Hematologist (Blood Specialist) Questions Blood Disorders

How urgent is this?

I’m a 50 year old white female, 125 lbs, and have a 10 year history of never-ending chronic migraines plus extreme fatigue, purple hands and feet, restless leg syndrome, tinnitus, and within the last few years, a couple of seizures, agoraphobia, panic attacks, depression and, in Dec. 2018, I started to have uncontrollable episodes of rage. Awesome childhood, parents & siblings I am very close to, a terrific husband of 22 years & two daughters - one is a senior, the other in her 3rd year of college. Most of the above symptoms sounds like I’m anemic but hemoglobin has always been within range. I just returned from the Mayo Clinic where I had my ferritin and folate levels also checked. Ferritin was 5.7 & folate was 3.2. Iron level was 10. I was perfectly fine until I had chicken pox at age 40. Not sure if that triggered the low ferritin, folate and iron or not. My doctor at Mayo said I should skip the iron pills and do an infusion ASAP. My husband & I have tried our hardest to get to a hematologist and have a referral from my GP however the soonest appt is a month out. Are the low levels dangerous enough that we need to maybe be louder? I’ve had the same GP for over 12 years and have “complained” many many times that I feel like I have mono again (had it in HS). But ferritin was never checked, just regular CBC where hemoglobin was within range. Then it was dropped basically.

What else can I do to see a specialist ASAP? I feel I have not been a good mother or wife for the last decade and want to feel like myself again! Plus we had a tornado completely destroy our home 12/26/2015 - yes the day after Christmas - welcome to Texas - and although we were not at home, the psychiatrist at Mayo diagnosed me with PTSD. Never even crossed our minds since we didn’t live through the actual tornado. But made perfect sense once she explained why.

Thank you for any feedback.

Female | 50 years old
Complaint duration: 10 years
Medications: 1 mg Klonopin pm - REM sleep disorder, adderall (for hypersomnolence), Zoloft, Emgality - migraine, relpax as needed, omeprazole 40mg for GERD, pravastin 20mg
Conditions: Migraine, extreme fatigue (daytime hypersomnolence) , restless legs, tinnitus, depression, anxiety, panic attacks, REM sleep disorder, chronic GERD, high cholesterol (hereditary)

3 Answers

I think you need Celiac disease and stomach acid testing. You may also need stomach biopsy to see if you have atrophic gastritis. I am not sure about folate, but iron and B12 are acid dependent nutrients, which means they depend on you making enough stomach acid to allow their absorption from your food or supplement. And BTW, I consider your B12 to be low, although it's within range.
I am sorry you have such fatigue. Seizures are not a sign of anemia, except maybe a severely low hemoglobin. Hemoglobin is the best measurement of anemia. I do not think this is an emergency. Try oral iron supplements and see if you feel better. If not see a hematologist to discuss these findings. If the hematologist cannot put this all together I would have you see a rheumatologist about your restless legs and purple extremities. I would also see a clinical psychologist about your agoraphobia, panic attacks, rage and depression.
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(1) My background is in internal medicine--graduated from Baylor College of Medicine in 1980, board certified in IM since 1984, and my practice has involved both office and hospital patients.
(2) Low iron stores mean that you're either losing it somewhere or you are not absorbing it or both. If you still have periods and they are heavy, see your gynecologist. For gastrointestinal losses there's a cheap test--stool samples for blood--and it can be can be done this week. You mark the little cards, and your doctor should be able to test them right there in the office.
(3) Unless your periods are very very heavy, ask the GP to refer you to a gastroenterologist, who should be available sooner than the hematologist. He (female ones are pretty rare) will probably want to scope your esophagus, stomach and small bowel to look for ulcers and also for atrophic gastritis which interferes with iron & vitamin B12 absorption. Since you are 50 he will probably do a colonoscopy at the same time (Hint: some of the prep solutions you drink for that are very expensive, so complain if he uses one of them).
(4) If the GI doctor turns up nothing, then the hematologist can wait UNLESS your hemoglobin is less that 8 or hematocrit less than 24.
(5) The 10-year history of diverse problems--me, I would go to the smartest rheumatologist you can find. That may require a trip back to Mayo.