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 ✨️