Patient Comments: Homocysteine - Elevated Levels

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

Comment from: Bluey, 75 or over Male (Patient) Published: April 28

I asked my general practitioner for a test of homocysteine levels recently and when the test results with others were returned I was advised my homocysteine levels were about normal. I asked for the actual numbers and was told 19. I guess this is a problem in Australia, so I am now attempting to do something about treating the homocystinuria myself. I have always had fairly low levels of cholesterol, although my lipids have been a bit high. Having had 2 lots of CABGs (coronary artery bypass grafting) 12 years apart, plus a small stroke after my first CABG surgery, plus DVT (deep vein thrombosis) and pulmonary embolisms, plus a stent and having had bundled branch block and atrial fibrillation then a pace maker and other problems, I really believe that it is time I recommenced treatment for high levels of homocysteine.

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Comment from: jollio, 75 or over Male (Patient) Published: June 24

I always had normal homocysteine levels up to age 76 but then I had non-ST heart attack preceded by couple of hours of rapid heat beat with atrial fibrillation. Then a month after the event it has remained elevated despite taking 1200 mg of folate a day, and it has been staying abnormally high for past six months, but my CRP is normal and I have excellent lipid profile 134 total cholesterol, 69 LDL, 60 HDL, and 29 triglycerides. I wonder if stroke is likely in the near future unless I get it down, or if it is just a fluke marker.

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Comment from: Wilson, 55-64 Male (Patient) Published: July 24

Niacin did raise my homocysteine levels so I stopped taking it. I lowered my homocysteine levels to normal by taking N-Acetylcysteine (600 mg twice a day) with methylfolate (B-9), P-5-P/pyridoxal-5-phosphate (the active form of B-6 pyridoxine).

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Comment from: Retired Surgeon, 35-44 Male (Patient) Published: December 29

My first symptom of liver disease was fatigue not relieved by rest.

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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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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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