Patient Comments: Homocysteine - Elevated Levels


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

Comment from: Richie mc, 45-54 Male (Patient) Published: May 14

I was diagnosed with homocystinuria nearly ten years ago at the age of 38. I was prescribed folic acid, B12 pyridoxine and a statin. I also have severe peripheral arterial disease. I have had regular blood tests over this time which came back positive for high homocysteine levels. That was until 2018 when I asked to come off the medicines. I agreed to a further 3 tests 6 weeks apart the first with traces still in system. The second with none and third showed my levels perfectly normal. I have had a further test confirming this.

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.

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.

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).

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

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

Comment from: helen, 35-44 Male (Patient) Published: October 13

My LDL cholesterol is 172 and my HDL is 51.

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!

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.

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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