Hemochromatosis and B12 Relationship? - Pernicious Anaemi...

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Hemochromatosis and B12 Relationship?

BelleHH
BelleHH

I am a 45 year old female. In the last 6-8 months I have experienced following symptoms: cessation of periods, tinnitus, heart palpitations, anxiety, parasthesias, joint swelling in my hands and changes in my hair texture. I have had no prior health problems.

In the last few weeks, I’ve learned I have 2 copies of the H63D gene (which makes me positive for the hemochromatosis) and that hemochromatosis probably explains at least some of these symptoms.

At some point shortly before hemochromatosis diagnosis, my endocrinologist tested my B12 levels which were in the low normal range. My iron levels, however were elevated (my serum iron (195) and iron saturation (78%) were above the normal range, although my ferritin was Normal (66).

I began taking b12 supplements and my GP ordered genetic testing for hemochromatosis based on my iron tests.

After the gene test came back positive I had my first appt with a hematologist who administered a B12 shot (bc of the low B12) and recommended phlebotomy (venesection) to reduce my iron levels. She administered another iron test that day (after the B12) which came back all normal.

I feel Much better after the first phlebotomy and I am interested in having another done soon.

I am concerned that the iron levels have created a problem with my pituitary gland which caused the problems with my periods. Some of my reading shows that this specific mutation places me at risk for neurodegenative disorders and I have 3 grandparents who had strokes, one of whom had Alzheimer’s. Since the pituitary is in my brain, and I’ve had skin problems on my head, I’m worried.

I am also concerned that the low b12 is related to the Hemochromatosis and that the b12 shot I had before my iron tests on the same day interfered with the lab results.

Does anyone know whether the supplements or the B12 shot could mask the iron or ferritin levels shown on the blood tests or vice versa? Also, does anyone know whether high iron makes it more difficult to absorb b12. Because of the parasthesias in my hands (also sometimes legs and feet) I also want to rule out pernicious anemia

Thanks in advance.

2 Replies
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I'm not an expert, but I am not aware of any connection between B12 and hemochromatosis.

I do know, from personal experience, that low B12 can affect fertility and cause periods to stop.

This is just my opinion, but it sounds like the tricky part in managing your hemochromatosis is that the blood draws to get your iron levels down will, naturally, also reduce other blood making components including B12 and folate. You might be feeling great after the first one (especially with the aid of the B12 injection), but if your other levels aren't measured and managed well, you could end up with an anemia (of which there are several kinds).

I once had a co-worker who was always a high energy person. She could never relate to a person like me, who experiences a lot of fatigue. She thought it was something I could just snap out of if I wanted to. Then she found out she had hemochromatosis and started getting blood draws to reduce her iron. The treatment worked as far as getting her iron levels down, but after a few draws she realized that she had fatigue. It took something that extreme for her to finally understand what fatigue is. I have no idea what component her treatment threw out of whack, but if it happened to her, it might happen to you also. So just be aware that removing blood reduces one problem while possibility creating or exacerbating others.

Hi,

"Because of the parasthesias in my hands (also sometimes legs and feet) I also want to rule out pernicious anemia "

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I am not medically trained.

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