Thank you all for the responses so far. To answer a few questions in one post, let me start by saying I'm learning as I go, and I don't yet fully understand the difference between Ferritin versus other Iron deficiency (maybe there isn't any?). I just know my Ferritin level was down to 7 and they quickly started the IVs. My other "regular" Iron lab panel had some anomalies, but nothing was horribly out of range, which is why I assume this hasn't been caught before now. I will be learning more from my hematologist in two weeks. I'm 46 years old, and my genetic issues include being iGA deficient, so I'm very prone to bacterial infections. On the heart side, I am positive for both the APOE 388 T>C and the 526 C>T mutation, which they say makes me high risk for Hyperlipidemia/Atherosclerotic Cardiovascular Disease. My genotype is APOE e2/e4 and my biological father passed away at 62 with massive heart attack as well as several family members with heart disease.

I had severe case of mono when I was 10 years old and recent blood work shows I have chronic Epstein Barr Virus as a result of it never fully going away. This diagnosis is debated and not supported by Infectious Disease doctors, but my PCP and other providers firmly believe it has contributed to my weak immune system and want to start me on a supplement regemind. I have minimal Hypothyroidism and have many thyroid nodules, which resulted in a right thyroidectomy and they suspect Hashimotos, but test are inconclusive. I've had severe endometriosis my whole life, with multiple surgeries to ablate it and finally a partial hysterectomy last year.

My Carcinoid NET tumor was discovered 5 years ago and it was an atypical case that was only found my me demanding to have a colonoscopy to prove that I wasn't "just having IBS again". They found a very small 2 cm tumor in my Ilium and they thought for sure it was only Stage 1. During surgery to remove that section of my colon, they removed 19 surrounding lymph nodes found it had already spread to 2 of them, which shocked the doctors. The tumor never showed up on any scans and none of my blood work was ever elevated like in typical cases. This iron deficiency discovery is a similar situation where it was my insisting on more tests because my fatigue was getting so bad, sores on tongue increasing, and freezing hands/feet. I've had 2 blood clots in my legs, and one was a DVT. We've thought the swelling in my left leg was just due to damaged veins, which I do have from the blood clots, but turns out the Iron infusions have resolved the swelling! I think I'm more excited about that than the reduced fatigue!

I think that about covers most of the important history, and the biggest lesson learned is to listen to my body and don't give up when I know I'm not fully being heard.

@hopeful33250 I'm tagging you on this conversation. I think you'll want to follow along and to meet @jenchaney727 fellow NETs member.

Also Jen, please meet other Connect members, like Teresa, who are sharing about Carcinoid NETs here http://mayocl.in/2cK4PdN. Zebras in a friendly herd. 🙂