Tips for Getting a Proper Diagnosis of an Autoimmune Disease

It’s the manner in which we use our modalities of medical help in this country that is behind the times. I am able to travel out of the country occasionally and help there is a different world. Other than pulling up stakes and leaving my homeland, I think the idea of seeking legitimate alternative or holistic care might be a suggestion.

I too have Hashimoto’s and hypothyroidism. I have researched on my own and found that eliminating certain foods helps with that “off balance” feeling. I’ve eliminated gluten, dairy and soy and feel so much better. It also took the bloat away from my body. I find it so odd that your doctor’s wouldn’t tell you that. It really does make a difference, try it. You have to do your own research these days. Our doctors are not helping us…

Yes as you already are aware. I finally found a urologist to give a 24 hour Urine test after 2 years of trying to check for kidney stones and found that I'm losing large amounts of urinary sodium, calcium, magnesium, chloride, and high ph with also having low levels of phosphate and urea nitrogen...still no answers as to why. Three months ago my employer took all my hours from me and sent me short term disability papers but I had no pcp nor dx. So from having no income my health insurance is suspended for non payment and I don't know what else to do anymore. I live in a state that makes it very difficult to get any sort of help or medicaid for people that cannot have children and/or a caretaker for someone...very depressing. And I believe I may have a life threatening condition.

talk to a social worker

This all sounds so familiar. PCP no longer makes any diagnosis. they just send patient to a different referral for each symptom and no one person puts it all together and checks meds. ITS almost like we need medical training to take care of ourselves.

It's been over 2 years on my search for a diagnosis. Started with blood cancer diagnosis (polycythemia vera, PV) which the oncologist said caused my Hemoglobin to get too high. They did genetic testing, I was Jak2 Neg. Less than 5% of those with PV are Jak2 Neg. I went to a 2nd oncologist, he felt the same as first and same diagnosis, PV. I had 5 pints of blood taken in a pretty short period of time, less than 2 months. Every time I went in I questioned that I had PV and I still felt like crap, he NEVER listened to me. I let him make me sicker than when I started and when I was seeing a cardiologist because of my BP craziness going on & shortness of breath issues. He took the time to listen to my story/concerns thar I don't feel I have blood cancer. He recommended a 3rd oncologist I went to see.

This oncologist, listened to me! What a concept, I was so happy because he said, I have a hunch you don't have it either and the only way to know definitively is a Bone Marrow Biopsy. Thank you thank you thank you 🙏

No one wants a BMBX, they hurt, but so does having babies and I had 3. Anyway, it was scheduled in a matter of days, they let my friend come in and all 3 of us talking really helped keep my mind off the pain. It was over in about 10 mins, it really wasn't all that bad. Hurt like hell for quite awhile in that spot but it goes away.

I 💯 did NOT have any kind of blood cancer. Shame on the 2nd oncologist (and first).

Now I'm back to square one with horrible fatigue, joint aches like I'd never experienced in my life and I have a high threshold to pain.

So far my hemoglobin has stayed in the normal range. We may never know what caused it to go up so high.

Moving ahead, happy I don't have cancer but why do I still feel like total crap.

I kept saying based in my Mom's AIs - PMR, GCA and Raynauds and she also had hypothyroidism which at the time I wasn't aware of. My SED rate had been tested several different times, always in the Norm range. I'd stopped eating gluten & dairy which are notorious for causing inflammation. Anyone with AIs should stay away from both.

In Jan my TSH was on the high Norm side, which for all I know is too high for me. I don't believe the ranges made up are accurate for ALL different body make up, our DNA, genetics etc.

Then I went to see a Rheumatologist, with the amount of pain I feared RA or Lupus. The doctor was VERY thorough with her testing, 6 viles of blood worth of testing. I was very impressed, so was my GP. My TSH number shot up crazy high which meant I had hypothyroidism, then the genetic tests started coming back and it was clear I had Hashimotos which causes the hypothyroidism. Wahlah!!

With the numbers as high as they were the docs said no wonder you were extremely fatigued and in so much pain. I started on the Synthroid meds right away to work on getting my numbers back down. I was told I should feel much better by Thanksgiving. I almost cried I was so happy.

So very grateful for an answer, we may never know why my HGB shot up the way it did and I'm at peace with that. I'm looking forward to getting back to my usual active self and working again to help our seniors and their families.

I know this was long, if you've read this far, good for you. I've got wicked ADHD and probably would have dropped off many paragraphs before 😉

Don't ever give up trying to get an answer/diagnosis and get 2nd, 3rd, 4th opinions as needed. There are a lot of bad docs out there that don't listen to women very well and diagnose based on male criteria and are too "text book". Not everything is text book, listen to the symptoms and put the puzzle pieces together.

Every journey is different ✨️

What is LDN?

Congrats on finally getting someone to listen and get the right diagnosis.

Thanks for the post. It’s great for others to see how hard we work to find answers…a rheumatologist diagnosed my Fibromyalgia years ago. As unique as each human body is so are medical professionals. 🙏

I would love to partner with a physician to investigate the possibility of having some sort of autoimmune problem. Unfortunately, in every family medical group I have been associated with, I have never seen a doctor...never. only PAs or CRNPs. This is going back thirty years. My pain doc has little or no interest in looking into other possible causes of my chronic pain. With ten to twelve patients waiting in various rooms at any given moment, it's no wonder. Medical care has become an assembly line. Wham, blam, here you go. Next! He doesn't even know my name after more than a year. Almost hilarious if it wasn't so sad.

We do. Fortunately, AI can be very helpful for this. I've used Google's Gemini and it pretty much confirmed my suspicions of the top 3 conditions my daughter might have based on symptoms, labs, and imaging.