Afraid will not be taken seriously

I was hoping that I could have more definitive imaging done at Vandy before my appt. Received a call this AM from a Vandy Scheduler who informed me that all imaging and biopsies must be done and resulted before my visit. I could try to get an appt with a different ID MD in our Infectious Disease Group, but I'm certain he has already shared my case with colleagues and flagged my chart as "crazy". After US yesterday, I have to have biopsies to determine their etiology so I can get in to see the correct specialist. (NTM Infection vs Fat necrosis vs other Etiology). Just exhausted from having to fight to get medical care these days.

@beth71
Have they done ultrasound or any surgery? Is your condition really painful/uncomfortable?

It does sound like a complex condition to treat but extremely important to get the right doctors and care team who want to help treat you.

Have you already read these articles?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6779577/
https://www.ncbi.nlm.nih.gov/books/NBK430806/
https://www.jaadcasereports.org/article/S2352-5126(21)00775-X/fulltext
https://academic.oup.com/cid/article-pdf/doi/10.1093/cid/ciaa241/33468217/ciaa241.pdf
https://www.atsjournals.org/doi/epdf/10.1164/rccm.200604-571ST?role=tab

Thx for sharing those articles. I had not read the last 3. I finally had an US on Thursday that was ordered by my Rheum. The nodules in my left outer upper thigh were measured and the Rad MD did not give a diagnosis, but mentioned fat necrosis as a possibility. That just added to the diagnostic craziness. I have no clue of what infection looks like on US in comparison to possible fat necrosis. As for pain, I do have pain when lying on my sides. Hard to get comfortable to sleep. No way to know what they are, biopsies must be done. Not sure who she will decide to send me to.

So frustrating…

To apriljeff, I have been reading this thread and thought I had responded but can’t find the post from me!
Anyway, to address your concerns, a high TSH, regardless of T3&T4 results should be followed up with anti thyroid antibodies to check for Hashimotos thyroiditis, autoimmune destruction of thyroid gland. This should be treated with thyroid replacement and would probably make a significant difference in your fatigue and possibly hair loss.
An ANA of 1:160 is considered clinically significant. You can have lupus or other similar AI disorders even if all the other antibodies in the more extensive panel are negative. A diagnosis is based on symptoms plus lab values. Some Drs want “textbook “ cases to diagnose anything so it’s important to have ALL labs run that may provide clues. Examples are urinalysis for protein, blood and casts, sed rate and CRP for inflammation, complement related to AI disease and inflammation, a repeat ANA if only 1 has been elevated, and the full panel for rheumatoid arthritis and other related AI markers. Metabolic panel, eGFR for liver and kidney function and CBC to rule out anemia and infection. Xray or imaging as needed for joints and other symptoms, such as chest xray if pleurisy is a symptom. The most important piece is a thorough history of all current and previous symptoms and family history of autoimmune disorders. You may want to look at a list of lupus (the quintessential autoimmune disease) symptoms and make a list of all that apply to you. I think you meant creatinine has been high 3 yrs, which is significant for kidney issues and related to possible lupus. Your fatigue, hair loss, joint pains are meaningful symptoms. If you get any rashes, a biopsy should be done, which is sometimes the quickest way to a diagnosis. I wish you luck and encourage you to be persistent, proactive and do research so you can approach this with knowledge , be assertive and advocate for yourself. Please keep us posted!

I would start by eliminating certain foods like gluten, soy and dairy. Those 3 ffoods are often recommend to stop eating if you have an autoimmune disease. I have Hypothyroidism with Hashimoto’s and I’ve eliminated those 3 foods and I’m also taking Synthroid (a thyroid drug for Hypothyroidism) and the inflammation in my body has diminished. I’ve done this food elimination diet with other foods as well, after having a food sensitivity test done. I have a very sensitive colon, as I had 18” of it removed due to severe diverticulitis. This is why I had the food sensitivity test done, so I won’t screw it up again by eating the wrong foods. I had the food sensitivity test done by a local chiropractor who is also treating patients with food sensitivities. A Functional Medicine Doctor can do this for you. Google them in your area. I wish you good luck and good health!

Update 2: oh man where do I start. My ib ran hermone test and prescribed prestergon. While the integrative MD looked into my labs, he prescribed levothyroxine 75mg, bunch of supplements and wants to put me on 90 days of whole 30 diet. I have not taken any of what they given me because am terrified of taking levothyroxine for a tsh thats only 6.5. I went glutin free for 5 weeks now, and have seen a minor improvement in energy but my joints still hurt. I am weighing my options before taking anymore medications.

@apriljeff I understand your reluctance to taking a new medication. I think many people are, including me. I had it take a new one last night and I sure didn’t want to. But, I looked at myself in the mirror and said, “you’ve been through so much already, yes you can take the pill.” I have to rely on the strength and knowledge of my doctor, and she’s an excellent one. I took the pill and nothing bad happened! So I’ll take another tonight,
You have been dealing with this for 5 years and you haven’t quit. That’s a real testament to how strong you are! Your doctors only want you to get better, so try what they recommend. (The dose is 75mcg, not 75mg, a HUGE difference). What’s the worst thing that could happen when you take the pill(s)?

@pb50 do you take your Vitamin D supplement on the day you are having the blood test?

I honestly cannot give you a logical answer for why I don't want the pills. I think it has to do with once you start taking levothyroxine, you will have to continue taking it for the rest of your life. My be it has to do with me thinking my tsh isn't too high to start on medication.

I believe so, it's a habit to take it in the morning as soon as am awake