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Date of last update: 10/12/2017.

Forum Name: Hematology Topics

Question: Very low ferritin, failure to respond to supplements, B-12

 skatermom - Wed Mar 25, 2009 9:00 pm

Can you tell me which direction to go? I have six daughters - the first four have had low ferritin, the first starting 8 years ago. I have always been suspicion of malabsorpion, always looking for answers. One daughter was as low as 16 ferritin. They also have low Vit. D (20, 21, 23). Finally I had my ferritin tested, and it was 6. I developed terrible symptoms - fog, lack of concentration, memory problems, spinning room, my brain felt like it was starving - and the others such as incredible fatigue, always cold, peeling fingernails, lack of energy to do anything but the absolutely necessary.

After paying a fortune for an MRI, I found information on the web about B-12 and Pernicious Anemia. My B-12 was in the 300's. I asked the dr. for B-12 shots. I was skeptical that I would feel a difference very soon. I noticed small improvements in the first couple of days. After two months on the shots, I can function again and even smile. I don't feel perfect, but I'm much better. I have also been taking iron - 65mg two or three times a day.

I finally got an appt. with a hematologist. I was so disappointed. She treated me like I was stupid. She said my blood cells were shaped correctly, so I couldn't have PA. She said low ferritin does not have symptoms, and that my B-12 wasn't low enough to cause me any troubles. I am so frustrated!! I have watched my girls for years suffer from symptoms with their low ferritin. The symptoms improve when the ferritin goes up. And, I KNOW I did not make up the symptoms I was having. I could hardly function. With the B-12 shots and iron supplements, my symptoms have gradually lessened over the past two months.

The doctors have told me I needed anxiety medication, or that it's my hormones. This is crazy! My big concern is to prevent my daughters from getting so terribly ill as I have been. I was hoping someone would help me connect my condition with my girls'. The adult doctors will not give advice on children, and the pediatrician is out of ideas. I have spent so much money on dr. visits and tests.

Can you give me any help?

New note: the hematologist' test results were that with 2-1/2 months of iron supplements (65mg/325 x 2-3's per day), my ferritin had dropped. It went from 6 to 16, and then to 14. I'm finally getting iron IV's for four weeks. This is great, but it's only a bandaid. I am also so terribly tired again.

Michelle Tew
 John Kenyon, CNA - Mon Apr 06, 2009 9:54 pm

User avatar Hi Michelle,

First, you need the assistance of a good hematologist. Second, you haven't seen one yet -- but you know that. It seems likely there is a familial anemia, very probably PA, and there is no definitive test for this, certainly not "your red cells are correctly shaped"! There is a lot of blood work that needs to be done, as well as the rule out of atrophic gastritis, which is commonly associated with PA. This is discovered (or not) via gastroscopy.

Your symptoms are all consistent with some sort of anemia, and you responded to supplements, though not dramatically. If you are found to be positive for PA, your daughters will need to be evaluated (and perhaps should be anyway) and followed. If any of you have this problem it's likey the rest do as well. Treatment is highly individualized B-12 injection, IM, and each patient is different in his or her needs in this regard, but the thing can be managed with proper followup and supplements.

First find yourself a hematologist who is interested in solving your problem. After that it should all start to get a lot better.

I hope this is helpful. Good luck to you. Please follow up with us as needed.

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