Patient Comments: Homocysteine - Elevated Levels

Do you or someone you know have homocystinuria and elevated homocysteine levels? Please describe your experience.

Comment from: Pathways, 45-54 Female Published: October 06

I'm a 47 year old female - always been slim (between 53-56kgs) and always had a healthy lifestyle. After feeling generally unwell for a number of years was diagnosed with hyperhomocysteinemia 3 years ago. I'd been back and forth to my GP for various blood tests to try to determine why my iron, folate, Vit B's and D etc etc, where always low. Supplements weren't helping. My folate levels were basically non-existent! My GP sent me off to a blood specialist when my blood results came back with elevated homocysteine levels. The specialist wanted to test for coeliac disease and when the blood results came back positive I was sent off to have an endoscopy which confirmed the disease. That was 3 years ago. With 3-4mths of being on a gluten free diet my levels were all on in increase, and with increasing folate levels, my homocysteine levels dropped. I was monitored for 12 months, and now just have an annual blood test to make sure everything is doing what it's supposed to. Gained a couple of kilos and stable at 60kgs- and I've never felt better!

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Comment from: 45-54 Female (Caregiver) Published: August 23

My wife 53yr old when went to gynecologist for pain in left side of and which is on and often subsides with pain killers. At that moment was asked to get serum homocysteine and B6 found to have homocysteine of 18.3 mmol. She takes daily multivitamin supplement as well sprouts leafy vegetables regularly.

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Comment from: 65-74 Female (Patient) Published: October 11

I am a 71 year old female. A number of times, I was hospitalized with blood clots. The last time I was sent for a homocysteine blood test I showed I had elevated levels. Due to family history, whereby my grandfather almost died when a clot went to his lung, and a long clotting history of my own, I was placed on folic acid therapy. So far so good. It has been almost a year without the problem.

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Homocysteine - Lowering Levels Question: What supplements or other lifestyle changes have you found effective in lowering your elevated homocysteine levels?
Homocysteine - Testing Question: Please describe the decision to test you or someone you know for blood homocysteine levels.

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