Homocystine levels

[Saltydogs]

Has anyone been told that they have high homocystine levels? Is it common for APS?

[orygun66]

My brother who was just diagnosed with an extensive DVT had a high normal homocysteine level in addition to some gene mutation. My APS doc said most people don't get it tested and said it isn't very relevant essentially but I have read more on it lately and I am not sure I agree. Particularly since clotting runs in my family and I just had a heart attack and I believe elevated homocysteine levels can be related to that. Were you told anything else? I am going to follow-up with my hematologist on it especially regarding if any of my kids should have any tests run. My oldest son's friend just had a heart attack at age 21 and now knows he has a clotting condition.

[Saltydogs in reply to orygun66]

I know because I have been trying to read more about it and basically I have read the exact same thing that doctors don't usually test for it. Interestingly, I have never seen a hematologist before and have always been treated under a rheumatologist.. The reason I found out was my rheumatologist left and so as I have been in search of someone who knows about APS (which is near impossible in Rhode Island) and ended up with a hematologist. I have only had one visit with him and he did a bunch of tests, including all of the APS antibodies (which I have always had high positives on all three) a d-dimer (not sure what that is), CBC, Metabolic panel, Sed rate, LDH, Fibrogen, Factor V Leiden Mutation, Antithrobin III, APTT, C-reactive Protein, etc. He called me and has put me on Folic Acid. I was a bit miffed when he ran all the test but now I am getting a bit more nervous. I will keep you posted with what I find out. I think you ought to ask your hematologist to run a test to see what the level is. From what I have read also, the doctors don't look for it because there is no prescription that they can prescribe, except the Folic Acid (pharmaceutical) and they don't educate doctors about it....Majority of them get education from big Pharma. Bottom line, medicine is a business and studies are done mostly by pharmaceutical companies to make money and funding isn't available.

[Hughes-Comrade in reply to Saltydogs]

My hematologist has ran the:

HOMOCYSTEINE,PLASMA,TOTAL

Result: 8.2 umol/

Normal levels: L 3.5 - 10.4 umol/L

[ndstephens49]

In the 1990's I was found to have one copy of the homocysteine gene. Can have one or two copies. This plus a couple other clotting factors (Lp(a), 2b3a platelet aggregation factor) is why I was put on Coumadin in 1996. APS not confirmed at this point. Elevated homocysteine levels can cause severe clotting problems. Nancy

[Saltydogs]

The doctor has put me on Folic Acid....we will see what happens. I know that I have a very healthy diet and eat whole foods every day. My sister has Hashimotos and I have been having a lot of stomach issues which are not diagnosed because I haven't found anyone who is really good with autoimmune issues. I really have been trying to stay away from gluten especially after reading posts on this forum, but have cheated a bit. I went to a new rheumatologist who told me I should be seeing a hematologist because I don't have Lupus....aren't they all autoimmune issues?? None of the doctors are well versed in all these things. All I can say is that I have been trying to convince the doctors that if my INR is 3 or below (actually 3.5 or below) I become quite dysfunctional and feel terrible. I do have high positives for Anti La, Anti Cardilopin as well as Glycoprotein...and they have continued to be high but we will see what the new doctor finds...This forum has been extremely educating for me and has shed some light on this disease. I really appreciate that I have found you all! I will ask the hematologist if he can test for Celiac as well as Sjogrens. I seem to have many of the symptoms of both. I have a diagnosis of APS and UCTD. I'll keep you posted about that Homocystine result and will let you all know the significance, if any to APS. Thank you!

[MaryF Administrator in reply to Saltydogs]

It is possible to have gluten intolerance without having fully blown Coeliac Disease. I have this, I also had bottom of the range B12 results, better since I supplemented daily sublingually. I did not get tested for Coeliac DIsease I just cut out gluten totally and the results speak for themselves, actually although my gut is slightly better, my worst symptom was very extreme sneezing and a running nose, which went by 80 percent on eliminating gluten from my diet. MaryF

[Saltydogs]

I was in the middle of replying to you and hit something so I apologize if you got a crazy reply! I have been reading and have read about a gene mutation which is what I'd like to ask my doctor about....not too sure why he ran the tests in the first place?? Do you think that they tested for the gene while looking for APS? Is there anything in particular that you have been doing and how do you feel generally? Did you have an incidence that brought you to find out about thee gene?

[orygun66]

Yes some doctors lean toward whatever their sales rep suggests when it comes to drugs. I have seen that happen from a nurse perspective. The d-Dimer is a test usually ordered to determine if it is likely you have a clot somewhere. Problem is, there can be false positives. Mine was elevated when I was seen for chest pain so I was sent for a CT of my chest before my cardiac enzymes came back positive for a heart attack. And there were no clots in my lungs. I think I will ask my hematologist about drawing a homocysteine level. And figure out where to get some genetic testing done. Interestingly enough my brother is seeing a vascular doctor regarding his DVT. That isnt the type of doc I would have chose though I did see a vascular surgeon to put in a IVC filter pre-op.