OT: Becoming obsessed with medical test results

[Nuggie's Auntie]

Originally Posted by Lori_Michigan

I haven't read the rest of the replies, but I too applaud the original poster for diligently researching the results. If I hadn't followed my bloodwork over the last three months, I wouldn't have ever figured out why I developed a blood clot a few months ago on vacation.

Turns out it was a perfect storm of severe vitamin D, vitamin B12, and iron deficiencies, but none of this was reported back to me by my doctor. "Seems a bit low" was all I have heard for 10 years. It took an ER doc to tell me he thinks I have malabsorption from taking too much ibuprofen and a gluten intolerance, and a few years of being a vegetarian, which totally ruined my stomach acidity and b12 level.

I followed the numbers go down and down through the years via my bloodwork (I was able to go back 15 years into my lab results) with both my white and blood cell counts going in the wrong direction, and my iron and vitamin D just barely in the normal range.

I also bought a 23 and Me genetic test with a health panel -- turns out I have both the MTHFR genetic mutations for not methylating folate and b12, and I have two vitamin D genetic mutations so I don't retain vitamin D properly. A complete genetic mess thanks to my northern European genes!!

I researched all of my declining bloodwork and my genetic mutations and changed my diet completely, in addition to high doses of b12 to try to get out of this deficiency. Hopefully in a few months it should help the anemia, and which should eventually help with my blood clotting tendencies.

You really have to be your own advocate especially when your doctor isn't really looking into oddities. For me it was a decade of odd symptoms before I figured out it was b12 and vitamin D all along -- I even thought I was in menopause!

Lori, wow, that's fascinating! So glad you were able to figure it out! Is there any treatment that can help? I understand the effects of b12 deficiency are not reversable...

[sherry7899]

I had low B12 from.taking a medication for acid reflux. I got four B12 shots spaced a week apart, and my level is back to normal. I am also taking a supplement daily.

[Gams]

My doctor recommended I take Centrum Silver vitamins. I just saw something on t.v. saying excessive vitamin B has been linked to nerve damage. I checked my Centrum bottle and it said its B12 is 833% of the RDA. I’m picking up a prescription tomorrow so going to run this by the pharmacist.

[Lori_Michigan]

I'm hoping that liquid methylated b12 in high doses for the next month help. I can't do the shots because my genetic mutation can't methylate them correctly. Then I move on to methylated folate (not folic acid). It's a severe deficiency because of my genetic mutations, so who knows what will actually work.

My lesson is always pay attention to bloodwork and question anything that seems off!

[ddj]

Lori, my B12 levels got really high when I was on synthetic B12. As soon as I found out I have the MTHFR snip, I switched to methylcobalamin and my levels came down into the normal range. An herbalist I saw told me the reason my levels got so high when I couldn't utilize what I was taking was because I couldn't utilize it and it just built up in my blood. So having the genetic snip doesn't necessarily mean your levels will be (or stay) low.

I take methyl folate, but my lab levels are still high. That would indicate I'm getting folic acid from something, but I don't know what unless it's something I am eating. I don't take any other supplements that contain it.

Taking the right supplements hasn't helped me in any way (symptom-wise) but I hope it helps you.

I also have to take Vit. D to stay in the optimal range. Like you, doctors thought I was just fine because I was within the normal range. They don't pay any attention to optimal ranges. You are correct - you have to keep up with your own labs and educate yourself. I've been keeping copies of my labs for years. As long as you're in the normal range, doctors don't worry. They don't pay attention to how your levels change over time.

[Betty Boop]

Originally Posted by Gams

My doctor recommended I take Centrum Silver vitamins. I just saw something on t.v. saying excessive vitamin B has been linked to nerve damage. I checked my Centrum bottle and it said its B12 is 833% of the RDA. I’m picking up a prescription tomorrow so going to run this by the pharmacist.

Are you taking Centrum Silver for Adults or Centrum Silver for Women?

I have the Centrum Silver for Adults and the B12 is 417%.

[Cowgirl32]

I'm gluten intolerant and had a tendency towards hashi's. Anyways, I didn't feel as good as I knew that I could. I was my own advocate; was I a little obsessive? Yes, in retrospect. But it got me to a better place in health for me. I was within 'normal range'. Having antibodies against your thyroid, or tissue. Isn't normal- for me in my mid twenties. It was a precursor to autoimmune.

I'm glad I didn't accept higher than normal. But honestly, if you feel good and at your best, don't sweat it. Count it a blessing. If you have that gut feeling, I need a second opinion... heed that. But live life. Don't let it steal your joy.

[Gams]

Carol, I take the one for women.

[Lori_Michigan]

Originally Posted by ddj

Lori, my B12 levels got really high when I was on synthetic B12. As soon as I found out I have the MTHFR snip, I switched to methylcobalamin and my levels came down into the normal range. An herbalist I saw told me the reason my levels got so high when I couldn't utilize what I was taking was because I couldn't utilize it and it just built up in my blood. So having the genetic snip doesn't necessarily mean your levels will be (or stay) low.

I take methyl folate, but my lab levels are still high. That would indicate I'm getting folic acid from something, but I don't know what unless it's something I am eating. I don't take any other supplements that contain it.

Taking the right supplements hasn't helped me in any way (symptom-wise) but I hope it helps you.

I also have to take Vit. D to stay in the optimal range. Like you, doctors thought I was just fine because I was within the normal range. They don't pay any attention to optimal ranges. You are correct - you have to keep up with your own labs and educate yourself. I've been keeping copies of my labs for years. As long as you're in the normal range, doctors don't worry. They don't pay attention to how your levels change over time.

That's great to know! I'm glad to know I'm not the only one! I tried methyl folate last week but my b12 is still so low that I had a terrible reaction to it. So that was my key indicator that I need to build up some b12 reserves before going forward with that one. I had always suspected my vitamin D levels were wonky, since every September I would start with terrible headaches and gain weight. By February I always felt absolutely horrid.

When I went to the ER for my blood clot in my leg a few months, it was the ER doc who suggested that my stomach acid may be low and that my CBC blood panel numbers were so low that it may be due to malabsorption. I had been taking a ton of ibuprofen from so many headaches and not really eating the greatest (not even a multi vitamin for a few years) and he suggested that I get a genetic test to see what I could be prone to. So all in all, I'm grateful for that blood clot!

I can't believe how many symptoms of the MTHFR mutations that I've had for so many years and how my doctors have just swept it under the rug since the blood work has always been just barely in the normal range. I'm really glad I've gotten this testing done since now I know my son has it too, and hopefully he won't have to suffer for so many years.

[Judith L]

Originally Posted by Gams

My doctor recommended I take Centrum Silver vitamins. I just saw something on t.v. saying excessive vitamin B has been linked to nerve damage. I checked my Centrum bottle and it said its B12 is 833% of the RDA. I’m picking up a prescription tomorrow so going to run this by the pharmacist.

Gams, I'm pretty sure that it's only vitamin B-6 that one has to be careful about as regards nerve damage. And on the other hand that one needn't worry about excessive B-12, as there is no established upper limit (UL) for it. I use Consumer Labs for my vitamin and supplement information and I take Walmart's Equate version of Centrum Silver Adults 50+, both of which are recommended by Consumer Labs.