and they work with you it can almost bring you to tears.

    I wouldn’t be surprised if the doctors also get disheartened that they want to and yet can’t help their patients because they don’t know what more to do. So much of RA is trial and error. The hardest thing is to keep trying but like others are saying, this site is a wonderful place to find community and understanding, as well as hope. Keep looking, and hang in there. You’re not alone! – Kat

  • Mariah Z. Leach moderator
    5 years ago

    Hi Mallorie ~ Thank you so much for taking the time to share your story. It can be frustrating to try to figure out how to manage multiple conditions – I have experience with RA and Hashimoto’s thyroditis myself. If you can, I would encourage your doctors to talk directly to each other. You are not a medical professional so if your rheumatologist is able to speak directly to your endocrinologist perhaps they can work together to come up with the best option for you. In the meantime, I am glad that you have found our community. We understand what you are going through and we are here to support you. Hang in there! ~Mariah~

  • Mallorie author
    5 years ago

    Thank you for the support! Often times, it’s not easy to think clearly when you’re in pain and I often times get easily overwhelmed with medical information. Today my thyroid doctor’s nurse called me back for test results. She had a very brief and rude manner. I didn’t let her get off the phone until I had my questions answered, but at the same time I felt like she didn’t care. Which I’m sure they have so many patients it’s hard for them to care for each patient, right?

    Thank you, Mariah! You’ve been such a wonderful source of strength and support so far! I will be definitely taking your advice.

  • Kelly Mack moderator
    5 years ago

    Hope you find support and information here in our RA community, Mallorie. It can be a hard and lonely road, but here are a lot of people who have been through similar challenges. I also have other autoimmune issues in addition to RA and wonder if they are connected. And I have family members with other autoimmune conditions. Science hasn’t yet figured these things out, but hopefully they will eventually. Hang in there. Best, Kelly

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