Still Undiagnosed

Posted by concernsinphoenix @concernsinphoenix, Jul 28, 2022

About 7 months ago I started noticing numbness and tingling in my right hand and some discomfort in my right shoulder. I went to my PCP who thought I might have carpel tunnel and recommend physical therapy. By April the numbness and tingling was both hands, both feet and occasionally my thighs. I was also feeling fatigued and increasingly anxious. The PT didn’t seem to help anything. My new PCP (the old one left) thought I might have fibromyalgia, she ran a rheumatology blood panel to rule out an autoimmune, but the panel seemed to indicate a positive ANA and RNP. I received a referral to rheumatology to be evaluated for mixed connective tissue disease. 6 weeks later I see a rheumatologist who immediately tells me that she doesn’t think I have a mixed connective autoimmune, that the labs were very borderline and she doesn’t trust the lab. She wants to run more labs. Three weeks later she says these labs confirm that I don’t have a mixed connective immune, but they show elevated thyroid antibodies, particularly anti-thyroglobulin 70.0 IU/mL & anti-thyroid peroxidase. I ask what this might mean, but don’t get a satisfying answer. Another new PCP (another one left) runs a full thyroid panel. My TSH is 2.66, T3 Total is 96, T4 is 7.1, all within normal ranges I’m told. I have some neck discomfort and intermittent mild collarbone pain. I’ve also noticed some numbness on the left side of my face, mostly my lips and more recently jaw tenderness under my ears. I have some history of teeth grinding. I’ve also noticed some air hunger and hoarseness in the last month or so. Could I have hashimoto’s? I’m also having a thyroid ultrasound tomorrow. I had to push for this, the doctors do not seem concerned. Thanks for any input.

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Colleen Young, Connect Director | @colleenyoung | Jul 29, 2022

@concernsinphoenix, how confusing and frustrating. While some autoimmune diseases have been ruled out for you, it sounds like autoimmune is still on the table. You might find this discussion by @becsbuddy to be helpful:

- Tips for Getting a Proper Diagnosis of an Autoimmune Disease https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/

Has Hashimoto's been discussed with your rheumatologist?

concernsinphoenix | @concernsinphoenix | Jul 30, 2022

Thanks for the response, it felt like the rheumatologist I saw just wanted to pass me back to primary care when the mixed connective tissue autoimmune was ruled out. I’ve seen two new primaries since, one was very dismissive and the other seemed overwhelmed, told me that she usually treats one issue at a time. I told her about my neck discomfort and elevated thyroid antibodies and asked if I could get a thyroid ultrasound. She agreed and ordered this, but when I got to the imaging place yesterday they told me that they could only look at my “neck” because the order didn’t specify the thyroid be imaged. How would I know that neck (which the order said) wouldn’t include the thyroid? It’s been very frustrating.

linh | @linh | Jul 30, 2022

I can share my experience with some of your symptoms which may or may not apply to you at all. A ENT doctor told me to drink warm fluids in the morning, this alleviated my hoarseness. That and sleeping on my left side for the first two hours of sleep. Discontinuing a daily baby aspirin ended my air hunger the very next day (but please note a E.R. Attending told me to stop it after a work-up). I found a over the counter medication to be the likely source of my air hunger.

I had a assortment of alarming aches, numbness etc. and I have come to believe in my specific case the underlying cause was osteoporosis. I have been doing the Alexander Technique to improve my posture and movement (I've also increased my calcium intake and will be starting medication specifically for this condition soon). A DEXA scan or (REMS Echolight, which unfortunately doesn't have the seal of approval in our mostly conservative practices yet) will reveal bone density.

My understanding (from having hypothyroidism) is whatever thyroid hormones you currently have on board, they cannot work properly if Vitamin B-12, Folate, Vitamin D, and Ferritin are not in optimal ranges. For this reason it is recommended (by dedicated thyroid support groups) you have these levels checked yearly (even if you have to pay for these four key labs yourself). I last told a nephew this and he found his Vitamin B-12 level was low.

rexsan20 | @rexsan20 | Jul 30, 2022

What blood work is for the connective tissues?

Lori, Volunteer Mentor | @loribmt | Jul 30, 2022

In reply to @rexsan20 "What blood work is for the connective tissues?" + (show)

I found a good article by Cleveland Clinic on Connective tissue diseases that you might find of interest. It discusses several disorders, what tests are done and how a diagnosis is made and possible treatments.
https://my.clevelandclinic.org/health/diseases/14803-connective-tissue-diseases
After reading your bio, I see you have Sojourns, which is an auto immune disease. I’ve included our Mayo Clinic link to Sojourns for you. https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/doctors-departments/ddc-20353223
Many connective tissue diseases are also in this category. Are you concerned what you’re experiencing is more than Sojourns?

concernsinphoenix | @concernsinphoenix | Jul 31, 2022

In reply to @loribmt "I found a good article by Cleveland Clinic on Connective tissue diseases that you might find..." + (show)

I’ve not been diagnosed with sojourns, I’ve seen a rheumatologist twice and she has told me that I don’t have MCTD or lupus, sojourns was never mentioned. I did have elevated thyroid antibodies anti-thyroglobulin 70.0 IU/mL and anti-thyroid peroxidase 182.0 IU/mL, my TSH is 2.66 and my T3 and T4 also seem to be within normal ranges. I’ve been having some neck discomfort, mild collarbone pain, bi-lateral jaw tenderness and numbness on the left side of my face, mostly in the lower lip area. I had an ultrasound of my neck and collarbone area on Friday, but not the thyroid because apparently the new PCP I just saw recently didn’t specifically order that the thyroid be scanned.