The hematologist has ordered iron infusions every 2 weeks for 6 weeks. But here's the rub - the hospital can turn me down because my hemoglobin is not below 10. And there's an iron shortage so they are reserving it for those truly anemic. If they refuse me, I can pay myself but it's very expensive and I am not working due to my health. I've been taking ferrous fumerate 2 and 3 times per day since November 2015 and my numbers don't move much. I had my ferritin up to 16 in march but it fell to 9 in April.
The endo put me on a prescription of 50,000 IU of vitamin D per week for 8 weeks, then said take 2,000 IU per day after that and retest vitamin D in 6 months. He also said to take 1,200 mcg B12 sublingual per day and 1 mg folic acid per day. The lab here no longer tests folate so he couldn't order that but says it goes hand in hand with b12.
I have an MRI for the adenoma on my pituitary at the end of the month to see if it's grown. Then we will talk about thyroid meds in July. He wants to see if my symptoms improve with the iron, if I can get it.
My last thyroid tests were in February
TSH 0.88 (.32-5.04)
Free T4 12.8 (10.6-19.7)
Free T3 3.52 (3.00-5.9)
The hematologist and endo are actually working together which is refreshing. I'm going to be frustrated if the hospital refuses the iron infusions because I feel like rubbish.
Written by
MrsBeasley
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Woah your levels are so low, you must be feeling terrible.
Ferritin, iron, vitamin D, B12 all need supplementing. Hopefully the hospital won't refuse you. Lay on how sick you are, make up stuff, say you keep fainting...anything to get treatment!
B12 needs to be 600 or over under 500 can start to cause neurological changes. In Japan they start to supplement patients at 500
My GP hadn't let on that I had low iron / B12 for years (throughout my 20's and 30's) without letting me know. It was only after investigating thyroid that I actually got the numbers and they had been pretty poor (to put it mildly). I wish they gave out 'amber warnings'.
I've just discovered a fancy new iron supplement that appears to be better absorbed as it contains cofactors and enzymes. It's expensive though. The 'interesting' added ingredients are riboflavin and betaine hcl. I looked it up and indeed, riboflavin up-regulates iron uptake, so it could just be that we all need more riboflavin if we're on iron supplements.
With regards to taking folic acid - I highly recommend taking methylfolate as it's far more easily taken up by the body and facilitates the uptake of b12. Blood levels are not the same as cellular levels. Folic acid will make it to the blood, but may not make it into the cells as easily (see link).
Cabbage has been shown (anecdotally) to remove iron from blood (both cooked and uncooked. My husband has the opposite problem - too much iron or iron overload. Eating cabbage brings his blood levels way down in a hurry. If you eat cabbage, you might try an experiment for 90 days, eliminating cabbage, or any cabbage-like vegetable (Brussel Sprouts, Cauliflower, etc.) from your diet.
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